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B12 deficiency – what the numbers mean

I just need to take a minute and discuss what the results of your B12 blood tests mean.  Recently I have had 2 people from my personal life who have been diagnosed with B12 deficiency anemia and I am shocked at the difference between my treatment and theirs.  They weren’t informed of the severity or the potential dangers associated with this condition.They are both women in their late 30′s and were both diagnosed with B12 deficiency anemia.  Let’s assume that they had their homocystine and methylmalonic acid levels checked and they came back elevated.   They both had B12 levels in the low 200′s and they were both treated with a “mega-dose” shot and told to take supplements.  That was it.  What worries me the most is that they are from different parts of the country, have different doctors.  This should not be a standard treatment for B12 deficiency.

According to both my doctor and my neurologist ( and I have read the data myself as well) once your B12 levels fall below 400 you can start to feel symptoms and the lower the number goes, the worse those symptoms get.  Officially if your B12 results are 200 or less you have B12 deficiency.  Again, both my doctor and neurologist have said that number should be raised to 400.  Based on my experience I would definitely agree.  I had lots of symptoms, and as my levels were falling I got worse and worse.

It usually takes a long time for you to start feeling the effects of B12 deficiency, which means that damage can start to occur in your body with out you even knowing it.  You need to get your levels up as soon as possible so you can start to heal any damage that may have been done, if it’s even possible.  Sometimes the damage is irreversible, so the longer you are deficient the worse it can be.  You also don’t want your B12 levels to go up and down.  You want to get your b12 numbers high and your other numbers low and keep it that way so your body may begin to heal.

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312 Responses to “B12 deficiency – what the numbers mean”


  1. Dot

    Hello!

    Could someone(s) please list what they feel are the symtoms of a B12 deficiency?

  2. Lu Benson

    I just found out today from my neurologist that my B12 is 137. I had gone to my local dr (after receiving a letter from my neuro saying I should see him and follow it up urgently) and he was quite vague and said I should take some B complex vitamins from the chemist, any kind is fine.

    Turns out my neuro is quite angry now as he has been seeing me for possible MS as I have deteriorated so rapidly in the last four months that I need a walking stick and can barely string a sentence together some days.

    I can’t believe my local doctor would be so casual about it, and then tell me I’m obviously stressed and give me an antidepressant, when all this time I have been so grossly B12 deficient that it might have caused me permanent damage!!!!

    THank you for sharing this info on your blog as I’m having trouble finding people on the web with a B12 as low as mine to compare symptoms with. It’s scary that it may not be able to be fully fixed either….

    Thanks again and I’ll keep an eye on your blog for updates on what is a very underrated, underdiagnosed condition.

    Cheers, Lu

  3. Rachael F

    I can’t say I was given a diagnosis dr just said oh your levels of B12 are very low and that I should get on some vitimins so I went and bought the highest dose 1000mg when I went back yesterday I asked her what it really was the exact number it’s 123 …now I read on line that it should be 400 i wasnt told the severity of levels this low also my iron is super low it’s 22 and should be 40 my hair is falling out and it’s starting to get to me….. I homestly haven’t been told anything except I have hypothyroidism bit with everything else going on I don’t know if that’s my only problem.

  4. Cat

    I just found out my b12 level is 163. I have felt terrible for 6 months now. I ended up with carpal tunnel but am going to see a neurologist. I started the 1000mcg’s of a b12 supplement. Two weeks in I felt better. I’m on the third week and feel horrible again.

  5. B12 Anemia

    Cat,
    I hope you are starting to feel better again. It is not uncommon to go back and forth with how you feel in the beginning. Be sure to tell your doctor how you are feeling and discuss any possible changes in treatment (more b12, shots instead of or in addition to supplements, other vitamins you might want to take, etc…). Your levels were low so it will take time to feel better, weeks and months even. Hang in there, being properly diagnosed is half the battle. Keep me posted on how you are feeling.

  6. Amanda

    I was diagnosed with a B12 deficiency a year ago after feeling debilitatingly tired. My number was 119. I was given shots every day for a week, then every week for a month and then once a month since then. i have had my levels checked once at the six month mark and then again just last week. they called to tell me my numbers were “stable” but once i probed further found out they are just 232. so still quite low. i have just been seeing a family practice doc. should i see a neurologist? on a side note i was diagnosed with post-partum 2 years ago after i had my son and have been on anti-depressants/anti-anxiety meds ever since. could my anxiety be caused by the b12 deficiency instead? i am still fairly tired and have joint numbness/pain. i also have had yo-yo’ing weight and other symptoms. help!

  7. Sue

    I was diagnosed with low B12 a month ago and am struggling to get my levels to stay up. After some persusion I have managed to get two weekly shots of B12 which make me feel normal again the next day, BUT only last for 5 days!! I feel quite desperate as to what to do, as I think I need the shots every week for a while, my B12 was 140. Think I’ll have to go back to the doctor get them more regularly to start with, it’s almost impossible to function normally.

  8. B12 Anemia

    Once again I want to stress that I am not a medical doctor. You need to see a medical professional to decide on treatment that is best for you. That said, I have to say that it is very important that you be pro-active when it comes to getting treatment for B12 deficiency.

    Everyone is different and you are the only one who knows your body and how you feel. I absolutely recommend that you see a neurologist, especially if you are having any tingling, numbness or pain. Any level below 200 is extremely deficient and many doctors feel the actual level of deficiency should be at 400. Most people have levels between 800-1000! The traditional treatment of one shot a month doesn’t work for me either, I need it more often and through a little trial and error my Dr. has found a course of treatment that works for me. Don’t feel shy about telling your doctor your treatment needs to be modified. Good Luck, I hope you all feel better.

  9. Linda

    I found your comments very interesting. My son(young adult) has b12 level of 300. He used to have in the high 400′s but has been dropping for last 2 years. He feels terrible fatigue, tremors, insomnia, trouble thinking and irritability. He has probable Crohn’s disease. I would really like to find a dr who would treat him for b12 deficiency, even though he is above the level, because I’m sure he is suffering from it. We live in Florida.
    Linda

  10. B12 Anemia

    Linda,
    As I’m sure you have read, my (non-medical professional) opinion is that anything under 400 should be considered deficient. I have heard that B12 and Crohn’s disease can go hand in hand. You said probable Crohn’s, so I’m guessing he hasn’t been diagnosed yet. I don’t know if you are just waiting for test results, or haven’t found a Dr. yet, but finding a Dr. should be your #1 priority. You need to let your Doctor know everything you told me, as well as the many things I’m sure you didn’t mention. Don’t be afraid to switch your Dr. or get a second opinion if they don’t listen to your concerns. I have discovered that most of the time you need to be proactive when it comes to B12, especially if you are younger. Many Dr.s don’t take it as seriously as they should and most of the data to treat the condition pertains to older people. I don’t know where you are located in Florida, but I googled Crohn’s Dr.s and got a ton of info. Here are the first few that came up that may be helpful:
    http://www.mayoclinic.org/crohns/
    http://www.floridahospitaldigestive.com/services/index.asp
    http://organizedwisdom.com/Pain_Management_Specialists_in_Florida
    http://www.medhelp.org/

    I hope you are able to find a solution and get him the care that he needs to feel better.
    Good Luck

  11. Kim

    I have been dealing with B12 on my own. I had been ill for years, seen a ton of doctors and no body came up with why I was ill. Finally found a new doctor who decided to do a few new tests. I was diagnosed with SIBO last year. Wasn’t told much about it just handed some antibiotics. After 6 months of antibiotics and no change on how I felt or that the SIBO was going away I asked for my B12 levels to be checked. My levels came back as 240. I was told that was fine. I was also told SIBO would not cause allot of the symptoms I was haveing so it must be in my head. Knowing it was not in my head (I know my body) I did some research on low B12 levels. Come to find out mine was low and if I didn’t do anything about it now it would just get worse. I have been taking supplements, 1000mg twice a day and started to notice a difference within a week. I do however notice that if I forget to take them for a while I start getting a few symptoms back. Is that normal? I do not eat any beef or pork, some chicken and fish. How long should I stay on the B12 supplements?

  12. Tom D

    My symptoms were classic. Fatigue, irritability (so I was told!)along with racing heart, PVC’s(heart)and my calves felt jiggly as though were loose. My Doc finally did blood work and sd. I was “borderline anemic” at 138. I had to ask for b12 after another near passing out, racing pulse episode. He was focused on cardiac concerns rather than my b12 level He stated “you shouldn’t have symptoms at this level”. I too feel a level of 400+ is essential. Finally, I demanded a b12 injection every 2 weeks. My levels slowly increased to 480+. I can attest to the feeling after an injection and when you know you are due.

  13. Crissy

    I Was having alot of trouble with my bladder. I was going to the bathroom about 6 times an hour or more it was alot. I also started having trouble with my vision I then went to the doctor and they ran a ton of test then i was told i had b12 deficiency my level was under 200. I am having to go in once a week for a shot. I was also told i had rheumatoid arthritis and i am going to have to go see a Rheumatologist. I was wonder if anyone else has had bladder or vision trouble with the B12 deficiency or if they have been told anything about Rheumatoid arthritis. Any comment would be helpful.

  14. Donna

    I have Lupus, and have been suffering with really bad headaches, neck pain etc and extreme fatigue. the doc ran tests and my b12 is 212…my folate 209, I only hope that it is the b12 that is causing this, cos that means I can do something about it, if this is just because of my lupus I am gonna be in a right mess, I have 2 babies and sometimes litterally can’t get up I am that exausted….I was hoping that I will be able to cope with Lupus if I can sort my iron levels out, oh well fingers crossed this is what it is!!!

  15. SnowWhite

    I have personnaly found that my symptoms of low B12 to be a major lack of energy,rigid muscles, balance problems and confusion. My current level is 100, which is had to deal with at the age of 24. I am trying to raise it to 400 but this is complex due to my struggles with Eating Disorders. Has anyone had experience with injections? I would love to hear your thoughts.

  16. ero

    I posted a comment about myself in detail in the “B12 Symptoms” section of this blog and came to this one to comment further (if you want to know more about my situation post surgery etc)

    My levels of so much are almost non-existent which explains so many of my symptoms compounding post-surgery as well.
    My B12 & folate studies level was at 186 and it shows on the report the recommended levels to be between 180 – 740!!!
    All my dr had to say looking at all the results was that i was fine, everything was showing average…unbelievable!…he had no explanation of my symptoms. I was shocked..I even told him that that can’t be right, I have so many symptoms etc..all he suggested was that I could take a Vit C maybe a Vit B complex and exercise…thats it!

    First of all, when a person has no energy, has dizziness and fatigue, imbalances to standing or walking and struggle to do much but sit and rest..theres no way one can do exercise.
    Secondly, I have a biochemistry nutritionist that I back up my results and realised how fortunate I was to not rely on the dr like many that dont know otherwise just turn to a dr.
    Doctors predominately and unfortunately are not specialised for nutritional care and support, they are pharmocologically inclined to prescribe synthetic drugs or refer to a psychiatrist etc where more drugs are suggested. Its far from the nutritional medicine interest and they dont bother as it wont I reckon give them a return in their pocket to dish out more and keep having patients return unwell…they run a business to maintain sickness instead of wellness…

    My chances of full recovery are uncertain post-surgery and the dr wants me to take anti-depressants for my symptoms. I consider this absurd. He has helped me in other ways for govt reports and paperwork but thats as far is it goes. He rant and raved about me wanting a full blood count panel test so I had to accept less checked to please him. He wasn’t pleased to hear that I was seeing a nutritionist and put the profession down. He even supported that drugs do the same as nutrition and they are better! Unbeleivable.

    My psychologist referred me another dr with nutritional acceptance so I will I think for my next blood testing go see this other dr and see what the dr is like for me.
    When you have so many symptoms that weaken you, it takes a while to get proactive and unfortunately time lags on and our nutritional deficiency worsens.

    I have found that after some researching about treating B12, the sublingual spray is the best. The benefits surpass the others in my opinion. You have the spray bottle with you (its a purse/pocket size), use it when you want as much as you want. Its actually cheaper than taking shots without side effects of infections and pain and traveltime, appointments & waiting etc.. Also, sublingual is the most effective for the body to get it absorbed and fastest.

    I take up to 20 sprays a day sometimes 30, you cannot overdose on it so it is safe and you are in control.

    Hope that helps readers and SnowWhite.

    Thanks.

  17. Ally

    I was born with Iron deficiency anemia and had to be given iron the first several years of my life. My mother was always concerned the anemia would return once I got older, but I didn’t develop any symptoms so it went unchecked. Since the age of 20 I’ve tried to give blood twice and was denied because they said I was “boderline” anemic. Not sure what they meant by that, but of course it was a a local Red Cross so that was as far as the testing went.

    Now I’m a month shy of turning 29 and over the past several years I’ve developed a lot of strange symptoms. And being a really healthy person the symptoms definitely stood out to me as something not normal. I first would get dizzy and light headed randomly. Then over the past year or so I started getting headaches and really feeling mentally not “with it”. I couldn’t remember things that used to come really easily to me, I had a very hard time concentrating, I was irritable and I honestly thought to myself, “wow, surely I’m too young to be losing my memory or to be developing alzheimer’s”. I really felt like I was going crazy. And I also sometime can’t think of simple words when having a conversation with someone. I just feel not as smart as I was, like I’ve somehow back-tracked mentally. Also, at night I would feel like my chest was heavy, not really hurting, but just tight and heavy. Like something was standing on it. And then recently the headaches started getting worse and I would feel like passing out nearly every day. And one day last week my calves and then my thighs felt really tired like I’d been lifting heavy weights, but I hadn’t. Then the next day it was in my arms.

    All of those things are still going on with me, and I went to a new Dr. today to get it checked out. I told him my past history with iron deficiency anemia and they did some blood work. I have a follow up appointment in 2 weeks. I originally was concerned about the iron deficiency coming back, but after reading all of your blogs and everyone’s experiences, I feel like maybe it is B-12 causing the problem. I haven’t been able to really accurately describe what I’ve been feeling, but I can relate completely to all the symptom descriptions on here.

    Can you give me any advice toward handling my Dr. and voicing my concern about B-12 possibly being the reason for my feeling bad?

  18. ero

    Hi Ally,

    If you feel uncomfortable with your doctor, just get the tests done asking specifically what you want assessed eg. vitamin b12 levels and folate and thyroid and iron, they all interconnect with each other. If the doctor understands some nutrition it can be useful if not take it to a nutritionist or biochemical nutritionist/live blood dry blood biochemistry nutritionist. They will be specific in what is going on and are in favour of your wellness, they also do testing themselves but also can suggest getting that blood testing done thru the dr…if all else fails let me know & I can give you my referral who would happily get to the bottom of what your results present or what you want to do…there could very well be other underlying health aspects to address.
    Hope that helps.

  19. mj

    SnowWhite, your level, at 100 is extremely low. You should be getting injections immediately.

    After weeks of dizziness, wobbly gait, extreme fatigue but inability to sleep well, heart pounding and terrible back aches, depression, anxiety and apprehension/nervousness my B12 was measured at around 160. I can’t imagine feeling any worse than I do at that number. My doc who is up on the latest said that although they list norms at 200 – 400 and above he says I must increase mine to at least 400. Ordered 5 weekly injections to begin, get levels and proceed from there. I frankly think I should have begun with every other day injections for at least first week, but he’s the doctor!

    After first injection yesterday I don’t see much change but I also had terrible metallic taste in mouth constantly and esp. after eating – that has seemed to subside somewhat. Hopefully the rebound won’t be slow and I can get rid of the light headedness and “out of body” feelings!!

  20. michelle

    I find it facinating that doctors would rather write a prescription for anti-depressant medication instead of giving a B12 injection. They act as if we were asking for narcotics. I have been to three different doctors and have got three very different opinions as well. You would think there should be some guideline for treating this condition.

  21. Andrea

    My husband’s B12 level is under 100 even after receiving a series of shots and going once a month for shots for over a year. He is now going once every 3 weeks to get a shot. He is just exhausted all the time. Thank you so much for taking the time to write about your struggles. I did not realize how serious this is. I will be making an apppointment for him to get the suggested blood tests again.

  22. Patricia

    Thank you for this blog. I have suffered with this for years. Most Doctors do not want to give the shots. My range now is 362. And I am having many symptoms. When it gets lower I get in a really bad way. It is my feeling that greed plays a big role in the way some Docs treat there patients. I had to search out to get a B-12 injection. The B-12 injections have always helped me. But most doctors do not want to hear this. They had rather give a strong medications. If this would just happen to more Docs maybe things would change. Thanks

  23. Jenny B

    Hi, I had my bloods done two months ago and the doctor told me my iron and B12 levels were low,he told me to take iron tablets for a couple of months and go back to him.
    Two months were up last week and I got my bloods done again, my iron levels went fron 9 to 20 and b12 went from 80 to 120, he told me to keep taking the iron tablets for another few months to maintain iron levels. I was wondering should I be getting B12 shots aswell? I am feeling very tired,extremly moody and dizzy from time to tme.

  24. Bethy

    Hi,
    I was told by my doctor about 1 yr ago that I have very low b-12 level (I don’t know the exact #), she recommended montly injections which I have faithfully done. Went back for recheck about 4 months ago-still low and need to continue. I also have anxiety problems that i have had for 6+ yrs and had no luck controlling that with meds of any kind, plus I don’t like taking them they make me tired. I was wondering if my anxiety could all be caused by my B12 defiency all along? I heard it takes years for it to get so low. Also do you think I might need to get more than montly, perhaps weekly would be better to get my level up sooner? Any suggestions are appreciated ! I am glad I finally know why I feel so crappy, and sometimes if I get up from sitting my ankles hurt so bad I can hardly walk, could this be from the b12?
    :) Thanks

  25. B12 Anemia

    Jenny B,
    If your B12 levels were at 80 and your doctor did not immediately start you on B12 shots, get another doctor. I’m glad your numbers are going up, but if you don’t treat B12 deficiency as quickly as possible you are putting yourself at risk for permanent side effects. A B12 level of 80 is extremely low and dangerous. If you can’t get the shots you need to be taking b12 every day until you figure out what type of deficiency you have. I always recommend that you follow your doctors recommendations, but you also need to be pro-active about your health and find a doctor that knows how serious this is.

  26. Amy

    Seems classic… I have symptoms like many people here and tested at 149 ng/l but the doctors just seem to want to treat depression. For whatever reason the serum B12 normal low range on my bloodwork goes to 120! I recently moved to a new country and find it harder than I expected to navigate a new medical system, but the doctors seem consistent here with others’ experiences.

    Now I’ve been referred to a neurologist, but there is a 1-2 month wait. In the meantime I’m just doing the high dose supplements and hope I can heal myself over the long haul!

    Symptoms for me have been weakness in hands, tingling (often almost ‘burning’ or painful) in arms and occasionally chest, fatigue but insomnia, unexplained crying spells, and general mental fog. I forget things more easily and can’t focus. All the symptoms come and go but the weakness and tingling are pretty much daily now. I feel thankful that I am still able to function relatively well and hopeful that treatment will improve all these symptoms!

    I have been a vegetarian for four years. Who knew…

  27. Rachel

    Hi, I have had problems with low iron since I was in my twenties when I had my two pregnancies. I am forty now and have just been diagnosed with B12 deficiency (104) and have finished a course of five injections. It has been two weeks now, and I have to say that I do no feel any better and am a bit concerned. How long does it take to take effect? I am really struggling toget through the day as I am so tired all the time, I get really confused and have a poor memory. I am also getting numbness in my right arm and hand! I am so moody its scary and get wobbly on my feet.
    Please, can someone shed some light on this, thank you :)

  28. B12 Anemia

    Unfortunately many doctors just want to treat us for depression rather then figure out what is really going on.

    Rachel – it takes a long time to start to feel better. For me it was very gradual, it was months before I started to really feel better and it was a slow process. It took more then a year for me to really feel good. B12 deficiency is a very serious condition that just isn’t checked for enough. Hopefully they caught it in time and you will be able to fully recover. Be sure to continue your shots and/or take vitamins (I prefer sublinguals). Don’t lose hope , you will feel better as long as you continue to be proactive in your health care.

  29. mel james

    please can someone help me.
    i am very confused and i do not know what is happening to my body.
    for 7 years i have had serious stomach problems, i was told this is IBS. recently it got so bad i kept returning to the doctors. many blood tests later and we still had no idea what was happening.
    one doctor finally tested my B12 levels last november. my number was in the 90′s. i was given 3 b12 injections for 2 weeks then my treatment was reuced to one injection every 3 months.
    My symptoms are awful, constant tummy problems, mouth and throat ulcers, extreme tiredness, lack of concentration and memory, and the list goes on. the worst part is, i work in fitness and cannot teach classes, which have made my work place unbearable for me.
    i went back to the doctors as more recently my sugar levels seem to be up and down constantly, and i get shaky sometimes, i now also have a constant numb toe. my doctor said they can change my treatment to one injection every 2 months but thats the maximum treament i can have, and there isnt much more they can do.
    i saw a specialist who said my diet was to blame, i dont eat red meat, but i consume alot of dairy and he said it was that which was causing my symptoms, he also said my tummy problems must be IBS.
    one doctor has mentioned the link between tummy problems and B12 anemia.
    i think the lack of interest in my doctore when it came to all my tummy trouble has led to me b12 anemia, for nearly 7 years my tummy was never even looked at, as it was dismissed as IBS.
    also i have had depression for many years, something they feel caused my IBS.
    im very confused and i dont know if they problems with my tummy are connected to my B12 deficiency.
    can anyone fill me in??

  30. Lisa

    I’m so glad to have found this website. I’ve been feeling exhaused for about 3 months. I have major hair loss, memory loss, feels like I’m in a fog…I can’t concentrate. I’m having blurred vision, loss of balance, slurred speech at times. I’m down to 125lbs from 160lbs. I have no appetite and have to make myself eat! I’m having mood swings. I’m on prozac and xanax. I had a bowel resection in 2006 removed part of intestine which absorbs B12. My dr just did labwork. He said everything came back fine except enlarged RBCs which happens to be a sign of B12 deficiency. I’ve insisted on more thorough test including serum methylmalonic acid test and homocysteine levels. I’m going this week for labs. Are there any other labs I should have tested?

  31. B12 Anemia

    Mel – Stomach problems can be a main cause of pernicious anemia. If you are not happy with your doctor, don’t be afraid to get a second opinion. I can tell you for a fact that one shot every two months is not the maximum you can have. I went to quite a few doctors before I found one that knew the severity of b12 deficiency and would treat me properly.

    Lisa – Your story is also very similar to mine. You are getting all the right tests done, you just want to be sure NOT to take any B12 shots or supplements before your tests. Once they get an accurate account of your deficiency, then you want to get lots of b12 into your system. Remember that recovery can take a long time, so hang in there.

  32. Miranda

    Thank you for this post. Upon looking into whether I have a thryoid problem, my doctor happened to mention that my B12 was a little low and I should take a daily pill. I started doing so without really thinking about how or why it was low. Well I found your post as well as other articles which made me realize I could very well be deficient and that could be causing some of my issues- I seem to have almost all these symptoms. I am on 80mg of Nexium a day for 5 years now and that can easily cause issues with your B12 absorption, but no one ever told me that. Im also reading that just taking a pill will not fix this.

    So I called my doctor today to find out the exact # of my B12 and turns out it is 389- right below normal. Is it possible I am still deficient? I really recognized myself with the symptoms and the risk factor of the PPI usage but now it seems I’m not that low at all….

  33. Megan

    Hi, I finally found a site thats useful. My doctor said my level of b12 was at 280 and Im depressed feel really weak and tired; at times feel like im gonna fall and pass out, I have a loss of apitite and I forget things alot. I got an injection yesturday my first one and I feel worst today than yesturday. I don’t know why I have low b12 I had my son a year ago, that’s the only thing I can think of that might caused this. I just hope I get better soon cause I know what this sdoes to you. my mom was hospitalized because of this after having that gastro bypass surgury she was paralyized (which she has gotten way way better now) and has loss of memory (which she still has).

    Fingers cross i will get better!!!

  34. Holly

    Hi. I am 25 years old and was just diagnosed with B12 Deficiency. I am fatigue, irritable, tingly, numb, twitchy, shakey, loosing my hair, very forgetful, clumbsy, loss of balance and coordinaction. My B12 Level was at 31. I always have headaches. My Doctor put me on the shot imediately. Everyday for a week, then once a week, and then once a month for the rest of my life. I am beyond frustrated. I can’t sleep, eat and I am constantly loosing weight. I feel like crying everyday and I am very very cranky. I just want to feel better as quick as I can.

  35. B12 Anemia

    Holly,
    You are so lucky that you have a doctor that knows how to treat B12 Deficiency! I know exactly what you are going through and all I can tell you is that now that you are being treated you will start to feel better. Unfortunately it is a slow process and it may take months for you to start to feel better and even years before you know how much you will recover. I know it’s frustrating, but hang in there. Getting diagnosed is usually the hardest part, it will just get better from here. Good Luck!

  36. Barb

    Hi – Like everyone else I just found out that I am B-12 Deficient. After feeling awful since last November I am hoping this is going to help me. I started out with this strange rash, floaters in my vision, tired all the time, and this weird white sore under my tonge which I have been to 5 doctors (including Cancer Doc) and no one knows what it is. It comes and go’s. They keep saying that all of this is stress. I have been to more doc this year. I have gained weight because I have no energy to do anything. I am usually a very active person who can’t sit still. I am hoping this B-12 shot is going to be the answer to my problems. I keep telling these doc’s that something is lacking in my body. Finally my gyno took some blood test and found that my B-12 was low. I know how everyone feels. It is very aggravating.

  37. Casey

    I’m sending a followup on an email I sent in 2009. My B12 level is over 2000 and I get a shot once a month. Everything blood wise is good, however, I still have numbness or the doctors have called it neuropathy in my feet,legs and hands. I go to the Neuro doctor in about 6 months hoping for better things to happen. My daily sublingual taking of B12 1000 I believe is the reason for my high B12 readings.

  38. Vanessa

    Hey
    Im 22 and just discoverd last week that I needed b12 and well the doctor didnt said anything he just give me those pills to take everyday, I thought it wasnt a big deel until I check on the internet. After reading all this I beging to wory cause I have 107 so I gest its not realy good, what should I do, cause the doctor is not realy helpful in all this. I see that a lot of poeple went to see a neurologist is it important… Should I realy be worry.

  39. Tiffany

    Thank you for your insight.

    I was diagnosed last year with “critically low B12 levels”. I don’t remember what the number was now, but it was somewhere around 60. The doctor said even most elderly people don’t have levels that low. He started me on shots immediately, but since I kept getting worse with added weird symptoms he decided to give me a blood transfusion and admit me to the hospital so they could monitor me and try to figure out what my other symptoms meant. I ended up staying in the hospital for over a week. They never fully figured out my other stomach issue, but they believe it was probably tied to the B12 issue.

    After I was released from the hospital, I was given daily shots for two weeks, then was moved to once every other week, then to once a month. Though my levels were very slowly moving up, I still felt awful. I complained to my doctor a few times, but he ended getting frustrated with me. Eventually, I just stopped getting the shot, because I didn’t feel like I was getting any better and arguing with my doctor was also not getting me anywhere.

    I recently started realizing I was feeling very much like I did when I was originally diagnosed. However, I kept excusing/ignoring the symptoms. It wasn’t until a couple of days ago that I put the pieces together and thought it may be B12 rearing its ugly head again. I went for blood work this morning.

    I’m not a very patient person. If I don’t feel like getting anywhere, I’m likely to drop it, move on and hope for the best. My question is how long does it take to get better? If my expectations are realistically set, I am more apt to continue treatment. But, to keep beating my head against a brick wall and not get anywhere seems silly and a huge waste of time. Any guidance you can give me would be very helpful.

  40. Jackie

    I was diagnosed with vit b12 deficiency 2 weeks ago. My Blood level was at 116, apparently drastically low. I have started b12 injections one time every two weeks and have had 2 shots. I have noticed no difference at this point except a very sore arm from the injection. A Methylmalonic Acid test was done and came back normal. This puzzled my doctor as my diet consists of alot of b12. I am so confused, why would i be b12 deficient and have the test come back normal. Could it be a mistake and I am not deficient? I have had symptoms of extreme fatigue, weakness, irratibility, high anxiety, sore muscles, absolutely no form of energy at all, very cloudy thought process, can’t remember anything etc etc. Over the last four years I have been sent to Endocronology where they told me I was estrogen deficient then to a gastro dr were they said I had IBS and a twisted colon. I have since been treated for both of these issues and still have all the same symptoms. I am 26 years old have a son and a full time student I am sooooo tired of this!!!!!!

  41. B12 Anemia

    Tiffany & Jackie,
    I understand your frustrations! B12 deficiency is a complicated condition and causes many different problems and symptoms. You must have patience and stick with getting treatment! It can take YEARS for you to recover, and even months to just start feeling better. Most likely it took years for your body to become as deficient as it is and you will not recover overnight. It is a long, sometimes frustrating, recovery. I remember crying after my first few weeks of shots because I didn’t feel any better. But if you stick with your shots/supplements your body will eventually start to heal itself. You may never fully recover (especially from neuropathy) but I promise you will feel much, much better then when you were diagnosed. And if you stop treatment you will not only go back to how bad you were, but continue to get worse.
    Please hang in there and keep me posted on your recovery:)

  42. Stephanie

    HI I have been diagnosed with low b12 156. They want me to come in a start injections immediately. I am not sure on the amount I will receive. Hopefully my doc is up to date on this and takes it seriously. I have been doing lots of research on the causes of low b12 and seem to be seeing a lot of people are relating it to Celiac\Gluton allergy. Do you know of this I just want to be proactive when I go to see my doctor for the 1st shot and besure that I am treating everything. It seems the symptoms are very similar. What are your thoughts on this?

  43. Maggi

    I was just diagnosed with B12 and Vit. d deficiency; also, other b vitamin deficiencies.
    I had been to numerous doctors; anti-depressants, Zanax, etc.
    Total loss of appetite, numbness, tingling,depression, incomnia.
    Finally, I went to a neurologist and the diagnosis was made.
    Presently, I am on weekly B12 injections; Vit. D prescription, and supplemental B Vit. Calcium and Magnesium.
    This has been a very frightening and frustrating experience. I, too, did not realize how serious this can be, and the possibility of permanent damage. But, I feel so greatful for a diagnosis.

  44. Jo

    I was recently tested and came back with a 228 B12. (I was tested 5 years ago and was at 400) Doctor said I was dangerously low and had to be treated immediately with one shot p/day for 5 days in a row. Then I have to go in and be retested in two weeks. What I found very interesting is that he said the 1000mg tablets would take 100 days to have the same effect as the 5 shots. (I was given the choice of which I preferred, I took the shots) He tested me for the intrinsic blocking factor and that came back negative. (Means I can absorb B12 when it goes in, but…I can’t seem to hang on to it)

    After years and years of multiple symptoms that many of you list above, I believe I have a start to the problem. I believe the B-12 deficiency is a symptom to the underlying issue at hand, but what a relief to be on the path finally! Hopefully the doctor/s will not try and treat this symptom with merely with a bandage and move on, but that they will look to the source of this problem/symptom.

    List of symptoms: Fatigue, numbness, facial pain, tingling, tremors, nerve pain in hip groin area, cognitive issues, balance issues, white spots on skin, shortness of breath, eye twitching, heart palpitations, serious memory loss, confusion and difficulty concentrating.

    If anyone comes up with interesting reasons for B-12 deficiencies, I would love to hear them!

    Blessings,
    Jo

  45. Anne

    My husband was suffering from hand tremors for about 6 months and mentioned to Dr. who did blood work and called him to say he was B12 deficient. He started him on weekly shots, then 2X a month, then monthly, etc., for about 3 months…in the meantime he referred him to a neurologist who says he has Parkinson’s….we sought a 2nd opinion from another neurologist and he says the same…only symptom is hand tremors….after the b12 shots and taking sublingual b12, had his blood tested again and his numbers were off the charts–1200! Dr. refuses to give him B12 shots anymore and he has (against my better judgment) begun PD meds. Is it normal for a low B12 reading in the 100s to shoot up to 1200 after 3-4 months of treatment? I still think his problem is not Parkinson’s but B12 related. He is not vegan, eats lots of meats, etc., so something is going on to have caused his body to not absorb the b12 in the first place. Any comments are most appreciated.

  46. Amanda

    I have suffered from headaches/migraines for years and finally went to a neurologist who ordered blood work and MRI as standard. I was shocked when they called and told me that my B12 was 198 and my vitamin D was low (don’t remember what it was) I was told that I have to give myself injections once a week for 12 weeks and take 4 Vitamin D pills over 4 weeks. The only other symptoms I have is insomia and fatigue but I’m a single mom and I go go all the time, so I guess I don’t think anything of it. I eat meat every day, but I eat one meal a day and I am full and I never want to eat dinner because I still feel full from lunch. Only once in a while do I feel a little light headed. I don’t have any other symptoms associated with B12 deficiency so I don’t get it?? The only reason I think I might have it is I have IBS from having my Gallbalder removed 10 years ago and my body has never been the same since. No one else has mentioned having headaches or migraines with low B12?? I don’t think this is the only reason for my headaches.

    Thank you.

  47. Jackie

    I was recently in an accident. I was hit by a semi in Sept. I have had hypothyrodism for years and treating for it also. But after the accident I left my Dr and went to another due to trust issues. I sustained a closed head injury,back and neck injuries in the accident. But for the purposes of treatment after the accident I went through some blood work. I was told that I was severly low on B-12. I was told that the normal level was 900 and I began once a month injections. After 5 injections I have just now hit 200. But I am dizzy frequently, tired all the time, tingling and numbness even in my head, lots of headaches. Off balance and confussion are just some other symptoms. Some of this of course comes from injuries from the accident. But I cant help but wonder if I should be recieving more then one injection a month?? I dont even feel like I can function on most days. All I want to do is sleep anymore.

  48. Jackie

    Also extrememly depressed and terrible anxiety. Which of course I am medicated for along with pain meds.

  49. Angelia

    I have had iron anemia off and on since 1984. Well last year I was told by one doctor my B12 low then another look at it said no my iron was low not the B12 then in Jan of this year I am told my B12 is low at 205 but not the iron ok. I am cold all time, my memory sucks sometime the words can not come out at all,sometimes I can’t remember my kids names, I am so tired just can’t get up to do anything, I also have ringing in my ears that is new only in the last two years I though it was being around jets until I read it was was a symptom of B12. Right now I take shots every two weeks I am going to a Hematlogist on Friday I want to know why I have the Iron Anemia and B12 Deficiency. For a long time I thought it was a thyroid problem. I just want to feel better not be tried, cold, have headaches, pain etc and loss all my weight. The shots seem to pick me up for about two days the nurse told me to give them to me in the fat like my stomach I think this is wronge.

  50. Trudy

    Hi can some please help me i had a blood test done in dec 2010 and my b12 levels where 260 in feb 2011 had the blood test done again and they are 229 it seen to be droping pretty qick am really having promblem rembering how to do my job, have tryed to talk to my doctor but says i have no promblem with my b12 can some please help me, how do i get help my moods are unbearable all i do is cry please help

  51. B12 Anemia

    Angelia,
    I have never heard of anyone getting shots of B12 in their stomach. I have gotten them in the top of my rear in the past, but since I was diagnosed I get them in my arm. If you are getting B12 shots every two weeks and continue to get them you are on the right path and will gradually start to feel better. It is a long process and doesn’t happen over night so keep up the shots and it will get better.

  52. B12 Anemia

    Trudy,
    You need to consult another doctor right away! It is important that you get the right treatment as soon as possible. Many doctors do not realize the severity of B12 deficiency and do not treat it properly, so don’t be afraid to change doctors until you find one that knows what they are doing. When your levels showed up as 260 your doctor should have immediately done more testing, then started you on B12 shots. The longer you wait to get treatment the harder and longer your recovery will be. Please take this seriously and get help right away.
    Recovery is a long process, but you will start to feel better if you get the proper treatment.
    Keep me posted!

  53. Elizabeth

    Hi
    i have just been diagnosed as borderline b12 deficient.
    I have read up on the symptoms and i have most of them. The one which worries me most….at present…. is my hair loss. i have lost about 70% or more and it is even vanishing from my arms and legs. I am also fed up of feeling exhausted all the time. If i am on my feet for too long i start to shake and feel light headed if i dont sit down i pass out. This morning i made my 8 year old daughter cry because we were late for school and i`d left her to get dressed whilst i lay on my bed for five minutes. She hadnt got dressed and i shouted at her!!! i feel dreadful now even though she went into school happily.. glad to get rid of me i suppose. i shouldn`t expect her to get ready by herself because i am so tired. I have to be up early.. quarter to six on school days to get my son up and showered for the school bus at 7.30 and then i get my daughter up by this time i am tired and shakey but i still need to get her to school. i really dont feel i can cope much longer and i am worried that being borderline b12 defficient wont get me the jabs i have heard so much about.
    Should i be having such bad symptons just being borderline. i also have headaches forgetfulness…i forgot my own door number the other day! and a heavy pressure in my chest almost all the time and numbness in my left arm and fingers. It isnt my heart, i`ve had that checked although i do have a slight murmur.
    I would be really grateful if anyone could help with what range “borderline” would fall.
    How low/high would i have to be to insist on the injection

    i will be grateful for any advice :)

  54. B12 Anemia

    Elizabeth,
    I am very curious to know ~ what were your b12 levels? Many doctors vary in what they think is deficient. Many say that anything below 200 is deficient, but I feel that doctors who really understand b12 deficiency are the ones who say the number is more like 400. Keep in mind that the numbers are just a guideline, the level that you start to have symptoms can vary. Is your doctor giving you b12 shots? As I’ve said many times, once you get the shots it will take time before you start to feel better. It is a slow process and you need to have patience, but once you start treatment you are on the road to recovery.
    Keep me posted.

  55. Trudy

    ABout 7 years ago I was diagnosed with b12 deficiency as my levels consistently run around 100. Even with shots they stick around 300-400. About 6 weeks ago I began the 2500mcg sublingual pills. I recently had my B12 levels tested again and they were 740. This is great, however my RBC and WBC are a tad low. In the past when my W and R BC’s have been low it was because my B12 was low. Is it possible the sublingual pills raised my levels? or could it be a mistake by the Lab?. Im just a bit leary of the high levels.

  56. Leah

    Hi, I was diagnosed with B12 deficiency anemia in early march. was on antibiotics which gave me a constant upset stomach so I guess I flushed everything out. Before I was diagnosed I had dropped like 15 lbs in a month. Then I was really tired and at times achy like I was catching a cold. Then the tremors and rapid heart rate began at times I get light headed and such… got tested two weeks before the tremors started and it was 240….. it was probably lower once I got to the doctor he then gave me an injection and told me to take 1000mcg supplement a day.So I do.. 2 weeks ago I started injections once a week along with supplements just got blood test today and it was like 1300….. should it go to the extreme .. B12 is water soluble so it is highly unlikely for an overdoes but wow. granted I just had the shot friday and by the time I need another shot I usually start getting tired again. I guess it means at least I am retaining it to a point but I have read that mega doses or vitamin b12 is the way to treat it and then it will eventually level off. I am hoping my symptoms go away but I have been told and read it takes about a year to get normal again. Any input or comments would be greatly appreciated thank you :) Leah

  57. Linda

    Hi all,
    I just wanted to tell you that hypothyroidism is a culprit of many of the symptoms I see people listing here.
    These are the tests you want run by a Dr. who knows what they’re doing.
    TSH
    FT3
    FT4
    RT3
    B12
    VitD
    Iron
    Ferritin

  58. Deborah

    Can someone pls advise me, I am desperate.
    I have a family history of pernicous anemia and was feeling very tired like I couldnt even get up and I am 28, I figured being a single mum with studies this was just normal though deep down Ithought what is going on, I cant even get up, heart palpitations, so extremely lethargic for no reason, complete brain fog and confusion, I went to doctors for panick attacks thinking maybe its that, they wasnted to send me to a psych for depression, then another doctor said I had an excessive heart rate and gave me pills, when getting home I looked at my blood test and b12 was 212. I went back saying my family has history of this pls are these levels too low, I am always tired, it is not depression pls help me ( literally worried I wont wake up in the morning for my son I thought I was bloody dying this cannot be right to feel sick and tired and not able to do the dishes, and complete brain confusion ) so he agreed to test me though assured me those levels were completely fine. Same result again, my b12 levels just over 200 again. He insists there is no problem because folic is at an appropriate level, can someone pls give me some advice, should I accept this, go to another doctor I have been to two already, I cannot go on like this, all my bloods and everything else comes back fine, my thyroid level is also low, so it could be hyperthyroid which I am getting an ultrasound for next wk, I just need input because I keep getting told this level is fine and I have NO energy an hour a day and the rest I am literally have NO energy and I am getting worried because no doctor is listening to me and I have a young child to run after. If the doctor feels just over 200 is ok, will vitamin b pills from chemist help?

  59. Carrie

    My GI doctor recently diagnosed me with a B12 deficiency and started me on weekly injections. I called my primary doctor and neurologist and found out they have never checked my B12 levels, so I don’t have any idea how long I have been deficient, but do know that I have been having severe migraines and vertigo since my 2nd child was born (4 years ago). 6 months ago I had to start on an anti-depressent. My question is, have you experienced or heard of B12 shots, raising your levels to the point that it would correct things like this? Most specifically-the migraines-now I take BC pills & Topomax & have seen no relief- could this be from the lack of B12?

  60. Beth

    been told i was anemic since 1996. ms diagnosis in 2004 b/c of optical neuritis and leasions without lyme disease. had bypass surgery in 2007 and told i had possible chrons, by 2009 was complaining of concentration issues and memory loss. memory test normal, but prob didnt take into acct my high iQ and it was mainly #s which is like savant for me. thyroid has always been ok and to the side that i should be thin even with goiter, bulging eyes and brittle nails and cold sensitivity and family history- i like it above 77 – 90*. even moved to fl recently from mass and am freezing in the ac and unless it is over 80 out. in 2009 was told i was ADD, meds did not help, only with fatigue but i also have ms which was diagnosed in 2004. finally sent to hematologist in march of this year and b12 was 148. in mid april had 5 straight shots and then another 2 weeks later (all 1,000 mcg) also consumed a stacker b12 10,000% of rdv in that month. had blood done again it was 318. dr. expected it to be 1200 and was perplexed. now going 2x a month for b12 shots. i do not drink, use drugs other than ambien ( for sleep – prob from low b12), occasional adderal ( for ms fatigue), or flexeril (for ms spasms).sometimes meds make me retain 15 lbs of water in like 3 days so i stop taking them – oh and depo provera for birth control which stops menstration and about to start klonopin for anxiety. cardiac echo and stress came back good. have been able to get off the iron supplements as my iron is now high for a woman. i OD on multi-vitamins, vitamin D and calcium. my dexa scan came back ok for now. i understand the lack of ability to absorb through consumption orally and had been taking 7 times the rdv for years and up until b12 def. discovery. how long does it take to get b12 up there? are they any other reasons i might not be able to store b12 or absorb shots? or ways to better help shot absorption? looking at the signs of dementia i am about 75% down the list. only improvements are palm pains and hand tingling have gone. but about to see rhumetologist for finger and shoulder pain. ST memory loss is huge unless contact and reminders are consistent. some other test came back off which hinted at possible heart disease but cholesterol is to kill for and cardiologist checked out everything is ok. b6 is also beginning to get low now. any suggestions, criticism, hints, what ever appreciated. thanks!!!

  61. Beth

    i have copied linda’s list to compare to blood work results already taken to see if i can have other tests looked into being done to rule those out.

  62. Lynnette

    i have been put on injections once a week for 20 weeks then they will test the levels again. my level was 138. It got discovered when I went to the doctor with shock-like nerve pain in my face. He decided to do a complete blood work up and I am so glad he did. The doctor before kept on giving me antibiotics thinking it was just an infection. I have many other symptoms also and I am just hoping for some relief

  63. Brenda

    Hi,

    I am going through major pain from low B12. In March I told my family doctor I wasn’t feeling good so he reluctantly did blood work and it came back at 94 with my white blood count being low as well. He said to take Vit B12 and see him in a month. Well when I tried to go back he was out of the country until May 27. Finally around May 10th I went to the hospital as my tongue hurt so bad. The emerg. doctor was really good and set up an appoint. with a Internist. I saw him and he was basically pretty upset because of my pain symptoms, tingling, vibration, tongue pain etc. He said this is way too low. He perscribe B12 shots (I do my own injections) immediately plus lots of blood work which I have had already. When will I start to feel better?

    Thank you,
    Brenda

  64. B12 Anemia

    Hi Brenda,
    It sounds like you found a great doctor who is concerned about your incredibly low levels and that is half the battle! It will take a while for you to really feel better, so don’t get discouraged. Everyone is different with how they respond to the treatment, but it seems like anywhere from one to three months is how long it takes for people to start to feel batter. It can take years for your body to recover as much as it can. Stick with your shots and it will get better, I promise!
    Take care:)

  65. Jan

    Hello-
    My story is similar but I am scared. In 2007 I was erroneously dx with MS. The neuro who dx me did get my b12 level every yr but ignored it. It was 282 the first yr. When he left the clinic and was replaced this yr the first thing the new dr said was that she felt I was mis dx. She gave me the results from every yr and they were currently at 150. I knew nothing about b12. but by this time my feet were numb my hands feel like tuning forks, touch reverberates and is prickely. I am sick to my stomach. I have had all the other tests which all of you should have.

    When you are b12 deficient you need to find out why. It needs to be treated but there is more to it than that and if you have pernicious anemia, penurious means fatal. Ppl used to die from this. This is a very serious disorder. If your dr is not taking you seriously get another dr. Reasons for this, as some have said,can be due to long term use of medicines for acid reflux, chrons, cancer, etc. In my case they cannot determine why. Also, if you have this chances are you will have to treat it for life. I will give myself a shot, at least monthly, for life.

    Also, there are four stages of b12 deficiency. I have the misfortune to continue to decline. I can barely walk now,and I reported to the dr. Last Oct. That my feet felt like I was always wearing socks. The sharp decline has been horrible and I fear I will not recover.

    Also, the folks who have talked about stomach issues, b12 is absorbed in your small intestine, so if you have intestinal issues, it can definitely be why you are where you are. Please do some research and educate yourself. You may need a different type of b12 shot if your methylmalonic acid is out of whack. So many facts come into play. And because b12 is a soluble vitamin, you do not store it, just a small amount in the liver,so you can take a lot.

    Finally, my spelling, eyesight and use of this stupid iPad with auto complete combine to make this possibly a funky read, so I apologize if that has happened.

  66. Doreen

    I’m so thankful for all the information. I’ve been having many of the b12 deficiency symptoms the fatigue, depression, memory loss, breathlessness etc. I went to the Dr and my B12 was at 137 and he acted like it wasn’t a big deal. But he did give me a b12 shot and I’m going to be getting them once a month for a while. Next time I see a Dr I will be much more prepared with the facts. And in the meatime I think I’ll add some more supplements myself and hopefully I’ll be feeling much better soon.

  67. B12 Anemia

    Doreen,
    Good for you for being proactive about your health. The more facts you know the better! At least he did perscribe the shots, although it would be better if you could get them every two weeks to start. If you do start to feel better, do not let them stop your shots just because your B12 levels come back high in the blood work. Keep getting them for as long as you can. If you do stop and start to feel worse, get back on them asap. You don’t know why you are deficient, so you don’t know if you just haven’t been eating enough food with B12 or if you have pernicious anemia, which means you lack the ability to carry the B12 through your body. If this is the case you will have to take additional forms of B12 for the rest of your life to keep healthy. Good Luck and feel better!

  68. Marlene

    Hello all In have known for several momnths now that I have a b12 anemia problem..Mine was 68 and my doctor has been giving me shots once a week for months now and mines still not were it should be..I feltn feel so drained an my legs felt like they were 100 pounds . Years ago i was told I had tacyhacardia (rapid heart beat)been on antenolol for years…I’m in another state and can’t get my shot and I’m feeling it right now.Has anyone be told they have this heart problem in result for b12 anemia?

  69. sarah

    Hi
    I am 28yrs old and have been ill for prob 8months now! the doctors done blood tests on me and found that my b12 levels were about 150 and i am also folate deficient! They found that out straight away but said im only slightly low and they have seen worse. and they have said they will put me on injections but they have been doing tests to find out why and wont treat me tell they know why! The thing is, its got to the point where i feel so bad and so depressed its ruining my life! I have a physical job which i am seriously struggling to do and im to tired and ill to go out with my friends or do anything! Apparently my Iron level is 14.1 which my Doctors tell me are normal?
    After 8 months im getting worse and it seems the doctors are fobbing me off. All i want is to get my life back. Any advise/help would be much appreciated!!

  70. B12 Anemia

    Marlene,
    I also experienced some heart problems when I was severly deficient, but it seems that everything went back to normal for me. I have not heard of anyone saying they had this heart problem in conjunction with B12 deficiency, but that certainly doesn’t mean it’s not connected. I hope you have gotten back on track with your shots and are starting to feel better.
    Good Luck!

  71. B12 Anemia

    Sarah,
    I totally understand how you feel, I lived it and it’s very frustrating when no one seems to take you seriously. Before I was diagnosed I really felt like no one was going to help me and that I was going to die. I know it’s hard, but the doctor is doing the right thing by not treating you right away, once you start treatment they will never get an accurated blood result back so they have to be sure they know what is going on. That said, it shouldn’t take more then a week, two tops and then they should start treating you. If it’s been 8 months without them treating you, FIND ANOTHER DOCTOR! You need to be your own advocate. Every doctor should consider 150 extremely low and at the very least be giving you one shot a month. Personally I would demand a shot a week until I started to feel better.
    Good Luck! Wishing you a speedy recovery!

  72. Sandra

    Hello.
    I started with symptoms about 4 weeks ago. It started with pain in joints in hand, but have now spread to muscle and joint pain in hands, arms, legs, feet. I have had stomach issues for years so I take Nexium and Birth Control Pills daily. Both medications from what I read effect absorbtion of B12. Doctor did blood work checking for lupus, gout, rheumatoid, thyroid, creatnine, etc. Showed I am deficient in B12 and Vitamin D. My B12 is 226 (normal 243 to 894) and my Vitamin D is 11 (normal 30 to 100.) He only has me going in once a month for B12 injections for the next 3 months, and told me to take 800iu’s daily for the Vitamin D. From what I am reading, I am not getting enough injections of B12 and not taking enough D to bring the levels up. Any ideas?

  73. Lisa

    i have been on b12 pills 250mcg one a day for about 6 plus months at first my b12 level was 76 then in 3 months it doubled to little over 140 now about a month ago its up to 150 should my b12 pills be a higher mcg as i was reading other comments above it should be over 400 my dr told me it was ok as long as it kept rising. I still feel tired no energy at all starting to get concerned with the above comments what should i do

  74. B12 Anemia

    Lisa,
    Please get a second opinion right away. This is not something to mess around with. If my b12 levels were 76 I would be demanding shots at least once a week until I felt better. A b12 level of 150 is still way to low. It is really important to treat it right away. There are lots of side effects of b12, especially neurological, that must be treated as soon as possible or they may become permanent. While everyone needs a different dose and what I get might not be what works for you I just want to give you something to compare your 250mcg pill to – I get a shot of 1,000 mcg every other week and I take a sublingual of 500 mcg every day. Good luck, I hope you feel better soon!

  75. Ambitiouswoman

    I’m so glad I found this site. I though I was going crazy with my mind forgetting things and not being able to concentrate. My hands, spine, feet, and legs were tingling. I also have back pain that is ridiculous. I didn’t understand what was going on. I was rushed to the Emergency Room several times. I like many on this site was frustrated and annoyed at the Dr’s nonchalant attitude about my health. I started my first shot today. I will keep you all posted as to progress but I’m so glad I listen to my body. I didn’t realize how serious B-12 deficiency was. I would like to know do you recommend that I take a liquid B-12 vitamin instead if the pills for faster abortion? Also should I continue taking a multivitamin and my B12 supplement while on the shots weekly?

    Ambitious Woman

  76. B12 Anemia

    Ambitious Woman,
    I’m glad this site has been helpful to you. You should talk to your doctor about the best course of treatment, but I would definitely not stop getting the shots. Ask if it’s ok to take additional sublinguals if you want, I always do. My doctor also prescribes my multivitamin so you may want to ask about that as well. Good luck with your recovery!

  77. Rachel

    I have been having a combination of symptonms since April 2011, these include numbness sensations, tingling in hands and feet, pins/needles, arms going to sleep at night during sleep. also I have been havng a light headedness feeling, suffering from repeating myself in conversations (according to my husband) and irritability. I especially dislike mornings and cannot tolerate noise first thing. So i went to see the doctor who did a lots of blood tests inc. vitamin b12 levels. The tests came back normal levels, apart from b12 which was 176, FBC is fine, I am not anaemic or have folic deficiencies just the b12. Further tests confirmed that I do not have intrinsic factor antibodies and I eat a good balanced diet with meat. The doctor seems unsure as to what to do next, I am taking sublingual supplements of b12 myself in the meantime whilst I wait. What do I say to the Doctors? They do not seem to be too worried and am happy for me to take my own supplements. Please can anyone relate to/help?

  78. Jane

    In May 2010 (age 36) I was diagnosed with a B12 level of 66. It was another month before I started receiving B12 shots as my doctor wanted to do more tests to find out what was causing the deficiency.One set of blood tests was lost and then another set came back unequivocal. Eventually they diagnosed me with pernicious anaemia.I then had a loading dose of one shot every other day for 2 weeks then one every 3 months.I still felt dreadful, slept for ages,fatigued,confused,dizziness,memory loss,tingling so I went back to my doctor. She wanted to put me on antidepressants but I knew that my symptoms were due to the B12 deficiency and asked her to give me another loading dose/treat me more aggressively.She refused and said she was following the NICE guidelines with regards to treatment. Finally, after several visits to the doctor (and threatening to make a formal complaint about my treatment) she agreed to give me monthly shots. Since December I have been on monthly B12 shots and I take a 5000mg subligual. I’ve also just started taking folate and B12 supplements as I’ve read that if you’ve been deficient in B12, you need to ensure you have high b6 and folate levels to help in the healing process – I feel anything is worth a try. I feel much better than I did but still have a way to go. It’s a struggle to work full time because of the tiredness. My life pretty much consists of working, chores and resting.If I could work part time it would be a godsend but unfortunatly I can’t afford to. I just keep hoping that as each week/month passes together with taking the extra supplements, I will get better and better.
    It has been reassuring where you state it can take YEARS before you body can recover as much as it can.

  79. Octavia

    Hello,
    I have had my second bloods taken so that they can double check my B12 levels before starting the injections. I went to the doctor because my hair was starting to fall out in larger amounts than normal.
    After reading about the B12 deficiencies, I seem to tick all the boxes. I have constant headaches, though this has been put down to migraine. I am constantly tired, but again, this could be down to the medication I have to take for my other condition.

    I am getting very painful neck ache. Is there anyone else out there who is getting this symptom? It also gives me a painful back and joints generally and again, I am putting this down to the B12 deficiency.

    Tinnitus is another ailment I have had for many months and this has been treated as an infection,but now I am thinking that it could also be down to this B12 deficiency. I am probably hoping a little too much from all of this, but if this B12 injection would put an end to all the above, then it would certainly give me a happier outlook.

  80. Ambitiouswoman

    I found this site about the 4 different stages your body will go through and when your body may be able to reverse the effects of nerve damage the sooner you began treatment. I hope this helps some one:

    “Four Stages of Vitamin B12 Deficiency”

    1) Serum B12 concentration low; no clinical or metabolic abnormalities. Low plasma level of holotranscobalamin

    2) plasma and cells stores B12 become depleted. Serum B12 is low with metabolic abnormalities

    3)Increased level of HCY and MMA and low holotranscobalamin–low B12 level. Damaged metabolism, dU suppression is abnormal. Neuro-Psychiatric symptoms with mild haematological changes without anaemia

    4)Clinical signs become recognisable (Addisonian criteria)
    Macro Ovalocytosis
    Elevated MCV or Erythrocytosis
    Lowered haemoglobin

    Patients presenting with the classical features of pernicious anemia (PA) would therefore be expected to have progressed through stages I II & III over several years.

    Some vegans and patients with malabsorption of food cobalamin, may also progress through these stages. Sometimes over many years, but others may not progress beyond stage I or II. These considerations imply that there are many more individuals in stages I, II, & III of B12 Deficiency than in stage IV (PA).

    Low nutritional-intake of Vitamin B12 may lead to negative balance and finally to functional deficiency when tissue stores of Vitamin B12 are depleted.

    Early Diagnosis (stage I & II) of Vitamin B12 Deficiency seems to be useful because irreversible neurological damage may be prevented by cobalamin substitution.

  81. Ambitiouswoman

    TO Octavia:

    Yes, I have experienced neck, spine, and headache pain so you are not alone. I also get the tingling in my hands and feet. The scariest moment for me was when I couldn’t concentrate and felt like I was losing my mind. No one understood what I was going through. Some family members thought I was over reacting and I just needed to stop being paranoid, but I insisted on going to the doctor and being seen. It was blood work showing that I was anemic and me listening to body’s symptom’s that kept me going. I had to become proactive about my health and I began researching information on B12 Deficiencies. I thank God I found this website along with several other’s that have really been helpful.

    TO Rachel:

    I found a really great website that broke down the different types of symptoms many may experience. Here are a few of the symptoms.

    Early, Noticeable Symptoms of Overt B12 Deficiency:

    Unusual fatigue
    Faulty digestion
    No appetite
    Nausea
    Loss of menstruation

    Other Symptoms of Overt B12 Deficiency:

    Numbness and tingling of the hands and feet
    Nervousness
    Diarrhea
    Mild depression
    Striking behavioral changes
    Paranoia
    Hyperactive reflexes
    Fever
    Frequent upper respiratory infections
    Impotence
    Impaired memory
    Infertility
    Sore tongue
    Macrocytic anemia
    Low platelet count and increased bleeding
    Neutropenia

  82. Octavia

    Thanks for the information.

    So when I am told by a doctor that I have knotted muscles in my neck and shoulder, this might not be the case? I don’t want to throw money at a chiropractor when it’s something he/she is unable to resolve if it’s down to a deficiency in B12. I also have aches and pains across my body generally and at times a raw feeling across parts of my body which comes and goes, but I’ve never had shingles. Is this something anyone else has experienced?

  83. Ambitiouswoman

    Octavia,

    I want to recommend an excellent book to you that I have been reading. It’s from a nurse who also suffered from B12 deficiency for two years without Doctor’s catching what was wrong. She has a ton of helpful information that has saved countless lives across the nation. Her name is Sally Pacholok and the name of the book is called “Could it Be B12? An Epidemic of Misdiagnoses,” You can order it online at Amazon, any book store, or check out your local library.She also has very informative advice on Better Medicine’s website you can check out her forum on Vitamin B12 deficiency being commonly misdiagnosed.You will read of many having pain in their body such as yours.

    This book has changed my life and help open my eyes on many signs I have had for years. It can also help many loved ones or family members. My sister has had similar B12 deficiency symptoms and I encouraged her to go get tested also.

    My Aunt had a B12 deficiency that was misdiagnoses and years later the doctor told her it was MS. We later found out she stop taking her B12 shots because the Dr told her that her B12 was normal again. What we didn’t know is that she had to remain on the B12 shots for life… even when your B12 Level’s are back at normal ranges of 400 or higher… not 200 which my Doctor has told me is WAY TOO LOW. The reference range for B12 in America is far too low so diagnosis can easily be missed. In Japan the B12 low range is at 550 which is 2.5 times higher at its low end and Japan has very little “Alzheimer’s Dementia”, and less depression and bipolar disorders, than we do in the US.

    Once you find out if you are B12 deficient, I would suggest becoming a sponge to absorb as much information as you can on B12. Keep checking this B12 Anemia Blog, read books, research B12 deficiency “Pernicious Anemia” online, get your health care check ups to stay on top of this. If you have a Dr that is not aggressive treating you then find another one ASAP. It could save you a lot of agony in the future.

    Here is Registered Nurse Sally’s website forum and make sure you read her book also:

    http://forums.bettermedicine.com/showthread.php/9948-Vitamin-B12-deficiency-is-commonly-misdiagnosed.

  84. Laura

    I dont know if anybody can help me. Last year i received a letter from my GP to inform me that my B12 levels were very low at 85. My symptoms were constant mouth ulcers. I was given 2 weeks of injections and informed that i had pernicious anaemia. However since i have move to a new doctor, i have been told this is not the case. I have had numerous blood tests due to once again having the symtoms of mouth ulcers, tiredness etc. Every time my levels are tested, they have fallen (754, 267, 232, 187 in April). My last blood test in april showed that my levels had fallen to 187 (they were 754 after my inital shots). I seem to be getting nowhere with my GP’s, i keep getting told i have depression! I can tell my body is not right but dont know where to go from here. I have recently been very wheezy, have awful headaches and my vision is blurring. Can anyone offer any guidance? Many thanks.

  85. Liz

    Laura,
    I can definitely offer guidence, GET A NEW DOCTOR! Pronto! I would love to know how your new doctor is able to tell that you do not have pernicious anemia. Once you start shots or other forms of treatment for B12 deficiency it is impossible to tell what your B12 levels truly are. The shots or suppliments will raise your B12 levels and it will appear as if you are not deficient (until they stop the treatment and your levels go down again). I have had to write and re-write this reply many times because the things I want to say about this new doctor of yours are not nice or appropriate. Please don’t be afraid to get a second, third, fourth opinion (or more if necessary) until you find a doctor that knows about B12 and will treat you properly.
    Good luck, I hope you feel better soon.

  86. Sheila

    Wow I am so glad I found this site. I went to Dr last week to check out HRC therapy due to so many of the same problems I have been reading about. HRC is expensive but they did blood work and called me to tell me my b12 was 140 and I needed to start shots daily and sublingual b12 today. I thought they was nuts but I guess they knew what they was talking about. I go tomorrow for my first b12 shot and I have been taking the b12 sublingual since they called. Now I wonder if my regular doctor has these low results from my yearly blood test. Think I will pay the Dr office a visit tomorrow and get a copy of past results.
    I have had many of the things talked about about and a couple more. Breathing seems to be out of sorts and my left eye started twitching a few days ago. Does anyone have either of those things going on too.

    My big question is why are so many people going to neurologist?

  87. Laura

    Thank you so much for your post Liz. Its nice to know that i am not going crazy, which is what doctors seem to make me feel!! I am going to search out a new surgery, and pray that someone listens to me and helps. Thank you.

  88. Liz

    Sheila,
    Glad to see you found a good doctor who doesn’t take treating B12 lightly. I’m not sure about breathing problems, but I know that eye twitching/problems have been reported by people with B12 deficiency.
    Many people, myself included, need to see a neurologist because B12 deficiency affects the nervous system and can result in all types of issues ranging from mild tingling in hands and feet to severe pain or memory problems or worse. If you haven’t had any of these issues, consider yourself very lucky!
    Wishing you continued success and a speedy recovery!

  89. kerri

    I have autoimmune atrophic gastritis which has caused pernicious anemia. I have to give myself shots of B12 every two weeks. I have sufferd permanent nerve damage similar to neuropathy of a diabetic. I have pins and needles in my hands and feet as well as consant numbness. I also have lost the ability to start urination on my own which has caused me to be on a cath. It’s been a bumpy ride. My docotor assumes that I have been b12 deficient 10 years prior to ever being diagnosed.

  90. Linda

    I’m so glad I came across this forum. I was diagnosed with tachycardia last year which really scared me. I’m athletic and exercise regularly but last year my heart rate started jumping minutes into exercising (to 180-200) … My cardiologist did several heart tests but did not do any blood work. Last week I visited my regular doctor and she did blood work (which had not been done in 2+ years) and my b12 level was 65. She started me on injections once a week for 4 weeks and then I will get them once a month for 4 months and then transition to oral supplements.

    I have definitely noticed a drastic drop in my energy level, especially since I’ve always had a high energy level and now I feel tired all day long. I’m hoping the injections will help in time with my energy level and my doctor also feels this may be the cause of my tachycardia.

    Good luck to everyone dealing with this. I will continue to check back for more information and dialog.

  91. Tammy

    Why, if I’m taking the shots do my levels keep dropping? I have body wide pain with mine as well as foggy thinking. I actually gained around 20 pounds because of my low levels. Did anyone else go through that?

  92. B12 anemia

    Hi Tammy,
    If you are getting shots properly (the correct amount and often enough) it is impossible for your numbers to keep dropping. One of the reasons doctors hold off treatment while they do more tests is because once they inject B12, the count will go up and will give a number that looks a lot better then it really is. I would double check on that with your doctor.
    Pain, foggy thinking and weight gain/loss are all common symptoms of B12 deficiency.
    I hope you feel better soon!

  93. Molly

    Hi. My b12 level has been at 153 for the last nearly 6 months although I have been getting the injections. I am tired nearly all the time and for a time also have experienced EXTREME mood swings and night sweats. I had my hormone levels checked, thinking it could be menopause, but my doctor says not a chance, my hormone levels are too high. I started taking wild yam, nonetheless and that has helped a bit. I am a vegan. I do not like meat and I don’t take dairy but I do eat loads of nuts and pulses and take Ormus Supergreens every day as well. My fatigue is what concerns me at the moment. I am a yoga teacher and there are days where all I want to do is go back to sleep! I have been checked for pernicious anemia, but was fine and for gluten intolerance, but ironically, I rarely eat wheat. I have the weight loss, but over time and all vegans I know get that. The mood swings were and can be HORRENDOUS and scary. Help.

  94. Molly

    Also meant to say that I have not menstruated or felt myself ovulate in about 10 weeks. I’m not pregnant and hormone levels are high. Thanks. Cheers. :)

  95. kayley-jane

    hi there i had a blood disorder which was noticed about 8 years ago and i was only professionally diagnosed with anemia 2 years ago. i had numerous amounts of symptoms but my main concern was when my hair was falling out in clumps. i attended my local doctors for years but nothing was ever found so i changed doctors and within 3 months they had got answers to all my suffering. i am only 22 years old and have a 2 year old son an the symptoms i suffer from have had a massive impact on both our lives as he is so active and im always so weak and tired, i cant function properly get tired out easily breathless. i cannot eat properly which has now had an effect on my son and my main concern now is the light headedness, dizziness and shakes in my hands and loosing grip and dropping things. i also now have inflamed spleen and eye sight problems and insomnia. im really concerned about going back to my doctors as im scared of hearing that a lot of it will be iriversable. i also have a chronic pain which is causing nervousness and anxiety. i really wish i had changed doctors sooner as they may have been able to prevent this as itis no life for myself or my son. so i would recomend anyone with the 1st sign of anemia and b12 disorder to seek medical advice urgently!!!

  96. Kim

    I stomped into my doctors office a couple weeks ago demanding he figure out what was wrong with me.
    I am sick and tired of people acting as if i am a hypochondriac

    My hands hurt constantly, my feet are stiff and hurt when i go from relaxed to standing. I had these sores forming on the corners of my mouth.. and my gums were white and would bleed when i flossed. I am soooo tired.

    My doctor promised to help me .. and said we would chip away at the block. He ordered blood tests and my B12 came back at 204. Which he said is “low normal” that 200-800 was normal. But wants me to take 1mg of B12 a day and a b complex and re check in 6 months. I do have a appt with a gastrointestinal doctor in Dec to do a scope of my colon & stomach. I was hoping the B12 supplements would be immediate relief.. but from what i have read.. that isn’t the case.

    ugh..

    Well.. I guess it is a start. I am glad i found this site, it has explained a lot.

  97. Tj

    Took me about a year to have it diagnosed. During that year I was in and out of hospital. Treated
    For everything except B12. Even had lab work come back telling me that I had
    H pylori. Dr’s treated me for that. But never associated,
    Dizziness, fatigue, tingling, blurred vision, etc.
    To anything outside of mild stokes (wrong). After trying
    Hard to put me on anxiety meds ( I vowed not to take, to hide real
    Problem). Finally neurologist just gets tired and runs several
    Blood test that he had never run. When test comes back, he says nothing here
    Explains ur symptoms….your b6 is low, but that won’t cause that.
    Your b12 is within range 201, so ur good there. A week later
    He calls me to say….see your internal med dr. U have low
    Intrinsic values (body can’t absorb b12). My internal
    Med Dr. gave me a big hug, told me she was happy we found it and we began
    Treatments. Don’t miss shots, starting over puts u in remission.

  98. Chris

    In April, after being extreamly ill through the winter with ALL the symptoms mentioned, my Internist found my B12 was 39.6, started shots weekly, then monthly. After 3 months was 213, shots then once every 3 weeks, last week level was 295, shots again every week for 4 weeks then back to monthly, will check levels again in Jan. I have had essential tremor for many years in head but now effects body and hands. My Internist was very upset that Neurologist never did ANY blood work prior to diagnosis of ET and treating me with many different medications. I lost my job a year ago, now know my illness was a big factor in that. I am still very sick, still have all symptoms, wondering if I will ever get better. Note, other family members that have pernicious anemia, Mom, Grandma, cousins, all on shots. If only doctors had found this years ago!!

  99. Missy

    I have been lightheaded/dizzy for about 4 weeks now. My doctor thought it was anxiety and gave me some Xanax. I tried it, but it didn’t do a thing to me, might as well have been sugar pills. Went back, she took some blood, did a CBC and full metabolic panel – everything came back normal – sent me home.

    I put on my Google Pants and found MANY symptoms of low B12 applied to me. I have the lightheadedness/dizziness, extreme fatigue, my typically normal periods have stopped completely for the last 3 months (I’m 35, not pregnant), hair loss, muscle crams and hand and feet tingling.

    I wrote my dr and said I wanted a B12 test – she told me that it was very unlikely that I had low B12 because my other blood tests came back normal, but humored me and ordered the test. The result was 272.

    I haven’t spoke to my Dr. yet, I just had the results emailed to me this morning – but I am willing to bet she will say I’m fine since I’m in the “normal range”. I know that’s on the lower end of the scale, but could this explain such pronounced symptoms? I wouldn’t think that I would be so dizzy and lightheaded all the time if I’m not down in the 100′s like many/most of you here in this forum.

    Regardless, I would like to start taking some supplements – is it a good idea to start on my own or should I do this under the advisement of a doctor? I just hate having to wait to find a doctor who would be willing to treat me.

  100. Chris

    Hi Misty, my count was last 295 and my doctor said this is still much to low. My blood tests showed abnormal red blood cells and also most all other counts were very abnormal. It is one thing to get the B12 count higher, but I don’t absorb the B12 in my abdomen so they don’t feel taking pills, eating more of the “better foods” etc. will help. I get injections into a muscle to get the B12 into my body. I am told it may take years to get my level to a good place and maintain it. I still have all the symptoms and don’t feel well at all but I do a little each day, get plenty of rest, eat well, and try and pace myself. There are days when I hate this anemia but I know it will be with me for the rest of my life so…I make the best of it. If your doctor is not good about treating you, get another doctor! I may not feel well but I am better than I was 6 months ago. Don’t give up. Until you start treatment, of course educate yourself on the better foods to eat, listen to your body and rest when you can, and find ways to enjoy your life!! Good luck and write us anytime you need to vent or share.

  101. Missy

    Thank you Chris! It is nice to know that I’m really not crazy – my symptoms are real. :)

    As expected, my doctor dismissed the result as normal since it fell within the range. I’ve made an appt for next week with a hematologist/internist and hopefully they’ll be more willing to consider the results and treatment.

    Thanks again, I appreciate the feedback! I’m glad you’re feeling better with your treatments by the way. :)

  102. Chris

    Speak up for yourself and the treatment you need. It is one thing for the doctors to say you fall in the normal range but if you do research on the web you will find that levels below 400-500 can produce symptoms. It also has a lot to do with how your body is absorbing the B12. They also found that my calcium is a little elevated as well as the parathyroid hormone so that is being watched. My cousin discovered he had a very low B12 when his thyroid gland went bad. Keep on top of your health and the doctors. Let me know how you make out.

  103. Lori

    A few weeks ago I had tried to give blood and my iron was too low. This is the 2nd or 3rd time in the last 8 months. I was also feeling weak and light headed (during physical activity). I have been extremely fatigued in the last few months. I thought maybe it was just stress, but I had a blood test Tuesday and my doctor called me today saying my B12 level was too low ay 212. He said anything under 400 was need for concern. I start shots Monday…once a week for 8 weeks. I’m glad to read my doctor seems to be proactive and knowledgeable about how to treat B12 issues. Thanks and hope everyone gets theory levels up.

  104. Lori

    A few weeks ago I had tried to give blood and my iron was too low. This is the 2nd or 3rd time in the last 8 months. I was also feeling weak and light headed (during physical activity). I have been extremely fatigued in the last few months. I thought maybe it was just stress, but I had a blood test Tuesday and my doctor called me today saying my B12 level was too low ay 212. He said anything under 400 was need for concern. I start shots Monday…once a week for 8 weeks. I’m glad to read my doctor seems to be proactive and knowledgeable about how to treat B12 issues. Thanks and hope everyone gets their levels up.

  105. Christine

    Wow I am so happy I have found this site. My first question is how old is everyone around? For a few months now I have not been feeling “myself”. I frequently felt out of it and so many times I had the feeling of a “fog mind”. I would easily forget things. But this happen occasionally. It felt like I had dementia but it couldnt be because I am only 22 years old. My anxiety was abnormal and I would get so aggravated that I was so out of it. I was getting enough sleep, I wasnt stressed, and at a good time of my life. I couldnt understand why I was getting depressed at times or just down. Over the past 4months I would go to the doctor and was reported to have low blood pressure. I finally went back 2 weeks ago after not being able to handle this and my Doctor told me I had low b12. After doing some research I called back to get my score which was a 239. She told me to get b12 vitamins of 1000mcg. Should I be more concerned and should demand to get shots? I am only 22 years old and had nausea random times during the week, constant fatigue, blurred vision, hip and groin congestion, anxiety, some headaches but a pain that as if it feels like it was in my brain, constant “fog”.

  106. Chris

    Hi Christine and Lori, When they did my blood work, CBC,CMP, B12, Folic, etc. they also did special tests that showed my red blood cells were abnormally shaped, most all my levels were bad. These tests confirmed I have Pernicious Anemia, meaning I don’t absorb B12 from food or vitamans from stomach thru small intestine. Because of this I have no choice but to get injections. My Mom, Grandma, and cousins have this also. Use your computer and do research, educate yourself, and talk with your doctor about your concerns about vitamins vs B12 injections. I am now 55 but was told I probably had this for years for my count and symptoms to get so bad, was 39.6 when discovered. I am around 300 now but still have really bad symptoms. Time will tell. Good luck and I hope you start to feel better soon.

  107. Sri Lanka

    Hi I am 38,treating for Hypothyroid, 6 months back my B12 -292, my doctor prescribe me Nervigen but doc completely ignored my B12 report(top class Endocrine doctor),recently i got some anemia situation, I have very low memory and and lot of language drop. I Feel i need to go for B12 shoots or stick on high B12 food. how to check how my absorbing level of B12 on food, any test ?

  108. Missy

    Lori – you’re lucky your doctor is on top of it! I have an appt on Thursday with someone new, hopefully this one will do the trick.

    Christine – I’m 35. My level is 272 and I have many of the same problems, so it’s not just age. One thing that I’m interested in is WHY is my level low? Am I not absorbing? There is an underlying reason and I want to know what it is – to me, that should determine the treatment. If you can’t absorb it (like the penicious anemia), pills won’t do any good.

    I hope now that you and your dr determined the problem that you’ll start to see some relief with a treatment plan. Good luck

  109. Ginger

    I am also glad I discovered this site. I had an MRI and a CAT scan one week. The next week was sent to a neurologist who set me up to have a spinal tap and a brain angiogram. He told me it was possible that I had MS. I did have most of the symptoms. When we got the results he told me B12 deficiency mimics MS. My B12 number was 165. Now I am wondering if I should get a second opinion or not? I am getting weekly B12 injections from family doctor. After one month we switch to monthly injections for an additional 6 months. I’m also on oral B12 and folic acid. My MRI of 4 1/2 years ago was almost identical. I’ve got the ringing in the ears, mild depression, severe migraines lasting 3 weeks, my mind is slow and memory loss. I am only 54 yrs old. Tired all of the time. I felt certain it was MS. I also hope to feel better but realize if I’ve had this deficit long enough to cause the 15 lesions on my brain and deterioation to my mylien sheath I’ve probably had B12 deficit for many, many years. Any suggestions? I am single and have an adult high needs daughter living with me. I’m very concerned because she depends on me 100%. THANK YOU. Ginger

  110. Ginger

    I forgot to mention that my balance is off. I am unable to walk heel to toe without almost falling over. I’ve also had severe pain in my shoulder blades. I do not have a history of migraines as I’ve only had them 3 times in my lifetime. My ears ring 24/7 and have for ohh about 7 years maybe.

  111. Chris

    Welcome Ginger, It sounds like we are about the same age and symptoms. I have not had MRI, CAT scan or spinal tap but sure have had a lot of blood work. I was told it would take a long time to get my levels up and then the trick is to maintain them. I still have bad symptoms. Just had a very through eye exam today, my vision has gotten very blurry last few months, all is OK, they said I need a check-up once a year or more often if sympltoms indicate it. My vision did get much worse so need new lenses. The B12 problem and the injections can do damage to the optic nerve and cause blurry vision. I guess the best advice is we know our bodies and if something is off, speak up. Good luck!

  112. Ginger

    Chris, It was the blood work that did determine my B12 problem. They were doing the other testing to find out why I felt so awful; thinking I had multiple sclerosis. Thank God it isn’t MS. There is no telling how long I’ve had a deficit of the B12. Thank you for your response. You are correct; we know our bodies. When something is off we are the first to know and be capable of taking action. I am sorry your have vision issues. I have yet to experience that. My biggest issue is the lesions on my brain, deterioration of the tissue that protects my nerve ending in my brain, balance issues and pain. I will remain on the maintenance program my doctor has diagnosed. Everyone hang in there. Without HOPE what do we have?

  113. Moni

    I am 29 yrs old. I had challenging time for nearly 4 months, I reside in India. I visit US on official purpose . This year was quite challenging I had my division closed down, I was moved to new division in the company. After this started all my problems. I am quite physically active guy. I started to get pain in the lower back to begin with , then it spread to shoulder blades – rib pain – limb pains and severe headaches. I made a few visits to a ortho doc who was diagnosing for 1 month on weekly basis , thinking it was myofacial pain orderly uric acid tests, thryo tests ,ultrasound on all organs, every thing came normal. Since this doctor was out of my town. I had to take frequent leaves. My employer thought I was fooling around thinking I disliked his divison. I could not continue with the doctor, looked for a local ortho he diagonised me with Fibromyalgia, and advised me physiotheraphy. I continued this , the conditions became worst.I got these problems. I was not able to complete tasks on time, since this caused cognitive problems. Already in problem with manager over taking sick leaves. I was fired . Then I went to neurologist he said (without any tests) it was due to depression with my job loss and things will get better once I land in one more job.I got eye pains , facial muscle pain, went to eye doc, everything was normal.

    I had all the time in the world to see whats going on with my body. After doing extensive research on fibromyalgia (cause unknown treatment unknown),thinking sometimes, its psychosomatic as per different research papers. I came to know it mimics lyme disease, and able to connect the dots of my past .last I visited US I was in Austin , stayed in a hotel who’s backyard had a deer park. I got insect bite quite big one during my sleep, I did not notice what bit me. Next morning I found big rash, few days of fever, I was aware of lyme disease at the point. It was eight months after returning to india, i got these problems. I went to Internal medicine doctor to find if it is lyme, luckily she was someone who has returned from US, and has treated lyme patients. I tested negative for lyme (not sure if the lab results are correct, and this test is quite tricky).

    Then my new Internal medicine doctor (proved lucky for me she did not fully believe the psychosomatic aspect of it ) decided to do a battery of blood tests. Found out Vitamin B12 deficiency and Vitamin D, my readings were 88 . Then she ordered for endoscope to test for Helictobacter pylori , which causes vitamin b12 not to be absorbed by the body. I tested positive for this. So oral supplements wont work for me, I had neurobions hot every day for week , then weekly once for 2 months and on antibiotics to get rid of bacteria.Feel a little better, but some random days I am fatigued not able to concentrate and as usual random pain at different parts. Looking forward to see if this gets cured.

    I have still my own doubts if this was indeed lyme, that was not detected properly.

    With this experience of mine, got a few positive thoughts, Doctors can help u but human body is a mysterious machine with hidden troubles, that are common for many diseases out there. So please don’t blame the doctor. Believe in yourself doctor is not God, sometimes they might not be able to find out. If you feel something is wrong dont shy away from testing if it is true, for you alone (apart from God) knows , the true feelings of ur body. Some people may bullshit that its all in the Mind.

    And last but not the least, I have to thank the developers of the Internet , who have empowered us ,no matter which part of the world, with connectivity and knowledge that can be shared.

  114. Missy

    I went to the hemotologist today and she was livid that my original doctor dismissed my b12 numbers and said that I definitely need therapy. She is having me do daily injections for 3 days, then once weekly for 4 weeks hen monthly. She took 9(!!) vials of blood to check for various issues, thyroid, celiac disease, intrinsic factor and other stuff. Hopefully we’ll have some answers in a week. She also noticed a heart murmur and given my mother’s history (she had calcification of her aortic valve and had to have it replaced), she is ordering an echocardiogram to check out my heart’s health.

    So – I’m glad she’s taking me seriously and starting me on therapy, I’m so so so relieved. For those of you that started with the injections, when did you start to notice a difference? I know it takes time to build it back up, but just curious your experience of noticing improvement.

    I go back next Friday to discuss the blood/heart testing. Thanks for being here! :)

  115. Chris

    Missy,I am so happy for you finding a doctor that is taking this seriously. I started on weekly shots for 4 weeks, then monthly but my levels are coming up very slowly,so back on weekly another 4 weeks than monthly, will recheck levels in Jan. I started to notice improvement fairly soon but at a very, very slow pace. The first 3 months the doctor wanted me to rest and not do anything that was not necessary. I still have most of the symptoms, not as bad, but not nearly what I was hoping for but keep in mind my level was 39.6, and now 6 months later I am at 295. I hope the doctor is running a test for calcium levels as well as parathyroid hormones, they did on me and mine were a little elevated so will be rechecked in Jan. also. With your Mom’s history of calcification you want to be sure you are not having to much calcium in your blood. I look forward to hearing how you make out next week. Good luck and keep us posted and know I am thinking about you!

  116. Lorraine

    Hello,
    I have b12 deficiency my level is 135. The doctor prescribed 1000mg tabs every day forever. The numbness, tingling in the hands, tired all the time etc. I don’t know if anyone else has experienced back issues. I have never experienced any back pain in my life, but now I have pain in the lower back down both legs, have trouble getting up, or sitting down(even turning in the bed) I am wondering if this is related to the deficiency? I have always been a very active person, but the back issue is frustrating.

  117. Missy

    Thanks Chris, you are very sweet and so caring. It’s nice to have someone to talk to that understands. :)

    Yep, the dr mentioned the calcium testing and thyroid testing as well since my mother also had her thyroid removed later in her life – she was a mess medically. My mom passed away a few years ago and she kept alot of her medical issues to herself as kind of a protection for her kids – it kind of sucks in situations like this though, my dr was hoping for more info on my mom’s medical history to consider different issues with me… but I really only know things like she had her thyroid removed, but I don’t know the reason why.

    Anyway – sorry about the bunny trail, my mom had alot of issues, I told her what I knew and I think that’s why she’s running all the tests she’s running like the thyroid/calcium, cardiogram etc…. I am happy to have found this dr, she is thorough and I have a 3 year old little girl who needs me (healthy) here at home. :)

    Thank you for your experience Chris. I can’t even begin to imagine how bad you must have felt – and still feel – at that level. I am happy that your numbers are rising and hope they continue to do so. This B12 stuff is amazing! If only it worked faster, huh. Thanks again.

  118. Debbie

    Hi Everyone

    Thank goodness I have found this site!!

    I have been feeling so tired and unwell for months and last November I went to the Doctor because my left foot started to go numb. She told me to lose some weight and change my footwear. She recommended Fitflops which have actually helped support my feet. I have been struggling for nearly a year and I started to get periodic pain in my feet which meant that I could not walk. I went to see another doctor about a month ago and he prescribed anti inflam tablets. He also told me to do a fasting blood test. I had blood taken on the Monday and on the Tuesday my doctor rang me and said to go and see her which I did. She said my B12 was low and so was my folic acid. She gave me a B12 injection and said I should have one every month and am on 5mg folic acid every day.

    After a couple of weeks I just felt no better so I arranged to see another doctor at the practice. He immediately asked me if I was having my 2 injections per week!!…I said that my doctor had said one a month. He said my B12 level is 147 so I am on 2 a week and he is now my doctor. I am having more bloods done this week to see how the level is but from reading all the posts I think I should be asking to see a neurologist as my right foot is going numb now and I find it difficult to walk, and I lose my balance.

    It is very frustrating being so tired all the time and I have always been so active. I am 50 years old.

    My new doctor said that a blood test should have been done a year ago when I presented with a numb foot. I am trying to be optimistic but I don’t think I will get the feeling back in my feet. That is a bit scary.

    It is good to know that there are others that I can talk to. It is difficult to make people understand how debilitating this problem is.

    I will keep in touch with this site and if I can help or share any information I will.

    Debbie x

  119. Bernard Linsley

    After years of a being very tired, extremely bad tempered, suffering appalling short term memory and unable to cope with life I finally went to see my doctor. I had delayed on my annual health check for almost nine months. A blood test revealed my level was only 95! The practice nurse at my local surgery on receiving the results called me saying I was to get to the surgery immediately. On arrival she said she had received my blood results and that my B12 level of 95 had put me in a perilous position! I received the first of a series of injections over a nine month period and my level is now around 435. Vitamin B12 is responsible for oxyginating the red blood cells. This happens in the gut via an agent called intrinsic factor. If the factor is missing and it could be, then eating the right food or taking B12 supplements will not work. No intrinsic factor means you will never get B12 to do its job…The bottom line you can die! You need to get the injections straight away and whats more you may need maintenance injections for the rest of your life. Early symptoms of low B12 can be itchy tongue causing one to ruminate (you see elderly people doing this sometimes continually moving the mouth as if chewing a sweet or lolly) or itchy fingers especially on a the wedding finger. One also may suffer from short term memory problems which infuriates people who live with you or you work with. Itchiness is caused by the nervous system beginning to shut down. Failure to remedy a low B12 can cause blindness, a loss of a limb or in the worst case scenario death. Doctors are beginning to realize this condition is more common that originally thought. If anyone is suffering from depression then the first thing to test for is low B12! doctors who prescribe anti-depressants may be off the mark. After 9 months of receiving B12 I feel absolutely great, I now have 3 monthly maintenance injections and that seems to be working for me. If anyone wants to contact me via email about my experience and to get my thoughts on this very serious but easily remedied condition then please do so, my address is bernarddlinsley@gmail.com

  120. Jann

    I was diagnosed with P.A in April of 07 (due to lack of Intrinsic Factor) right after my mother passed away. I was hospitalized for 3 days and recieved 3 bags of packed red blood cells. Then I was on 2ml I.M 1x a week for the first 6months since then went to 1.5ml I.M. once a month, which I am still currently on HOWEVER I have noticed that sometimes my . . I can tell that my B12 levels have dropped quite quickly ( over a matter or several days) even if I have recently had my I.M I am not sure what makes my levels drop so quickly . . . any ideas.? ? ?

  121. Missy

    My test results all came back normal. No Pernicious Anemia, no thyroid problems, calcium was fine – all of it. No reason whatsoever for the deficiency. On one hand, I’m glad there’s nothing, on the other, I’m sad there isn’t an explanation.

    I’ve been taking the shots for about a month now. 3 daily then weekly…. I was feeling okay, but the last couple days have been so so so rough. I am SO dizzy. Severe headaches, I just can’t hardly function. Does this sound normal? I know some said they were worse before they got better… I’m beginning to wonder if my dizziness is from something else, not the B12. I’m considering going to the hospital today… I am at the end of my rope.

  122. Chris

    Hi Missy, Sorry you are still not feeling well. My concern is your brain. Have they done an MRI with contrast? They would be looking for growths, blood flow problems, nerve damage etc. My Mom had these symptoms and had a brain tumor, non-cancer, was removed and has lived a normal life (this was 30 years ago!). Even though my B12 has risen it was only 295 a month ago. I was back on weekly shots and now monthly. It is a catch22, I feel a little better but suffer terribly from the shots, headaches, dizzy, hard to function, aches, flu-like. Sound familiar?? I know it is hard, but try and stay calm, address the headaches, and if possible kick back and rest. I will be praying for you. Let us know how you make out. Once I got off the weekly shots a lot of these symptoms went away! Good luck. Chris

  123. Chris

    Hi Jann, Welcome!! I can always tell when my B12 level is dropping and yes, within a matter of days. It appears I have had the PT for some time and a lot of the symptoms have stayed with me. I have learned to pace myself and my days, get plenty of rest when my body save I need it. I feel so bad hearing that others get to feeling so bad, been there. The best advice I can give everyone is to listen to your body. You will know when you are due for another shot, when you need to rest, or if something else is going on. Good luck!

  124. Chris

    Welcome Debbie, I also suffered the numbness all the way up to mid-thigh. It is now at mid-calf. Good luck with your treatment and please keep us up to date with how you are making out. We all care about each other. Hi to you also, Bernard. It sounds like you have, like me, researched and educated yourself about this condition. I have been treated with the injections, was told pills were not an option. Glad to hear you feel so good, keep on sharing with us.

    Happy Thanksgiving to everyone!!!

  125. Ginger

    I posted a few weeks ago. I am 54 years of age. My health has been excellent until recently. If you have symptoms that don’t make sense please make sure your physician runs some tests. I have probably been B12 deficient for a very long time; most likely at least 16 years. Migraines lasting 2 1/2 weeks brought on a cat scan, followed by an MRI, a brain angiogram and a lumbar puncture. My neurologist thought I had Multiple Sclerosis. My diagnosis ended up being B 12 deficiency with my number at 160. I have 15 lesions on my brain and the fatty tissue that protects my brain is showingh major deterioration. The deterioration and lesions are most likely irreversible. Symptoms? They began in 1999 and were never researched to my satisfaction. My symptoms were severe muscle pain in my shoulder; pain so severe I would throw up, tingling feeling on the back of my thigh; this was a recurring symptom, anemia, anxiety, migraines 4 1/2 years ago and again just recently.
    My physican at the time ordered an MRI 4 1/2 yrs ago. I asked his office to send a copy to my neurologist. My MRI showed the lesions and the deterioration back then. I was never told the results of the MRI 4 1/2 yrs ago.. If the symptoms had been followed up on I could have begum treatment 4 1/2 years ago.
    My balance is off, my memory and thinking skills are suffering, I stay exhausted and my shoulder pain is now in both shoulders and very severe. I was also diagnosed with anxiety and depression within the past 4 1/2 years. I’ve also been diagnosed with tinnitus (ringing in the ears). These are all symptoms of MS and B 12 deficiency.
    I had weekly B 12 injections for a month. Now I receive monthly injections for 6 additional months. I am only in my 2nd month of treatment. Oral B 12 and folic acid is also part of my regimine. We will do another Cat scan at the end of 7 months to see if my brain has improved at all.
    My daughter (24) is a high needs adult so you can imagine my despair over these health issues isn’t just about me; I am totally responsible for her also. She is bipolar I and it is a very difficult illness that has no cure and lasts a lifetime.
    I urge you to realize the importance of doing your research, being prepared with questions for your physician. I am a problem solver by nature and a researcher.
    Best wishes to everyone and a happy Thanksgiving. Keep HOPE alive!

  126. Chris

    Realized last night it was time for my B12 shot. It is bad enough when my feet, legs, and hands get the numb/tingling all the time but when it feels like someone is sticking me with long needles I know my levels are dropping. Ginger, I have been told that the problems from my low B12 levels may be permanent also which does not make me happy but I just keep telling myself it could be a lot worse. I pace myself doing things on good days and resting on not so good days. Sure hope you are feeling better in the near future.

  127. veronica pudney

    I am 56 was diaognosed this year and currently having b12 injections once a month but still does not feel enough still feel extremely tired and unwell all the time. I also was diagnosed with high blood pressure and have to take meds for this. I feel really annoyed after reading some of these posts that my doctor has not explained that this is a seriouse condition.

  128. chris altomare

    chris, just found out that i have low b12. 182 range. i also have tinnitus for about 5 years, numb/tingling especially at night. i am 59 years old and in good shape that goes to the gym 4 times a week. for the last 5 years went to the doctor for number of reason for not feeling right. finally i think the doctor just started to realize somedthing just isn’t right. had many test done. going to see the doctor next week. first time since finding out about low b12.

  129. Chris

    I also suffered with symptoms for at least 5 years. Doctor kept running blood test for thyroid, which was normal. When my organs started to show signs of severe distress, labs done for B12, count was 38.6!! Injections, total rest for 3 months, has been 8 months now and still have most of the symptoms, some a little better. One of my doctors, who has since retired, would say to me, your count is up to 295 now, you should be fine. She can’t understand how bad I still am. The key is to find a doctor that really knows and understands how this condition effects us. Having a higher count does NOT mean it is being absorbed and used in our bodies properly! My Grandma had this and used to need blood transfusions every once-in-a-while. She even lost her vision at one point. If you have not done so, make sure you eye doctor knows you have this and that they moniter your eyes, optic nerves. This disorder can cause loss of oxigen to all organs. Some days my brain is mush. We all need to be proactive about this condition and be certain our health care providers are taking the best care of us.

  130. gailita

    For the past months I’ve been fatigued, having brain fog/memory loss and my left leg and arm felt kind of weird not really numb -cant really describe it. Went to the Doctor who told me my memory loss/ fog could be due to stress or lack of sleep. I’m not convinced that’s the reason. Anyway,he did blood work and here are the results from my cbc: WBC 4.6, RBC 4.27, Hemoglobin 12.1, Hematocrit 36.4, MCV 85.4, MCH 28.5, MCHC 33.3 , and my RDW is 17.7 which is high. Doctor told me everything is normal but my body is telling me different. I’m still experiencing headaches,slight body tremors, think I have a slight case of vertigo( when car or bus moves my head. Feels like its also moving). I don’t know what to do. Does a high RDW mean I’m B12 deficient? Helpppp!!

  131. Chris

    Hi Gailita, Your counts are in the normal range, however, with the symptoms you have a B12 blood test is in order. Tell the doctor you want it run, now! If he does not think it is needed get a new doctor. I don’t believe the symptoms you have described are from lack of sleep/stress. Every symptom you describe, I had and still have. Let us know when you get results of a B12 test! Good luck.

  132. leanne

    hya all, well firstly wawi never knew so many people suffered and about all of the symptoms! thank you all for the information and your own experiances. im 23 and am suffering with low b12 – its 173 also low slightly low iron and low folic acid.
    i only found out about this when a docotor advised for me to have a b12 test done along with my iron and folic acid whilst i was pregnant as i have a history with low iron from my previous pregnancy whos know 2 and a half my other being only now 5months. when i delieverd my eldest from an episode of nearly fainting in the shower hours after having given birth they tested me and found my iron was 6.2 apparently healthy level for a woman is 14! 3bags of blood later pushed me up to 8.6 and then a lovly course of tablets for a few months took me to 10.3 should i of been tested then for b12 i wonder! anyway my b12 results came back low whilst pregnant this time around 6months into my pregnancy had 3shots within 3weeks and then i was left no further tests as the doctor believed it was surfficent enough for me at the time. since having had my baby i had not been seen for further tests so i put myself forward requesting them and everything is low again but only had one shot evanthough its 173 as they want me to go back to my doctor in cyprus and seek further advice – i am a birtish citizen just out there working and currently home visiting – had the shot a month ago now and i dont feel any different. ive always put it down to it just being me the way i am always dizzy spells being tired joke about my useles memory but i will defiantely be pushing for further investigation from reading all of your experiances above! thank you all again so much and i will be keeping an eye on here to find out more.

  133. leanne

    forgot to add also loosing my hair!!!this is highly distessing for me people all said it because of having had a baby but the amounts im loosing is just not normal i lose firstly when i shower but not the normal amount before i never evan used to note what id loose in the shower but now i cant help but notice my hands get tangled in it, then when i brush my hair before i start blow drying and then finally once i have finished blwo drying!!!! its awful!also evan wake up with hair on my pillow in my bed!

  134. marie

    I was diagnosed with pernicious anemia 1 1/2 years ago. My levels were down to 124 and I couldn’t get off of my couch. It took everything I had to make it through the work day. I was having symptoms of extreme fatigue for about a year, and began having memory problems and bladder control problems for 6the months prior to diagnosis. The scary thing was that my doctor kept insisting that I was iron deficient only, and that I should eat more red meat, despite a year of complaints of this fatigue. It wasn’t until I mentioned memory problems that he thought to test my B 12 levels. It is scary to remember this time, now realizing that I was near death. Not only is it important to get a diagnosis, but also the reason for the low B12. If you lack intrinsic factor, or have anti-parietal cells, you will not be able to absorb the oral supplements well enough to correct the problem.I require B12 injections for the rest of my life. I am thankful that these injections are available, as when they were not, this disorder was fatal. I only wish that my doctor would have tested me sooner, before my levels got so low. I continue to have memory issues, despite a B12 level of 800 at my last bloowork check…not sure if this will improve…please do not be afraid to be proactive for yourself, and if your doctor doesn’t have the answer, go elsewhere! Sometimes a fresh set of eyes can not only find the problem, but can also save your life. Be well!

  135. Christy

    I went into the doctor this week for numbness and tingling in my left arm and he thought I had pulled a muscle, but tested my thyroid and B-12 levels just to be sure. I got a call today (Friday) that my B12 level was 31. I am suppose to go in Monday to start weekly B-12 shots, but I don’t know what questions to ask or if I should be worried about underlying conditions. I have been researching online and I am getting scared. I am also kind of worried that I have to wait three days after being told my level was so low to start the shots. Will it be okay to start the shots Monday?

  136. Aniruddhsinh Parmar

    My father have 169 count of B-12 and he has started his treatment before 2 months and he had took 7 injections of B-12 and he is taking pills for the same and now doctor told us to take one injection per month. but still he is feeling stiff body and he is also having ulcer in mouth and at some time of the day he is also feeling pain in ear.
    please suggest me should i we continue with the treatment or consult neurophysician?
    in so many post i read about the Neurophysician so if possible explain is there any specific role of Neurophysician to overcome the deficiency of b12

  137. Chris

    Finally got another shot today. This past week I have been exhausted, no energy, sleeping a lot. I don’t know about everyone else, but I sure can tell when my levels are going down. Like usual, now I have a nasty headache from the shot and will feel like **** the next few days but then I do feel a bit better for a couple of weeks. Hope everyone has a Happy Holiday and New Year!

  138. Rachel

    I have had to take B12 injections every 2 weeks now for about 4 years now. I have never had it go higher than 242. Makes me a little worried but I have been tested for everything. I am not anemic in any way, I dont have intrinsic blocking factor, any of that. Its weird. But my question is when I get the shot within 5 minutes my feet, hands and like the upper part of my stomach start to tingle a little bit for about 15 minutes. Sometimes even my tongue. Nothing scary just noticeably weird. When I ask Dr’s about it they look at me like I am crazy. Does anybody have this?

  139. rach

    I was diagnosed with low B12 by my thyroid dr. I had a level of 250 last year. I still have major pain in my neck/back, numbness in hands and feet, I sleep 10 hours a night, low energy, head aches, blurred vision, cant concentrate, increased ADD symptoms, depression, hair loss… I normally have lots of energy, 20/20 vision, Im a super happy person… I was perscribed the B12 shots, but only one round, never checked on my ending level, and never took B12 after. I now have all the same symptoms even though I started taking B12 liquid a while ago. Does this liquid help? I also found out that there are some veggies said to “have” B12 but they actually block B12. Aparently you can only get B12 from meet, fish, liver, eggs… Alcohol is actually really bad because the next day after drinking you body burns more B12 than normal to heal itself. Smoking can also do this too. I currently stopped both drinking and smoking hopefully it’ll help.

  140. Chris

    Hi Rach, If your body is not absorbing the B12 the pills/liquid will do no good. I know someone who was treated with shots & when level was up, he was switched to pills & liquid under tongue. His levels fell again & is now back on shots every two weeks. I also do not absorb B12 & have been told I will need shots all my life. I will have new blood levels done mid Jan. Three months ago I was around 220 but still have all the symptoms, just not nearly as bad as when my level was 38.9! When I get the shot I notice a metalic taste and I get sick for about 4-5 days, stomach ache, intestines, runs, terrible headaches, mustle aches…but then I feel (just) OK for a couple of weeks. Once I am 3 weeks out from shot I can feel my levels fall because symptoms get a lot worse. I also sleep 10 hours a night and if I do to much in a day I will sleep up to 12 hours that night. Exhaustion is a part of my life, I just except it and rest during the day with a nap if need be. Except for low B12 I am not enemic. Not at all happy about this but at least I am alive and enjoying my life around not feeling well. Good luck, hope you all feel better.

  141. Ella

    HI, I JUST READ ALL BLOGS ABOUT VIT B12 AND WAS IMPRESSED HOW MANY PEOPLE HAD PROBLEMS WITH VIT B12! MY STORY ALWOST THE SAME. I RETIRED 2 YEARS AGO AFTER I WAS DIAGNOSED WITH OSTEOPOROSIS AND HAD SEVERAL FRACTURES. I WAS A PSYCHIATRIST FOR MANY YEARS BUT DID NOT PLAN TO RETIRED YET.
    MY MOTHER HAD SEVER PERNICIOUS ANEMIA LATE IN HER LIFE.HER HEMOGLOBIN WAS AS LOW AS 7. SHE HAD NUEROPATHY OF HER FEET,LOSS OF MEMORY AND PAIN IN HER MOUTH. IT WAS NOT CLEAR WHEN SHE DEVELOPED FIRST SYMPTOMS. IT IS KNOWN THAT PA IS SILENT KILLER. SHE WAS TREATED WITH INJECTABLE VIT B12. SHE DIED NOT FROM PA BUT FROM ATRIA FIBRILLATION IN AGE OF 89. I WAS ONLY CHILD AND SHE HAD ME IN AGE 37. FOR MANY YEARS I TRIED TO TO GET INFORMATION IF PA IS GENETICLY TRANSMITTED, BUT I WAS NOT ABLE TO DO IT. DOCTORS DID NOT KNOW!!! I THINK I GOT EVERYTHING FROM MY MOTHER: HYPERTESION, ATRIL FIBRILLATION AND FINALY LOW LEVEL OF VIT B12. ABOUT 17 YEARS AGO I HAD VIT12 CHECHED AND IT WAS 800. I TRIED TO GET LEVEL AFTER THAT ABOUT 8 YEARS AGO BUT DR SAID THAT I HAVE TO HAVE DS OF PA, OTHERWISE INSURANS WILL NOT PAY FOR TEST. DID YOU HEAR ANYTHING LIKE THAT? I DID NOT HAVE PRIMARY DR FOR MANY YEARS, JUST CARDIOLOGIST AND GI DOCTOR. FOR LAST 2 YEARS I STARTED FEELING TIRED ,HAD EPISODS OF PAIN IN MUSCLES AND BONES. MY MEMORY AND CONCENTRATION BECAME WORSE, I LOST A LOT OF HEAR. I DEVELOPED “ALLERGY” AND HAD SYMPTOMS SINCE FEB. LAST YEAR AND I STILL HAVE THEM.IN DEC.LAST YEAR I FINALLY FOUND PRIMARY DOCTOR. SHE ORDER COMPLETE BLOOD WORK AND IT TURNED OUT THAT I HAD VERY HIGH TSH, AND VIT B12 – 216. NEXT TEST IN 10 DAYS SHOWED THAT MY TSH WAS NORMAL BUT FREE T4 WAS HIGH!!!!! AND MY VIT12 WAS 180.SHE RECOMMENDED TO DO VIT B12 INJECTION ONCE A WEEK. BUT IT WAS ABSOLUTELY WRONG! I KNOW THAT IF YOU HAVE SO LOW LEVEL YOU HAVE TO START INJECTIONS EVERY DAY FOR 7-10 DAYS, TNEN TWICE A WEEK FOR A FEW WEEKS AND THEN LEVEL SHOULD BE REPEATED. SO FAR I WILL FINISH WITH EVERY DAY INJECTION IN THE END OF THIS WEEK. I WILL SEE DOCTOR ON FRIDAY AND SHE WILL ORDER TEST FOR TSH AND PROBOBLY OTHERS. I WILL ASK HER TO REPEAT VIT B12 AGAIN.
    NOW, I DONT HAVE ANY IDEA IF MY EPISODIC ATRIAL FIBRILLATION CAN BE CAUSED BY LOW VIT B12 LEVEL. I DID NOT FIND ANY DATA ON IT. I HAVE TO FIND OUT.
    I KNOW THAT IN JAPAN DOCTORS WILL START VIT B12 INJECTIONS IF VIT B12 IS 400. IF YOU HAVE MALABSORPION OF VIT B 12 , FOOD IS NO HELP AT ALL. AND THE FINAL THOUGHT : WHY NOONE MENTIONED SCHILLING TEST FOR DIAGNOSIS OF PA.
    SORRY FOR MY MISSPELLINS AND OTHER MISTAKS. I WILL CONTINUE TO GIVE MORE INFORMATION ON MY TESTS. THANK YOU VERY MUCH.ELLA.

  142. Sophia

    Hi everyone,

    Wow I never knew that vitamin B12 deficiency was so serious. I took it so lightly.

    I’m currently 23 years old. In 2008 I was diagnosed with B12 deficiency. I had to take a shot once a month if remember correctly. Then I stopped maybe after like 4-6 shots. Then for years I was not tested for it.

    Last year when I went to India, I decided to get my blood checked. My levels came to be low, it was 92 pg/ml. The doctor there told me this was very low, and immediately gave an injection. This was last year in July. Since then I’ve not had another shot.

    This explains the tiredness and fatigue I’ve been experiencing for years now. The worst thing is that I cannot focus on anything for long, especially my studuies. My concentration level is low. This does not help, I’m a Masters student, and I need all the energy to study. I get mood swings often as well now. My legs and arms ache at times. More recently I have also experienced lower back pain with severe tingling sensations. For the past week or so my left eye has also been twitching like never before. Non stop!

    I have an appointment booked for tomorrow with my doctor. Will take my reports from India. Cannot wait for another blood test and reports to come by.

    I’m really glad to found this page, I underestimated the effects of B12 deficiency.

  143. Rae

    Where do you live? Where is <200 the level that you are deficient?

    Here in Canada it's 150. I had a test 1 year ago, and all they told me was that I was fine. I went to the doctor today to ask for last years numbers, and it was 170!!! No wonder I was getting such horrible nerve shocks, numbness in my body, depression and fatigue before I started taking my B12 suppelement!! I swear, 150 is WAY too low if I'm getting permanent nerve damage for being 'in range'.

  144. B12 Anemia

    Rae,
    I don’t care where you live, if your levels are below 400 you will have symptoms and should be treated for B12 deficiency. I am in the United States and unfortunately most doctors here consider anything under 200 to be deficient and many don’t take B12 deficiency very seriously. I was fortunate enough to keep searching until I found doctors that understand how devistating this condition can be. Both my primary doctor and my neurologist agree that B12 deficiency starts when levels fall below 400. Ideally a normal level is in the 800-1000 range. At a level of 170 I would be demanding shots. There are many different shot schedules your doctor may recommend, I would make sure they gave me a shot a week for at least 6-8 weeks. Then at least once a month after that until they figure out why you are deficient. Good luck with your recovery!

  145. Chris

    I had physical and labs this past week. All labs are finally normal, B12 in the low 400′s…only took 9 months to get it up there from a low of 38.9! Doctor said to continue injections every three to four weeks and will check level in 6 months. I still have a lot of symptoms and know when I need another shot because I can feel the level dropping. Was told over time some symptoms may get better but since mine was so low and seams I had it for years, symptoms may be permanant. At least it is good to know I now have normal shapped red blood cells that are again getting oxygen to my organs. Hope everyone has a good New Year.

  146. Sarah

    Hi everyone! I am so glad I found this website. I’m 33 and have had many of the minor symptoms of low b12 since high school…however this Oct (2011) I started to experience tingling in my hands and feet as well as heart palpatations. I went to the nurse practitioner and she did an EKG as well as sent me for lab work. The lab work was mainly to check my thyroid as well as to check for blood clots (I was a “light” smoker and on birth control). At that time I had asked to be checked for b12 but wasn’t. The results all came back negative with the exception of the d-dimer (blood clot test). I tested positive for high risk of blood clots. At that time I told her I was still experiencing the tingling only it was no longer confinded to my hands and feet. It was now all over (my head, my face, my chest…basically my entire body). Sometime it would last for hours…sometimes it would last for days. She said she thought it was due to stress and anxiety (panic disorder) and asked if I wanted a prescription for Xanax. I don’t really like taking medicine unless it’s really needed…much less taking something that can be highly habit forming. I asked if she’d give me a lab test for b12…which she finally did. (this was now December 2011). Along with that test I was also tested for anemia and also had my ferritin levels checked. The nurse called the next day (this past Friday) to say that my level was 139 (she didn’t seem terribly worried by this) and said she wanted me to come in early this next week (Monday, Tuesday, or Wednesday) and they were going to give me an injection monthly for 3 months. From all the research I have done (extensively)it seems like people with fairly low levels are getting daily injections…or weekly injections…but not monthly injections. My question is…I’d like to get a second option…with more of a specialist. Can anyone recommend what kind of specialist I might want to see?? My tingling is now constant all over my whole body. My enormous fatigue and depression persist even though I’m on medicine (both of those I’ve had since high school). I have also had pretty severe GERD since middle school so I’m assuming that’s the culprit behind me not properly absorbing b12.

    Any help with advice on a specialized medical doctor is VERY greatly appreciated. I can’t take much more of this.

    Thanks everyone!!

  147. B12 Anemia

    Hi Sarah,
    A B12 level of 139 is definitely a cause for alarm. The tingling you are experiencing may be neuropathy and is not to be taken lightly. I would definitely seek another opinion. Unfortunately it can be hard to find a doctor that realizes the severity of B12 deficiency, so don’t be afraid to keep looking until you find the right doctor. I am not a doctor, but I would recommend getting at least a shot a week for 6-8 weeks. If you find a doctor that does more than that, even better. Because you are experiencing tingling that has gotten more severe you may also want to see a neurologist. The sooner you can get your B12 levels up, the better. It will take a long time for your body to start to heal and the longer you wait, the more likely the damage will be permanent.
    Thanks for visiting my blog, I’m glad it was helpful to you!
    Good luck with your treatment.

  148. B12 Anemia

    Chris,
    Congratulations on getting your levels up! While you may have permanent damage, don’t give up on your recovery yet. It took me a full two years of shots every other week to feel as good as I do now. Hopefully you have just started to heal and will continue to feel better every day.
    Happy New Year!!!

  149. Melissa Deas

    Ally,
    I have B12 deficiency which is severe. Your symptoms sound similar to mine. I was spacey, light headed, forgetful, and then sudden weakness that would leave as suddenly. I’m a 60 year old dancer. I dance 3 X’s a week so usually am strong and healthy. Suddenly dance became difficult. Waking up with headaches. Went to dance class 2 1/2 weeks ago. Couldn’t do it. Came home, had to sleep and woke up paralyzed. I could stand, but my legs were like wooden pegs. I slept for 2 days. Very foggy. I ended up in the hospital as my doc was very concerned. MRI’s and nerve conduction test. Neurologist said my reflex responses were hyper and my muscle tone not there. B12 was tested…. bingo. Now I give myself 3ml injections of B12 every day. I’ll be tested in a month to see where my levels are. I have most of my legs back, but I still have a limp. I can’t work yet. Can’t stay with it. I work for an hour and suddenly, I feel like a big weight is sitting on me, my heart pounds, I’m breathless and have no choice but to lay down yet again. I have a good day here and there. I’m hoping it increases. Though iron deficiency probably feels similar, you sound like you have B12 deficiency. I’m a midwife and have some understanding of deficiencies. Your red blood cells are not likely to be forming properly. Once you have enough B12 in you, they will start to heal. I’m looking at this site as I’m wondering what other people’s experiences of how long recovery is. Ten years ago, I got a cardiac work up as they thought this was my heart. My heart was perfect. Shortly after, I was sent to a sleep disorder to see if I was having seizures. They said, nope, no seizures, but something is happening. It was all electrical… burning in my thighs.. severe pain… lightening in my head… chills, sweats.. you name it. The central nervous system can create a lot of symptoms when it’s dysfunctional.

  150. Erin

    Oh my goodness, where do I start? In Sept. 2010, I began seeing a neurologist due to many symptoms including gait problems; cognitive inabilities; bladder control problems; weakness in my legs; and more. I was convinced I had a brain tumor! Well, no brain tumor, but MRI did show lesions on my brain scan, so after many other neuro tests, my neurologist started treating me for MS with Avonex. In June, this neurologist just up and left his practice with no notice to his patients. The next neurologist I saw didnt agree with an MS dx. He noticed back in Sept 2010 that my B12 level was 177. He stopped Avonex and started B12 injections weekly x one month then monthly x 6 months. In the meantime, he repeated my MRI’s; MRA’s and they hadn’t changed. My B12 was tested in Aug 2011 with a level of 198; despite all of the injections. Results from my EMG showed significant axonal sensory poly neuropathy. I have also had 2 colonoscopies, a pill cam scan to look at my small bowel, and a scope of my esophagus and stomach in hopes of finding the etiology of my B12 deficiency. To date, no one has been able to give me the answer to that. My neurologist gave me a rx for Vicodin three times per day. I disagreed. I need to be focused, not high. I was frustrated with that Neuro Office. In December, I went for a second opinion to a new neurologist. Basically, he believes all of my problems were due to a severe B12 deficiency. He explained that the excruciating pain I now have in my legs and mid back are degenerative and may not get better. He did say, granting we can get my B12 up, that the pain shouldn’t get any worse. He has given me 4 injections since December and my level is now 213; still too low for him. I will see him again next week for another double injection. I remain hopeful I will begin to start feeling better soon. It’s so important to question EVERYTHING your doctors order and do your OWN research. If I had known about B12 def. in Sept 2010, I could have started treatment then, instead of trusting my doctor to treat me for MS. Does anyone know if it’s common to get neuropathy when you have a B12 def? I started taking neurontin and it seems to be helping although I am finding myself really crabby. Hope this side effect goes away soon. Thanks for this blog, it helped just to be able to vent (sorry if it was TMI!) Your thoughts and comments are welcomed!

  151. Chris

    The neuropathy can be from B12 def. I have it still in my feet and legs but not in my hands anymore. It took 9 months to bring my level from 38.9 to 400. I did two rounds of weekly shots for a month, then every other week, now every three weeks. Once I get to 2 1/2 weeks from last shot I can feel my levels going down. Pain in feet/legs gets worse, brain goes blank, headaches, stomach aches, loss of appetite, dizzy, loss of balance. I also suffer from essential tremor and the shakes get much worse when my B12 starts to go down. I see an Internist who would like to see my levels higher so still doing shots every 2-3 weeks, will retest labs in 6 months. I noticed about 2 months ago I have pain in my muscles (upper body) most all the time now. Told the doctor about this but no comment. I will have to do research and make sure it is not a problem from the B12 injections or other medication I take. Anyone else have muscle pain?

  152. Ginger

    Chris I also have the severe muscle pain. The pain is located in my shoulder blades. It began with the right shoulder blade and is now in both. At times the pain is so intense it does make me hurl. The research I have done indicates that severe muscle pain is also a symptom of the B12 deficiency. Unfortunately I was diagnosed when I was in the 4th stage of the deficiency.
    My muscle pain in 1999. Other symptoms followed but my diagnosis was caught very late as it appears your was.

  153. leanne

    hya all and a happy new year!! well im now back in cyprus and goin to get my bloods done tomorrow at last who knows maybe ill get some shots sometime soon!when i seen my docotor last week he examend my liver and spleen checking for flamation but thats all clear but hes still going to check for everything so he can tick things off his list like chrones disease which i have no symptoms for at all but he said evan very minor chrones could cause low b12. apparently once my bloods are back – shockinly out here takes 3weeks – i will then be put forward to the hospital for further test with specialist so we will see how this progresses from my bloods just be nice to get back to my normal self no more extreme fatigue my husband doesnt get that i struggle through the day on 6 – 7hours sleep wen i have my two girls to be looking after housework to do etc its so draining and i hate feeling like it myself let alone me moaning about it aloud every so often. not like my girls get up much during the nite my 2yr old sleeps all nite and my 6months old wakes around once to twice a nite really bad nite is 3-4times but thats rare and then i really am struggling to keep my eyes open im more irritable less patience frustrated with myself for feelin like i do. ill also be happy to get rid of the nagging pains, sometimes they are just there other times its really sore burning numbing pain and can b anywhere on my body sometimes my one leg from knee down or my shoulder to elbow etc etc ahhhh i just cant wait to be sorted and have everything back to how it should be! roll on! i defo feel like i could do with a shot though but my doctor wont untill these results are back evanthough i took my lab results back here with me and shown him grrrr!

  154. Chris

    I had to wait on this month’s shot until my lab results came in which means I got the shot at a 4 week interval instead of 3 weeks. I was supposed to get it last night but was delayed until tonight because of a snow storm. My friends daughter, who is a nurse, gives it to me. She wants to teach me to inject myself, says it will be easy. I am afraid because I also have essential tremor and my head, body, and hands shake. I will try and be brave and consider this. It would come in handy when I visit my parents or travel. Like usual, when I got to the 3 week interval time I started to notice my memory getting worse, headaches, sleeping more at night and falling asleep during the day, stomach ache, shooting pain in feet and hands. I have these symptoms all the time still but they get much worse when my levels start to drop. I don’t feel well (flu like) for a few days after shot but am looking forward to a few better weeks after that. I went to the library today for a couple of good books and plan to rest thru the weekend out of the cold and snow.

  155. jo atherton

    Hi I don’t know were to start in august 2011 I kept having bladder problems with no infection but stuff in my urine from then I started getting floaters in my eyes then numbness in my arms amd legs leg pain tremors in my body kept going the doctors who said youv got too many symptoms you must be stressed anyways after having enough I moved doctors who told me I had low b12 and need injections I have my first one tomorrow I just hope it makes me feel better iv got to see a gastro doctor to see why I’m not absorbing it iv been havin bowel problems in worried sick its bowel cancer I’m 32 I’m so stressed about it its on my mind all the time I had an inflamation test done and mines 35 so somethings wrong somewere.

  156. Chris

    With low B12 it is not uncommon to have stomach aches and intestional problems with inflamation. All my labs were very abnormal when I was first diagnosed but now after 9 months of treatment things are improving. Keep in mind that this anemia causes red blood cells to be abnormally shaped and than oxegen is not carried to our body (organs) properly. The symptoms you have can be from a low B12, so don’t panic. Chances are you do NOT have cancer and that the shots will start to help you feel better. Good luck and let us know how you make out.

  157. Katy

    I am sitting here, utterly exhausted, as I write this… I had been feeling really bad for a while, don’t know exactly how long, just know it’s been months and it got progressively worse. I went to my doctor, told him how I was feeling and he did blood tests. My B12 is at 160. I have a 2 1/2 year old and I am tired anway, but this is different. It is so hard to explain the symptoms unless you have felt them yourself! I have the extreme fatigue, dumbness, tingles, ringing in ears, headaches, trouble sleeping well,vision issues, dizziness, etc…I started my twice a month injections 2 weeks ago and I am supposed to go today for my second. I forget how it feels to feel “normal”. Oh, did I mention the confusion and forgetfulness? I hate feeling so much less than myself. I hope I start feeling good again SOON!

  158. Shannon

    I just learned that my B12 level is 200. I’m currently taking 1200mcg of B12 sublingual and 200mg of Folic Acid (tablet). My dr plans to recheck my levels in 3 months, however, I was wondering if anyone could tell me the possible cause of this deficiency. I do not have any of the diseases that are associated with B12 deficiency (that I know of that is) so I was curious if it could be stress related. I started having symptoms of chronic fatigue, weakness and body tremors approx 3 years ago. I went from being overactive to underactive pretty much overnight. It’s really frustrating being so debilitated. If anyone could give input it would be appreciated. Thanks!

  159. Patti

    What a relief to read other peoples stories and realize I am not crazy!!!! I have been diagnosed 3 times with a low b12 over the last 10 years. The first time I pretty much blew it off, was younger and thought it was t a big deal. Second time I was pregnant and told by my primary the baby was taking all the b12 I was taking in and leaving me without, so I got monthly injections until my daughter was born. Recently I started feeling the same shoguns I had when I was pregnant…headache, heart palpitations, breathless, mouth ulcers and sore tongue. I called my Dr and asked to come in and have bloods done. Why are Dr’s so reluctant to preform tests unless it’s their idea?? Well, my level was 80!!!! She said she has only had one other patient (elderly) with a level as low as mine. Great. So I did bi-weekly injections for 2 months and 3 monthly injections for a total of 7 shots in 5 months. Had my bloods done again…182 and still a low folate. Ha, I’m told by the nurse this lab considers normal range from 180-914 so I’m in the low normal range. They would like to continue monthly injections. I’m ok with that, but I’d like to know what is causing it to be low just the same. My mother has Crohns and gets a monthly b12. I don’t have any other symptoms related to Crohns…I don’t think. My Dr doesn’t seem to be concerned. I asked to be referred to a GI specialist. I’m still waiting to hear back. I really feel I need to see another/different Dr. Am I choosing the right path? Should I be seeing a hematologist? Sooooo frustrating!!!!!

  160. Cassandra

    I had my levels checked they r at 101 I’ve been on shots eveyday for two weeks my body hurts bad somedays I can’t even move my Vit D level is 15 can’t they admit me and stop the pain and get me levels up to where I can at least function

  161. Chris

    There are other blood tests they did for me that showed I have no Intrinsic Factor…my Grandma had this really bad. She used to get the shots and blood transfusions also. Found out my cousin also has it. Doctor feels mine was inherited. The point is, mine will never go away and I will need to take the B12 injections for the rest of my life because I am not able to absorb the B12 in my stomach/intestines. My level was 39, doctor was afraid I would suffer organ failure. After 9 months of treatment my count is up to 400 but she would like it even higher. I still have all the symptoms, better than at first but still really bad. Have been told my symptoms are probably going to be permanent because they think I had it for a long time, especially with the severly low count. My point is, YES, find a doctor who knows what this is and how critical it is to treat it properly. I can’t go back and change the fact that I complained of symptoms for years only to be told they could not figure it out. No one bothered to do a simple B12 test until this past year and only because I went in telling her I really thought I was dying…Little did I know I was. Stay on top of your care and if you don’t get the help you feel is correct, go to another doctor!

  162. Elena

    Read this article and comments with much interest. Excellent information from all of you. I agree with getting not just a B12, but thyroid and Vit D. I’ve just gone through 2 1/2 years of pure hell and felt I would surely die from LPR. My esphogeal spinchters just went “limp” on me and didn’t work anymore. My Drs gave up on me last summer. They said there was not much more they could do for me. No one every bothered to give me any of the tests you have all mentioned. I’ve always been tired my whole life, had anemia always, had bad memory…on my own I found out I was deficient in Vit D. I’ve been slowly recovering. I am going to try to get my B12 levels up to 800+ after reading your comments. When I think too much about how badly I’ve been treated by my Drs its makes me want to cry. They even sent me to mental health in Oct 2010 as I couldn’t take the throat pain anymore. I looked at all the men laying in the ER room hooked up to monitors laughing with their families and I laid on a gurney in writhing throat pain and the Dr sent me to mental health. They later said they were sorry that they believed me. My throat was seared from the spinchters not closing off the stomach and acid hitting my throat and burning through the nerves that go up into the head. It was a horrible thing to go through. To know your real sick and Drs think its mental. I am totally digusted with my health care and I’m stuck as I’m in a HMO. If they pharmacuetals don’t work then they blame it on mental illness. I think its worse for women.One Dr told me to “…you have an allergy, keep taking the Flonase, if the pain is not gone in two months then there is nothing more we can do for you.” That is an exact quote. I will never forget it. If you all have time check out Dr. Gomainak’s opinions. She has indexes at the top of her page and its so interesting. She mentions B12 and Vit D and sleep.

  163. Amanda

    Hello! I am a 29 year old female. I went to my gyno to have some tests ran because my mom recently got diagnosed with hypothyroidism. I had been feeling extremely sluggish and started gaining weight. My thyroid came back fine but my B12 was 272. My gyno started giving me B12 shots once a month, then every two weeks and over the past 4 months its only went up to 344.

    A week or so ago, Dr Oz had a special on B12 and had a neurologist on with him. They acted like if your B12 was low you need to seek a neurologist immediately. So, I called my gyno and they sat me up with one. The one thing I am questioning is before they would take me as a patient they said I have to be having headaches?? My gyno told them I have been, but I havent? I dont understand. Will I just be wasting my time? I do feel like the B12 shots help me for maybe 3 or 4 days then I feel bad again. I am unsure of any of this. Any helpful information would be GREAT! And where exactly should my level be for my age? I was told that my B12 level was that of an elderly and that I should be pushing 1100-1200. What is correct? Thanks!

  164. B12 Anemia

    Amanda,
    You need to have patients when it comes to recovering from B12 deficiency. It takes months and even years for you body to heal as much as it can. Some people have full recoveries, some partial and unfortunately some don’t recover much. It is great that you’re already getting the shots, and every two weeks is super (that’s the schedule I am on ). If you can get your levels between 1000 – 1200 that is fabulous, but it can be hard to do. You want to be at least 800 if you can. As for the neurologist, you should definitely see one, but be aware that not every neurologist is as aware of the severity of B12 deficiency as they should be. If they brush you off, or don’t think that 272 is deficient (many doctors won’t diagnose B12 deficiency unless you are under 200, others realize you are deficient under 400) then be sure to get a second opinion.
    Good luck with your recovery!

  165. sarah

    I have been having tests in rhematology in the hospital for variou ailments including paresthesia – 9 years plus, ongoing which causes intense itching in arms which, when scrathched causes horremdous burning pain like someone has set fire to me but continues to itch (on reserch I have found something called Brachioradial pruritis – but doctors fail to ee this as a recognised illnes), I also have posible cervical facet disease and joint pain in hips and recurrent nodular epicleritis. They don’t think I have any underlying stematic autoimmune disese and dsay my B12 is ok, noderline 165 ??? Can anyone tell me what this level means?

  166. sarah

    That should have said ‘borderline 165′ – sorry – keyboard playing up!!!

  167. Chris

    Only 2 weeks out from last shot and am having so many symptoms. Swept kitchen floor, then cleaned it, then had a shower, now feel like I could lay on floor…could hardly stand in shower! Even with my numbers being in the low 400′s I suffer so much. Doctor said be patient, it may take years to resolve, may be permanent. This is hard…I am normally the person who does it all. To top it off, I am sleeping 10 hours a night and usually have to give in to a nap every day. Guess today I am feeling sorry for myself. When I feel better in a few hours will get out for a little walk, library etc. to lift my mood.

  168. B12 Anemia

    Chris,
    I know it is hard to have patience when you are trying to recover from B12 deficiency, but unfortunately you have no choice. Your doctor is correct it can (and usually does) take years to recover as much as you will from this deficiency. You have to remember that it probably took many, many years for your body to become so deficient. I can tell you from personal experience that it is a long road. When I started getting shots, I felt like I was taking one step forward and two steps back for the first 6 months. Then little by little I would start to have one good day, then another until I was having as many good days as bad. Then more good days than bad. Now I only have a few bad days every once in a while. While no one can determine how much you will be able to recover, you need to give your body lots of time to heal.
    It’s ok to have days when you feel sorry for yourself, not many people truly understand how horrible B12 deficiency is.
    Hope you were able to have a nice walk and feel a little better:)

  169. Gigi

    wow I am so happy to have found this site, at least now I know I’m not crazy. For years I have gone to the Dr.’s with complaints of fatigue, weakness, headaches being cold, my weight going up and down like a yo-yo, lower back-ache, bone pain in legs, tongue feeling burnt and so on only to have a CBC and TSH run and was told nothing was wrong with me. I was told over the years”you have 2 babies” then you have “teenagers” and last “you are just getting older” you got to live with it. 2 1/2 years ago I was working “alot” but enjoyed my job never thought of it as being physically draining however my weight started dropping and when I would get home I just layed on the couch and starred in space. It got to the point I could not think to complete a sentence, I went to the Dr. only to be told this time it was my “gallbladder” I spent 5 days in the hospital 4 of them just trying to stabilize my vitals for surgery, after surgery I went back to the Dr(check up) still complained of bad fatigue he gave me a B-12 shot had me come back in a week later ask me how i felt told him I was so tried that I had to have a friend drive me to his appt. he gave me another B-12 shot again set up another appt for a week later I then ask how long before the shot was to kick in? He looked at me and said well if you dont feel any better then there is no use in giving them to you(now remember he had done NO blood work). I gave up thinking I was ever gonna feel any better(that I was truely dying) and worked on just trying to get my weight up and doing only what I could. Last summer things turned bad again felt as if I was freezing to death, I changed Dr.s printed up a female check list I found on the computer and took it in with me~instead of looking at me like I was crazy he ordered lots and lots of labs 1 being B-12 when they came in he said no wonder I felt like I did it was little over 100. He gave me a shot and told me to take OTC b-12, within 2 months I was no better so he wrote a script for B-12 injections at home. I did weekly injections for 6 weeks and now every 2 weeks, I am ok for the most part the first 4-5 days after the shot then exhausted again till its time for the next shot, I still continue OTC 5000mcg daily in between shots although I feel it does NOT help, after this coming Sunday I will be on monthly shots not sure how that is gonna work given that it only last 4-5 days(thats a long time in between when you dont feel good)any suggestions?

  170. Candice

    I am so happy to have found this forum! In July I had my beautiful baby girl, she has been the best thing to ever happen to me. I have been exclusively breastfeeding her and recently ( since the beginning of the year ) started to have strange symptoms that really started to worry me. I’m a nurse by trade, and pride myself on being very intuned with my body. I was having numbness and tingling in my fingers/hands/legs/ arms. I was an absolute mess with tunnel vision, depression and anxiety ( which i had suffered for years and years prior to this ). I went to my GP and asked him to test me for b12 deficiency, he did so, but also expressed his concerns for the possibility that I could have MS and said if the numbers came back normal that he would consider a neuro consult. So I had my blood work done, and didn’t hear back from them. After the symptoms didn’t go away I called his office and was informed that my blood was was “fine”. I had been losing my mind quite literally for a while up to this point, and then immediately became concerned that I had MS and was worrying about my future with this new baby. With all the wierdness I was feeling, this was just giving me tunnel vision. last week I had gone out to the mall, and while there my face started to get tingly and go numb! And i had a major panic attack and had to leave, and literally breath into a paper bag in the car. My poor husband didn’t know what to do with me. The next day I called my MD’s office and demanded that he call me at home. He gave me my value over the phone at 327. He continued to tell me that this was not considered low, but I could take some b12 if I wannted to. After 5 days of taking 1000ug Sublingually I cannot tell you the difference I feel! I went to see him today and reported this to him, and although he is happy that I am feeling better, he still ordered me to get an MRI to rule out MS. I”m considering waiting to have this done at a later date, maybe to see if my symptons start to improve…thanks for this forum. I know that my number is a higher then a lot of yours on here, but let me tell you, that my symptoms were quite severe!

  171. Loretta smith

    I have b12 defiecency for two years and been taking injections for it every month. Went to the doctor today for results and was told my count was exactly the same as it was two years ago. HE TOOK ME OF INJECTIONS THAT i was on for those two years and put me on pills.I am sick and tired of being miserable AND i DON;T KNOW WHAT TO DO..i CAN;T EVEN GO FOR A WAlk because I’am so dizzy and sore.Can any one give me any suggestions Thank You

  172. Chris

    I started out feeling good this morning, went to pool for so excercise, made veg. soup, ran a few errands…then it hit. I started to get spots in my left eye, more than floaters…then noticed my vision was getting worse. I drove to eye doctor and after testing found the retina had come loose…was told this should resolve itself, not a tear or detachment…also told I have 2 bleeders. I have low blood presure so that is not a concern. Doctor can’t say for sure it is from B12 problems, side effect from medications, or just one of thoses things. Was told it should all resolve itself over the next few months…recheck in 3 months. Has anyone had problems like this from B12??

  173. Ginger

    I just got my B12 injection a week ago and could not tell the difference this time. Sunday I came home after church and took a long nap. I’m learning when my body is tried to stop, drop and rest.
    Still making errors which is so unlike me. My brain doesn’t seem to be nearly as sharp as it used to be. I find myself trying to be careful to form my words before I speak and recheck my work to make sure it is efficient. These are steps I am not used to taking.
    When I’ve had 7 months of B12 injections we will do another MRI to see if any of the destruction in my brain has been reversed. If not then it appears I’ll be at a disadvantage moving forward as well.

  174. Chris

    Hi Ginger, I too still have memory problems and also have problems forming my words and sentences. It became a big problem at work but have stopped working. I sleep 10-11 hours a night and still am in desperate need of a nap in the afternoon, more so on days I go to my water excercise classes. Before I started treatment I suffered pain and sores on my tongue and gums, which went away. The pain in my tongue came back the last week and a half and I just got my shot tonight at a little over a 3 week interval. Sometimes I am so exhausted that my head feels like it weighs a ton and I feel like I could lay on the floor. This B12 problem sure has made me change my lifestyle but it could be worse…

  175. Ginger

    It could be worse Chris. I hope the water exercise classes help. I may look into that also. No pain on my tongue or gums. The eye doctor checked my eyes Friday and found no issues due to the B12 deficiency.
    The need for sleep has been a big change for me as well.
    I hope the rest of your week proves to be restful and enjoyable.

  176. Chris

    I have been doing the arthritic excercise classes for about 7 months and I really enjoy them…indoor pool kept at 90-93 degrees, plus it gets me out with other people. It lasts for 45 min. and then I come home, have lunch and fall asleep for an hour. I usually go 3x a week and want to start walking at the mall on the days in between 2-3x a week. Since I had my shot last night I will get to feeling more energized over the next couple of weeks. Eye doctor says he does not feel my eye issue is from B12, just bad luck, same as a floater only 10x worse. I still have it but either it is getting a little better or I am getting used to it…vision still bad out of left eye though. You have a good week too, Ginger.

  177. Bethany

    I was just told by my doctor last month that I am D and B12 deficient and anemic. I didn’t have my follow up until today and was surprised after reading all of this information. I am just at 800 but my IB says that that is low and wants to get me back up to 1200 as that is the number that will help me feel better. I have had insomnia, fatigue, numbness in my face, and a few other issues. The supplements are helping…I cannot even imagine what a lower number makes you feel like. Anyway, almost a year ago my mom had what acted like a stoke but wasn’t. After reading all of this information I am convinced it was a B12 issue. She cut out ALL processed foods, began taking a B complex, curcumin (an anti-cancer, anti inflammatory which from what I have learned, a high C-RP isn’t uncommon with these deficiencies), and a multivitamin. Anyway, after what I’ve read, I am so thankful that my doctor understands the importance of B12. I will be doing a monthly shot, a daily sublingual, my multivitamin, a D3 5000, curcumin, and Melatonin for the insomnia. Sleeping has helped immensely! Thanks for all of this info as it has helped both my mom and me.

  178. Dallas

    I’ve just recently been diagnosed with Pernicious Anaemia. I realised a few weeks ago that how I had been feeling for the past few years was not simply anxiety or stress as told by a couple of GP’s. I’m not a doctor person and as I have two kids and two jobs I thought exhaustion was just par for the course. Since 2009 I have had shortness of breath, fatigue, confusion (fogginess) and have been regularly dropping and breaking crockery :) I had become so accustomed to my ‘ditziness’ that I’d almost forgotten what it was like to be normal. Back pain has been put down to having had babies. Blurry vision written off as lack of sleep. The thing that alerted me was the intense burning sensations in my hands and tongue. Mostly my hands, felt like steam burns and I had been wrapping them in ice packs for a week before I went to the doctor. My GP has had me in for B12 injections every two days. Then plan is after 6 injections to take more blood then settle for injections every 10 days. She said that as I’m young and the B12 can’t hurt me then I need all the energy I can get and there’s no reason not to tackle this agressively. Knowing how crappy I have been feeling, I can’t imagine how helpless you guys are feeling where you can’t get treatment or have such low level treatment. This is not fair! I’m in Australia, maybe there is a different treatment protocol here…

  179. April

    Hi,

    For months I have been experiencing extreme fatigue, depression, and brain fog. The fog had been getting a lot worse over the past few weeks. The other weird thing (not b12 apparently) was an extreme craving for carrots

    So I went to my Dr and asked her to run a full thyroid (family history) and full Vitamin panel, hoping to get to the bottom of my fatigue. I had the standard blood draw, TSH, T4, Iron, Vitamin D, Vitamin B12, and (at my request due to the carrot thing) my vitamin A.

    I went back last week and it turns out that my b12 was at 286. My Dr said she was always suspicious of any levels below 300 and even more so in my case because she knew that I had been taking a b-50 complex for over a year.

    My iron and Vitamin D levels were also low. So I was started on B12 injections in the office, told to continue my b-50, add a children’s multivitamin with iron, and 2000 IU of Vitamin D each day. (In case you are wondering, I am trying the children’s because I have had trouble in the past with taking iron, it makes me want to vomit).

    So the day after my first injection, I did not expect to feel any different. All of a sudden, I found myself feeling happy, chipper. I had a burst of energy. And even became really touchy feely with my husband, something I have not felt like in years.

    Since then the brain fog has gone away, but my energy level has begun to drop back down. I am actually looking forward to my next injection on Thursday.

    I was prescribed a weekly injection for the next four weeks, then once a month afterwards. In the mean time, the Dr is checking a few other blood tests.

  180. Lynnette

    i was diagnosed about 9 months ago with low B-12 (132) after comlaining of shock like pains in one side of my face. My doctor thought it was a sinus thing and put me on three antibiotics in a row before I finally went in a saw a different doctor at the clinic and refused to take anymore knowing this was not the problem. I have been on injections once a week since then. He also has me taking 4000IU of vitamin D day. I have also had major dizziness issues, vibrations in my head, exhaustion, irritablilty, and pain behind one eye. Im a bit concerned that after nine months some symptoms have gotten a bit better, but none have completely left. Im wondering if we should be talking about prehaps MS. I know they mimic each others symtoms often so it can be hard to tell.

  181. Ginger

    My doctor thought I had MS before they discovered I had B 12 deficiency. I had a lumbar puncture (spinal tap) to decide if it was in fact MS.
    B12 deficiency does in fact mimic MS. The lumbar puncture will give you the results that you need.
    A neurologist finally got me the diagnosis I needed. I know your fears because they were mine. While B12 deficiency isn’t wellness; it is far better than an MS diagnosis.

  182. ShaneLynn

    Hi All,

    I had been having very bad neurological symptoms for about 2 months, tingling, horrible burning and numbness sensations in my feet, legs, hands and arms. The pain is horrible and wakes me at night most of the time. It then progressed to my chest and head. I saw a neurologist right away and got many tests including a nerve conduction test that came back normal. My B12 lever was 290, which the doctor said was within the normal and to just take some supplements. I have no idea how much supplement to take. After reading here, 290 does not seem like an acceptable level.

  183. Chris

    Hi ShaneLynn, My level the beginning of January was up to 400 and they would still like it to be much higher. I take injections every three weeks…at 2 1/2 weeks I start to notice my level dropping…headaches, numbness, pain, severe cold, stomach aches, sleeping a lot more (10-11 hours a night), naps during day, tongue is painfull…I just have to listen to my body to know when I am due another injection! When do they plan another B12 level? If you have pernecious anemia taking supplements will not help because your body will not be able to absorb the B12, which is why I have to receive injections. Make sure you stay on top of this and if need be, get another opinion. My Internist is more proactive than my Neurologist and I am seeing her for treatment and follow-up every 6 months. Good luck.

  184. Leah

    Hello, for the last 3 weeks i have been feeling extremely tired..no energy, all i want to do is lay down. My Dr. tested my B12 and it was 260. He didnt seem concerned at all and refused to give me b12 shots and said i just need to take 1000 mcd/day. Is 260 considered in the normal range?

  185. B12 Anemia

    Leah,
    You should most definitely be concerned. Anything under 400 should be considered deficient. It took me quite a few doctors before I found one who took my condition seriously and gave me the proper medical treatment. If he refuses to give you shots, find another doctor immediately.
    Good Luck!

  186. ShaneLynn

    I talked the my neurologist again and she said I didn’t need shots for 290 and oral supplements will due. It has only been a week, but I still have the horrible burning, tingling and numbness in legs and arms.

    Does anyone see a big difference between shots and oral supplements?

    Thanks

  187. Gigi

    ShaneLynn, I can feel the difference between the OTC and shots. When the Dr. did my lab work and it came back just a lil over 100 he said I can give you a shot if you want BUT just take over the counter supplements. I took 1 shot and bought 5000mcg had been taking them for 2 months felt no difference when I went back for my check up I explained to him it was like I was taking NOTHING at all. now I give the shots to myself at home and in between i still take OTC daily. I was ok as long as i had 1 shot weekly, once that stopped I went back down hill, I cant get into see him for another 3 weeks SO i started the shots again weekly till I see him, it seems to be the only way I can fuction through the days.

  188. B12 Anemia

    ShaneLynn,
    I have to agree with Gigi! The shots are the best, and sometimes only, way to increase your B12. If your neurologist suggested regular vitamins and not a sublingual, I am very concerned. Regular vitamins may keep you alive, but they won’t help you heal or get your numbers up. Your body simply won’t absorb enoough of it, the only chance you may have is with sublinguals. It is important that your body heals before the damage becomes permanent. Any number below 400 and you should insist on shots. If your doctor says no, find a new doctor.

    Gigi,
    Same advice for you, your numbers are even more critical. You should be getting a shot a week for a month or two, then work out a schedule with your doctor. I do the shots at home as well, and I get them every other week. If I go more than that I can feel the difference.

    Good Luck to both of you!!!

  189. ShaneLynn

    Thanks everyone for the advice.

  190. Chris

    I have been getting the shots from a couple of friends that are RN’s, every three weeks, sometimes a little longer and have noticed after 2 1/2 weeks my levels are dropping and by 3 weeks I don’t feel well at all. I will need to be sure to get the shot sooner.

  191. Sarah Booth

    Hello, everyone!

    What a fantastic site! I no longer feel so alone with this condition.

    I am in the UK and, over the last 14 months, had a full length of leg DVT plus multiple pulmonary embolisms, so was in Cardiac Care for 12 days. They also discovered I was a type 2 Diabetic (my teenager is a type 1) and in the year following, also found high cholesterol, under active thyroid and, before Christmas, Pernicious Anemia. The Nurse at my Dr’s surgery regularly sees me for all the other conditions and regular blood tests, so, when the B12 one came back ‘a bit low’ I had a second test to recheck – it came back at 34, and the Nurse said the normal minimum level for an adult started at 180. Perhaps we have a different measuring system here? Anyhow, 34 is low on any scale, so had 6 injections over 2 weeks, and now one every 3 months.

    Being new at all this ill health, I had noticed symptoms creeping up over the past few years, all somewhat random – very dry skin, cracked heels, gradual thinning of hair and eyebrows, especially the last end part, almost scaly skin on my legs, cramps, twitches, exhausted, poor sleep quality, ringing in my ears, dizzy, soggy brain, poor memory etc. By Christmas, I felt almost a ghost, just not really there! Horrible headaches, too. I also have sciatica for the last (almost) 3 yrs, with hip and groin pain, wobbly etc on top of the back and leg pain. So, still trying to figure out which sympton goes with which condition – rather like doing a huge jigsaw without the box lid picture!

    Following the 6 jabs session, the headaches have mainly gone, but still get a racing heart, thudding heart, tinnitus (like high pitched whining untuned tv noise!) . I don’t feel quite as fading away as I did, but I can’t say I feel full of the joys of Spring, either. I live in hope of this improving. The routine here is a B12 jab every 3 months, but I suspect every 2 months might be better. I just get exhausted if we go out for a couple of hours, and struggle to do a daily 20 min walk, even with a stick, as I am in such pain, wobbly etc, and get very clumsy. Still have a foggy brain, too – can’t even remember what food is in the fridge!!

    Anyone else in the Uk have experience if getting a jab more than once every 3 months? I also notice some stomach ache post jab.

    Many thanks for any help or advice!

  192. Gigi

    Chris may I ask how long you have been getting the shots? I have only started the shots in mid Nov.(total of 11 shots so far) but when I tried to go bi-weekly in mid Jan. I was back down with pain in my back and NO energy what so ever and headaches everyday sore tongue hair falling out again. I surely felt that after 8-9 weekly shots that my levels would be up enough to go bi-weekly then monthly, I also take 5000mcg of sublingual daily but for some reason it just doesnt seem to absorb or stay within my body, the Dr. looks at me like i’m crazy.

  193. Chris

    Hi Gigi, I started weekly shots April 2011 for a month, then every 2 weeks for a month, then 3 then 4. My count started at 43.9 and after 3 months was 249. I was then put on every week again for a month, then 2, 3, 4 again. At 9 months of treatment my count was 403.6 and my doctor still feels this is low. I am taking the shots every 3 weeks but at the 2 week interval I start to get symptoms and feel sick. Now they told me to do what makes me feel better. My levels will be checked again in July. My doctor said using B12 vitamins or liquid under the tongue is a waste of money because my body won’t absorb it. I get a shot tonight and am really looking forward to it. It can take a long time to get levels up and then to keep them there. My Grandma had pernecious anemia and she got shots every month and at times received blood tranfusions. I accept that this is lifelong treatment of shots and hope some day I may be able to go longer intervals between them but for now it looks like it will be more like every 2 1/2 weeks. My Internist is very understanding of this condition but the nerologist I saw came accross like she did not understand why I still felt bad and kind of “get over it”. Needless to say I don’t see her anymore. If you are not comfortable with your doctor, maybe find another one. We feel bad enough without feeling pressure from a doctor who does not understand!

  194. Gigi

    Thanks Chris, My Dr. doesnt want to recheck my levels for a year how-ever I think they should be checked in 6 months, so I guess I will have to order this my-self. As a child(up till i was about 11) I was always on prescription iron due to being anemic then age 23 after recovering from a upper resp. infection(I just couldnt seem to bounce back)I was so tried all the time, my Dr. then ran blood test only to call me back in to say my iron level came back “danger” overload. I was taking nothing at the time! more test,and all I was told was to NEVER take iron as my body was “storing it” I told my current Dr. this and he just said he didnt know and most likey had nothing to my b-12 being low now! My daughter also has low b-12. It is sad that Dr.s treat people with very little concern I live in a small town and don’t have a wide range of Dr.s to choose from without travling 45-50 miles from home, I’m just not able at this time. I “thank you” for sharing with me.

  195. georgeangela

    I am 25 years old. For 8 years now I’ve been taking anti depressants. I’ve gained weight, lost interest in most things that used to make me happy. I started losing my hair, being extremely tired for most of the day, having no ambition to do anything ever, sad, thinking poorly, very confused and finding it hard to think for myself. Gaining weight, joint pains, blurry vision and headaches. So depressed, suicidal thoughts, and losing friends because of being so withdrawn. Enough was enough. I began researching my symptoms, because after being on anti depressants for so long and only regressing, I found it hard to believe I was actually depressed. I went to (a new) doctor with my research and my findings after some blood work were: #1. I suffer from hypothyroidism, and #2 my b12 levels were at 120. I began my thyroid medication and started weekly b12 shots (4 weeks, once a week) and now 1000mcg b12 pills 1x daily. I am extremely hopeful after several draining hours of research that this is my problem, and has been all along. I am now left feeling so sad and disappointed that my (old) doctor was so quick to throw me on anti depressants, and when they “weren’t working” would just put me on a different kind. I was never tested for anything. They just kept upping my dosages until I became a zombie. It saddens me to know that a lot of this could have been prevented, and I am scared to think I could even have permanent damage from being deficient for so long. Thank god for my new doctor, she was so willing to find an answer.

  196. ShaneLynn

    Its very frustrating that my neurologist just keeps saying 290 is a little low, but normal. So then I start to worry that maybe a level of 290 can’t cause the burning, tingling and pain I feel in my arms and legs. I have also had bad migraine headaches almost daily for years, I was taking topamax 150 mg for a long time. But since i started taking the b12 supplements, I have noticed that i have not had one migraine. My aunt has to get B12 shots as her levels fall below 100 at times. But my doctor is making me feel like 290 is absolutely fine.

  197. Chris

    At times, I believe, doctors treat out of textbooks and not the individual. If you have low B12 because of age (being older) vitamins may help. Pernecious (meaning DEADLY)Anemia is very serious. No matter how many supplements you take, you will still be low. This condition means you are missing Intrinsic Factor (an enzime)in your abdomen. This binds with B12 to allow your body to absorb the B12 when it digests. This is why I have no choice but to take the shots for the rest of my life. Small price to pay considering this condition would have killed me not that many years ago. With this condition, you do not form normal red blood cells so oxegen is not being delivered to your organs. This is why you have the burning, numbness, tingling, headaches, stomache aches, memory, concentration, breathing problems etc. This is a dangerous condition and needs to be treated properly. If your primary care doctor is not able to understand how to treat you a neurologist or hemotologist (blood disorder specialist)can help. Also, you can learn to give the shots to yourself. I get a perscription for the medication, paid $4 for a 6 month supply. Shop around, some pharmacy’s have it as a generic low cost formula. I bought a box of 100 syringes for $20. My doctors office wanted to charge me $70+ per shot and my insurance does not cover vitamins even if it is life saving. Because I have Essential Tremor my head, body and hands shake a lot so giving the shot to myself is next to impossible. I have two friends that are RN’s and they give it to me but a lot of Pharmacists can also give injections. Good luck to everyone!!

  198. Melissa

    WOW! First off let me say that I am so happy to find this site! I have been dizzy for over a year started slow and built up to be being dizzy even when lying down. I was diagnosed with Vertigo and told to just live with it. A year ago I was told that my cholesterol was high (275) and my calcium was low. I started on meds for my cholesterol and got that down to a normal level. My dizziness kept on and my Dr sent me to see a neurologist he did a MRI of my brain and that came back clear but my Vitamin D was at 9 and my B12 was at 240. Also my calcium is still low even after taking supplements for this. I feel tired all the time, I have major body aches and very sore joints, diarrhea (this has been ongoing since my teens) depression with anxiety, never ending muscle twitches in my legs and arms usually when resting, and the newest symptom is joints cracking and popping loudly and almost every time I move. I feel like a shell of the person I use to be. I am too young to feel like this, BTW I am 33. Also my labs came back weird, my RDW is flagged high at 15.3 and my Ambumin Assay is low at 3.4 and my ALT/SGPT is low at 12. This worries me most of all. I also had a failed pregnancy, 6 months ago. I think my body was to unhealthy to carry it. I have 2 healthy children so I know I shouldn’t have problems there. I am wondering if anyone has had any weird blood work like me. I don’t understand why my liver enzymes are low and my RDW is high, along with all the low vitamins. Any ideas would be very helpful! I cant even get out of bed some days to take care of my kids and I just want to feel normal again!

  199. ShaneLynn

    Hi everyone again. I have been taking 5000mcg daily sublingual and was starting to feel a tad bit better (B12 290). The tingling and burning in my arms and legs had decreased a bit. Then Sunday I tried doing some workout CD – and the next day I was really sorry. I was more than your normal sore from working out and the burning and tingling came back with a vengeance in my legs. Is this normal? I have only been taking the supplements for about 3 weeks. Should I not be trying to work out?

  200. Chris

    Hi ShaneLynn, When I was first diagnosed my level was only 43.9 and was told by the doctor to stay home, in bed, rest, do nothing for 3 months! Even now with my level a little over 400 and being treated for nearly a year I still have burning & pain in feet, legs and hands and arms. I also still suffer many other side effects. I work out with water excercise 3x a week and when I come home after it I eat lunch, sit in a chair and fall asleep. The exhaustion after working out or even shopping wears me out and I do notice the numbness, burning and pain is worse. I think we all suffer a little different but what you are saying sounds normal. Maybe work out at a lower pace until your levels come up more. Listen to your body. Good luck!

  201. ShaneLynn

    Ok, I thought I was going downhill. I think I still have in my mind that my 290 level really isn’t that bad so these symptoms can’t possibly from that. From all of your posts I have decided to try another doctor. My aunt has chrons and needs b12 shots and she said her doctor would not accept her at 290. I guess I was expecting since I wasn’t so low a couple of weeks of supplements should do the trick and that is the impression my neurologist gave me. So when that didn’t happen I got discouraged. So I guess this is going to be a process. But I’m thankful for this forum all your stories help.

  202. Laurie

    My husband has had extreme fatigue, weight loss, and feeling highly emotional for about 8 months. He had gastric surgery 2 years ago, so the weight loss has been excessive. January he had blood tests and CT scans, all normal, and was diagnosed with “depression”. The antidepressant gave him terrible dry mouth and metallic taste so he basically quit eating. He tapered off the antidepressant but the bad taste remains. Then he had severe back pain, so was put on nonsteroidals, pain pills, and a PPI because of his small stomach. Then went to the ER with SVT (pulse of 178, BP 70/50, very weak). Then had leg pain so severe he couldn’t walk — checked for blood clots, found none, put back on nonsteroidals, pain pills, PPI. This is all in 6 weeks. Then this week his doctor said it’s probably B12 deficiency — but did not test him. Gave him a shot and said to get supplements.

    Now I read that the the PPI can lower B12, a B12 deficiency can cause heart problems, and B12 deficiency is common in gastric surgery patients. So it all fits logically.

    My questions: Is the metallic taste related…Is the emotionalism (crying) related…since he just had a shot and is on supplements, would a test be accurate at this point…how long should it take to start feeling any better? THANKS!

  203. ShaneLynn

    Hi

    Has anyone noticed any relation between B12 deficiency symptoms and stress levels? I have been under intense pressure at work lately and this week the burning and pain is more intense. Every time I think I am getting better I got right back down hill.

  204. Chris

    Hi ShaneLynn, I agree, when I was working it was a vicious cycle. My B12 deficiency effected my concentration, memory which caused me more stress. Looking back I had problems for at least a few years but the doctors kept saying nothing was wrong. The problems from B12 erroded my self confidence besides just feeling really sick. The more pressure and stress at work, the worse I felt and the more I suffered. I finally was let go in Sept 2010, best day of my life, really. Even though my levels have come up to about 400, it is not enough. I get shots every 3 weeks but still suffer the symptoms. Sure hope things improve for you. Have a great weekend!

  205. Sarah

    Hi everyone, I’m 30 and was diagnosed with a b12 deficiency a month ago (level was 145), then got another test to confirm two weeks later and it had dropped to 132 already. Oddly, I did not have any symptoms yet other than some digestive issues which might be IBS or celiac or something, and all of my other blood tests were normal (no anemia, folate is normal, blood count is normal). My dr referred me to a gastroenterologist, but I can’t get an appointment for a few weeks, and now all of the sudden I have tingling in my hands and feet! Should I rush to my first doctor on Monday and demand b12 shots now, before I can get an appt with the gastroenterologist? I’m worried my symptoms will get worse or become permanent. How quickly does it progress?

  206. Chris

    Hi Sarah, I also had terrible stomach aches and intestinal problems, still do when my levels are dropping prior to next shot. I don’t understand the referral to a gastroenterologist though. My internist is treating me but I know of people going to a nerologist or hematologist. I would call the first doctor back, tell them of the tingling and ask if there is any reason why you are not being treated NOW. From what I have seen though, there are a lot of doctors out there that do not understand this condition or the need to treat it aggressivly. Good luck.

  207. Sarah

    Thanks Chris! I think the referral to a gastroentologist is because the dr suspects that my b12 deficiency may be caused by a digestive issue, like celiac or h pylori, so she’s hoping I can fix the cause and not have to take a supplement forever. I hope she’s right, but who knows. Thanks for the advice, I’ll ask to be referred to a hematologist as soon as possible.

  208. ShaneLynn

    Hmm, I never connected the gastro problems I was having to B12 issues. About a year ago I was having really terrible stomach pains and cramping and other gastro issue. I was diagnosed with IBS and given pills to take before every meal. I didn’t follow up and didn’t take the pills because everyone told me IBS is not a real illness.

    I am going to my internal medicine doctor Tues and I will see what she says. I am hoping I can get on shots because I can’t take this pain. I also stopped taking the Elavil the neurologist gave me because all it was doing was making me gain weight.

  209. Sarah

    Hi ShaneLynn,
    Ya, I guess the idea behind the gastro connection is that if I have something like celiac or a gluten intolerance, then it’s possible that the only reason I have a b12 deficiency is because the gluten triggers a reaction in my stomach that prevents it from absorbing nutrients. If that turns out to be true, then in theory, I could eliminate gluten from my diet, heal my stomach and begin to absorb b12 properly from food. If you have the symptoms of IBS too, you should look into the possibility of a gluten intolerance. I hope that’s what it turns out to be for me anyway, we’ll see!

  210. Chris

    What I was told was that if you have Pernicious Anemia, you are missing an enzime in the stomach (intrinsic factor). This enzime binds with B12 so as it passes into the intestine you can absorb the B12. Because I am missing this enzime, I will have to have B12 shots for the rest of my life. It is critical to find out if this is your problem because if left untreated it can lead to stomach cancer. I also had part of my bowell removed in 2005 but that is not the problem. I have heard though that intestinal problems can play a part in B12. There are specialized blood tests that can be done before you have any invasive procedures. Do your research on the Internet prior to your doctors appts. so you will know what to expect, protect yourself from doctors that don’t know or understand the causes of this condition and how to properly diagnois is. Good luck to you both.

  211. Jack

    Hi everyone, I’ve been having weird symptoms including unsteadiness, fatigue, anxiety and just overall discomfort for the past 3 years. I’ve seen many doctors, had MRI, CT scans and many more and none thought of testing my b12 levels. The neurologist I saw quickly wrote it off to anxiety and prescribed an antidepressant which I didn’t want to take “just to see if it works”. I did see a psychologist though for a while and in the end even she wasn’t really sure that my symptoms are all in my head. I’m pretty sure my anxiety is triggered by the symptoms and not the other way around. I mean how can you not be anxious if you feel like you’re about to fall over when you walk. 2 weeks ago I went to see another neurologist and after reading about b12 on the internet I really pushed him to check my levels. Granted my symptoms are not as severe as what other people here are describing here and some days I feel like they’re completely gone, but they still bother my very much and they’re hard to ignore. Anyhow, my level came back at 363. For the first time I think I have a plausible explanation, but at the same time I’m having doubts since the level isn’t really that low. The doctor told me to start taking b12 supplements, but wasn’t specific. I started taking methyl 1000 mcg daily tablets just this week and not feeling anything different so far. Any advice if this is sufficient or too much? Should I even be doing this? My diet is good, I eat a lot of meat and dairy products – have been eating well my entire life. I do think that I might have IBS (which started around the same time with the rest of the symptoms), but again it’s not severe, so I’m not sure if that could explain the low level in the first place. Thanks so much.

  212. Jack

    Also, what’s the best type of a doctor to see about something like this? A nutritionist perhaps? Because I don’t think my GP or neurologist have any idea.

  213. Emily

    I am completely shocked to read the reports on here from people who were just told to “start taking some supplements” and that was that. If your B12 levels are seriously low your doctor should be testing you for celiacs disease and also pernicious anaemia, both diseases that can display NO symptoms but can cause B12 deficiency through malabsorption. There is no point taking supplements if you have these disorders as they won’t raise your B12 levels. Furthermore, the disorders themselves can have crippling long-term effects, however, both can be treated IF diagnosed. Furthermore, levels that low should be treated with B12 injections until an adequate level is achieved, even in patients who can adequately absorb supplements. The injections are a cheap and effective way to restore B12 levels to normal much more quickly than supplements can.

  214. LS

    This is all very interesting. I had been having stomach problems for nearly 10 months before finally going in for a physical with my family doctor. She did several different blood panels and found that I have H.Pylori and have both B12 and Vitamin D deficiencies. My numbers are not nearly as low as many of you on here, but I had no idea about of any of this until this week. I am assuming (from the reading I have been doing) that the H.Pylori combined with acid reducing medication could have caused my low B12 numbers (232). I have just started taking 1000mg of B12 and 5000 mg of Vitamin D.
    I was “treated” for the H.Pylori with 2 different antibiotics (Amoxicillin and Clarithramyicin), but I am still having some excutiating stomach aches and bloating… Should I go to a gastroenterologist?

  215. LS

    Oh and I have also experienced fatigue and weight gain – with no real change in my diet or activity.

  216. Chris

    Just had my 3 week interval shot. Just prior to this shot my B12 level is about 400. For about 3-4 days prior to getting it I have the tingling pain in feet and hands, stomach aches, headaches, blurry vision, memory problems and the worst fatigue ever…I could sleep standing up! I have also noted over the past year of treatment that when I get the shot, I experiance loose bowells for 3-4 days, plus for 2 weeks my weight goes down and my appetite increases a lot. The third week my weight creaps up…about a 5 lb swing, like feeling bloated. I see the doctor again in July, may ask her about getting shot every 2 1/2 weeks? My cousin has to get his shots every two weeks. I Would like to know the intervals of everyone elses shots and if they have some of the same symptoms.

  217. Gigi

    HI Emily,
    after reading about low b-12 yes I am shocked too that Dr.s seem to “dismiss” this so easy, mine was lil over 100 this past sept. was told no wonder you feel so bad but JUST take at least 250mcg daily, after two months of this I felt no better went back and was given script for the shots monthly, reading about the levels I started weekly shots for a month(was starting to feel some what human again)went to the bi-weekly and then monthly…well that didn’t last long by the 3rd week i was back down in bed could not get up by myself headaches were non stop,and so many other things happening, I started the weekly shots till I could get back to the Dr. Well saw him last week explained what was going on NOW he thinks more testing may be needed that my body is not asborbing the b-12.(put on the weekly shots for a year) so set up with a G.I. in 2 weeks, 4 years ago my daughter was told her b-12 was low her Dr. just said take supplements ans has never rechecked her.(different Dr. different counties)how can this be so over looked?
    Chris by day 6 I start feel bad again with headaches blurry vision pain in lower back ect, last week I was under ALOT of stress and my shot didnt seem to do much for me this time. Due for a shot tomorrow hopefully this 1 will pull me back up to feeling somewhat human again(at least for aweek)my weight is going up 1-2 pounds amonth then drops again then back up, hopefully the G.I will be able to help with all that is going on with me~as for years I have been getting worst and was told “your just getting older” I’m only 51 now! for now I will take weekly shots. hope all goes well for you.

  218. Bev

    how glad am i that i found this website i thought i was loosing my mind….i was diagnosed two months ago b12 at 192…my symptoms bad pains in my legs,arms & hands…migaraines that make me sick…stomach cramps ,a pain in my groin…memory loss,lack of concentration…i had tablets for 3. weeks but was told my body would not absorb it so had five injections over a week ago…i felt a bit better after the third injection but one week later my symptoms have returned i feel so ill…its taking over my life…i feel emotional all the time & burst into tears at the slightest thing…i dont think people understand how bad it makes you feel until they have it themselves..x

  219. Michelle

    I have just read over some of these and my B12 is around 80. This is not good. I am only taking a B12/B6 vitamin. Can I get a 1000mcg B12 at any drugstore? The one I’m taking now says it only has 125mcg in each pill. I am confused. HELP!!

  220. Chris

    Hi Bev, when I started treatment it took weekly shots for many months to get my levels up to 200 and another 6 months of every two weeks to get up to 400. I now get them every 3 weeks to maintain. If you do not absorb B12, this is a lifelong treatment of injections and blood test to check levels every few months to start, then every 6 months. I know of people that get daily injections in the beginning and even have had blood transfusions. If your physician is not on top of this, get another doctor. Best of luck.

  221. Chris

    Hi Michelle, Your level is dangerously low! Mine was at 40 and they told me I could have organ failure. Pills will not bring a level that low up quick enough. You should be getting injections. If your doctor has not suggested this and has not done the proper blood test to know why your levels are so long, please get another physician. A level this low will cause neurological damage that over time can be permanent. Best of luck.

  222. Bev-uk

    thanks chris this is my next step-getting a new GP as i have been back to see him & he has totally ignored my symptoms telling me they are nothing to do with b12 defficiency….he says that there is a protocol 1 injection for five days-daily then one every twelve weeks…but as i can see from your reply this is not the case…hope you ok michelle…x

  223. Jenna

    Hello!
    I am so happy to have found this site! I am 27 years old and have been experiencing tremors in arms as legs with all movement and twitching. I have been really tired and have started to have a weird sensation in my hands. I had by b12 check and it was 320… I know it is still within the norm but I’m hoping this rather low level is causingy symptoms. I see a neurologist next week to check for ms as well but my tremor are full body and don’t present like ms. I have been more irritable Nd have been having difficulty concentrating at work. I’m hoping this is all caused by b12!! My dr has started me on a b complex but I know it might take
    Months before feeling better is this true?!

  224. B12 Anemia

    Hi Jenna,
    A B12 level of 320 could definitely cause symptoms. I haven’t heard of tremors being associated with B12 deficiency, so be sure to follow up on that with your doctor. How long it will take have your B12 symptoms feel better will depend on what kind of regiment your doctor has you on. If you are getting the shots, it usually takes about 3 months to start feeling some real relief, if you are taking it orally it can take much longer. Your body will continue to heal as your levels rise.
    Wishing you a speedy recovery. Good Luck!

  225. Jenna

    Thank you! I see the neurologist next week. I have found some research regarding essential tremors and b12 levels but I know it’s not a major sign. I just started sublingual b12 1000mcg bit I will follow up with my dr about possible injections. I guess I can explain it more that It appears as muscle weakness. When I hold something in my hand and go to put it down my hand shakes mid movement like its too heavy and my muscles are straining… It started 5 weeks again and I I
    Initially blamed it on working out and just doing too much . How once the other symptoms started I knew something was wrong. Thanks again for your post!

  226. Chris

    Hi Jenna, I also have essential tremor. It started when I was about 30 years of age, just in my head. Now at 56 it is in my entire body, voice, and internal. Some days are bad, some are not. You may want to visit the Internationl Essential Tremor Website. They have a great amount of information. Having ET and Pernicious Anemia is life changing, to say the least but I deal with both as best as I can. Not all neurologist specialize as movement disorder doctors. Hopefully the one you are seeing will be able to help you. Good luck!

  227. Cat

    This is such a helpful site! I had chemotherapy 5 years ago and my B12 levels have never been the same since. I became vegan after the cancer (strict diet – no processed foods at all; only natural produce. Lots of organic. No soft drinks etc) but with my b12 levels low decided a year ago to introduce a few animal products – eggs. bit of fish and a little meat. The diet change made no difference at all. My latest reading remains in the 90s but interestingly my symptoms are mild. I’m very fit and very active but I do feel ‘flat’ about life in general and my brain is definitely on the sluggish side! I’m going to start taking intestinal flora and a b12 complex to see if that makes a difference but I’m not too keen on taking pills. I’ve read that the jabs can cause awful side effects so I want to try and sort this out the natural way. Any tips welcome! Thank you

  228. Eygló

    Sigh! ;)

    What a wonderful feeling to have found someone – MANY – that really understands. Sorry though that all of you HAVE these problems – but you know what I mean ;)

    Being ‘home alone’ all day and just thinking, hoping and waiting is rather ‘hellish’.
    Hitherto I have been picking more and more symptoms that I choose to categorise under B12-deficiency – hmm?!.

    It seems to have been simmering for a long time – year(s)?

    The dangerous part is to become hysterical and register all the worst cases from all the sites on the Net :(

    But, thank heavens for you – for you being here.
    To send only a positive note: I never have headaches :)
    Together we’ll stand (balanced) again :)

  229. Eygló

    PS. Just came from the hospital (after having been like a dead-drunk (walk&talk) for a couple of weeks)
    My B12 level: 153
    Icelandic Med.Aut. give norm: 210-800
    Some say that the deficiency level is very personal; one may be OK with low level, and others get weak although “within norm”
    Eygló

  230. Hazel

    Hi All

    Wow its nice to know there are people out there as frustrated as i am!
    A year and a half ago i started to feel ill, i was incredibly light headed, dizzy, week and exhausted, my doctor told that it must be a viral ear infection and it could take up to six months to go away. Needless to say i got sick of him saying this so i went to another doctor, my new GP was very concerned with my symptems, it got to the point i could not drive because of the light headedness, i became incredibly light senisitve and my vision became blury, he sent me to a neurologist, who stated i had nerve damage in my ear (without doing any tests) i spend months doing phsyio with no outcomes so i demanded tests for my ears, turns out they were fine.
    My neurologist then claimed that it had to be a rare form of migraines, by this time my symptoms had increased to the point i could not function at work, i was beyond exhuasted, i couldn’t concentrate, my memory was falling, my vision was a nightmare, i had to wear sunglassses inside, my leg cramps were constant, pain in my legs, weekness, off balance etc. i eventually told my boss i couldn’t work anymore and i havn’t worked in the last 7 months, this has caused depression and anxiety mostly from not understanding why i feel so ill.
    I asked my GP and Neurologist to test my b12 levels and both refused, after insisting my neurologist did and stated it was fine i had a reading of 210, my iron was low, my vitamin d was 20 yet he told me there were no problems, he send me to a cardiologist who diagnosed me with Neurally Mediated Hypotension, ive been on medication for 3 months with no real difference for this condition.
    Last week i went back to my GP and asked to test my vitamin levels again, my B12 level came back at 118, he has started me on B12 shots once a fortnight for 3 months. He didn’t explain anything to me, didn’t connect my sysmptoms for the past year and a half with b12 definiceny at all, im gonna question him about this and try and get a PA test done also. Im currently also on prescribed Potassim and , Vitamin D My question is do you think my symptoms could of been a result of my B12 deficiency ? The only thing i am concerned about is my visual symptoms, can you get blurred vision, floaters in your vision and sensitivity to light because of b12?
    Im desparate to start feeling normal again and start working again, i hope ive finally figured out whats wrong with me
    Thanks.

  231. Chris

    Hi Hazel, all your symptoms sound like me a couple of years ago. I still have blurry vision, floaters, and other symptoms off and on, mostly when I am due for another shot. I get injection every three weeks. A few days prior to shot time I start to notice symptoms coming back. When first diagnosed I got injections every week. Good luck and keep after the doctors. If they don’t treat you the way you think if correct, get another opinion.

  232. Hazel

    Hi Chris
    Thanks so much, you have no idea how great it feels to know others are experiencing what i am and that im not crazy! lol I just wish i could get confirmation from my doctors which hopefully ill get in a week and a half, ill keep you posted
    Cheers

  233. Eygló

    A month after having 5x daily b12-shots and betolvex 1mg every day:
    My walk and talk has “returned”, got better every day, about “ok” in að week, still low in energy though (Some say one might need 3 months to become normal again).
    Blurred vision, especially when it’s getting dark(er), bothers me a lot (half of it anxiety – that it won’t ever get normal :(
    Due to 2nd blood test in a few days.
    A doctor (in fact a psychiatrist) “insisted” that I started taking Omega-3.
    After having googled and read a lot about B12-deficiency and such a “knock out”, almost total exhaustion, I also bought a “B-100″ (B-Comlex for Maximum Effectiveness) They told me it were designed to “fill upp” for people that had had any kind of trauma; hit the bottom)
    Also, – since there might be more than just the “12″ that could be missing, after such a “crash”
    Can’t tell about that, yet.

    So glad to have you “out there”. Has lifted my hopes, that were none in the beginning.

    I have also experienced what I see by too many of you, – the doctors hesitate to test the levels, and then if they finally do that, don’t act upon it.
    My daughter had her level read 200+ Her doctor asked: Do you want me to write a prescription?!!!!!
    What else???
    It is terrible, when you are fighting to be able to just stand up and about – to have to fight your doctors for help!!!
    Well, some are wonderful <3

  234. Diane L

    I am beyond thrilled to have found this blog!! I am newly diagnosed with a B12 level of 238. I had a pontine stroke around June 2….had been bumping into things, sore arms and neck, low blood pressure, bladder issues and, incidently, glucose waaaaay high. Fatigued all the time, and my once-great memory less than sharp. Ended up in the ER, given a shot of insulim, and sent home. Next day l ended up in the ER. again after not being able to get dressed or answer my scared hubby. Anyway, 4 days later, l had an MRI that showed, allegedly, a small stroke at the brain stem. I was in rehabfor ten days l am doing really well now…..but now l wonder if my symptoms aren’t more related to a B12 deficiency!! My internist gave me a shot today and will give me one for the next 4 weeks, plus supplements. I am very hopeful…but want to thamk everyone who has posted here for listimg all their symptoms and making me feel as if.l am vety much on the.right track!!!

  235. JoAnn

    I first discovered this blog in Oct, 2010. At that time, I was diagnosed with pernicious anemia with a B12 level of 188. At that time, I was etremely tired, could barely get through the day, had memory loss, my hair was falling out and my eyesight and hearing were impaired. The Oncologist/Hemotologist immediately started me on weekly injections. After 6 months, my levels did not increase much, so he advised an oral daily supplement in addition to the injections.

    I was tested for PA, celiac disease, thyroid disease, bacteria, etc., etc. – everything tested negative. I have not been able to determine the cause of the deficiencey.

    I receive injections every 10 days. I recently started to exercise again, and am experiencing chronic fatigue again and tingling in my right leg.

    My RBC is on the low range of normal, my WBC and platelets are low. My B12 level tested 1000, but I still am so tired.

    I have been to well respected doctors in the San Francisco Bay area – a GP, Oncologist/Hemotologist, gynocologist and Gastroetologist. I would like to find the cause of my deficiency, but do not know who to see next.

    My questions: Is there a doctor/specialist in the Bar Area for B12 deficiency? Is it to be expected that after 1 1/2 years of injections that I would still be so tired after resuming some daily physical activity?

    Thank you for this blog. It is a valuable resource.

  236. Secily

    Hello all,
    After many years of symptoms, misdiagnosis, and being called a hypochondriac I finally (today) got my B-12 levels. 39!!!! I am currently in a wheelchair because the wonderful medical doctors could never agree on what was causing my nerve damage. After reading this blog I am so angered that it was something so seemingly simple to diagnose.
    I went in for a lumbar puncture a week ago because I finally changed neurologist and begged him to run every test under the sun. My old Dr told me I had RSD when I was a teenager and I believed him because I didnt know any better. I have been through a cardiac ablation because of the tachycardia, Sympathetic nerve blocks for the pain and numbness, and dozens of medications that never helped.
    I literally thought I was going to die or go totally nuts. My first set of injections start tomorrow. I am so hoping that these symptoms can be reduced and I can get out of this damn chair but the doc is doubtful I can regain mobility because it has gone on so long. So glad to know I am not nuts!

  237. Chris Alte

    Hi Secily, I am so sorry to hear your story. I also was ill for years and they could not figure it out. A year and a half ago my count was found to be around “50″ and like you I have suffered a lot of nerve damage. They told me I was close to organ failure. Off and on I have had injections weekly, then up to monthly but my level is at about 420. Sounds like a good number but I still have a lot of bad symptoms. I was told they may not get better but if they do it will take many years. I have not been working since Sept. 2010 I don’t see a job in my future. At the age of 56 I did not consider retirement but now it looks like this is how it will be. My best advice to you is rest. It will take a lot of time but you will start to feel a little better. At first I was told to stay home with “bed rest” sort of, for 3 months. Make sure your family members get tested. Mine runs in the family. My boys are in their 20′s but have had a baseline B12 test done already. If you have any questions as you continue down this past please ask. I will answer and share with you all. I will be thinking of you and hope you feel better soon. Chris

  238. Mal Mac Bride

    I am 76 years young and my B12 was down to 44 about 14 months ago . So the doctors put me on B12 pills which did not help at all so went on B12 by needle once a month for about six months, then stopped giving it to me after my B12 went up to 1000. So now after eight months He would not send me to get it checked during this time even hough I asked him to do so. Finally he had me get the test and now it is at 139. He will not get it checked until the middle of October now even though I said I wanted it sooner.
    I have decided this is not good enough so going to another Doctor tomorrow for another opinion. He did put me on the B12 pill again even though I told him it did not work before when he had put me on it. Refused to give it to me by needle. No idea as to why.
    Any feedback would be helpfull
    Thankyou,
    Mal Mac Bride

  239. Chris

    Hi Mal, How did you make out with the new doctor? My doctor told me taking pills was a waste of time and money. I am on lifetime shots of one every three weeks but every once in awhile they give me them more often for a boost if my levels start to drop. Actually, I have a few friends that are nurses and they give the shots to me since the shots are not covered under my insurance. I filled a perscription, bought a box of needles, a box of alcohol wipes, and it was inexpensive. You can learn to give the shots to yourself also.

  240. Eygló

    Collapsed April/May, level 153
    Got shots and pills (just in case. But most doctors say it is likely to be a waste of time and money)
    Level middle of June: 1369!!!

    Still very tired and still depressed BUT a lot of deficiency symptoms are GONE :)

    Had a test a few days ago (don’t know yet)
    When asked, one doctor said: “Now you have “filled the tank”, but each and every cell needs to get its share, and that takes time.”

    Thankful for getting back from some deficiency symptoms though :)

    Thank you all for being here – and YOU who started this page. Gives the feeling that you are NOT ALONE.

    All the best to all of you

  241. Elena

    Just a suggestion everyone, testing your B12 is excellent. Put yourselfs on a daily probiotic along with your B12. Get your Vitamin D levels checked immediately. Read and research the latest on B12, probiotics and Vitamin D3 drops. I was deficient in both B12 and D and it took over a year to recover. In fact I’m still recovering from severe LPR (also known as burning throat or silent acid reflux). My Drs gave up on me. It was a nightmare. They had me on the strongest PPIs and I had a fundoplication surgery and I got worse and worse. Finally I took over my own treatment and when I did I got better taking D3 drops under my tongue at 6,000 IU, medical doses of probiotics (I suspect they help maintain B12 levels) and B12 drops under the tongue. Its been a nightmare. I thought my life was over until I took over my own treatment plan. My Drs don’t say much when I go in now and they are stunned my LPR has slowly disappeared. LPR is a very common problem but Drs told me for the longest time I had allergies. When I lost my voice they didn’t know what to say. After two years they said it was a mental health issue caused by stress. Gross misdiagnoises! What I didn’t know was that the acid vapor, from my stomach, was slowly burning my throat and eating through the nerves that go up into the head. I had atrophy of the esphogeal spinchters. They didn’t close off my stomach processes. I’m very lucky that PPIs and the fundoplication didn’t kill me. I also had incontinence, bone pain, couldn’t lift my arms to wash my hair or put on clothes. All of it disappeared when I got on Vit D and B12. I survived just barely. I started researching and connecting the dots and restored my own health. It is so disturbing that Vitamin D, B12 and probiotics is not part of maintstream medicine. So many people suffering for nothing and so much money being wasted when there are simple remidies. …what a waste of lives and money. Just remember modern diet doesn’t has dessimated our going out in the sun, we wear long clothing, and if you live above the 37th latitude on the planet, you simply don’t make enough D on your skin. If you older your skin doesn’t create D as good and if your dark skin it takes stronger sun to create D. If you heavy the fat cells absorb the circulating D and you are left deficient. B12/intrinsic factor helps extract the nutrients that feed our cells. Without it we develop neurological illness. Levels are currently set too low. I found that if I had listened to my Drs I’d be dead by now. I’m so angry about all that I went thorough and suffered horribly. And it was so unnecessary.

  242. ShaneLynn

    Hi all – Coming here has helped my anxiety. Back in Feb. my B12 was 290 and I was having bad neurological symptoms. Finally got started on shots since April. I am feeling much better than back in Feb when the burning and tingling was so bad I could hardly walk. But I have my regression periods I call them where the pain comes back. I am supposed to go get my levels checked and my D levels checked but haven’t had the time. So I guess 4 months of shots will NOT cure me. But I only have 2 months left of shots so I am really scared of what will happen when those are gone. Today is a really bad day and I could hardly sleep last night. So that is normal even after you start the shots to still have the symptoms?

  243. Chris

    Hi ShaneLynn, I have been being treated with shots since April 2010 and still have symptoms every day. I have worse symptoms a week prior to the next due shot. Stopping the shots may put you right back where you started! I have pernecious anemia, which means I do not absorb B12 naturally from foods so will require shots for the rest of my life. Do they know why your levels were low and causing you symptoms? If this doctor wants to just stop the shots, make sure you get levels checked often to make sure they are not going down. Maybe get an opinion from another doctor. Honestly, I was told it may take many years for symptoms to go away/get better and may even be with me forever. Even still, shots will be forever. Good luck.

  244. Chris

    Hi Elena, I am sorry to hear you suffered so much. My level was around “50″ and was told I was extreamly close to organ failure! I feel your pain and frustation. I however did not have a problem with vitamin D. I also have pernecious anemia and will be on lifelong shots. My doctors told me for many, many years I was suffering from “borderline” thyroid problems, emotional issues, stress etc. and I was seeing an Internist and a Neurologist at the same time. I lost 40 lbs. in one year because my stomach hurt so bad I could not eat more than a few bites at a time. I was having problems with my heart and breathing. I was a young 54 years of age. Not until I went in to see my Internist and told her I was going to die did she take me seriously and order the B12 labs in addition to many others. I was told to go home and go to bed for three months. My life has changed drastically because of this condition and what it has done to me. I have learned to take it one day at a time. Good luck.

  245. ShaneLynn

    Thanks Chris – my regular doctor said that I can switch to oral supplements when I am done with the shots. I got the low B12 diagnosis from a neurologist and when I went to my regular doctor she said, oh 290 is normal you don’t really need shots. But I told her I was getting them and that was it.

  246. Chris

    It is not so much about the number as to how your body is absorbing and using the B12. Did they do a blood test to examine your red blood cells. Mine were enlarged and very mishapened, meaning they were unable to carry enough oxygen to my organs. My doctors said that my being at a level of 430 now is still not high enough. They would like it much higher. If they do eventually switch you to pills get your levels checked regularly. If they start to go down, get back on the shots. Good luck!

  247. ShaneLynn

    Anyone come across any meds that help with the pain – the burning and tingling?

  248. Elaine

    Hi all. I have a similar story to most. More than a year of feeling tired, weak and dizzy followed by a rapid increase in neurological symptoms over the past month or two. I went to the ER, a neurologist and my regular doctor who gave my myriads of tests and declared me fine. Finally, it was an urgent care nurse who tested my b12 level and told me 280 was too low. My neurologist and regular doctor, however, insist that I’m fine and to simply take over the counter b12 and get retested in 2 months. Clearly I’m going to find a doctor who will take this more seriously and also start a treatment regime of shots. In the meantime, some specific questions:

    1.) Is 5000mcg methylcobalamin sublingual once a day too much? Or alternately, will it not have an impact at all if it turns out I have absorption issues?

    2.) Are the shots always better than the oral supplement? Why or why not?

    3.) If my number does eventually go up, do that mean I’m “fixed?” Or can someone continue to have symptoms and require shots/oral supplements even with a number of 400+?

    Thanks for any guidance!

  249. Liz @ B12anemia.org

    Hi Elaine,
    Definitely a good idea to find a doctor who will take this more seriously. Both my regular doc and neurologist say that anything below 400 can lead to deficiency.

    1. It is difficult to overdose on B12 when you are deficient, but 5000 is a higher amount (the one I sometimes take is only 500mcg that you can take up to 5 times a day, which would be half your dose). Check with your doctor on the amount that is safe to take that way.

    2. Much debate has gone on over whether or not sublinguals can give you enough B12 when you are deficient, but every doctor I have spoken to does not think they are as effective. Personally, I have found that the shot are by far the better choice and have been very instrumental in my healing and overall health.

    3. If your numbers go up it can mean that you won’t need to get any more shots, but it depends on the cause of your deficiency. If it is just from lack of B12 in your diet, then adding a supplement will be all you need. If you no longer make the intrinsic factor (which is needed to carry the B12 naturally through your body) then you will need shots/sublinguals for the rest of your life (which is the condition I have called Pernicious Anemia). Once you start a supplement of any kind the blood tests will no longer be accurate. Just because you have a certain amount of B12 in your blood, it does not mean that it is the amount absorbed into your cells. You can absolutely have numbers of 400+ and still continue to have symptoms. Once you do start treatment it can take months for you to feel better and years to heal to your potential.

    I hope this helps a little. Good Luck with your recovery!

  250. Chris

    I get my shots every 3 weeks because I can’t last longer than that. Today is 3 weeks plus 1 day. No kidding, I am fall over bone tired, tongue is sore and red, have a headache, zingers in my feet and hands, stomach pains when I eat, sleeping 10 hours a night and still find myself climbing into bed for an hour or two in the afternoon… and this has been for the past few days. Happens every few days before I am due for the shot. No mistaken when it is due. I have been getting shots since April 2011 and count is up to 430ish. Does anyone else have to continue shots every two to three weeks? Also, does your level drop so dramatically that the symptoms come on quickly, full blown?
    Sometimes, like today, I feel so fed up with this. I know it is a lifetime condition, shots forever…could be worse but dang!!

  251. gaurav

    Hi!! i was diagnosed with b12 deficiency with serum level of 85.i was feeling extreme tiredness and dizziness.i started getting 500mcg injection alternate day. i’ve taken by far 8 shots. my conditions improved for few days after taking few shots. but it again started with weakness, low brain activeness,sumtimes racing heart beat,pulse and intense fear and anxiety.is it all due to vit b 12 deficiency or can be anything else. how can my b12 drop to so low without any symptoms. i got checked immediately after i started feeling weak. sometimes i’m depresses thinking whether i’ll be fine again or not?

  252. Gigi

    Chris,
    I have been getting shots once a week since Nov.2011 after 2 months of weekly shots tried to go bi-weekly then monthly was back so sick I couldn’t hardly stand in the shower again sore tongue,fingers and toes so cold that they felt like they were burning, headaches lower back pain so bad that I could barely walk. went back to the Dr. tried to explain that something just wasn’t working and I couldn’t keep going like this, he just wrote me a script for weekly shots and said here. So I have done weekly shots ever since, he doesn’t want to retest my levels or find out why they were so low to begin with. I have recently tried 10-12 days in between shots and yes my body starts with symptom’s on about the 9th day. I also take 1000mcg of methylcobalamin daily in between the shots. I wonder if this will ever get better or at least be where i can make it to once a month shots. Since I have to give them to my-self I can’t do the IM shots, so I give just under the skin injections. I read the blogs here and know I’m not the only one suffering with this and that I am NOT crazy. I dont have the energy or strength that I once had not sure I ever will again but at least with the weekly shots I’m up-right and make it through the day. Wish I could just get my fingers and toes to stay warm!!!! My friends and family don’t “understand” what I’m going through and why some days I JUST CAN’T do things. Everyone thinks its just a “vitamin” that your low on. NO BIG DEAL!

  253. Chris

    Gigi, I never heard of injecting just under the skin. My understanding is it has to be injected into the muscle to absorb? I also have a perscription and bought needles but luckily I have a couple of friends that are nurses that give me the shot. Our temps outside have gone down to the 70′s day and 40′s to 50′s at night and I am freezing. I am in sweats, under a quilt, and yes, my hands and feet are ice!! My doctor told me the neurological damage could take years to reverse and may never get better…time will tell. I look forward to getting the shot because I feel so bad but then have to deal with the side effects of the shot for at least a few days. Back to you though, have you considered another doctor? Your blood levels should be checked at least every 6 months, more often in the beginning of treatment. You may also want to research the injections…like I have been told and read, they are to be given in the muscle of the upper arms, thighs or back hips. Good luck!!

  254. gaurav

    Hi!! i was diagnosed with b12 deficiency with serum level of 85.i was feeling extreme tiredness and dizziness.i started getting 500mcg injection alternate day. i’ve taken by far 8 shots. my conditions improved for few days after taking few shots. but it again started with weakness, low brain activeness,sumtimes racing heart beat,pulse and intense fear and anxiety.is it all due to vit b 12 deficiency or can be anything else. how can my b12 drop to so low without any symptoms. i got checked immediately after i started feeling weak. sometimes i’m depresses thinking whether i’ll be fine again or not?

  255. Chris

    Hi Gaurav, your count is very low. Mine was around 50. Depending on how long your count was so low will determine how long it takes for you to feel better. I have been in treatment for almost 1 1/2 years and although I do feel a little better I am still quite sick with symptoms. All of the symptoms you mentioned sound like lack of B12. If you have not done so yet, research “Pernecious Anemia” on the Internet. Keep up the shots. Hopefully when they do another blood test your levels will be rising. Remember, it will take time before you notice improvements. Good luck!

  256. Patti K

    Hi, so glad to find this site! I am 45 and been having the worst symptoms of fatigue, headaches, unbalanced, very tingly legs with electrical feeling zaps go through them. My left side of my body seems to be more affected. My B12 level result was 230. They told me low, but not dangerously low at all. They did decide after a few weeks to start giving me injections once a week because my symptoms were not getting better, but getting worse. I have had a MRI of my head and spine and they were all normal. He wants to do a lumbar puncture to just make sure I guess?
    I wish I felt better, I do have s little more energy but I am so unbalanced and the tingly numb legs are just crazy. My anxiety is beyond anything I can stand. My neurologist told me that he didn’t think my B12 level was low enough to cause such symptoms. I should be better after 3 injections. I’m lost and was wondering if my levels were indeed low enough to cause these symptoms that are still affecting me so bad? I can’t even move some days. Does this just take a long time to heal from and do I need to be doing anything else to help. I don’t think I have MS, but I guess they want to rule that out. Thank you so much for any help you all can give me!

  257. gaurav

    hi chris!! thnx 4 help. my doc says 10 shots of 1000mcg are enough to put my level back. he says my symptoms are psychological and i should drive them outta mind that i’m weak. i don’t knw what to do? should i take oral supplements as my doc is advising me to start after at least 2 months after testing again my b 12 level..pls help

  258. Chris

    Hi Gaurav, are you serious or is this a prank!! You must go see another doctor, yours sounds like a quack. I have worked in medicine most of my adult life and sad to say there are bad doctors out there. I hope I am not offending you but REALLY!! Wait and see what your levels are after shots for 2 months. If you have access to the Internet, research Pernecious Anemia. If you are not absorbing B12, taking it orally will be a waste of time and money. And NO, psychological problems will not cause low B12 but low B12 can cause psychological problems including depression. You can not cure a low B12 by driving the symptoms out of your mind. Please…keep in touch and let me know how you are, and please get another doctor, either an Internist, Neurologist or blood disorder specialist. Good luck!!

  259. gaurav

    hi chris!! actually after 10 shots i’m feeling well. actually my doc said that it’s impossible to feel weak after 10 injections what happens is u r habituated of getting weak and thus ur mind thinks u r weak while u r not. he asked me t stop injections and try pills for two months, if i have pernicious anemia my b 12 level will drop and then he will start shots again. though, to be on safe side, i am going tomorrow to another doc for advice will keep posting about my condition. thnx 4 helping me out in bad times.. godbless!!

  260. Chris

    Hi Gaurav, I sure hope you are lucky and end up not having Pernecious Anemia. So what were the B12 levels when he asked you to stop injections and switch to oral B12? I have been on injections for a year and a half and still suffer symptoms. If I do anything physical even for an hour, I am having to rest the remainder of the day. Everyone’s body is different and we process medications differently. Just having a higher B12 level does not mean your body is using it correctly. I am glad you feel a bit better and hope it lasts and improves. Let us know how you make out with the new doctor.

  261. gaurav

    actually he told me that geeting my b 12 level checked just after stopping injection will come around 1000 as it’ll show b 12 present in blood. he advised me to get my b 12 test done after 2 months. should i take my b 12 test now? and actually i have symptoms of weakness only mostly in legs which comes and go. few days it’s good but again few days it’s bad. i feel urge to stretch my legs.

  262. Chris

    Hi Gaurav, I have to ask, are you in the USA? I can tell you that with a 99.9% certainty your count after 10 shots will not go from 80′s to 1000! You had said you were seeing another doctor? The reason you have weakness in your legs still, be it off and on, is that when we have low B12 or our bodies are not processing what B12 we have properly, it causes the red blood cells to be mishapen, which in turn means oxygen is not carried to our organs, which negatively effects our central nervous system. The longer you had a low B12, the more severe the symptoms will be and the longer it will take to get them back to normal. Even when the counts get into the normal range it can take years to reverse the damage. It is also possible to have permanent nerve damage. I hope you find a doctor that knows what they are talking about and how to treat it. Good luck!

  263. Tracy

    Hi my daughter who is 17 has been feeling unwell for some time. She is constantly tired even after 12 hours sleep, she is irritable and feels down. She saw a new doctor at our surgery who arranged a b12 test. Her level came back at 154 and so we went back to the surgery but saw a different dr. She doesn’t want to take any action and instead asking about her symptoms said she was depressed?? She is referring her to a consultant for depression and does not seem to think her levels of b12 are a problem. On reading information on the Internet I have doubts. What should I do

  264. Liz

    Hi Tracy,
    Please get your daughter a new doctor immediately. If that doctor doesn’t take it seriously, then find another and another, until you find one that does. It took me quite a few doctors until I found one that understood the seriousness of b12 deficiency and treated me properly. All the rest just wanted to put me on antidepressants to get me to go away. A b12 level of 154 is seriously low, no doubt about it. Doctors love to label b12 as depression, many of the symptoms are similar. The sooner she gets her b12 levels back up the better! She is way to young to end up with permanent damage (usually nerve), which is what can happen with low b12. Because she is so young, you also need to find out what the cause of the low b12 is in case it is an easy fix (just changing her diet), and not pernicious anemia.
    Good Luck!
    Liz

  265. gaurav

    HI CHRIS!! I WANNA ASK WILL IT BE GOOD TO TEST MY RBC COUNT TO ENSURE VIT B 12 DEFICIENCY HAS HEALED TO ANY EXTENT OR NOT? SHOULD I CHECK MY COMPLETE BLOOD COUNT OR RBC COUNT? I MEAN AFTER INJECTIONS B 12 TEST WILL GIVE ENHANCED RESULT IN PRESENCE IN BLOOD BUT CAN RBC COUNT GIVE US DETAILS WHETHER BLOOD FORMATION IS OCCURING OR NOT IN DESIRED LEVEL?

  266. Chris

    Hi Gaurav, they do the entire panels on me. My counts were very low, “43.9″ and it looks like they were this low for a long, long time. Doctor’s kept testing my thyroid (family problem) and also said I suffered depression. When I finally said I thought I was dying, they tested the B12! I pulled copies of my labs and they ran “CBC,DIFF,PLATELET:ABCA,COMPREHENSIVE METABOL PNL:CMP, LIPID PANEL(CHOL,TRIG,HDL,LDL),SEDIMENTATION RATE, HEMOGLOBIN A1C,NT ProBNP,PARATHYROID HORMONE LEVEL INTACT, AND B12. You can look these tests up on the Internet to find out what they are for. I had abnoral results on most everything but now my levels are in normal ranges. What they told me was my RBC were very large, mis-shapen and therefore were unable to carry the oxygen needed to my organs, which in turn caused me to have neurological damage, shortness of breath, abnormal heart beats, blurred vision, large loss of weight, exhaustion etc…Pernicious Anemia is very serious and if you have a low B12 level it is critical to find out why. Mine was at organ failure levels!! Personally, I believe a B12 level blood test should be part of the normal panels they run on everyone. So in answer to your question, they need to run the RBC and other tests also. I am glad to see you being pro-active in your care by asking questions, not only here, but of your doctor!

  267. Loubie

    Hi,

    I have been diagnosed with low B12 (180)and low iron levels and prescribed an over the counter multi Vit and iron tabs My symptoms are exhaustion, anxiety, irritabiity, headaches, breathlessness and wheezing.

    This was a month ago now. I am unable to take the required dose of iron as it causes my IBS to flare up and the multivits don’t seem to be doing anything to help my symptoms, if anything I feel worse. Just even to get out of bed in the morning and function at all is a real struggle.

    I am also 8 months pregnant and have told to stop my antenatal vits to take the multivits which actually have lower concentrations so could only be worsening the condition?

    I returned for follow up yesterday to be told that my bloods taken last week had been refused by the lab as they had been tested in the last 3 months so they have no idea whether the levels have worsened or improved – my suspicion is that they have worsened as I do not feel any better. I have been told to carry on taking the multivits and nobody seems concerned about the potential side effects to myself or my baby.

    I have even tried to get my bloods done privately but have been told by the clinic that that I would need a GP referral in order to do this

    I don’t really know where to turn next. Is there anybody who can help or offer advice?

    Thanks

  268. Chris

    Hi Loubie, I have never heard of a lab refusing to process blood test because they are to close to the previous ones?? Doing a B12 level close together is not uncommon. Without knowing why your B12 is low makes it almost impossible to know how to treat you. It is also not uncommon to be anemic when pregnant. You should seriously consider consulting with another doctor, an Internist, Neurologist, or blood disorder specialist. When you make an appointment make sure to ask if they are familiar with diagnosing and treating low B12 conditions. Until then, it may be OK to use B12 pills or drops that you put under your tongue, which allows it to be absorbed into the muscle. If you have Pernicious Anemia, you won’t absorb the B12 through your stomach/intestines. Also, with your IBS under the tongue would be a better option. Of course the ideal treatment is injections. The fact that you are pregnant should make your diagnosis and treatment that much more important! Good luck.

  269. nichola

    hey all im hoping someone out there can help me, my sisters both have a vitimin b12 disorder, i suffer with dizziness/vertigo, panic attacks unexplained tierdness my muscles are really painful ny neck goes into spasms which causes the most painful headaches and face aches, i feel weak get tingling hands and feet suffer with anxiety, mood swings balance probs and loads more, anyway i had a full blood count and my b12 came back as245 ng/l i was wondering if anyone could tell me if this is normal as my doctor said it is, ive asked for a re-check as when i had that test i was taking a form of b12 that i picked up from morrisons he has said he will do it again but he dont think that any b12 in a supermarket would make it in normal range like it is, i tried looking online but everywhere is using different to the ng/l range so im a little confused, please im really needing help on this i have 4 children and i just want 2 b myself again.

  270. Liz

    Nichola,
    All your symptoms could be from b12 deficiency. Any levels below 400 can cause problems and 245 is quite a bit below that. Taking ANY kind of b12 supplements has the potential to raise your levels in a test and it is possible that your real numbers were lower than you tested at. I strongly recommend you find another doctor who understands how serious b12 deficiency is and gets you the proper diagnosis and treatment asap. If it is b12 deficiency or pernicious anemia the sooner you get shots the better.
    Good luck!
    Liz

  271. nichola

    thanks for ur quick reply i really appreciate it the thing i dont understand is the ug/l upto the other i have came across on sites, my doctor is saying its in normal range and there is no way any over the counter meds would have made a dramatic change to my test, i have a rebooked blood test for tuesday so i will hopefully get the results by friday so i will post them, i stopped the vitimin b12 ages ago and im not going to eat or drink anything other than water to see the outcome, i just wish they would listen to my symptoms rather than keep telling me im depressed and offering me anti-depressants.

  272. nichola

    would be very thankful if anyone could help out with these results and maybe help me out with tackling my doctor.

  273. Bonnie

    Reading all of these posts I realize man Im screwed. I had a gastric bypass in 2000, as a result, I dont absorb any iron or b12. The specialist I am seeing right now has finally put me on iron IV treatments but we are at a total loss as to what to do about the b12. What is unbelievable but true is, Im allergic to all forms of b12. The least reaction I get is from a nose spray but the headache I get from that leaves me unable to get out of bed for 1-3 days, and I can only take 1/2 a dose and only take it every other week otherwise I develop heart attack type symptoms. I get up, go to work and come home and havent been doing much of anything but feeling Im lazy! because I cant seem to find the energy to go for a walk or do something fun. My B12 is currently at 113. I have no idea what the future holds but Im scared and always looking for the least bit of information that might help. Please dont tell me Im not allergic to b12, every doctor Ive been to has stated that, at first. Now, my doctor freely acknowledges the allergy and is at a loss as to how to help me. Hes very very concerned and a dedicated doctor, I did warn him I would be a challenge!

  274. gaurav

    Hi chris! it’s me again. after 20 days of normalness i again feeling new symptoms. these are pricking sensation in feet and palms lasting for a second. i also feel unsteady (a little) while walking. i however doesn’t feel weak like before. any ideas are these also b 12 def. symptoms. i never experienced thee before but last 3 days. even i feel pins and needles when my limbs get pressed for few mins.

  275. Chris

    Hi Gaurav, Even after being treated with injections every 3 weeks over the last year and a half, I still get the pins and needles in my feet and hands, usually the week before I am due for another injection. I also get unsteady. Your symptoms can be from the low B12, it causes nerve damage. I don’t remember, where are your level’s at now and how often are you getting injections?

  276. Hazel

    Hazel
    Help needed!
    Hello , firstly I apologize if I’m posting on the wrong area .
    About 8 years ago my father was diagnosed with Parkinsons Diease , he began to move slowly had off balance and sever musle pains and aches , anxiety, lightheadedness etc his continued this way ever since . About two years I become very sick , loss of balance , muscle pains, visual problems, light headedness, anxiety, etc It took two years to diagnose a vitamin b12 defiency of levels around 100 . This got me thinking could my fathers problems have been a b12 defiency? Now even if they had of tested me two years ago my levels probably would of been in the Australian normal range of between 200 -700 and I’m aware many believe anything under 400 could cause symptoms . I asked my father to get tested his b12 came back at 280 with his folate levels through the roof at 900 the highest level supposed to be 400 , I’ve read somewhere that high folate levels can mask b12 results , my question is is this true? Does anyone have any links I can look at and show the doctor
    I’m well aware my father may have Parkinson’s but if there’s anything that could improve his quality of life I have to look into it
    Thanks

  277. Allie

    Well mine was at 70 and I have been taking 1000pg/ml tablets for a while. I honestly was an emotional wreck, always tired, weak and shaky before I found out the cause of my problems. Everything would drain me, and most people believed me just to be lazy :(
    People seem to be a little too paranoid about being in the 200, even 300, 400 range. My doctor didn’t even seem concerned about mine being so low so I didn’t think anything about it until I went to my pharmacy and they explained what it meant.

  278. donna *

    i feel quite normal now that i have read what all you guys have posted. There are some differences with my B12 (140) and dropping regularly at this moment. I have been having injections fortnightly. I have for the past 8 weeks not been able to smell or taste anything. This lack of taste n smell maybe unrelated i was wondering if anyone else has the same symptom.

  279. Chris

    Hi Allie, Like you, my level was extreamly low at about “50″ and was told I was close to organ failure! I have been getting injections for about a year and a half and my levels came up to “450″ but I still suffer with symptoms. I do have pernecious anemia which runs in my family. I get the shots every 3 weeks because my symptoms get really bad as the level drops again. It appears I have had this blood disorder for many years and my neurological damage may not go away ever. I wish my doctor had been more attentive to my symptoms. She kept doing labs for thyroid problems but never did the B12. How long have you had treatment and what are your levels now? Hope you are feeling better.

  280. ShaneLynn

    Hey all – back in around March I had a B12 of 290, got on shots and then got tested again in late September and my B12 was up to 1100, so the doctor told me to stop. I was having bad neurological symptoms and bad muscle pain. I got my D tested in September too and turns out it was 18 when it is supposed to be 30. So now I do oral B12 and D. But a couple times a month the burning and tingling comes back in my feet and hands. I think I should probably get my B12 tested again off the shots to make sure its not falling again. But I do feel a world better after the shots.

  281. Chris

    Hi ShaneLynn, it all depends on why your B12 is low and how your body processes the B12 it gets. You should for sure get it tested to make sure the oral is working. I have a cousin who, after shots his B12 went up like yours and they stopped the shots and went to oral. It did not take long for him to be really sick again. He has to get shots lifetime, like me for pernecious anemia. I am glad to hear you are feeling better and hope it continues!

  282. Eygló

    Just to say “hi” and hopefully give someone some hope ;)

    After about a year of “always tired and feeling “wrong”" my B12 was at last checked when I ended up in the ER with serious deficiency symptoms.
    Level in May 153

    After 5x shots in 5 days followed by one shot every two months, my last level was 860

    Now 7 months later “just about” EVERY SYMPTOM has gone.
    I feel as I have recovered from my “crash” in May.

    My HAIR seems to have been the indicator – at last my curls are back ;)
    It had become “stiff”, lifeless and straight.

    Hoping that you will get lucky as I am/was.

    My doctor tells me that it is vital for me to have the B12-shots every 1, 2 or 3 months, depending on what appears to be needed to keep up my levels ;)

    Love to you
    Eygló in Iceland

  283. gaurav

    hi chris !! after few weeks of recovery iam again feeling tingling in feet and unsteadiness. i am not having vertigo just feel that unsteady while walking and sitting. no weakness. i got 20 injections in last 2 months. but tingling in feet started after taking 10 injections. how can it be possible? if it is due to vit. b 12 def. initially i had fatigue only. can b 12 injections trigger tingling pain in feet? i also am taking 1500 mcg of oral b 12 daily. could it be anything else. pls help. my initial b 12 was 85 in september.

  284. Chris

    Hi Gaurav, You had a very low B12 level like mine (was 50ish). I can takes years for any damage to be reversed. The longer your B12 level was low, the more likely some neurological (nerve) damage can be permanent. When I started treatment in April 2011 I was told to stay home, do nothing, for 3 months! Even though your levels may go up with injections, your response to treatment will depend on how your body processes the B12. I you have Pernecious Anemia, taking the oral B12 will not help much, if at all. What is your level now?? I got mine up to “450″ and still deal with a lot of symptoms. I get my shots every 3 weeks and honestly the week before I get it I feel like crap. After I get it, I have a few days of feeling kind of sick, stomach etc. but then I have about a week of energy, then I can feel my levels dropping again. I too suffer still with unsteadiness, tingling feet and hands, vertigo, brain fog, exhaustion, stomach pain, muscle pain, eye blurriness, sore tongue…Don’t give up. They should be testing your levels often for the first year, or until your levels come up to the 500-600 range, then tested at least every 6 months (this according to my doctor and research).This is a lifetime condition for me so I am learning to deal with the good and not so good days.

  285. Cherie

    I just have a quick comment I have not seen anyone touch base on. I just got my b12 results less than 30. They said it would have taken years to get to this point. I am going in today for an injection. I have a child that is disabled. They have tested everything under the sun and could never find a cause or reason. She would not grow and was the size of a 7 month old at 18 months. I nursed her and was her only food source until she was one. Stopped nursing and she was on regular foods by 2. At 2 years old she suddenly started talking, walking and growing. She is now average size for her age but still suffers from neurological issues such as dizziness, balance and coordination problems, ataxia and seizures. I read a case study similar in a child who went into the emergency room with severe neurological symptoms and blood work was normal. The child was 18 months both nursing and on solids. They tested the mothers milk and found little to no traces of b12. After testing b12 specifically in the child they found this was the cause. Of u are pregnant or nursing or plan to become pregnant b12 should be tested and well within range. The effects can be severe and permanent in a child born to a b12 deficient mother.

  286. Chris

    Hi Cherie, WOW!! This is the first I have heard of this but it makes sense. I must have been healthy when I nursed cause my boys were always on the larger size, now 6’2″ and 6’3″ and built like tanks, not heavy, just built. They thrived as infants. My B12 level was 43 when I was diagnosed and I was told I could be in organ failure. I was also told it could take many years for my body to repair the damage done. I have been getting treatment for just about 2 years and my levels have been around 400. The doctor would like to see levels much higher. I get the shot every 3 weeks but feel my levels drop after 2 weeks. I get my physical tomorrow morning with labs. I will post my results. Good luck with your recovery.

  287. Chris

    My doctor is an Internist but she is also Board Certified in Pediatrics and is only accepting Ped patients now. I am going to tell her this so maybe they will start to test Mom’s of newborns that are nursing.

  288. ShaneLynn

    Hi all ,I am just totally confused! Back this time last year my B12 level was 290. I did shots for a couple months and my levels came up to around 1100. I had started to feel much better. The constant pain and burning and tingling was down to a couple times a month. I went off the shots because my doctor said I didn’t need them and started oral supplements. I also found out when I went off the B12 shots that I was very deficient in vitamin D. Well here I am again with the horrible pain and burning and it lasts all day and I cant sleep. I keep falling back to my thought that this cannot all be from vitamin deficiencies.

  289. nina

    My name is Nina I have had a b12 deficiency for about a yr and a half started low at 186 after a yr and a half it is now up to 546 i was told by my dr. the norm levels are supposed to be between 800-1100 I have even read that a lot. I am going in April for another check up on my blood work but I also have hypothyroidism! So I am not sure if all that goes together or not I also have chronic migraines and headaches as well as degenerate joint disease in my spine and now teeth problems. I am only 29 yrs old and yet a lot of health problems. does anyone think that all of this is connected together? oh did I mention 5 miscarriages as well…..

  290. Lynn

    Hi All,

    I had been having many of the same symptoms I here in this site for a long time. Headache, fatigue, lightheaded, concentration problems, tingling in hands. The doctor I saw at first just blamed it on anxiety and stress. After about 2 years, I saw a new doctor who finally tested by B12, it was 200. After 2 shots and being on 2000 mcg tablets a day, my level had gone up to 840 and I was feeling a lot better. I was told I could stop taking the tablets and only do the shot once a month. After about 3 weeks, my symptoms started to return. When my levels were retested my levels had gone down to 550. I am very confused. I had a shot a week ago and have felt funny…tired, sick, and a little jittery. Anyone experience this after a shot?

  291. HollyP

    Hi – I am 22 years old

    I have had all the tests going but the doctors do not know why I am deficient in B12

    My B12 level is 80 and I have just had a B12 shot and have to go back every 3 months

    I have been very anxious for a couple of years now, I cannot go out with friends or even have them round

    I cannot even go to the shop

    Would this be down to B12 deficiency

  292. Jenny

    Hi I was diagnosed with Iron Defiency apr 2011. then Pernicious Anemia with b12 at 120 the following year may 2012. The doctor started me out with weekly shots for 12 weeks and then moved me to bi-weekly shots. after about 12 more weeks I still feeling tired and having many weird symptoms diffuctly breathing, body jerks ect… I read on line about High dosages of sublingual b12. I started taking 5,000 mg everyday. I read that even with my Perncious anemia I may absorb about 1%. This has helped me greatly I know longer feel those dips between shots. I don’t know if all the nerve damage will ever heal still get these weird jerks from time to time but over all this combination of shots every two weeks and sublingual daily has made a huge difference. My last blood test I was on the high end– and thats were I plan to stay. Note: I still take Iron daily and I also have Hasmittos – Hypothyriod —

  293. Lisbeth

    I was diagnosed with B12 problems in Sept 2011. My mouth and tongue were burning and tingling I was generally miserable. My level was at 174. I have been taking weekly injections since then. Except when I was away in SE Asia for 3 weeks. I used oral B12. Does anyone know of a connection between taking Metformin and b12 defiencies?

  294. Su

    Since having my child followed by 5 years of unexplained vision problems, frozen shoulder, severe migraines, fatigue, numbness and tingling in fingers and face ….. finally, my b12 level was found to be 100.

    I am having the recommended course of 10 loading injections – 2 per week for 5 weeks – to hopefully get my life back.

    This condition has almost destroyed my home life, and so far the injections haven’t had the effect hoped for, but let’s see!

    Living in Holland, there is a very good website for information – only available currently in Dutch – but well worth a translation!

    http://stichtingb12tekort.nl/

    The recommended dosage and information for practitioners is also very informative. Questions can be sent in English – I have received very helpful information.

  295. Sarah

    This is wonderful to read. I am having all these symtoms. I had my B12 checked & my number was 244 BUT…my Dr. didn’t have me fast!! How much of a difference will that make & would my number be lower? My ferritan was 5 ~ iron 85. I had an infussion & 1 month later my ferritin is at 20 ~ iron 77. What is going on?

  296. Sam

    Hi Ive just had my blood results back and apparently my B12 is 156 the Doctors said it was boarder line and I will be retested in 2 months in the mean time she didnt give me any advise on what to do, I actually said to her shall I take a supplement. She said if it hadnt improved I would have to have injections every 3 months. Have I been advised correctly does any one know? Should I worry about this and I have had all the syms numbness, tiredness, etc.

    Thanks

  297. Diane

    Hello,
    I was told last week that I my B12 level was low (186), my iron level was low (7) & apparently I had the Epstein-Barr virus sometime in the past couple months. The doc said she wanted me to take a B12 shot every 2 weeks. I took the first shot last week & felt a little better. Four days after the shot I started having insomnia, pins & needles feeling in my hands & feet, joint pain & my heart was racing. I called the doc to see if I could take another shot. I was told by the nurse that it wasn’t a good idea because I didn’t want to overdose on it. I could no longer stand how I was feeling & took another shot last night. I was able to sleep, feel clear headed & have a little more energy & the pain is gone. I’m not sure if that was the right thing to do. I am still trying to get information on this whole thing.

  298. kole

    thank god l found this website after reading many of the comments i have been experiening many of the same symptoms for years. I have seen many doctors and they say everything is fine however my researh always proves otherwise. I had some extensive blood work done which was also a fight in 2012 and year later in 2013 . Test showed extremly low vitmin d levels and b12 levels below 400 . I have yet to find a doctor to a properly address this. Had a doc put me on vit d 2x week for 30 days treatment didnt do much he never followed up with blood work or refilld the script. I ask him about b12 shots he said i didnt need it. Most recent doc said the sttame thing. The problem with many docs is dont understand that there is a term called function levels. So if anybody knows of a doctor outside of the everything is ok club, piease let me know. I live in the new york city area i need to find a good doc and start taking those b12 shots ASAP.

  299. Terri

    Hi, I have a few questions if any one can answer them. I was diagnosed with pernicious anemia in July 2009, my B-12 at that time was in the 60′s. I have been taken injections every other week, for a period of time, then every week. My B-12 has NEVER gotten up to where it should be. 6 mths ago it was almost 300 so my Dr. Switched back o every other week. 2 weeks ago on my check up it s back down below 200 so I am again back the injections every week for 6 mths. I fill no different today than I did back in 2009. I do have tingling in my hands an feet, I am tired all the time, some days I have the shakes real bad. I asked my Dr. On this last visit, an I am seeing a hematologist/oncologist, if it was normal for my B-12 to go up an down an never get where it is suppose to. Are should he be running other test?

    Thanks

    Terri

  300. Kerry

    I’m a 17 year old female and have been diagnosed with b12 deficiency. I went to my doctor yesterday to talk about my CBC results to find out my b12 level is 66. She told me the lowest she has ever seen was 120, and my level is half of the lowest she has ever seen. That was a huge shock to me and it all makes sense now. I have been struggling with staying away due to extreme fatigue, I’m almost lethargic when I start to get tired in the middle of the day. It doesn’t matter how long I sleep, what I eat or drink, I’m still exhausted. I have issues with balance and have had some problems with eyesight. I’m lucky I haven’t experienced some of the very bad effects of b12 deficiency.

    I get my first b12 1000mg injection on June 13th. I have to continue to get them every week for 4 weeks, then I get them once a month until I run out of injection bottles. After that I have to take b12 supplements at 2000mg a day.

  301. Lel

    People who have not had this just do not understand it. I have been getting B12 injections every other week for the past 3 years. I had to do a lot of research to figure out what was going on, it was not an easy thing to get my Dr to understand. Even now, I tell my Dr when I think I need my levels checked, and we discuss and AGREE on treatment changes before they happen. I know (now) this been an issue for me most of my life. I think the hardest part for people to understand is that if you are not able to carry oxygen through your system it is debilitating, you are not just lazy. I recently was 3 days late in doing my shot and with everything I know and have read, I was so disoriented and confused I could not understand why I was feeling so bad. I am trying to work with a headache, and visibly shaking and feel winded just talking on the phone. If you are on injections or taking pills DO NOT STOP. If you are truly anemic you do not feel better an hour afterward. People ask me if the shots make me feel pepped up and if I have lots of energy afterward (even Dr’s will ask me this). No, I take them so I can stand up every morning and get a shower and go to work.
    For people who are looking for a provider, I have to say I have had good results seeing the Drs PA’s, they are often very conscientious and seem to be willing to hear suggestions. Who ever you are seeing, if you do not think they are taking you seriously, make a change.
    Your Dr will retire someday, Neuropathy will follow you around forever.

  302. Anne

    My symptoms became noticable after a stomach virus. One day my feet just went kind of numb and got very painful. My doctor told me twice to GO HOME and don’t worry about it – it was “probably” my back. Take a tranquilizer.
    I waited for things to get better for 3 months but by then, I could barely make it around the grocery store or my house. My feet hurt when walking and my legs burned.
    I found a neurologist by myself and he tested my B12 – it was way under 200. IBS and antibiotics from the stomach virus could have made it suddenly noticable in my feet.
    I have to get a shot once a week for a month and then every other week for 2 months. I am hoping that is the right thing to do. ?
    How will I keep it up once I stop the shots? Has anyone else experienced loss of feeling in feet with pain and cramped toes and feeling like they just can’t walk for long? Now my legs are weak and tremble very slightly. I really thought I had a horrible disease, but tested negative for and auto-immune diseases. Well, I pray that the shots work soon.
    Also, has anyone heard that long-term acid reducers (like Zantac) can cause low B12?
    Thanks, Anne

  303. Linda O'Connor

    Hi all,

    Have been diagnosed with pa recently have had a total of 16 injections since diagnosis one every 3 days . Some days after the injection I can do simple things around the house but the next day I feel bad again . I get really depressed as I feel there is no light at the end of the tunnel. It is the lightheadedness that hinders me the most. I am in bed most of the time. Has anyone else had this . Any advice would be gratefully received.

  304. Linda O'Connor

    I also meant to say this website has been a godsend. In the last year I have been treated 3 times for sinus infections and there were times I truly felt I was dying . Mt b12 levels tested at 70 which I now know are wat too low. Have spent the best part of the last year in bed, cannot drive or go out except for injections. And also taking iron supplement as levels were too low also. Since last July am also being treated for anxiety which I feel is a result of not knowing what was wrong. Does anyone know a time frame foe things to start turning around? This is a very isolating illness and I have found family and friends just don’t understand. Thank you all for sharing your experiences.

  305. Aimee

    Hi everyone, I see nobody has posted lately. This site has been a god send. In 2010 out of nowhere I started having panic attacks, which has now led to all day anxiety, muscle twitches, one over my eye for the last month, hair falling out in clumps, heart racing, dizziness, foggy head, just feeling weird, eye floaters, weak and tired. My doctor ran every test under the sun he said. Until a month ago I was so tired I wanted to die. My anxiety has taken over my life. He finally ran a B12 test and it came back at 240. My doctor said to take sublinguals. I went home and took one and had the worst anxious feeling ever about 2 hours later. My heart was racing, jolts through my legs. So I didn’t take it again until a week later and us enough the same thing happened. My doctor called me in injections to give at home but I’m deadly afraid to start taking them because of my reaction. I know in getting worse, but I don’t know what to do. Has anyone had this reaction and did it get better. Please help!!

  306. LIsa

    Hi, I’m glad I found this site – I was diagnosed with low B12 – 186 – a few weeks ago. I have had a shot every week since then. My dr said she will re-take blood after the 4th shot and then if the levels have improved, she’ll do 1 shot per month for 6 months.

    My symptoms have been the usual – short term memory, dizziness, balancing issues, easily fatigued, lethargic, depressed, difficulty in focusing, vision problems, hand, wrist and leg numbness/tingling, random incontinence, and I started almost blacking out during mild exercise (brisk walking). I thought I had carpal tunnel a few months back, I’m glad I don’t. I’m glad my dr. is giving shots…

    So far my joints have improved by about 80% – they still feel stiff and sore at times. My fatigue is still ever present. I wish I could wake up after a full nights sleep and feel refreshed! I used be an avid runner – doing 5Ks and running 3-5 miles several times a week. Now I can’t even walk that far.

    All of this probably caused me to lose a job earlier this year. I feel so helpless about this situation!

    I was a vegetarian for about 3-4 years, but am now eating meat to help with this issue if I know the farmer and can visit the farm to see the animals and how they are raised. Can’t stand the thought of contributing to the antibiotic resistance issue we have now due to factory farms, much less the cruelty of what occurs there.

  307. Ary

    WOW reading all the comments on this site was a great read. For awhile i been feeling a lil odd but lately its been worse I thought i was recently going to die. Well i told my doc i think i my b12 was low and she told me i was having panic attacks. well my blood result came back and my b12 is at 265 at the very low end from what she says. What is up with these docs not really looking into this instead of assuming its something else

  308. Neil

    Hi all.
    I also have PA and was diagnosed when my b12 count was 33.
    I will tell what i know and hopefully will help some others.
    Iam early fities and knew when I was mid thirties something was not right with my health.
    I was not the easiest person to live with as I was easily irritated by the seemingly smallest things.
    Going to the toilet was not a good experience. I was forgetful and as the years passed started to become confused, an example would be driving to work and ending up at the waterfront, wondering what the heck I was doing there. I had a few feinting experiences where i felt the blood drain from my head downwards.

    I started to lose the feelings in both feet and hands.
    Had the carpal tunnel treatment done and still the same.
    When my tongue and mouth became so red and sore i knew i had to find out what the problem was. I also had infected saliva glands. this went on for 6 months.
    Many doctors and dentists later i finally found a neuro professor who had full bloods done and diagnosed the b12 problem

    I had daily b12 injections for two weeks then every second day and so forth.
    Now I have a shot every three weeks and although I have permanent nerve damage to lower legs, feet and hands, I seem to be fairly healthy and enjoying life.

    After 3 weeks I know it is time to have another shot as I start to get a bit weird and also my eyes get a bit fuzzy.

    Hope this helps someone decide to get their b12 levels checked.

  309. sandra

    I went to the dr because I felt so tired all of the time and my legs and feet hurt all the time. The dr was concerned because my sense of smell is pretty much gone and I get headaches daily. During the exam my reflex in my knee was very over reactive. She did some blood work and sent me to a neurologist. She said the headaches, sense of smell, and reflex were all neurlogical problems. Tye neurologist did a lot of tests. When I went back he said my b12 was just over 300 (normal range) but my homocysteine level was extremely elevated so I was b12 deficient. I’m just starting treatment. I have most of the b12 deficient problems listed online- doesn’t seem like I should since my level is over 300.

  310. Mallory

    Im new here but as soon as I started reading everyones post I knew I was in the right place. Im 23 and in recent years have had issues with weakness, increasingly worsening restless sleep, anxiety, irritability, etc etc.

    In the last two-three months though it seems like everythings escalated. I havent been able to work cause i was getting so shakey and nauseous. I had symptoms I thought were stomach related (a solid month of very bad nausea) so after getting no where with my doctor I found a gastroenterologist on my own. He ran many tests and said short of a cat scan (which he didnt want to do because im so young) there was nothing he could find. So he said to find a primary care provider. I found one to try and she ran bloodwork which showed my b12 was 188. Her message to me :”your b12 is borderline low, take a supplement”. I was all set to just do as she said when I decided to google low b12 and found out how serious it can really be!

    Now I just need to find a dr who will treat it. So far it seems hopeless. But I’m so glad to find out I’m not crazy. So many drs want to write off everything on my anxiety. Which is extremely frustrating when I dont seem like I have anxiety outwardly (most of my friends dont even know) so it cant be that prominent!

    Im so glad I found other people like me!

  311. Mallory

    By the way, has anyone else had a low white blood count? Mine (tested when my b12 was) came back 3.3 but dr ignored it.

    Also, I was recently told hydrating better would help with my headaches so ive been drinking more. Now I cant go to sleep cause I have to pee so bad every 15 mins or so. I started drinking more on friday. And it hit me early early morning tuesday (kept waking up to go to the bathroom). Now its late tuesday night and its driving me mad! Is this a b12 thing too?

  312. Chris

    It has been a long time since I have written on this site. Neil, your level of 33 beat mine. I was a 43 and close to organ failure. I also have nerve damage in feet, legs, hands and also memory, concentration issues. I get a shot every 3 weeks and could even do every 2. I have yet to find a doctor that really understands how to treat this condition, “pernicious anemia”. I don’t have intrinsic factor in my stomach so I don’t absorb the B12. At the same time I was diagnosed with “PA” I found out I had a high calcium, high parathyroid level and low VIT D. They watched this for 3 years and finally found out I had a parathyroid adenoma (gland turned into a tumor)and I had it surgically removed a couple of days ago. I also found out my thyroid glands are shrivling up meaning I will become hypothyroid and need to take medication. Has anyone else had these issues?