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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Hello!
Could someone(s) please list what they feel are the symtoms of a B12 deficiency?
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
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.
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.
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.
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!
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.
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.
Hi Lori. 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
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,
Lori
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?
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.
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.
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!!!
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.
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.
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?
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.
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!!
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.
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.
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