B12 Symptoms
I’m sorry that I have been neglecting this blog. I have so many things I want to blog about, but there just aren’t enough hours in the day. I will try to get back to updating more often.
I had a reader comment asking if anyone could please list what they feel are the symptoms of B12 deficiency. I was thinking what a great idea. As many of you know there is the technical list of the B12 deficiency symptoms (you can read about them here and here) and then there are the real symptoms that many of us experience. They do not always match.
I know there are many of you out there reading, so why not leave a comment about the symptoms you had or are having. This will not be anything scientific, and as always you should see a doctor for medical advice and a diagnosis. You can post anonymously, it would just be a way to share what you have experienced and maybe let someone else learn from it. I’ll go leave the first comment to get it started. Now I know you are out there reading, so don’t be shy.
Some of my B12 deficiency symptoms were typical and some were not. I had tingling in my feet for quite some time. It did progress to my legs, hands and arms. My head felt fuzzy. I know it’s a vague description, but it’s the most accurate one. I sometimes felt like I wasn’t getting enough oxygen to my head/brain. At times it was hard for me to form words. I would have to stop and really think of what I wanted to say. My heart would pound constantly and became erratic at times. It would burn and hurt when I would pee (felt like a UTI), but they could find nothing wrong. Those are a few to get you all started. What are your symptoms?
I’ve been feeling very tired about past few months, though i’ve been sleeping 8 to 10 hours per night. During the day i often get “weak moments” when i just feel very powerless/faint… My hands and legs have been very tingley for a quite long time now,Lately I have been feeling some numbness too. It’s very hard for me to concentrate and i feel anxious all the time. I’ve had problem of forming right words too. Sometimes i find myself making up some words because i can’t find the word i’m looking for, it gets really frustrating at times. I’m going to have my blood test taken next week. I’m really scared that i’ve made myself sick because of my diet (vegan). And the fact that,if i have B12, i’d have to continue the treatments rest of my life really freaks me out because i’m only 19.
I am so happy to have found this site. I was diagnosed last week with B12 and Vit D deficiency and as crazy as it sounds, I am glad to have finally figured out what was going on!! I had been to a number of drs and had a variety of tests done with everything coming back as normal, but I felt off and knew something just wasn’t right. I have had the same frustrating issues with not being able to find simple words, muscle ache, mood swings and I have felt like someone has been sitting on my chest for months! I also suffer from a mild continuous headache on my left side. Fortunately for me, I am always on the go, and I did not realize that my body was feeling the fatigue–somehow I was able to push through most of the time.
I went for my first shot today and will continue weekly for the next month and then go from there. I am waiting to see how long it takes for everything to “kick in” and some of the aches to subside.
Thank you so much for all of the information. I have learned more from reading this blog than I have from my Dr and finally know that all of my symptoms were not just in my head!
Michelle,
I’m so glad that my blog was able to help you! I know how wonderful it feels to finally get a diagnosis, and you may not believe it now but be thankful it’s B12 deficiency. With all the things they probably thought it could be I’d bet this is the best outcome by far. It will take a while for you to start to feel better, and it is usually a gradual thing so give it a little time. In a few months you will feel better and a year from now will be a new person!
Thanks for commenting!
I was diagnosed with B12 anemia 7 yrs ago and at that time I needed infusions 3 times a week wo bring my counts up as well as B12 injections. I take perscription iron daily and was getting B12 injections monthly. I moved to a different state a year ago and got a new doctor who cut my iron pill to 1 daily, I was taking 3 and says I only need injections every 3 months. Lately I have noticed that my feet are a dusky blue and tingling again and I’m not sure that my doctor is on top of this. I was told at the time of my diagnosis that I also had neuropathy which has affected my balance, my memory, I have confusion and the feet issue. I live is the southern coastal part of NC does anybody know a good doctor in this area
For the past year and a half I have been extremely tired, even after sleeping 7 to 8 hours. it was very difficult for me to fall asleep, and when I did, i would only sleep for a few hours at a time if I didnt take a sleeping aid. Ive had blood tests, sleep studies, etc. You name it, I had it tested. it finally occured to my doctor to test my B12 level. Well today I went for my resuls, and it turned out I have an extreme b12 deficiency.
My hand and feet have been a little tingley for a few months, but I just thought it was from lack of activity (Due to being so fatigued) But, my docotr went over some of the symptoms with me, and now a lot of things finally make sense.
Hi
Great site and very informative. I don’t know if you have posted anything about this, but a big “beware.” Make sure B12 is tested BEFORE having lab work performed, or if after, at least a couple of weeks. My doctor gave me a B12 injection, then ran the labs just fifteen minutes later. My level went from 187 to 2000! It rendered the test along with Methymalonic Acid and Homocysteine useless. And if you are dealing with an MD who does not accept that the shot will immediately make levels falsely rise, you’re screwed. Of course my symptoms are awful and outweigh everything, and 187 is low enough for me to supplement. Thanks again, all the best.
Jane,
You are absolutely correct. It is so important to have everything tested before you take any supplements or shots. My doctor made me wait a week the first time to be sure my levels were tested properly and the results were all in. Thanks for sharing and reading my blog. I hope that you feel better soon!
Hi,
Thanks very much for providing info here and to add our comments…its a real sifting process to get to the heart of understanding some info in the medical and internet world…congratulations for the clarifications, I have found them all useful and confirming some of what I know about anaemia & b12 deficiency.
I have most likely for many many years without knowing had symptoms of deficiency that are anaemia and b12 deficiencies but have ploughed on. In Nov 2007, almost two and a half years ago I underwent major surgery resulting in removal of one ovary, 60% removal of large bowel and removal of a third of small bowel..major it has been.
It has only been this year about two months ago that I undertook a blood test count to check what was going on because I’ve had so many problems post surgery its been ridiculous to say the least.
This year I had extreme dizziness, fatigue, lethargy, weakness, imbalances to walk or stand especially when getting out of bed or from sitting, haziness in the brain like brain fog, word association mixed up and loss of memory and frequent memory blanks, unable to read & comprehend, exhaustion, high levels of anxiety, sensitive to many environments & people, erratic energy, emotional outbursts & mood swings, intolerant to many people & busy environments, impatient, hot flushes, tingles like pins & needles, cycles of depression, suicidal at the lows of depression, a few restless nights, a few bad dreams, falling asleep sometimes takes a while…the list is many and it would not alone be just the anemia and b12 deficiency it is combined with so much else I have going on pain wise from the surgery that its a strong link presenting in many various ways.
The initial intakes of many nutritional medicines that I am now on as a program protocol till my next blood test have been helpful. The first three weeks I felt powered up and as though nothing happened, it was amazing…now its two months on into the intakes and I’ve have ups and downs again with the mix of different symptoms present but nowhere as extreme as they were. The only thing I have had seem strong are falling asleep easily and some more bad dreams, hot flushes of anxiety and lows of depression and even suicidal thoughts.
I realise after such surgery and many parts of my organs removed that it is compromised to absorption and digestion however the nutritional medicine does enormously help and stabilise me. Perhaps I’ll need for the remainder of my life and tweeked according to my blood tests.
I certainly look forward to my next blood tests count to check the levels and confirm changes.
Here was another site I discovered very useful about pernicious anaemia & Vit b12..with foods listed and much more that could be helpful for readers.
HI THERE,I WAS GIVEN MY FIRST SHOT BY MY DOC AFTER HE TOLD ME I WAS UNABLE TO ABSORB B12,I HAVE TO HAVE 3 NEXT WEEK,THEN ONE EVERY MONTH FOR THE REST OF MY LIFE.I HAD SEEN HIM 2 WEEKS PRIOR TO THIS AS I FELT SO TIRED,NO MOTIVATION,DIFFICULTIES SLEEPING,EXHAUSTED DURING THE DAY,GAINED WEIGHT IN A SHORT TIME,NUMBNESS ON THE OUTER SIDE OF EACH BIG TOE,MOODY,IRRITABLE,DEPRESSED EVEN THOUGH I ALREADY TAKE PROZAC,PUFFY FACE,EXCESSIVE SWEATING,BAGS UNDER MY EYES,TO NAME JUST A FEW,I THOUGHT HE WAS GOING TO TELL ME I HAD AN UNDER ACTIVE THYROID BUT IT TURNED OUT TO BE THE B12 THING,IVE HEARD THAT THIS VITAMIN HAS TO DO WITH THE METABOLISM ,IM HOPING IT WAY KICK MINE BACK IN TO SHAPE AS IV BEEN TRYING TO LOOSE WEIGHT AND IT HASNT SHIFTED NO MATTER WHAT I HAVE DONE.
I have all of Ero’s symptoms plus I can not lift my feet or legs I drag them I live with pain so aweful…. I sleep sitting up….My spine cells are demylenated…. I was diagnosed with Alzheimers and MS this past Jan …BUT THEY WERE WRONG!!! I have pernicious anemia.. I have charlie horses/spasms all over my entire body crippling really, I have hyper reflexia all over also disturbing I can not bend my toes.. I forget stuff PERIOD!!! I walk into a room and to get something I dont think hey why did i come in here? No I say oh look the beds not made..totally forget that i had an initiative at all.. happens all day long….. Now I give myself an injection with a 1 1/2 in needle once a week into deep muscle of B12 1000mg’s…24 shots as of yesterday they last about 5 days so I have 2 very cold sad numbing days with extra forgetfullness then 5 great ones Did I mention how unbarably cold I am all the time.. I prefer it to be 90 or above but no one else likes it.. Of all the symptoms I do not have blindness… The hospital is putting me in a journal I still hold down 3 jobs even tho they had never seen levels as low as mine.. I live with post-it notes.. things like Did you eat? Today is friday.. Your live at ….etc etc My cell phone is pretty fancy too alarms go off all day to either take a pill or to tell me where I should be at this time of day! My punctuation and ability to grasp words sucks too I live by a dictionary and a thesaurus on my desktop.. I used to win spelling bee’s as a kid Now I am lucky if I make it to the bathroom because…. I FORGET TO GO!!! I am 53 and I “look” great so I think the most dificult thing for me is People just can not understand it… WTF I FORGOT OK and NO I will never remember it even if it was just 10 minutes ago OK!!! Thanks I needed that!
I’m just tired of feeling soooo horrible, all the aches, pains, feeling like I’m a zombie. I can’t even have a good relationship w/my kids or man because I’m sooo tired and irritable. Sometimes even other’s kindness just drives me to blow up. I just can’t stand myself. When I’m down I do feel suicidal, I feel like a horrible person. It really affects wrk, I’ve had 7 jobs in the last 14 yrs. It took me 5 yrs almost to get an associates degree and I feel like I haven’t learned a thing. I cry all the time. But after reading this, I’m glad to know I’m not the only one. I’ve been getting these shots a lot and then my levels are good so they stop the in a few months things start all over again! My mom wants me to come and help her do some housewrk, and I’m like hang I can barely take care of my own house! Thanks for letting me breath!!
My name is Christa. I have been diagnosed with low B12 levels and have been talking shots. My question is: after an injection, how long do I need to wait until I get my B12 level checked? I want it to be accurate.
During my weekly shots, I started to feel better about week 3. After week 4, I changed to monthly shots. I started feeling bad again. It has been 6 months.
Thanks. Christa.
Just thought I would add one symptom I just discovered. For the past five years seamingly out of the blue I have been getting pregnant after 12 years of nothing.
I just figured out that these pregnancies all occured within a month of my mom giving me a B12 shot.
How about that! I have been putting on all my medical histories my entire life that my Mother has Pernicious Anemia and my great grandmother died from complications of Pernicious anemia, but none of my doctors ever bothered to check and see if that might be the reason for the hand and feet neuropathy or the loss of memmory or the horrible hip pain or the loss of balance or the IBS or the inability to ovulate my whole life, etc.
Nope I had to put it together after misscarrying 3 babies, giving birth to one at 30 weeks and now finding myself mysteriously pregnant again.
The only common thread in all these pregnancies was that my mom insisted in giving me a B12 shot about a month before concieving each one.
By the way, eventhough I am pregnant all my systoms have disappeared now with weekly shots except the IBS. I think the damage to my intestines is sever enough that will take a while if it gets better at all.
to melissa (comment November 2010) Im glad that you have commented on your feelings as I have had exactly the same emotions and experiences as yourself.I began with anxiety/depressive symptoms in august last year, something completely alien to me and which left me extremely confused. i was also experiencing pins and needles, a burning sensation all over, headaches, blurred vision, loss of balance,and stomache problems to name but a few. after hearing about someone who had recently been diagnosed with b12 deficiency, and as i work in a gp surgery i decided to get my level checked. It was 107. I had no signs of anemia. three different drs sent me away and eventually it took ME telling THEM i needed to be started on the injections. I then researched on the internet and found a gp not far from where I live who specialises in b12 and moved to his practice. thank god that i did as i have no doubt id be in a far worse situation than i am now if i hadnt. My gp insists that it is gps ignorance and lack of knowledge that prevents people from being diagnosed with this condition. furthermore he insists pharmaceutical companys who fail to benefit from people getting these injections have a lot to answer for!. Its disgusting that peoples wellbeing is put after money. typical of todays society! I still do not feel 100% myself but have been told this will take time as my level was so low.I hope everyone is doing ok
Feb 2011 now and my memory is “better” except now I can not always get to a bathroom on time..first it was pee..now its well lets say somedays I am afraid to leave my house … I can no longer work…
Trying to get disability…
The only good thing ( if sticking a long ass needle into yourself can be good in anyway) is I do my shot in half doses twice a week no more really sad days… been a long time now.. I used to keep track on facebook but now that they changed that format I have no idea how many shots I have had… I also have autonomic hyperreflexia…. look it up…this is what happens when STUPID doctors wont test your blood for b12 deficiency..why??? Because ITS EXPENSIVE!!!! Thanks alot.. Now I am ruined….forever!
I do not know where to even start with my crazy B12 story but here are the symptoms I felt while I was continuously misdiagnosed in an awful HMO system:
-Tingling in forehead between my eyes
-Burning facial sinus cavaities
-Continuous high resting pulse (over 100+ bpm)
-Stirring feeling in my chest
-Tingling in the bottoms of both feet and legs
-Feeling a vibration/buzzing feeling from base of head down my spine across my hips & down my legs when lying down
-Burning feeling sometimes when urinating but not a UTI
-Intermittent explosive diarrhea
-Vision shifted-all of the sudden my nose was in my peripheral vision when looking forward
-Neck lost natural curvature and is stick straight (discovered by x-ray)
-Big toenail kept on cracking horizontally (over the course of a year and a half)
-Lightheaded/spacey feeling
-Unsteady on feet sometimes
-Unexplained rash on neck
-Contact lenses became uncomfortable to wear
-Depression/apathy/mood swings – not like me at all
I have been receiving B12 shots now for almost five months and taking sub-lingual B12 tablets in-between my now monthly shots to help my healing process. The two main symptoms I am still dealing with is the vibration/buzzing feeling down my neck, spine, and legs and the high resting heart rate. I sometimes struggle to remain positive and hopeful that those sensations I am still feeling will disappear too. I am starting to get really worried they won’t heal as time goes on under B12 therapy and it is still there. I am 37 year old mom who was active and healthy until all of these symptoms started appearing around October 2009.
I too have a B12 and D deficency (B12 #152) and it has been shear hell…The symptoms are as many have stated, light headed (almost as if on an elevator that moves very fast), headaches, burning sensation in my forehead and face, hard time breathing, tingling in my hands and feet, brain fog, SLEEPY, my spine is always sore, heart palpatations, insonmia, anxious, moody, LOW blood pressure (54/60) Low heart rate (52 bmp). I started daily injections 1 week ago and I still dont feel any different, now I go to weekly shots for 4 weeks then once per month after that. I had my colon and large intsetines removed 3 years ago and I guess they finally decided to test me for low B12 levels.I am praying for a speedy recovery from this and that my life will get back to normal soon…I am just so happy to know that I am not the only one that goes thru this..(I started to wonder if it was just in my head)..
Hello my daughter is now 18 and was diagnosed with celiac disease and B12 deficiency when she was 14. Her small intestine was so damaged from her exposure to gluten (found in wheat barley oats rye spelt and kamut)that she became B12 deficient. She started receiving methylcobalamin at our Functional medicine MD’s office. She felt much better quickly but then we started using cyanocobalamin at home. These are both injected. I am a nurse and was able to give my daughter her shots. She later learned to do it herself injecting in her thigh. However we found that she has always felt better if she used the cyanocobalamin once weekly (1000 mcgs). I read that others have found this to be so as well. Our doctor was willing to prescribe for weekly shots. Its been four years now of cyanocobalamin and my daughter is still suffering with poor sleep,effected vision, racing heart, intermittent depression,and feeling exhausted all of the time. So I recently investigated the difference between cyanocobalamin and methylcobalamin. I have been reading that the cyanocobalamin is not effective for neurologic symptoms of B12 deficiency.So my daughter is now using methylcobalamin only. Our doctor faxed her RX to Key pharmacy in Washington State it will cost about 5 dollars per shot but we are hoping that this will make the difference for my daughter. This is a very difficult disease to live with. Her doctor actually diagnosed her with Lyme disease do to her not responding to treatment of B12 shots. We are thinking that the cyanocobalamin was simply not being utilized as she needed it to be. Please read about the differences between cobalamins there are many studies to show methylcobalamin is superior.
Hi there! Recently been advised that I am B12 deficent and possibly have Blind Loop Syndrome. I have degenerative disc disease in my neck and have been on a Fentanyl patch for almost a year when all of a sudden began to lose a lot of weight (35 lbs) in a short period and was so very exhusted all the time. Doctor originally put it down towards the Fentanyl patch with is a very strong pain medication. It made sense at the time but I just knew there was something more as I had been on the patch for awhile without feeling like I could drop at any moment. After some blood work it seems that I was very B12 deficent and was put on supplements. I am going to see the doctor again today as I am still extremely fatigued, forgetfull, lack focus and sometimes confused by words. This is not like me. Can someone comment on how long it takes for the supplements to take effect? Not sure how much longer I can function like this on a regular basis!
Zoe,
In regards to your B12 treatment, unfortunately it usually takes a while before you feel better. But as long as you are getting the proper doses in the proper form your B12 levels will rise and you will gradually start to feel better. I’m sorry to hear you have other things going on with your health as well. Hang in there!
Lori,
I stumbled across your site searching for information about B12 deficiency. I am 32 years old. In the past 6 months, I have become tired (to the point of being able to lay down on the couch at any point of the day and falling asleep) and somewhat depressed. I have had hair loss, cracked lips at the corners, flaky skin around the sides of my nose, tingling in hands and feet at one point but it subsided, acid reflux (during pregnancy and since my daughter’s birth 2 years ago), foggy memory, and dizziness sometimes. After feeling so run down for months, I went to my gynecologist’s office and asked her to run every blood test imaginable. My level came back at 247. I have an appointment with a general family doctor, but I’m concerned that my insurance won’t pay for the shots. I would to like to find out how you were diagnosed officially with B12 anemia? Thanks so much for this site. It is helpful to read this information without having to interpret medical jargon.
Bethany,
Remember, I’m not a doctor so you always need to get a professional opinion. That said I’m happy to share what I’ve experienced. First you need to be sure your doctor knows that a level of 247 is not acceptable (unfortunately many doctors are not familiar with B12 deficiency and use 200 as the level they judge deficiency by; doctors who understand the severity of this condition feel if you are under 400 you are deficient). Once you find the right doctor, they will do a whole bunch of other tests to see if they can find the cause of the B12 deficiency and to make sure there isn’t anything else going on with you. Many times they don’t find the cause of the deficiency and that’s ok, as long as you are being treated properly for the deficiency. Don’t start taking any vitamins until the doctor gives you the ok, it will mess up your test results.
Unfortunately many insurances do not cover the shots. My last insurance did not, but my new insurance covers some of it. In my case my husband gives me my shot every other week, so I don’t know how it works if you get your shot at the doctors office. For me, my doctor prescribes the B12 and the needles. I happened to fill my prescription today and it was about $15.00 for the bottle of B12, enough for 10 shots, and that was without insurance paying anything. For 25 syringes it was $11.99 and it doesn’t look like anything was covered by my insurance on them either. The syringes will last me about a year, and the B12 five months. While it stinks if you have to pay for it, the cost is relatively low.
I hope you are able to feel better soon, good luck!
vinnie
I was 35years old when I notice something was wrong .I used to be in terrible pain in my legs. I nearly sleep all day and night unless my husband or the children come and shake me up to get up struggling to do any house work feeling very tired. i blame it because We moved to another house. ONE day I took my daughter to the doctor for something, and while I WAS there I ask him if he give me something for my sinus because I felt like my eyes want to close’. he test my eyes etc etc and then he said I will give you some tablets but he said be careful because they will make you sleep’ I said you have to be kidding .I sleep all day. so he sent me straight to have blood test where I found out what cause all the trouble the doctor found I had pernicious anema so He start give me these injections of B12 and some iron injections until my body back to normal .so I be having the B12injections for about thirty years. and I feel very good . no more sleeping all day I was very lucky Iwas close to be in a coma.
Just found your blog and find it so helpful. I really thought I was just over the hill at 67. Usually I have high energy but for the past 2 yrs I just fizzle out way to soon. Kept asking to have thyroid cked. Came back within range. D was low but within range. Hair thinning over past two yrs so badly so keep asking for TSH test and they are within range. So was actually relieved when B12 came back in range but very low end. Just had 1st shot. Ferritin also low so have to take SoFe also. I am hoping this does the trick before I am too old to care. Does anyone else have hair thinning issues?
I was diagnosed with severe pernicious anemia last year at 35. I almost died! My blood count was 5 and my hematologist told me I had the largest red blood cells he’d ever seen. I was hospitalized for a week receiving 3 blood transfusions and daily b12 shots for 2 weeks. After 3 years of feeling like I was slowly dying of poison and going crazy. My symptoms were misdiagnosed by four separate “specialist”. It all started three years ago, I had spontaneous diarrhea several times a day accompanied with the inability to hold down food (for this I was diagnosed with IBS and GERD, I went to a Gastro doctor who performed 3 separate anesthesia procedures- upper, lower endoscopy, and colonoscopy and prescribed five different medications, which made the symptoms worsen). I couldn’t walk up stairs, by the time I got to the top my chest felt like I swallowed a brick and I couldn’t catch my breath (for this I was misdiagnosed with asthma, my primary physician prescribed Singular and Advair-didn’t help a bit). I had fainting spells especially in the shower (for this I was prescribed anti-anxiety drug Prozac). I started to urinate on myself and couldn’t control my bowels (for this I was misdiagnosed as inconstinence, my GYN said I should exercise my pelvis muscles) This one was the worst, sex. After an orgasm, I would get a sick of poisoning- almost cost me my marriage. I could hear my heart beat in my ears (I went to see a cardiologist) I was given a stress test and wore a monitor for a day to record my heart rhythms. ALL these symptoms were directly related to severe anemia. NOT 1 doctor took my blood for three years. When I literally crawled into my primary doctors office and told her that none of the specialist healed me, she for the 5th time tried to give me anti-depressants and told me I was aging. She ran blood test and called and told me my iron was low and my blood count was 7, she prescribed IRON pills and referred me back to the Gastro doctor (who also basically told me I was crazy because she couldn’t find anything wrong with me but wanted to do another anesthesia induced test). After 2 weeks wait for appointment, I went to see the Gastro doctor, told her my blood count and she sent me in for a blood transfusion- still undiagnosed. When I went to the hospital the day before my transfusion for blood work, I had to be wheeled in because I was very sick. When they received my test results after I left the hospital, the hospital called my cell phone to come back immediately- I was critical, my blood count was 5! I was admitted on Monday and they didn’t diagnose me until Wednesday. The nurses kept asking my where my blood went!??? The attending physican had to wait because they tranfused me before knowing what was wrong in the first place (they didn’t test the blood from earlier). Anyway, all of the symptoms are gone except now but I have neurological damage from being sick for so long. Blood is needed for every body function, because my blood was so low it caused my body to mimic other diseases. The worse was sex, all the blood rushes and my body is left numb and weak. To walk, my heart works harder but there was no blood, to digest food was hard work on my body because again, my blood was too low. No diarrhea no GERD, no asthma. The one problem I have is pain in my legs and the inability to remember simple things like my daughters name and birthday. Pernicious Anemia ran in my family and I didn’t know it, medical history questionnaires don’t ask that question.
Hi
Over the past 4 years I have had 2 tests for b12 anemia
( just the uk NHS standard test). They both came back around 248 and GP ( doctor) says thats fine. I was taking a wellwoman multi vitamin at the time that contained Vit b12, folic acid and iron. My Dad, his mother and his 3 sisters and 2 of my sisters suffer from B12 anemia and receive injections to address. I think my doctor thinks I just want to join their club or something …. when really I just want an answer!
From birth I have always suffered from stomach problems and struggled to digest food. in more recent years I have tingling in fingers ( they often are wrinkled like I have been in the bath for a long time). I get regular headaches, hotflushes, swollen glands. My sleep pattern is poor and I am always tired. I often just zone out and I am unaware of how much time has passed. Approx every 2 days I get a very sore toungue at the side and towards the back of my mouth. I also have some hair loss and find it difficult to remember things.
At the age OF 40 I have just been diaganosed with asthema and rhinitus.
I have heard the UK’s – standard NHS- b12 test is not reliable?
What test should I ask for?
Is there any information I can quote or refer my GP to that might encourage him to carry out further tests?
all the very best
Tilly
I was just diagnosed 2 days ago. My level was 211. I was driven to the doctor by extreme episodes of muscle weakness that mimicked my blood sugar dropping. A vitamin D deficiency also was discovered, apparently pretty severe. I just received my first B-12 shot. Today I carried on an hour conversation and actually used intelligent language. Something I hadn’t been able to do for awhile but I thought I was developing dementia. I’m 52. I do have a question. I haven’t received my results yet for the anemia but I’m curious as to whether anyone has a problem with bloating and abdominal pain. I feel like my stomach is in spasms and that there’s a 30 lb weight in my abdomen. I also ache and hurt in my stomach. I also have been experiencing diarrhea and constipation. From one extreme to the other, lol. At this point I’m not sure what symptoms I can relate to what deficiency. Just praying I start feeling better soon.
Hello,
I am a 30 year old female.
I became aware of my B12 deficiency as a result of going to the doctors for rectal bleeding. My B12 came back at 140 and my ferritin 11. My doctor responded that everyone is B12 deficient and laughed at my concern! I asked for the injections and requested testing to find out the cause…she granted me the injections, but said any additional testing was not necessary! Considering I am not a vegan, eat a balanced diet which includes meat, dairy, and fish…I think it is.
Anyway, this diagnosis explained many symptoms I had/have been experiencing for 3-4 years including:
Diarrhea
Fatigue
Depression
Insomnia
Anxiety
Tingling in toe and fingers
Headaches
Increase in migraines
Dry,raw cracking around nose
Cracking at corners of mouth
Sore tongue/mouth (thought I had thrush and had treated myself for it on several occasions; it was the only thing I knew of that caused these symptoms)
Muscle cramping in feet (like Charlie Horse)
Pain in hips
Weight gain, no matter what I do
I subsequently was diagnosed with a vitamin D deficiency as well, for which I take a purified cod liver oil supplement for.
For my B12 I had 4 weekly injections combined with daily sublingual 5000mcg supplements. My B12 is now at 512 and have been put on a maintenance dosage (1000mcg sublingual daily) to see how that goes.
I also forgot to mention in my list of symtoms: irritability
Confusion
Disorientation
Forgetful
Lethargy
I was put on antidepressants 2 years ago and they helped a bit, but then even though I was fatigued and lethargic most of the day, when it came time for bed I either couldn’t get to sleep or couldn’t stay asleep; so then I was prescribed a sedative.
Looking back now, I realize all these symptoms were/are likely due to my B12 deficiency! Though my levels are back to normal (acquired in 5 weeks) I know this is level may be difficult to maintain and the physical and neurological affects of the deficiency may linger for a while.
Laura,
While I am very happy that you have been diagnosed, I am still concerned for you. I don’t usually do this, but it will be easier to bullet point some things you really need to be aware of.
• Any doctor that would laugh at a B12 level of 140 has no idea what B12 deficiency is all about and shouldn’t be treating you. Period. Anything under 400 should be of concern.
• There is no way that your B12 levels are back to normal after just 4 injections. Any doctor that knows about B12 will tell you that once you start treatment with shots you will never be able to tell your true levels.
• Even if by some miracle your doctor was able to get an accurate reading of your B12 level, 512 is not grounds to put someone on maintenance. Your doctor should want you to have a B12 level of at least 800 before any type of maintenance is discussed.
When you inject the B12 into your system it raises your levels when tested, but that does not mean that your body has absorbed enough B12 to make those levels accurate. Depending on how long you have been deficient, it can take years for your body to fully recover. It is possible that your cause of B12 deficiency is pernicious anemia (which is what I have) which means that you have no intrinsic factor to carry the B12 thru your body. If this is the case, sublinguals will most likely not be enough. Your body will not be able to heal, and you will most likely become deficient again.
It is really important that you become proactive about your health and find a doctor that takes this seriously. Any delay in proper treatment is a mistake. The longer your body is lacking B12, the harder it will be for you to recover. If your current doctor is not willing to give you the shots then don’t be afraid to get another doctor. You need to get proper treatment as soon as possible.
Good luck, hope you feel better soon!
First I want to thank you for this great website. I am a 35 year old white woman who has recently learned that I have a low B12 level of 202 (lab scale of 211-946). Reason I found this out was by a fluke. I had been in to see the Nurse Practioner from my Dr. offie and had some labs drawn for a completely different reason (gynecological). Dr office called me on the Friday before Christmas and left a message “they wanted to discuss my lab results with me”. After missing the call and waiting all afternoon for a callback I learn that I am “just” vitamin B12 deficient and they want me to start taking an otc supplement. Okie dokie, sounds good to me.
So after doing a little research, I start to wonder WHY am I B12 deficient as I am by no means vegan and we certainly eat plenty of animal products in this household. So I put a message in to my Dr that I just have a few questions, could someone call me back. 2 days later the actual MD. from my office calls me back, looks at my chart, calls me abnormal, rare, and odd (not too surprising for me LOL), and tells me to stop taking the supplement and he wants to do some follow-up labs on me. Okie dokie.
Sooo, make another appointment, get in with the Nurse Practioner again. This was yesterday. Left her with no further labs, and the instructions again to just take the supplement for 3 months and come back!
I guess my main concern is that she gave me the brush off. Do you think it’s ok to wait the 3 months or do you think I should push it and try to get back in sooner?
Not sure how ‘severe’ my deficiency is, but I do have fatigue, my hands shake all the time, I feel in a mental fog (just not sharp like I used to) and breathlessness just sitting here typing this out.
I am also concerned bc I am bi-polar. For the last 2 years, after really no symptoms for almost a decade, I started have ‘trouble’ again with my bipolar. I am starting to think that is actually related to this deficiency.
I’d like to get some relief as soon as I can of course and start on the road to recovery.
Thanks
Diane,
I would ask to speak directly to your doctor and see what course of action he would take. I definitely wouldn’t wait 3 months. I would want to be getting a minimum of a shot a week for 6-8 weeks (if he wants you to get more, even better). If he isn’t in agreement, I wouldn’t waste anymore time there. When it comes to B12 deficiency many doctors don’t take it seriously and you may need to go thru a few doctors before you find the right one. I can’t stress enough that the sooner you get the proper treatment the better.
Good Luck!