Hi I would like some advice about B12 deficiency. In October 2018 my B12 was 267. My doctor said this was okay so I didn’t supplement but then I started getting more symptoms of dizziness, severe dry eyes at night, 3 episodes of double vision and dizziness especially when standing up from bending over. I started taking oral supplements 2019 and when re-tested in August 2019 my vitamin B 12 was 913 so I ceased taking it. I suffer with fibromyalgia so do you get lots of unusual symptoms so it is hard to differentiate between that and other causes. But lately I have been unable to bend over and stand up without feeling short of breath and dizzy. I have planter fasciitis and bone marrow oedema in my foot but I am sure the stabbing pain I get in my heel maybe neuropathy. Lately I have had a tickling cough on and off and have been wheezing. My upper body pain especially back and shoulder blades has been dreadful and also I’ve had chest pain. My chest palpitations are also much worse. I do have atrial tachycardia but have never had to take medication for it but it seems to of got a lot worse lately. I’ve noticed that I’m far more clumsy lately constantly hitting walls etc. I’ve also noticed I’m sweating On my back during the day and I often wake up clammy on my back and chest. I have just started taking 2000mg of oral Adenosyl/hydroxy b12 as I don’t tolerate methyl b12 and my shortness of breath seems already improved. I’m also extremely low in zinc even though I take it I’m one under the reference range. My mum had Pernicious anaemia but I was tested for over a year ago and didn’t have it. My MCV on my full-blood evaluation is Usually a couple of points above the reference range 80-96 mine Is usually 97 or 98. Interestingly enough I just had this done again while on the B12 and is it gone down to 94. Should I get an MMA test done. Or what other tests would be useful in diagnosing a B12 deficiency thanks very much.
Just as an addition to my post a few minutes ago another symptom I have is waking up with numb hands in the morning
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Tempe1
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I wrote a very detailed reply with lots of links to b12 books, B12 websites, UK B12 documents and other B12 info eg symptoms, causes etc. I'm sure there'll be something useful in it for you to read.
I was immediately alerted when you wrote “ My Mum had Pernicious Anaemia, but I was tested for it over a year ago , and didn’t have it “ That test -the Intrinsic Factor Antibody Test - is notoriously inaccurate when it comes up negative.- about 50% so. Also P.A. has a definite genetic link .With your symptoms , P.A. is a possibility. Yes , some of your symptoms can be attributed to other causes, but the treatment for P.A. - B12 injections is totally harmless and cheap. So do try to get B12 injections . I know it’s hard to get them if the test reads negative, but if your doctor is intelligent, he/she might know about this possibility . If you have PA, only injections will really help properly . Low b12 ( and folate ) leads to high homocysteine readings - another indication . How are your folic acid readings? Folic acid acts together synergistically with B12. So you need to make sure you get plenty . In food it’s called folate , green leafy vegetables, peas etc - look them up. Or take a 400mcg tablet ( like expectant mothers are recommended);
Taking B12 orally can help a tiny bit , even with PA , as B12 can be absorbed ( about 1% ) by way of the ileum . But it will not suffice if you have P.A.
You’ve had some good help from Sleepy Bunny , so you’ve a lot to take in . Very best wishes ,
I'm confused - I thought if the serum B12 went up well with oral/sublingual then absorption ok and therefore not PA? (Not talking here about whether it is actually getting into cells). Thanks
Yes -that’s the important bit -getting into the cells . I can only speak from my own experience. I had many symptoms of B12 deficiency, and took no end of oral supplements of B12 including sub-linguals ,and patches to no real avail . Had to go to a private doctor in desperation, as my own GP said there was nothing wrong with my blood tests. I had achieved a high B12 reading , but I tested positive for intrinsic factor antibodies ,so I had P.A. Subsequent injections got rid of most symptoms . ( not all as I had been deficient for a long time ) I didn’t actually know then that one should have a period of weeks without B12 supplementation before having the IFAB test .
P.A. is a poorly researched subject . There are so many different symptoms ,some of which coincide with other conditions . It seems to me that a lot of us have to find our own way through the maze . I have had to resort to self-injecting , as my GP would only let me have 1 injection every 3 months ,which was nowhere near enough .
Thank you for your reply. Sometimes I seem to just go round in circles. I am certain that B12 has not been getting into the cells, but am unsure whether worsening symptoms are 'improvement' because I am now getting more B12 or just straight worsening because it is either not enough or not getting in at all! I had a negative IFAb and also didn't know that I should have been off supplementation but fbirder said that the interference would be a false positive if B12 were too high, so wouldn't have caused my negative. I am hoping that my fairly new neurologist, who seems extremely good, will have some ideas from my signs and symptoms (whilst not getting my hopes up too much, from previous consultant experiences). He did at least not laugh at the mention of the family history of B12D and PA, and acknowledged my vitiligo could be connected. Best wishes
The truth is bookish , that here is not enough research done on B12 deficiency . Information on it is very fat from complete . We are searching in the dark a lot of the time. We cannot generalise about it . I had a high b12 serum reading at the time of my IFAB test( because of oral supplementation) ,and it came out positive . I was treated for P.A., and my symptoms receded . ( including totally numb feet ) They start to return if I don’t get an injection once a week . It’s certainly a complex condition , and very much a “Cinderella “ one . I know people who need injections twice daily to stay well ,and others who are fine on 3 monthly .
We are lucky that PA has a champion in Martyn Hooper who founded our society 10 years ago . We are making progress - at snail’s pace . The wheels are turning slowly ! In the meantime , we have to help ourselves, often by trial and error .
It is so good to hear from people getting positive results from treating this, however they are having to do it. My feet are only half numb but symptoms seem to be getting worse so fast. I have Martyn's excellent book and keep reading as much as I can. I am sure that both my dad and aunt should have been checked long ago, but haven't been. Dad at least now treats himself. My grandmother had PA and it killed her mother and sister. Thanks again
Unfortunately I started Taking oral B 12 two weeks ago again so How long would I have to wait before having IFab test do u think. Really don’t want to discontinue taking it
You are very welcome . It’s nice to know that there’s somewhere to turn - the PAS forum . It is said that you need to leave off oral supplementation of B12 for several weeks before an IFAB test .
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
" I started taking oral supplements 2019 and when re-tested in August 2019 my vitamin B 12 was 913"
That means you almost certainly do not have PA. With PA you cannot absorb B12. At all.
I would go back to the oral B12 supplements. Try them for six months, then have another B12 test and, if you can get it, an MMA test. If those are both OK then it sounds like it's not B12 causing your problems.
Sorry - I'm a bit confused. If she has been taking supplements surely her blood level would be high but she would not absorb much, meaning she could still have PA?
Absorption is the process of getting something from outside of the body to the inside. The gut is considered to be outside.
If somebody has an absorption problem, like PA, then they have a problem getting the substance from their gut into their bloodstream. Therefore, if you can get B12 from the gut into the bloodstream then you do not have an absorption problem.
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