Anyone have a theory about us and Vit B12?

I was browsing, looking for any answers about stomach probs, pain, aneamia and other symptoms when I saw a piece about B12 solving a lot of problems for different people. One notable tale was about having blood tests showing no deficiency, but if part of your problem is poor absorbtion of nutrition, the B12produced just circulates in the blood. Therefore your level is false. Its not a sample from the engine of how well your fuel (B12) is doing, its sticking the needle straight into the petrol tank.

I just wondered if many or any of us autoimmune/systemic disease/antibody riddled folk knew of a connection.

Any miracle reactions to B12? Oh and not the over the counter B12 or multi vit. The percentages in the latter are miniscule and the fillers nasty, heard that before, and the fillers in the former ditto, whether injection or tabs. Its Methylcabalomine (?) brain fog (also helped by B12) sorry, is that right? Cabalomine is B12? Its unadultered stuff anyway.

Over to you guys! Will you share your theories, experiences please?

Thanks. I know you will



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28 Replies

  • I buy over the counter vitamin b compound supposed to help with energy fatigue etc. I've been taking it for approx a year. I was getting extremely tired, I have a busy lifestyle. My sister has ms, where her body no longer functions but her brain is still very sharp, she was diagnosed 40 odd yrs ago. She has always taken vitamin b. I decided to try it, why not it wouldn't do me any harm. Since taking it I don't feel as tired as I used too. I'm not an expert in medicine or chemistry so have no idea if it is the vitamin that helps. I am getting older so would expect things to start getting a bit out of sorts.

    Some say if you believe it works/helps then it will. Be interesting to hear others thoughts, oh I've also starting taking vitamin c too 😉

  • Thanks Chris. Perhaps if you try the methyl (purer) ones the benefit you feel would be greater. Just an idea. I agree to be wary of the placeba effect but why not try and see?


  • Hi, I had awful problems with dizziness and feeling like I was 'off balance' which resulted in me falling into a bush on the school run!! Decided to do some research and I read that both those symptoms can be caused by B12 deficiency. I went to my GP to get tested and the results came back a 'low normal'! Apparently the 'normal' for this country is much lower than in other countries like Asia. In other words, my levels were considered ok here but if I lived elsewhere then my B12 would have been considered far too low! I also found out that B12 is perfectly safe to take and any that your body doesn't need just comes out when you wee so I decided to go to my local health food shop and they were brilliant. I started to take Solgar 'methylcobalmin' 1000mcg once a day and I cannot believe the difference it has made. No more dizziness at all and no more falling into bushes!!. It's been life changing .

    What I'm finding along this lupus journey (I was diagnosed 4 years ago) is that the doctors don't know everything and they seem to just dish out their standard meds, but sometimes a simple supplement can make all the difference.

    Ive also now started taking vit C and magnesium supplements (also by Solgar) as was recommended by someone on here as I was having awful numbness and tingling in my right foot and leg. My rheumy had sent me for brain scans, nerve conduction tests etc but after 2 weeks of taking the magnesium supplements I was noticing a difference!!


  • Sorry Belee, but the picture of your disappearing into a bush was so funny, but also, so telling. The way our bodies cope, or not with these diseases is so varied.

    Can I ask which health food shop you use? So pleased they were so helpful.

    I too have foot numbness, ignored by all and sundry, and hope taking your type of B12 will help plus the magnesium. It is reckoned it can cause premature hair whitening ( front of face hair line been increasingly white since my 40s, could be genetic I suppose but dont know). Interesting

    I find your info re our lower levels than other countries interesting. Could explain why many think they have Vit B12 deficiency but cant get the doc to agree!

    Thanks for your experiences, Im defo going to try this as its not harmful, though I would never self medicate anything other than researched supplements.

    Keep on improving



  • Not noticed the hair whitening (but then I have lost two thirds of my hair! )...... The health food shop I use is in the town where I live - called Whitstable Nutrition Center.

    Really hope the magnesium helps the foot numbness for you. ( I use Solgar magnesium citrate). I also take vitamin C 1000mg.

    The vit B 12 didn't help my foot numbness and tingling at all. But did help with dizziness and balance.

    Hope you get some relief soon xxx

  • Hi Belee,

    You are correct that because vitamin B12 is a water soluble vitamin, it is difficult to overdose or build up vitamin B12 toxicity. However, one study has shown that excess B-12 intake was associated with a three-fold increase in the risk of developing prostate cancer, so I would urge some caution.

  • Paul, just seen this. My hubby just been diagnosed as anaemic, same gp practice. He has close relative occurence of Prostate cancer so will not be sharing my B12 with him, but will alert him to the warning as usual ferrous sulphate dished out x3 daily. Will need to increase natural iron sources more I think.

    Thanks as ever


  • Yes I read about this and I tried it when I had tinkling and red feet before I cleared up for 4 years now its back again I do think their is somthing in this not enough b12 can make u tired and give u tinkling feet

  • Lots of patients with auto immune inflamatory disease have pernicious anaemia PA ( low B12 ) which is also an auto immune disease ( the immune system attacks the parietal cells in the stomach which produce intrinsic factor which is essential for B12 to be absorbed ). B12 injections are needed to treat PA as the oral form isn't absorbed due to lack of intrinsic factor!

    My B12 was only 75 when I became unwell at first but replacing it made no difference to my symptoms. If you think you are lacking in B12 then it may be worthwhile trying the sub lingual tablets. In all these things though beware the placebo effect.

    I do worry about the B12 sites which attribute every symptom to B12 deficiency. I check into the HU one from time to time and have picked up a couple of cases of Vasculitis ( people have kindly messaged me afterwards to say that they pushed for further testing and that they were eventually diagnosed ).

  • Hey guru, nice to hear fom you. Your brand of wisdom is always gratefully received.

    Yeah sneaky inflammation does seem to occur with us and can manifest itself almost anywhere it seems. Vascilitis for example. I am not surprise your insight proved useful on that forum.

    If you have been up with my posts you will know that an inflammation has been inferred recently for me but nothing decided. I note your info re intrinsic factor which ties in with the vitamin just being in the blood stream, not coming from its process. As you were low that would be a concern for me.

    Yes, I agree we have to research with care and choose with care what we take from that, hence my plea here for experiences to gain a better view. Your recommending the under the tongue tabs, does that mean you found that method of ingestion worked for you and improved your count? Do you have any symptoms which tie in with vitamin B12 deficiency?

    There is that autoimmune connection again.

    Thanks for your input Keyes

    Best wishes


  • Hi Footygirl,

    I had 5 loading injections of B12 to treat my deficincy but as my intrinsic factor antibodies were negative I have failed to get a formal diagnosis of PA! My levels are always the low end of normal/ slightly deficient now and I am a bit fed up of fighting with all my Dr's about it all. ! I am having the levels checked again next week and my Rheumy has agreed to regular injections if it's still slightly low.

    I have never tried the sub lingual tablets but hear that they work well. It's worth noting that PPI's such as omeprazole can interfere with B12 absorption. To tell you the truth I find the whole B12 debate a bit polemic, my levels were so low that my GP commented she was surprised I was still able to walk and didn't have profound neurological symptoms. I do think I have PA, especially as it's very common in Behcets syndrome which I have features of. I guess I just choose my battles carefully these days and B12 isn't one of them. Certainly topping up your levels can only help and it's maybe worthwhile asking for the active B12 blood test as its a more accurate test.

  • Keyes! Another nugget. I didnt know there were two tests! More knowledge gained. Thanks I will ask for it... actually I have my monthly blood test on Wednesday. Any idea what request goes on the blood form? I can stick it on myself then when I see the Rheumy next Monday, the answer will be there! They are the ones who do the bloods.


    Great info guru, again!

    Thanks, truly


  • This is a link that explains it

    I haven't had the active B12 test myself and I don't think every hospital lab offers it unfortunately. Certainly the guidelines recommend treating neurological symptoms with B12 injections even when serum levels are normal. Foot numbness certainly could be a sign of B12 deficiency ( peripheral neuropathy ) but getting anyone to say that's what it is could be tricky.........😁

  • Thats so depressing. So true but depressing given the fight I am having with my useless GP to get this far. Had to go to Lupus clinic in Manchester to get proper blood tests and exam to secure Sjorgrens/Fibro diagnosis which now could be Sj plus B12 deficiency or even PA! Yikes!I

    Thanks for NICE link. Will they pay? Might go private. Just looked. Have to have gp ref for blood test. Catch bloody 22. Damn.

    I AM SO TIRED. Literally and emotionally and physically and mentally.

    Sorry, Keyes, having a moment.

    Thanks for your replies and support


  • Thanks for this info - I had just started taking Folic Acid thinking it was B12. I realise now it is similar but not the same thing! Your msg made me delve a little deeper:

    There is a risk that if folic acid is given to people who have undiagnosed deficiency of vitamin B12 it may lead to neurological damage. Vitamin B12 deficiency produces both an anaemia identical to that of folate deficiency but also causes irreversible damage to the central and peripheral nervous systems.

    Folic acid with or without vitamin B12 for cognition and dementia. - NCBI

    So will get B12 to try for the tiredness. Thanks for all your input.


  • Great link Nixa, thanks. Very interesting. More info for useless Rheumy if she challenges me.

    Glad to help, Im here all week! Sorry, joke.

    Appreciate your info and your support.

    Be well


  • What level is yours? The "normal" levels in this country are too low for healthy people, let alone for us. It is usually set between 200 - 900 Ng/l but the ideal level for us should be above 500 ng/l. Mine was 377 last time I had it checked, so I need to up it. I started taking Jarrow Methyl B-12 but before that making any difference I fell ill and I sort of forgotten about it. You e reminded me about it now, thank you!

  • Hi guru, how are you doing?

    Thanks, informed solid information as always. I shall be asking the Rheumy next week for another test for my B12 level. I got a level for ferratin as it was too low, but just "normal" for folate and B12, hence my suspicion.

    Sorry you fell ill, always our trap, before you felt any benefit. I see you chose a methyl one - wise, like you. Glad to be your aide memoir anytime!

    Thanks so much for replying, your info will help a lot of people I know. More knowledge, and knowledge is power when speaking, down, to docs. Ha.

    Take care


  • I'm still struggling, though I'm yet to find out why. Several diagnoses have been discussed: POTS, Ehlers-Danlos, MCAS (mast cell activation syndrome), CSF spinal leak, hemiplegic migraines, now we're looking into aortic regurgitation. I'll update once I complete this round of doctors' visits and a firm diagnosis (if I ever get one)!

  • Oh this set of conditions... what can I say? Im sorry that it is your turn to be in the tumble drier of symptoms and questions without answers. I hope so eone with a brain and experienced empathy plucks all the right diagnoses and treatments out for you.

    Take great care, and let us know how you get on. You are not alone!

    Just watching Coldplay at Glastonbury. What joy music brings.

    Love, hugs


  • Hi Footygirl,

    According to 'The Lupus Encyclopedia' by Donald E. Thomas Jr,

    "Although vitamin B-12 deficiency does not occur more commonly in people who have lupus than in other people, it is important for the doctor to consider since anaemia is so common in people who have lupus and the doctor should look for all potential causes, other than just the lupus.

    "Other causes of vitamin B-12 deficiency include having a condition called atrophic gastritis (which is more common in older people), eating a vegetarian diet, alcoholism, or having malabsorption problems (such as what can happen after gastric bypass surgery). Some medications can also cause vitamin B-12 deficiency, especially those used to decrease the acidity of the stomach, such as proton pump inhibitors like omeprazole. The diabetic medicine metformin can also cause decreased absoption of vitamin B-12."

  • Hi Paul, how are you?

    Many thanks for your quotes from the TLE, sorry, short cut. Very interesting and glad some more evidence Im only being cautious not a hypochondriac as previously charged. I have added Active B12 to my standard full blood test for Wednesday, hope that is what you write on. The Rheumy phlebotomists are obliging and do my diabetic etc blood tests for me at same time to avoid too many sticks and to avoid having to go to general blood takers in the airless, windowless dungeon all the great ill and unwashed use at same hosp. Sorry peeps.

    I will print out above and take it with me. I take Lansaprazole and am veggie, plus not eating well since Feb so all could add up?

    You will have read the saga. Today I wrote a letter of thanks to MRI doc I saw consultant Dr Gorodkin FYI, I see Prof Bruce is no longer listed as personnel on web site. I also told her of GP reaction, to explain what I am up against. I am changing GP defo after hearing today a neighbour took 13 yo son to this SENIOR GP last week cos kid peeing blood. He will get over it he said. Needless to say a day later A n E and hospital for four days so that seals it.

    Approaching PALS as sounding board in local hosp as recommended BY PIP ASSESSOR! and then maybe use GP located at that hospital, only five mins away.

    Right, must try to sleep.

    Thanks again, oh guru of admin!



  • I am good thank you. It's very busy in our office at the moment as we prepare the Summer edition of the LUPUS UK magazine, start getting campaign materials ready for Lupus Awareness Month in October and half of the staff have their summer hols!

    It's definitely worth getting tested, as you say, you have a few of the risk factors for B12 deficiency.

    I wasn't aware that Prof Bruce was no longer listed as personnel. This could be because of his increasing research responsibilities at the moment.

    I hope that you are able to find a much better GP. Let us know how you get on with PALS.

  • Ps to above. Soo exciting, I hope.

    Saintsmad local to me, Has found switched on GP who got her the blood results I only got from the MRI consult! So asking her who, so I can join, I hope, and help develop this intelligent GP into a local specialist! I hope. Early days, but maybe start support group as Lpool not have one and Manchester so far away! Hopes.

    God bless this forum say I for so many reasons! Also will check her assessment of Specialists you recommended to swap there to, on NHS. This GP may have no prob with referring, especially if one of her patients already has experience of (him/her)

    Anyway, hope springs eternal



  • I have been on Lansaprazole 30mg for years. I am vegetarian and have not eaten properly since February. Just had emergency apt at docs cos right leg swollen and change of sensation in it. It had been swelling since Fri, slightly but recovered next morning. This am concerned. Examined. No ref to it. I explained neuropathy Diabetes causes it! Only had diabetes 6 years well controlled by diet so no meds there. If Gabapentin, reverse dosage thus far see if symptoms subside. Give it two to three weeks. Mention of Vit B 12 defic received ream of reasons month old blood test results show cant be that. Glad I put it on form for tomorrow. This was different, young GP. Not impressed.

    Back to the encyclopedia of Lupus.



  • Ps

    Had bloods, no questions just did it using brown bottle used for other stuff. Yippee. Now wait for Wrath of Khan on Monday for doing it myself. Dont care, no one else bothered doing it. We shall see.

    Quest for PALS dead end, only at A&E hosp miles away, no petrol money today so must wait til next week. Hey ho.hubby ringing to see if we need apt. Later we dont.

    So far so good peeps



  • Hi Footygirl. My B12 has been monitored closely since 2012 so the docs have watched it falling over this time to 108 before deciding that I needed to start injections for life. I haven't been tested for the cause - it's cheaper just to treat. I attribute mine mainly to my age (49), vegetarian diet and/or medication and I don't think I had any symptoms however my flares have been less frequent since my loading doses. Having said that, sunlight has been in short supply so it's hard to know. My white blood cell count hasn't come up though, nor has my struggling HB.

    I agree with Keyes that there is a tendency for any and everything to be blamed on B12d and some people certainly do suffer dreadfully but for me it's only been a small problem.

    Best wishes, Clare

  • Thanks Clare.

    We will see on Monday with me. If the result is negative, fine, one cause eliminated, if not, hopefully with remedy will come a lessening of symptoms. Either way it has been checked.

    I understand your, and Keyes note of caution, but at this stage in my saga, getting no answers to reasonable questions or even being ignored is no longer good enough. I am not looking for cures, I am aware there may be none, but I do think the relatives of these disinterested GPs et al would get better investigation, so why not me?

    Watch this space



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