B12 deficient but can't tolerate supplements. Can anyone help??

Hi, I usually use the thyroid part of HU but think you lovely people may be best placed to help me. My thyroid is well managed but my b12 is low at 206 (211-911). A month ago on a previous test it was 226. A year ago it was 300. If I try to take supplements, even at low levels I feel wired, anxious and can't sleep. I don't eat meat or dairy but do eat fish. The only form I haven't tried is the 'methyl' form, but both others produce horrid side effects at doses of 200% of RDA.

My iron level is 29 and I take 200mg ferrous sulphate daily with no side effects. I have a history of anaemia but not PA.

I'm very worried about how to get my levels up, can anyone suggest anything?

9 Replies

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  • You might not think that you have PA but have you had the usual tests for this condition?

    Being anxious and unable to sleep are symptoms of PA/B12 deficiency.

    At the levels you quote the latest is 5 below the bottom of the range, and comes after a history during a year of a decline from 300 to 206: from within the range, but only just, to below the range. Have you had tests for the various causes of low B12? Intrinsic Factor antibodies? Parietal cell antibodies? Achlorhydria? Coeliac disease?

    It is your doctor's responsibility, especially has your result is now below the bottom of the range and demonstrates a history of declining levels, to be investigating the reason for this decline and also she should be initiating injections of B12, as you are below the ref range. You might find that you do not respond to the injections with the symptoms you describe as your reaction to supplements.

    It is not your responsibility to be trying to increase B12 by means of supplements, it is hers to investigate , diagnose and treat.

  • Assumed your doctor was female, don't know why!

  • Thanks for your reply, I haven't had most of the investigations you describe except a Coeliac test which was negative. To be honest, I don't understand the difference between low b12 and PA, I thought with PA you had low iron too?

    I don't want injections as I can't tolerate b12 at all, but am stressed about the low results. Even taking 200% of the RDA of B12 i have the symptoms I described, but not at other times, so I don't think they are a symptom rather than a side effect.

    Most of my GP's are female btw! But just not interested. They say my level isn't that bad.

  • Your reaction to supplements might be to the excipients (fillers), used in the tablets. If you really want to use a DIY approach, are you aware that B12 is available in spray form, so no fillers in it, from Amazon and other firms?

    Have you had B12 injections entailing a bad reaction to them which now causes you to say that you cannot tolerate B12 at all?

    When your GPs say your levels are not that bad they do not know what they are talking about and also they are not observing the declining pattern you demonstrate: how can they be so blind? Open their eyes to this declining pattern. You are below range and they should be doing something about it. If they will not, then you can ask to be referred to a haematologist which is much to be preferred to the DIY route which can take a long time to achieve meaningful results. If you are successful in getting a referral to a haematologist then do not start on self-treatment as your B12 intake will distort his/her B12 tests.

  • It really takes a whole book, like "Could it be B12?" by Jeffrey Stuart and Sally Pacholok, or "Pernicious Anaemia: The Forgotten Disease" by Martyn Hooper to explain B12 deficiency and Pernicious Anaemia, but essentially they both result in a low level of B12 which must be treated.

    Ther is more than one cause of anaemia (Google types and causes anaemia) and you do not have to have a low level of iron in Pernicious Anaemia, it stems from lack of Intrinsic Factor and is a lifelong condition requiring lifelong treatment. Injections of B12 are the fastest way of getting B12 loaded into the system.

  • Thanks for the advice. My GP has been spectacularly blasé about the whole thing but I'll go back and request further investigations.

    I don't think it's fillers but you never know. I've bought good quality supplements, such as a bio care liquid. But I've always taken them orally, maybe that's part of the problem. Fingers crossed I'll get to the bottom of it.

  • Shellfish are a great source of vitamin B12 and can be eaten raw, baked, steamed, fried, or made into chowder. In addition to vitamin B12 shellfish are a good source of zinc, copper, and iron. Clams provide the most vitamin B-12 with 98.9µg per 100g serving, accounting for 1648% of the DV. That is 84µg (1401% DV) per 3 ounce serving, and 187.9µg (3132% DV) in 20 small clams, or 9.4µg (156.6 %DV) in one small clam. Mussels and oysters are also good sources of B12 providing 600% DV and 400% DV per 100 gram serving

    Hope this is of some help.

    Be Lucky

    I wish you well.

    Rain.

  • DV - Daily Value's

    Mussel's are cheap I buy frozen Green Lipped one's without the shell from New Zealand any good fish stall will stock these..

  • Hi Lolalois

    I think you are only one of many who get the brush off from their GP's, including myself, I was told inject or go away by my GP and yet a consultant told me, don't inject for God's sake, or we won't know where we are. Confused yet???? well join the club.

    I took it upon myself to address the problem, I too did not tolerate B12 tablets well even at 150 micrograms per day. Chicago Uni. Hospital stated slow release tablets were the best answer. However; they are not easily available in Britain. So further research bought me to take Cytacon B12 tablets at 50 micrograms twice a day, morning after breakfast and following my evening meal. In this format I hoped to mimic the SLOW RELEASE process. In order to allow the small intestine more time to absorb the B12 and make this work, I added B1 + B2 + B3 and B6, with the science being that B2 would activate the B6 and B6 would help the absorption of B12. Bingo it worked and my B12 levels went from 131 to 478 in less than 8 weeks and it was well tolerated. My GP stated that was amazing!!! I would hasten to add, that prior to taking anything I took the TTG - Intrinsic Factor and Parietal Cell Antibody tests, which all came back as (NEG) and I would strongly suggest you do the same initially. If you later wish to try this programme, I would again suggest you use the LICENCED form of B12 made by Cytacon, whilst the others B vitamins I took, were in a tablet made by a company called ACTIVIS under the title "Vitamin B Compound Strong Tablets". Well all i can add is it has worked well for me.

    However if you wish to go the Doctor route, then I suggest you ask for a referal to Guy's & St, Thomas's Hospital. Ring Denise Oblein on 0207 188 7188, their Scientific Director is Dr Dominic Harrington, a great guy who really know left from right and they can do tests that your local facilities probably cannot. Ring Denise she will advise you and who knows, she may even get Domonic to speak to you. Worth a go, it will cost you nothing to ask!!

    Best of luck and don't give up, we're all behind you!!

    B12 Turbo

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