B12 testing: I need some answers!

Hello All, I'm new here as I've just been diagnosed as having Biermer's disease, which I believe is another name for PA. I'm producing antibodies against intrinsic factor and my B12 is at 267, my ferritine is at 12 and my hemaglobin levels are just within the normal range, so not yet anemic, but very tired. I've been suffering with neurological disturbances for 6yrs now and my doctor doesn't understand why as at 267 my B12 is the low end of normal. She suggests that she tests me in 1 month, so basically she's waiting until I get really ill, I'm not entirely confortable with this even though she's the best doctor I've seen to date (and believe me, I've seen a few!) My question is, isn't there a 2 year delay between the B12 level showing and the real B12 levels at present because the vitamin is stocked in the liver? She also told me supplements wouldn't make any difference as the antibodies will stop me from absorbing so an injection would be needed. What's the difference between supplements, injections, sublingual and sprays? Is there a danger of over supplementing? I'm eating 100g of liver per day in an effort to stay upright.

14 Replies

  • I suggest that you point your GP at the BCSH guidelines on cobalamin deficiency - don't think it matters where you are located you need to get your GP to understand that the B12 serum test is not a test that can just be interpreted on the basis of numbers but she needs to look at the clinical situation and treat on the basis of clinical presentation


    The summary is quite clear. Also the treatment regime on p8 - you need to be treated for neurological involvement.

    There is also this alert from NEQAS warning of the dangers of failing to treat properly if results are interpreted too literally


    Problems with B12 serum

    a) looks at all B12 in the blood not just the active forms that are used at the cell level

    b) there are a few things that can go wrong below the cell level and it tells you nothing about these (eg functional B12 deficiency when the body creates antibodies to TCII when serum levels are high).

    Although B12 is stored in the liver and then recycled the mechanism for recycling it also relies upon the same mechanism as you use for absorbing from food so basically if you have an absorption problem such as PA then levels in the liver are a bit irrelevant as well ... though these aren't something that is going to be picked up in the serum test, which is looking at levels in blood.

    The fact that B12 is absorbed in the liver is why deficiency doesn't show up immediately the absorption problem starts but as the absorption gets worse the recycling gets worse as well so things tend to start accelerating.

    You are already showing strong signs of deficiency and you need to be treated NOW!!!

    I hope that the above articles help to educate your GP about the importance of looking for clinical signs (symptoms) rather than relying upon tests.

  • Thank you so much for the information, I live in France so unfortunately I can't really present info in English to my gastroenterologist, but now that I know I intend to get the point across and ask for the two tests which measure the B12 at cellular level.

  • If you are in France then you can actually get injections at the pharmacist and may be the pharmacist might be a better person to talk to as they may be a little more aware.

    Have a friend who has dual French/English nationality and spent a large part of her childhood in France and she told me that you can go into the pharmacist there and get a B12 shot - without a doctors prescription - so if you really can't get through to your gastro I'd suggest that you just start treating yourself.

    It is possible that they are caught up in the confusion between B12D and anaemia. Anaemia isn't always present. It isn't anaemia that causes the symptoms of B12 it is the other way round.

  • Thanks for that, I'm pretty sure my gastro will listen she's young and very open minded. I have to see her at the end of Sept to get the results of my stomach biopsies, she did speak about injections yesterday so perhaps that's what she'll suggest without me prompting her. In the meantime I'm eating a lot of liver, do you think it does any good? I know it was the first 'cure' for PA symptoms so I'm giving it a go whilst waiting for my treatment.

  • You would be looking to eat liver that is just about raw - the reason it worked was because the liver is where B12 is stored so contains large amounts of B12. Strictly speaking I think it was originally semi digested and then regurgitated which meant that it contained intrinsic factor from the stomach of the pre-chewer.

    For some people flooding the gut with B12 ... which large amounts of raw liver could possibly do ... does result in enough getting through as 1% of B12 is actually absorbed outside the ileum which might be another reason why it worked.

    However, reality is that B12 in liver isn't the easiest to digest and fish and cheese tend to be better but I hate to think what volumes of fish or dairy products you would need to be eating to get enough if you have an absorption problem.

  • It is my understanding that eating a lot of Vitamin B rich food is useless in treating PA. You could eat bucket loads of these foods and it still would not be converted into Active B12, because of the PA. You really need to have the blood test that measures your Active B12, and then have the required loading B12 injections, followed by continual maintenance doses. Hope this makes sense.

  • Thanks Karemski, I wonder why the doctors who first treated PA had some success with 'liver therapy'? There seems to be a lot of grey areas with this disease. Perhaps it depends on the extent of the antibody load, if you have no intrinsic factor left at all then B rich foods are useless?

  • OK I think I've found the answer to my question about dietary B12 from a NIH American dietary factsheet concerning PA

    'Pernicious anemia is usually treated with intramuscular vitamin B12. However, approximately 1% of oral vitamin B12 can be absorbed passively in the absence of intrinsic factor [11], suggesting that high oral doses of vitamin B12 might also be an effective treatment.'

  • Hi expatkerry

    When in 1972 I was first diagnosed with (following gastric surgery which involved the removal of 2/3rds of my stomach 11 years previously) I was "offered" two choices:

    a) eat raw liver three times a day or

    b) have an injection of B12 Cytamen (cyanocobamalin 1000mcg) every four weeks for the rest of my life.

    Much as I love fried liver with bacon, onions & chips, I didn't fancy eating it raw so opted for the injections and now, 43 years later and aged 74, I'm still "clivealive".

    I wish you well and do hope you get the treatment you need very soon.

  • RAW!! Clive, I'm trying to keep a sense of humour here, Joking aside thank you for your encouraging comment, it's good to here that people are doing well on the treatment

  • hear not here!

  • Your neurological symptoms mean that this would probably not be adequate Kerry. Very few GPs understand the symptoms of PA/ B12 def. as you know, only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate. Devastating neurological symptoms appear before this stage and should be treated aggressively without delay.

    Here are some helpful links you may not have seen:

    b12deficiency.info/b12-writ... (an excellent film )

    cmim.org/pdf2014/funcion.ph... :

    The above latest UK research document is supported by many research papers and has a useful summary which might be easier to translate for your GP or ask for one who understands English, It tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    Although this is the UK government, a translation of this might also be effective,


    "To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed." Countess of Mar - Crossbench


    Sally Pacholok (Could it be B12) recommends covering all bases with injections AND supplements. Our family have found Jarrows Methylcobalamin 5000 mcg taken sublingually effective (good reviews on Amazon for neurological symptoms).

  • Thanks for the info

  • Just thought I'd leave an update. It would appear my diagnosis has been downgraded to suspected PA, the doctors are playing wait and see. After explaining to my specialist that I can't take the iron tablets she prescribed (upsets gastritis) she has decided to give me intravenous iron, I took the opportunity to ask why she hasn't given me B12 yet (I'm at 267) despite some neurological symptoms. she explained that she considers it toxic and my level is within the norms. I asked her to do the methylmalonic acid test and the homocysteine test and she agreed. So I feel I'm getting somewhere, she has also recommended acupuncture, anyone tried this? the doctor that does this also specialises in micro nutrients so i'm feeling hopeful.

    Last question, is it possible to have the anti-intrinsic antibodies and not have PA?

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