What is the best brief, written statement on B12 deficiency to give to your doctor on first meeting?

[Dopey-Grumpy-Sleepy]

I have given up on the medical community for treating my B12 deficiency and I now self-inject 500 mcg every other day. But I have a new doctor, and I have fresh hope that someone other than me (with my still-fuzzy brain) can help take control of this disease. When I met the new doctor, I didn't get the feeling that she understood much about B12, but she seemed generally "open" -- and that is an extreme rarity in my experience. She ordered lots of blood tests and I will be returning in a few days to learn the results. I don't want to overwhelm her by handing an entire book on B12 to her, but I need to provide some information to back up what I've learned from this forum, Sally Pacholock's book and countless hours of internet research. (I haven't read Martyn's book regarding Pernicious Anemia and B12 because I don't have Pernicious Anemia....)

Also, now that I'm self-injecting, I expect that the B12 test will come back looking as if I'm within the normal range. Is there any test that will tell her what my actual situation in relation to B12 is? I DO NOT want to deal with another doctor who thinks it's a great idea to stop all treatment in order to get accurate readings. I can't survive another round of that kind of thinking.

Thanks for all the help many of you have given me in the past. I don't think it's an exaggeration to say that this forum has made my life worth living again.

[fbirder]

If you join the Pernicious Anaemia Society then you can download leaflets specifically written for doctors.

You say you don’t have PA. Can you be sure? There is no real definitive test.

Martyn’s book is, by far, the best source of up to date scientifically sound info on PA and B12 deficiency. I have a (signed) copy to my GP who then passed it around the whole practice.

[Dopey-Grumpy-Sleepy in reply to fbirder]

Thank you for reminding me to attempt to join pas. Previous attempts failed, but I've just been successful. I quickly perused some of the pamplets, but can you recommend a pamphlet to give to my doctor from the collection available? I'm glad that your doctor was so receptive to the book, but I think I may have to ease this new doctor into this, and so I'd like to offer her something more quickly read, at least initially.

Thanks.

[fbirder in reply to Dopey-Grumpy-Sleepy]

From this page - pernicious-anaemia-society....

Check out the 'Information for Clinicians – Doctors Briefing' and 'An Update for Medical Professionals: Diagnosis and Treatment'. The BCSH Guidelines would also be worth printing.

[Dopey-Grumpy-Sleepy in reply to fbirder]

Thanks for directing me to appropriate pamphlets for distribution to my doctor. I saw an interview with Martyn in which he stated that the first two times he was tested for pernicious anaemia, the tests were negative, while the third test showed pernicious anaemia. You commented in your reply to my statement that I do not have pernicious anaemia that there is no definitive test for pernicious anaemia. Is there anything to be gained, then, in pushing for additional tests for pernicious anaemia if my doctor has decided that I don't have pernicious anaemia?

[fbirder in reply to Dopey-Grumpy-Sleepy]

You need to try and get your doctor to diagnose PA in the absence of IF antibodies. If you download and print the BCSH Guidelines they say this about IF antibodies -

Anti-intrinsic factor antibody (anti-IFAB).

The finding of a

low total serum cobalamin level may be further evaluated by testing for anti-IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh et al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA). In addition, the positivity rate increases with age (Davidson et al, 1989) and in certain racial groups [Latino-Americans and African-Americans; (Carmel, 1992)]. (My emphasis).

So the doc can diagnose AbNegPA if you have the symptoms of B12 deficiency, low B12, and no other explanation for the deficiency (i.e., you're not vegan, haven't had small intestinal surgery, don't abuse nitrous oxide, etc.)

I've never had an IFAB test (my doc thought the parietal cell test was still recommended). And now I don't want one as a negative can, too easily, be regarded as proving I don't have PA. Indeed, my haematologist said I don't have PA based on the fact that I hadn't had the test done! SAo I asked him to explain why I had such low B12, why I had Autoimmune Gastric Atrophy and why I had positive GPC antibodies. He decided I did have PA.

[ACritical in reply to fbirder]

Fbinder is right, become a member and you have access to a whole host of advice. If necessary you can even ask them to help you with your problem. Being on hand and doing the research for all of us doesn’t come cheap, it takes a lot of time, dedication and don’t forget patience,having to repeat themselves daily when new people discover the website, also any travelling expenses involved. I’ll keep my fingers crossed that you finally have come across a GP willing to listen and update him/herself in the subject matter. I don’t quite see the point of yet another B12 serum test, knowing that your levels will be sky high with injecting that frequently. Testing for anything else is always helpful if it is done for the right reasons, to get to the bottom of why YOU are still not feeling well. In my case B12 injections are a godsend but not the cure to everything. I feel like a well trained ballerina on a tightrope trying to keep my balance. There is a variety of things needed to keep me me, my body in balance then just an injection.