Pernicious Anaemia Society
14,263 members10,213 posts

Local paper would like to do a feature on me about Pernicious Anaemia - what would you do?

The thing is, I don't 'officially' have PA. I have self-diagnosed and am self-treating with injections.

My B12 level is 215. I managed to bring it up to around 220 after about 6 months of oral Methylcobalamin that I ordered from Amazon. so I am still (just) within the health authority guidelines of 200 to 900.

I have many PA type symptoms though which is why I have started self-treating.

I'm happy to feature in an article if it would help to raise awareness of PA but I'm worried about getting my facts wrong and looking like a numpty (and misinforming people).

I guess my main question is, do I have PA? In other European Countries, or the US for example would I receive an official diagnosis based on a level of 215?

Am I breaking any 'laws' by self injecting (I am based in the UK?), if so then this is going to be a problem!

What do you folks think?

6 Replies

Why don't you get tested for anti-bodies to the intrinsic factor which would proove you had P.A.? You are obviously getting tested for B12 . I would certainly not want to be featured in a magazine article about P.A. if I didn't know that I had it. I'm surprised that your levels are so low considering that you are supplementing , even if they are not getting through to your cells. I supplemented before being diagnosed,and my levels were through the roof.But the antibodies were found, so I had P.A. I was only supplementing with sublingual lozenges, so they were not getting through. Injections were successful, and my symptoms started to disappear. You are not breaking any laws by self-injecting. What have you got to lose by being tested for P.A.?

By the way those levels you mention are low,and need investigation. Good luck.

1 like

Hi Clarity. It seems a shame to pass up the chance to inform people as, with those levels, you are definitely B12 deficient.

The description Pernicious Anaemia is, in any case, misleading and causing confusion in public and medical awareness, as neurological symptoms appear before this stage and anaemia may never appear as the research document below shows.

You could on let them have the latest BMJ research link to make sure they get the most up to date information.

In view of the increased aging population, this link would also spread awareness of the need to be tested for B12 deficiency before being fobbed off with a dementia diagnosis by their GP:

1 like

Re levels, you could also quote the following from the book, "Could it be B12?", and the fact that, in many other European countries and Japan, your B12 would be considered much too low and treated without delay to avoid permanent neurological damage

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

1 like

my levels were intrinsic factor antibody test was negative(not surprising as its deemed unreliable,and my doctor took the blood right after my 4th loading weekly shot of B12)(two separate doctors in the practice were giving me conflicting though limited information,and the nurse knows absolutely nothing)

My ANHOM(auto immune ,anti nuclear antibodies test came back a strong positive at 1:640,which we assume to be autoimmune PA) Am I right?

I'm just pointing out that the intrinsic factor antibody test is not a reliable test.

best of luck raising awareness ( :

1 like

You're right about the unreliability of the IF test. Martyn Hooper in his PA Annual Report, page 2, mentions guidelines and fact that some people still have PA, even though the IF test is negative.



If they want to an article on PA why not put them in touch with Martyn Hooper at the Pernicious Anaemia Society +44(0)16 769717?


You may also like...