Mother had pernicious aenemia and developed dementia in her seventies. She didn't and nor did I realise that she needed to have regular shots by gp. I feel so guilty and wish I had known more about this awful disease and if only she'd had the shots she would probably be ok.
Now I am feeling ill and don't know if I've I've inhereted it or not.
What can I do.
Written by
Soundwell1
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Your vitamin B12 reading is low , and I would expect you to have some symptoms of B12 deficiency at that level . . How does “feeling ill” manifest itself ? A negative result for Intrinsic Factor Antibodies cannot be relied upon . It is a very unreliable test if it comes up negative ( about 50% apparently ) You can have Pernicious Anaemia even if you get a negative result . P.A. can definitely have a genetic link .
I’m surprised that your G.P. hasn’t given you loading doses of B12 injections given your mother’s history . You must go back to your G.P. and get treatment . I hope that he/ she is aware of the latest guidelines , issued last year . Best wishes to you .
Thanks for your advice. I will go back to gp. She was going to offer me one but I asked for intrinsic factor test. Didn't know then it was so unreliable.
I was concerned because your mother has P.A. Reading all the information on P.A., you will find that a negative Intrinsic Factor Antibody test is about 50 % inaccurate . If it tests positive , it is accurate .If you have P.A. symptoms, ( and there are a lot - they manifest themselves in so many different ways , but you usually get a choice pick and mix medley of 5 or 6 ). exhibit symptoms , and have a low B12 reading , then it’s good to get treatment . If your B12 deficiency is caused by P.A. then oral supplementation will not help . PLUS , you have a close relative who has P.A, your mother , and you have witnessed what can happen if it’s not treated properly . The great thing about B12 injections is that even if B12 deficiency is not the problem , no harm is done by the injections . It cannot be overdosed .
If you read the posts on here regularly , you will have gathered that the medical profession in general is very ignorant about Pernicious Anaemia, and many of us cannot get sufficient injections to keep symptoms at bay . This means that we then turn to self - injection . Because B12 ampoules are only obtainable on prescription in U.K. , we have to get supplies from very good reliable online German pharmacies. They are obtainable there OTC
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
I wrote a very detailed reply on another forum thread with links to more B12 books, b12 websites, UK B12 documents and other B12 info which might be of interest.
I note from reading your history , that you have Diabetes type1 — This is an auto-immune condition , just like thyroid problems which you also have . It is very common for P.A. patients to have other auto- immune conditions , thyroid being the most common . P.A. is an auto-immune condition . These condition rarely come alone .
Read up all you can about P.A. Martyn Hooper, our founder , has written good books about P.A. ( Amazon ) Use Amazon smile , as then the P.A.S. gets .5% from many purchases if you opt for that charity .
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