Lack of awareness of PA & treatment

[angemull31]

Hello, I was diagnosed with PA around August 2014 after suffering with symptoms for years. They gave me 6 injections every 2/3 days for 2 weeks, and said I will be on them for the rest of my life. I began feeling unwell again after about 4/5 weeks and went back to the doctor who sent me for a blood test to see again how much B12 I had in my system, it came back as over 500 ng/L to which the doctor said I had enough. My daughter alerted me to posts on a PA facebook group, and have learned since although my body may appear to have enough B12 it is not absorbing it (I also take Metformin). Therefore I decided to self inject.

What is really worrying is the fact that no one from the surgery has got in touch with me for the follow up injections for every 3 months. If my daughter had not alerted me to the correct treatment guidelines I should be taking and do take now, what kind of state would I be in at present ?! Luckily I was made aware and had access to the information but what about the people who are not informed ?

Awareness should be raised amongst the medical community and they should adhere to treatment guidelines about Pernicious Anemia.

I think this should be compulsory.

[Hidden]

Yes, totally agree!

[Polaris]

Hello angemull. Yes, it's totally shocking that you have to self inject, you are only given injections three monthly, that GPs have so little knowledge of B12 deficiency and that most are even unwilling to acknowledge the latest research and guidelines. You probably already know that Metformin is one of a number of medications that can further deplete your b12. Re. your test result, here are extracts from the book, "Could it be B12? :

"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 "

It might be also be worth just pointing out to your GP the summary points of the latest research document Cmim BMJ- A.A. Hunt B12 :

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical feature of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

Very best wishes

[Secondchance in reply to Polaris]

I totally agree. I hope you still get some B12 from GP so it remains on your record. I dread to think what will become of us when we are older, quite probably in a nursing home and less able to advocate for ourselves! I had never considered an advance directive before but the frequency of B12 injections would be number one on my list now!!!

[Gambit62 Administrator]

Yes, it is frightening, though I think that some elements of the current guidelines are actually rubbish - the NICE guidelines are so confusing around whether or not anaemia is present and for some of us the frequency is just to infrequent ... and nobody ever seems to be able to come up with any scientific evidence to support the 2/3 months for hydroxocobalamin injections followed in UK, though in France and Germany once a month is the recommended frequency.

Its not as if B12 is toxic.

If I found myself unable to treat myself I think that I'd end my life rather than go back to the existence of depression and anxiety I had before I started treating myself.