New PA diagnosis, advice please

[Berries80]

Hi. I have been a member for a while but not posted before. I’m after some advice…

I was diagnosed with PA in May after asking my GP to take some tests to see why I was so exhausted, run down, always getting mouth ulcers, forgetful, shaky etc. My B12 level was 112 so a further test then followed which indicated pernicious anemia. I had 6 ‘loading’ doses straight away. I then had a further injection in October and am due for another this month. I just wondered if anyone (UK based) was tested again in between doses? I am also iron-deficient and get iron infusions when required with regular blood tests in between. I’m not sure why I don’t get blood test for B12 levels in between injections in the same way? I’m fairly sure my GP (although lovely) doesn’t understand the nature of PA and the effect it has on me. Really what I’m asking is, how can they be sure that one injection every 12 weeks is doing the job!

I’ve been reading some info on here and doing additional research, and started using a B12 spray to ‘top up’ between injections but whilst I feel like I have improved a little, I still suffer from some of the symptoms. Is there anything else anyone can recommend?

[clivealive Forum Support]

Hi Berries80 testing serum B12 after treatment for P.A. is not really necessary and meaningless unless the result comes back low.

The British Committee on Standards in Haematology - the biggest blood brains in Britain - writing in the British Journal of Haematology onlinelibrary.wiley.com/doi...

They say...

“Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m.every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required”.

Depending on your neurological symptoms you may be entitled to having injections every eight weeks.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[wedgewood]

It’s only YOU who can tell if you are receiving adequate B12 injections . Testing the blood after you have started injections is a waste of time .Ypu will always have a high result , which does not mean the B12 is getting to your cells . You know if your symptoms are diminishing . If you have been B12 deficient for a long time , you may not get rid of some symptoms 100% . I’ve had to resort to self-injections because 3 monthly did not keep symptoms at bay , and my GP. would not give me more, no matter what .