I now have B12 injections every 2 months. I have just had a blood test before my next injection was due and my level is 1200.

[peteteds]

My doctor wants to reduce my injections to every 3 months but I feel my symptoms returning after 5 weeks.

Is 1200 very high?

[Gambit62 Administrator]

When I asked about having a test done at some point last year to see what was going on the locum that I spoke to - who was actually the first person I'd talked to about B12 who really seemed to have any understanding - said that there wasn't any point because each injection is about 3 years supply of B12. Not sure whether that is necessarily true but there are a lot of people with PA who find that 3 months really doesn't do it for them and that the symptoms come back after a relatively short period - including me - think I manage 6 weeks.

One of the problem with the B12 test in the UK is that it doesn't distinguish between the levels of different forms of B12 so whilst your overall level may be high the level of the active form may still be quite low. Even if that isn't the case the mechanisms by which the B12 is absorbed into cells are not particularly well understood and it may well be something in that that means the symptoms return even if levels of B12 are good.

I get the impression that most doctors and GPs don't understand the condition very well so they are going by what the text books says.

Are you a member of PAS - it may be worth joining if you aren't ... and it is probably worth trying to read up a bit on things so you are in a position to at least try and persuade your GP that there is more to it than just sticking a needle in your arm once every 3 months and that will cure you.

pernicious-anaemia-society....

Best of luck - I can understand why you don't want to go back to 3 monthly and would support you in not.

[Holly10 in reply to Gambit62]

If you are saying that the normal B12 test your GP can order may not show the full picture, is there another test that we can order privately that would be more helpful.

Holly

[Gambit62 Administrator in reply to Holly10]

There is a test that you can get done that just looks at Active B12, - there are others on here who have had it done but I'm afraid I don't know anything about the arrangements. Your GP might be able to refer

[Gambit62 Administrator in reply to Gambit62]

should have said - as eggy does below that there is probably little point in getting the test done as problem may not be the level of B12 in serum but something to do with the mechanism by which it is absorbed in the cell. There are many people with PA whose levels look normal but still suffer symptoms. If you still want to go for the tests then suggest you look at answer on following post

healthunlocked.com/pasoc/po...

[eggyineggsile]

There would be little point in having the HoloT test as you're already on B12, I admin on a support group, one of our members had the test and she was told you only need to be off B12 for 2 weeks, almost all her symptoms returned by the time she had the test and when the result came back it said her B12 was replete, so personally I don't think it's worthwhile