to late for a referral to hematologist?

[Somerset_UK]

I have finally managed to convince my GP to give me my B12 injections every six weeks (it wasn't easy!). however he now wants me to go and see a hematologist. I don't see the point. if I do go and they tell me my levels are fine will they take away my injections?

[wedgewood]

We have had many reports of that happening I’m afraid . Many doctors don’t recognise that PA patients will always have high readings of B12 when being treated . They don’t read the guide lines that tell them that testing for B12 once treatment starts is a waste of time . I would down load and print out those guide lines , and show them to your doctor.

Glad you got your injections to six weekly . If they are not often enough to keep symptoms at bay , you can self-inject —so cheap and convenient . ( advice here if you should need to )Best Wishes .....

[Somerset_UK in reply to wedgewood]

many thanks for this! not sure I would be brave enough to self inject but will do anything it takes to at least make me feel normal for a few days. should I just refuse the referral or go and have the argument with hematology?

[wedgewood in reply to Somerset_UK]

Well- I got referred to an haematologist , and it was a terrible experience . He honestly knew nothing about the subject . I came away more depressed than ever . Of course you may have a better experience . ( my experience was nearly 4 years ago ) The only thing that happened to me was that my GP was even more adamant that I should only get 3 monthly injections after seeing the haematologist . Of course you may come across a better informed haematologist. ......

As to self injecting - I’ll agree the first time is scary . But , if I can do it , so can you . I was shaking like a leaf the first time , and also felt nauseous! Nearly 4 years on , I don’t turn a hair . I inject weekly , and get no return of any symptoms . You reach the optimum injection rate by trial and error. It is so cheap . Buying in bulk (,100 of everything ) I’m paying about £1.20 for an injection . It takes 5 minutes from start to finish . No travelling to the surgery, to potentially catch a bug in the waiting room ! In the comfort of one’s home . I get no pain from the injection at all . It always hurt at the surgery( I don’t go there anymore )

Any how , I wish you all the best .

[Midnight_Voice]

We are fighting to get referred to a haematologist; the guidelines say that one should at least be consulted by a GP when someone presents with suspected PA, which I don’t think has happened in our case (‘us’ being a PA sufferer and me as champion, because one of the Catch-22s of PA is that it can rob you of the will to fight the good fight, when that is necessary).

And if you do see a haematologist, they are more likely to be working from the BCSH guidelines - and if not, those are the best ones to refer them to, as they are rather more detailed, and rather more firmly stated, than the NICE/CKS guidelines.

Hopefully, in the last five years, those guidelines have gained a wider currency among haematologists; but it might not hurt if you took a copy along to the consultation in case.

I know you are worried that your current arrangement, more favourable than any of the guidelines, may be disturbed, but I suspect your GP needs the haematologist backup to keep doing this, hence the referral.

Worst case, you can always SI; we were apprehensive about this at first, but it really is so easy. And they can’t take it away from you, either.