what to tell the gp

[jillc39]

After months of negotiations my gp will now only allow a b12 injection every three months. I cannot last more than about 10 days before symptoms return - therefore I SI. When I once mentioned this to my gp she went wild and told me to leave the practice (I negotiated my way back in). Now, when I go for my three monthly injections she will see I am okay whereas I would be crawling there if I had not SI. How should I handle this..... very grateful for suggestions. Meanwhile, a happy and healthy 2017 to you all.

[Hillwoman]

Quite honestly, I would find another GP if you can. I couldn't possibly work with a doctor like this, and none of us should feel obliged to do so. At one time I did feel obliged to try hard with difficult doctors, but it cost me far too much in terms of stress and deteriorating health. Now I think "a pox on the lot of them", and take care of my own health.

It's good to hear that SI is helping you. The only thing realistically you can do to persuade a GP is to keep a detailed record of progress or decline in relation to the frequency of injection. This works with some doctors, but if they've already written off your problems as psychological in origin, any detailed record presented to them by you may be regarded as proof of that psychological problem. I've known of people being described as "obsessive" for doing just this.

[jillc39 in reply to Hillwoman]

If I get into any discussion now she says she had to observe protocol and that is all I am allowed - even though I still have quite severe neuropathic symptoms at times.

[Hillwoman in reply to jillc39]

Your GP clearly isn't following protocol for B12 deficiency with neurological involvement, which is one injection every two months, but only after the end of the loading regime: alternate day injections until there is no further improvement.

[fbirder in reply to jillc39]

If I get into any discussion now she says she had to observe protocol

1. As Hillwoman says - protocol is every two months.

2. She does not have to observe protocol. Doctors are allowed to prescribe outwith the licensing (off-label) of any drug as long as two conditions are satisfied - that it is to the patient's benefit and it will be safe. The first is simple the second is covered by the Stichting Tekort pinned post.

[clivealive Forum Support]

I had a "one size fits all" GP who laughed in my face and said that my symptoms couldn't be my P.A. (after 40 years) because I was getting the B12 so I changed to another doctor who was cautious to begin with, but armed with the knowledge I had gained from PASoc and this forum she "gave in".

[Gambit62 Administrator]

jillc39, it does sound as if your current GP may be a bit of a jobs worth and that trying to find another GP might be the best option but you could also try joining the PAS and ask them directly for support in getting your GP to realise that she is not actually treating you as a patient and that the way she is treating you is actually harming you.

pernicious-anaemia-society....

if you are already a member then I'd suggest contacting them directly.

[jillc39 in reply to Gambit62]

I am a membe of pas - I will.

[littlecarol]

I am facing the same dilemma! I have been on 6 weekly injections for about 3 years... but that is still not sufficient so I SI every week. The doctor has now sent a letter to say they want me back on 3 monthly injections!! So iv got to go in for review! I don't know if best to tell them everything... or just say nothing and continue SI anyway! Don't know if I can be bothered with the drama... took me years of suffering... and only through SI have I managed to get myself feeling well again. Advice welcome please 👍