Pernicious Anaemia Guidelines

[Swinging-Chandelier]

I too am a new subscriber to this forum. I was diagnosed with Pernicious Anaemia about 10 weeks ago after going to my GP complaining of numbness in my fingers and toes. I was immediatedly given the 5 loading doses of B12 and told I would need them for the rest of my life at 3 monthly intervals. I was also told my numbness would disappear after about 3 weeks. Thanks to this forum I discovered the NICE guidelines associated with PA plus neurological problems, recommending injections every other day until symtons stop improving and then every 2 months. I presented this to my GP, when after 8 weeks my numbness was still present. In his considered opinion I did not need further injections and told me he would check my blood again after I had received my first 3 monthly injection. My question is what are you supposed to do if your GP chooses to ignore the NICE guidelines.

[clivealive Forum Support]

Hi Swinging-Chandelier if your doctor says "he would check my blood again after I had received my first 3 monthly injection." that will be pretty pointless as it will be sky high and he's just as likely to then tell you you don't need injections at all.

You've done just about all you can do against "his considered opinion" so I suggest you join the Pernicious Anaemia Society - click on the link below and scroll down

.

healthunlocked.com/api/redi...

They may intervene on your behalf against your intransigent doctor.

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

I wish you well.

[clairemallen123]

Hi I live in Gloucestershire do you know where I can get a copy of the Gloucestershire guidelines

I’m seeing my doctor in Tuesday and it would be really helpful to understand what she’s working to

Thanks so much

[deniseinmilden]

I don't know what you are supposed to do but the reality is that you will probably either end up crippled by this condition or you will do like hundreds, if not thousands, of us do and buy your own ampoules from highly trusted German online pharmacies and do your own injections and buy your own supporting supplements. It seems improbable to anyone who hasn't been through it but it's how it is.

[Swinging-Chandelier]

Thank-you for that information, I do live in Gloucestershire and now realise it was a total waste of time going back to my GP. I would be interested to know where you get your supply of B12 for self injection.

[clairemallen123]

Thanks so much the 2004 was the only stuff I could find

[Shellbes]

I too have pernicious anaemia and like yourself don’t know lot about it only feeling tried all the time I’d also like some information on how I can help myself I have b12 injections and have had for years I’m now 40 ?

[Teloch]

5 loading doses? It should be 6, you where lucky though I only got 3 !