I am hoping someone will be able to give me some advice. After much back and fourth with the GP, and being referred to the NHS CFS unit due to feeling so foggy headed, fatugued and lacking and various other symptoms, i decided to get some additional tests done for b12 via my private medical insurance. A
s expected my results came back as me being deficient in b12 and she recommended quarterly injections of b12. Whilst i was negative for intrinsic factor because of the other results she advised that pernicious anaemia could not be ruled out and this course of action should be taken.
my results are b12 - 181ng/l, normal serum ferritin level 97.3ug/l, negative intrinsic factor serology and gastric parietal cell serology and methyl masonic acid levels of 0.13 mol/l the specialist has then written 'these results do not exclude a diagnosis of pernicious anaemia.'
Unfortunately there was no option to get them done at the clinic i saw the haematologist at.
I have just called my GP, they were yet to receive the letter (even though sent over a week ago) but i read it over the phone and a bit of an argument happened as she said they were incredibly unlikely to give me these injections because of the intrinsic factor result. I am taking the letter to the doctors today to be scanned so it's on their system and trying to call again tomorrow or Friday. I don't know what to do in this situation. I clearly need this treatment - my b12 has gone down from the august test to the jan test, it's the recommendation of a specialist, but because i don't definitely have PA they are refusing.
they are also pushing back saying i should concentrate on the CFS unit and take the anti-depressants that i was prescribed by them. I don't want to go down the road of taking these tablets. Yes i am low but its an effect and not a cause i am absolutely sure of it. I'm seeing the CFS unit and cooperating with what they are asking - all but the anti-depressants and now that its clear from the test result that i need these injections, they aren't helping.
I don't know what to do... I think i'll need to try my docs again when they have the letter - who have no doubt written i am being difficult in the notes, but if they then don't cooperate i don't know what my rights are - or if i'll need to be referred again or have to pay for the injections privately, write and speak to the specialist etc.
I thought i had finally made some progress and now this happens. Has anyone been in a similar situation, can anyone help? I will pay if i have to, i'm just not really in that great a financial position to do this.
Thanks so much for your advice and support as always.