So I got my private intrinsic factor antibodies test results back today (in case anyone has not read my previous results, I decided to go down this route after waiting since November for ones ordered by my GP - not his fault, think it's the lab being funny for some reason). Came back as negative but the comments from the consultant (as has been described on here before too) were: "Intrinsic factor antibodies are highly specific for pernicious anaemia (PPV of 95%) but have a low sensitivity (40-60%), the absence of intrinsic facto antibodies does not exclude a diagnosis of PA."
So basically, bit frustrating (back to square one I feel, but I know it can be notoriously hard work to get a clear diagnosis), but I wanted to ask, if I was to investigate further down the private route, what tests should I be asking for - I know about the parietal cell antibodies one (it's quite expensive!) but are there any others I should be looking at too?
I've had loads of blood tests done over the years showing low B12 (although sometimes borderline low - not 'low' by NHS standards, say like 200-300, after injections), and I know from the time when they agreed to treat me for life (supposedly!), there are different ones because it was a neurologist who told me there are different tests, after he asked me if I'd been tested and it had come back ok from the one my GP did at the time. Currently, my GP has been looking at my levels from when I've just had my injection to when it's due and it's going from something like 2000 to 300.
Also, has anybody got any experience of sharing these private results with their GP? Obviously I'd like my medical records to be as conclusive as possible but I'm just a bit scared because it says negative and I don't want to be taken off the 3 monthly injections I'm currently receiving (took me long enough for them to commit to that and I suffered some neurological damage in the process).
Help and advice much appreciated. xx