Had letter from Haematologist yesterday morning, and appointment with GP later. Interestingly, although haematologist seems sure that I do not have functional B12 deficiency as originally diagnosed and have an adequate B12 replacement, she has recommended halving my injections to 1 every 2 months which she calls "that stated in the British National Formulary." GP said she cannot go against these findings and recommendations, having sought help in the first place. Surprised it wasn't stopped altogether - haematologist hedging her bets?
MMA levels remain stubbornly raised- so being sent to check for SIBO (small intestine bacterial overgrowth). Folate level is 9.9 ug/L though- and I read that these bacteria create their own folate which ends up in the bloodstream and so would have expected a higher result (?)
I told GP that I thought her original diagnosis was correct, and that my main fear was ending up deteriorating to the point I was at previously (on 1 injection every 3 months). Told her I would prefer to self inject in order to prevent that happening. She told me that her other patient, diagnosed by her a decade ago (impressive work) as having Functional B12 deficiency, is still doing well on 1 injection every 3 months.
If this patient has now set a precedent for treatment of Functional B12 Deficiency for this particular practice, how would a GP know whether this patient is supplementing or not ?
With no specific BNF guidelines for treatment of this condition, and no agreed definitive test method, now I have been undiagnosed, what are my options :
Just to keep on gradually getting everything else eliminated ?
Deliberately allow myself to deteriorate yet again on a regime because it worked for someone else ?
Wait for research?
...or just self-inject (since this is a harmless vitamin) and up my folate level ?
And, if I don't tell GP that I've done this, am I just a success-story patient who "despite initial teething problems, is now doing well on 1 B12 injection every 2 months" ?
I think I have to tell her, don't you ?