I just wanted to give an update as I had a call from the doctors this morning and after many months (this time around anyway, overall, more like years!), they have agreed to move me on to injections every 2 months, rather than just every 3 - I want to do a little happy dance!
Basically, they have been monitoring my levels and it is showing a massive drop from when I have the injections to when its due, even though it's just within the 'normal' range. I've been saying for years that I feel like a zombie for at least a month before my injection is due, but until they did this they just kept saying my levels were 'normal' and that it must be something else.
I also had the intrinsic factor test done both via my GP and privately (it took that long coming back on NHS, 3 months, I decided to get it done privately but ended up with the results around the same time) which came back negative, but luckily the note attached to my private one did say that this did not rule out a diagnosis of PA (I don't know about the one my GP ordered).
I think it has also helped that I have been seeing the same doctor every month (sometimes twice) since June for a variety of issues (including my husband's) so he has actually 'seen' my ups and downs - I think this is key because whenever I used to doubt myself it has always been my family and friends who see me regularly who have noticed this. I have to say, he has been really good and taken me seriously which has helped loads.
Of course, the message relayed to me wasn't without a snide remark from the receptionist about the cause being my diet and that, I quote, "need to eat meat" (really, would she say that to someone who doesn't eat it on religious grounds, don't think so!) - hmmmm, if that's really the case why is the doctor not just simply suggesting I take dietary supplements? Oh yes, because I've already tried that and ended up with optic neuritis after they took me off the injections the first time! We all know that being veggie is a risk factor but I know plenty of veggies who are just fine, and also at least 4 other family members who have a B12 deficiently, plus others with possible 'linked' autoimmune conditions - thyroid, MS etc.
Overall though I'm taking the positive from this, I've got what I wanted which was more frequent injections. No closer to a definitive 'diagnosis' but when I can, I'm going to continue with the private tests to see if I can get a few more answers. This is definitely a step in the right direction - persistence pays! I have felt exhausted trying to explain myself and 'given up' numerous times but just shows they can do them more frequently than the guidelines suggest.