Hello again from the off-piste Gloucestershire, thank you all for advice and solidarity so far...
So, heard back from my GP, who had been willing at least to take the NICE guideline and various other things like lists of symptoms, tests etc and look through to review. I feel conflicted and not sure what the best thing to do is - I may well phone PAS too.
She has said:
- she spoke to heamatologist who said they almost never see B12 patients as usually dealt with by GP, so they hadn't really anything more to add. Except that Homocysteine testing is not available locally, they don't do it. My GP said she has never seen Active/inactive B12 tested for. She didn't mentioned the TS3/4, nor others like gastrin, that I had listed with reasons, and I forgot to ask on the phone.
- said that I don't have PA (not sure why she thinks she can confirm that, I did later try to ask and said I think I do, she did admit IFA is not reliable test, but that was all).
- said because i only had a low B12 once that wasn't that low (133 on 10/8/18 - I did point out the Dec '17 it was only 190) and I'm not anaemic (ferritin was last tested in Aug =17) & the blood cell things are all in normal ranges, and because I had the 5 loading doses in Sept, and B12 is now in range (293 on 22/01/19......again I pointed out that it is the total not active/inactive and that it is only 4 months after jabs), that it's difficult because I have had what I should have and it's normal. So suggested maybe other causes of the symptoms should be considered, like a trapped nerve (ignoring ALL the myriad other symptoms!)....
- BUT, that if I feel that trying another B12 jab would help they have agreed that they could give me 2 monthly as a trial (not re-start the treatment as per the actual guidance which they didn't adhere to), stressed this is as a trial to see if it helps the pins & needles.
- BUT, she has been told there is a review of the guidelines being done (I think she said that Glos were reviewing, but it may have been National, not sure). She said she hears there is talk of switching to tablets instead of injections "which could be good" (I said I had seen others had been told similar and that there is some concern over tablet efficacy).
- So, this would mean my 'trying' 2 monthly jabs would have to be reviewed after March and I would then have to be treated as per any new guideline (all of a sudden they want to follow the guidelines, even though they didn't in Sept...?!?!).
I have made an appt for jab next Tues, as I am desperate. I told her am almost certain getting B12 will help as it had helped quite a lot after the 5.
But, will basically get one, maybe 2 if I am very lucky and get one mid-April, before it has to be reviewed again for a new guideline.
I feel like a marginal victory in that I can get a jab. hurrah! But feel despondent that there are no further tests forthcoming (esp thyroid ones), no referrals, and a basic premise that they think it is pointless. And so then the next time the symptoms come back because I have not had sufficient B12 (or anything else - they have not even mentioned folate at all), they will say "there you go, that didn't work, it's not that, you can't have any more". I also feel in a way that by accepting this 'trial' offer, I am deemed to be agreeing with them, deemed to be agreeing that they did the right treatment in the first place (which they didn't!!), and that it will muddy the water for any future blood tests as the B12 will always appear to be in 'normal range' .
Help!? Am I going mad? Should I accept the offer of trying a two-monthly, and count myself lucky?
Should I try and change GP practice over the border to Warks or Oxfds and start afresh?
I am thinking of ordering myself a blood test done by one of the online people asap, & before the B12 jab next week, to incl. active/inactive B12, TS3/TS4, Vit D & standard stuff. I have not been supplementing with anything so it would show if B12 has dropped further since Jan and I could put that to the Doc??? As well as some additional info that has not been tested for to date.
Thank you, and hope this may help others. Gloucestershire especially!!!