Quick question, is there any point GP testing blood for intrinisic factor antibodies if i have just finished 6x b12 injections in the last month?
Gp refusing to give continuous injections even though I have quoted regulations from BMF etc , I only started noticing an improvement after No5 but back to square one now as they stopped over a week ago. I wrote the letter and quoted the guidance but its been refused.
I had my test for IF antibodies when I had been using sub-lingual lozenges like sweeties , I had been spraying B12 up my nose and I was covered in B12 patches . Of course I had to go to a private doctor at a Nuffield Hospital, to get the test , because there was" nothing wrong with my B12 serum level at 150, " and my numb feet were ' ideopathic' . . So my blood serum B12 was sky high , but the anti bodies were still there so I had Pernicious Anaemia . I can't think that the anti- bodies disappear when one has injections . If they did we would be cured !
But to answer your question , I still came up positive for the IF antibodies. although I had been supplementing like mad . So certainly in my case , the result wasn't influenced by having supplemented .But I don' t know if that's generally the case .
Thanks wedgewood your description of stuffing b12 up your nose made me smile. I remember somebody mentioned that some tests would be affected by taking b12 so from what you have said it must be one of the other ones. Im shocked they didnt consider 150 indicative of deficiency, mine was 259 and i tend to forget my feet because i cant feel them anymore lol.
Just a note of optimism .... I had to resort to S.I. because my doctor would only let me have 3 monthly injections . I inject weekly now . My feet are no longer numb , they just have a burning sensation .
The antibodies can't disappear when one has injections, but the injections can interfere with the antibody assay.
Older IFAB assays used B12 as part of a competitive binding assay. High levels of B12 would give a false negative reading for the antibodies (anything up to three months after an injection). But your level of 152 wouldn't have been higher enough to affect the assay.
Later assays weren't as susceptible to interference (so a delay of a few weeks would be needed) and the latest assay (about a decade old) shouldn't be affected at all. But you can't be sure which assay will be used, hence the normal advice to lave as long a delay as possible between an injection and an IFAB test.
As an aside, but related: I hope you don't mind my asking, fbirder and you may not know, but I wondered if the B12 injections can also interfere with an antibody assay for other auto immune antibodies, eg thyroid, APS, etc?
I'd be very surprised if it did.
Well yes, it doesn't sound likely, but as a deficiency seems to affect every system of the body...what made me wonder also was that I read recently that supplementing with Biotin can interfere with thyroid tests. And that Hashimotos patients are advised by some specialists to cut out gluten, which implies to me that gluten affects those antibodies. I know Biotin and gluten are not B12 but if they can skew test results/affect autoimmune conditions then maybe other things, including B12 injections, can too. Is my thinking.
This thinking isn't scientific in any way, I know!
I had no idea about all that . Thanks . Every bit of information is valuable .
I don't know it it helpful or not, but I had one I.F before starting jabs and another 6 months later, about a week after a jab and they both came back with pretty much the same numbers, so it didn't seem like the serum levels changed anything.
Has anyone any theory as to why GP's are so reluctant to give maintenance B12 injections It seems to be a shocking state of affairs when so many are forced to self-medicate on what is a serious disorder. Is it something that has cropped in the GP's professional journals? I feel that there is some other protocol they are following contrary to the NICE guidelines... .
I definately think something is going on, who knows maybe they lose a bonus for giving B12 lol mine said "it was unheard of to give Pernicious Aneamia patients more than a 2 week course... Im too ill to fight her but at least my letter requesting it along with my symptoms is on file now.
I think there must be something going on. It is so easy and cheap to administer. I have often wondered about how GP costs work. For instance, a nurse friend told me that GP surgeries are back charged for each referral appointment to see a specialist...£,80 a pop apparently. It had taken me over a year to see an Endo despite several requests from my lung specialist. I am curious about med costs as the Endo has put me on hydrocortisone from prednisolone and it is very much more expensive. Do med costs come out of their budget?
PS... I couldn't get normal b12 loading doses for love nor money, so I just ordered some from Germany and began to self inject. Too ill to argue, but best thing I ever did.
hi Daisy77, if only we could find out how gp costs are worked out , if we did I think it would explain an awful lot, at the moment it just makes no sense my gp would rather refer me than give me the injections i need. Would you mind pm ing me the details of the b12 you get from germany as I think it will be better to go with a supplier that is known to be reliable. I feel awful since my B12 stopped, constant nausea and headaches plus the usual tiredness. Im not functioning at all now
I simply go to the Amazon Germany de site. They have an English version now. I generally order several boxes as the postage is the same. I get needles and swabs from Amazon UK. Oh, and you will need a sharps box as well. I was scared to death at first, but a nurse friend showed me how to do it, now no problem at all. I actually spent the winter last year with my son in the USA, so even more useful. My daft doctor did me a favour if the truth be told!
Good luck!
D xx
I am just a visitor here on PASOC, my usual home being Thyroid UK. So this issue doesn't affect me directly.
The other day I read that the Prime Minister has five insulin injections a day. Strange how that is regarded as OK - even admirable (a) that she gets treated; b) that she can do her job despite the need for injections). Whereas we see a steady stream of people here who have had B12 refused, stopped or reduced in frequency. As for cost, the cheapest insulin I could see on BNF was something like £15 for 100 units. Even if the active ingredient cost were the same, we'd be talking 420 insulin against one B12 (assuming every three months).
Not for one minute saying that diabetics shouldn't get the insulin they need, but it is astonishing that there seems to be such a strong anti-B12 movement. Where quite obviously the potential savings are dramatically smaller.
Come to that, if it were cost only, look how much they could save by supporting self-injection! Especially if B12 ampoules became readily available over-the-counter. They'd also save quite a bit by avoiding near-worthless serum B12 testing and re-testing of those already supplementing.
Update on: GP stopping my B12. Replacing with oral B12.
worsening neurological symptoms B12 only 3 monthly
Intrinsic Factor and Parietel cells been refused b12
B12 refused until blood test results come back!!!
