Pernicious Anaemia Society
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Where can I get the most modern Intrinsic Factor test so I don't have to stop self-injecting?

Hi all, I thought my b12 deficiency was dietary as I've been vegetarian 22 years but I started self injecting with 1mg hydroxycobalamin alternate day loading doses 7 weeks ago and I still find I need it every other day to function. Also my serum level was never that low (550) when I started self injecting so I'm now suspecting it's functional and potentially pernicious anaemia. I just can't bear to stop as I get worse so rapidly. I've read on here about there being a more modern test for IF antibodies that's not affected by b12 supplementation. Doors anyone know the name of this type of test and even better, somewhere I can pay privately in the UK? I checked with medichecks who contacted the Doctors Lab and they confirmed they're using the test that needs you to lay off supplementing for two weeks.

Also, if this is pernicious anaemia rather than a dietary deficiency, do you ever hit the point where your levels build up and you can reduce the frequency? Can anyone give me reassurance that this level of frequency is OK and normal for some people? Cheers guys :)

1 Reply

The only test I know about that's more recent is the one for anti-Intrinsic Factor antibodies. I've had it and it returned positive, which means, essentially, that I definitely have PA (if it's positive then it's a >95% probability that you've got it). However, the test is notoriously inaccurate as it seems to get it wrong as often as it gets it right, which means you can get a negative result but still have PA. As it's a test for the IF antibodies I don't believe it should be affected by the levels of B12 but I'm not medically trained. I'm in Australia so no help to you on where you can get it but presume if you go to a private doctor/clinic you should be able to request it if the NHS doctors won't do it.

If it is actual PA that you have (and not a dietary deficiency) then you should reach a point where your symptoms stop improving (it may take some time - many weeks to months) and then you can experiment with reducing the frequency of the injections but you will never be able to give them up completely, of course. Anecdotally, from reading other entries on this site, you're not alone with needing them so frequently.

I hope this is some help, supersezzie, and that you find somewhere to have the test (but remember a negative is not necessarily proof that you DON'T have it!) and that you start to feel better soon!


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