If your intrinsic factor is not working and you have PA would it not still show up on tests even if you are having b12 injections? I know it skews the results I just wondered if it was possible to test positive at all.
Just had a haemotologist apt and test came back negative for PA yet the haemotologist said you have b12 in your tissue because last injected 4 weeks previously though he says it's highly likely you have PA. obviously he said we would need to be off all treatment for 6 months then retest. Not prepared to do that.
My sons original test he had low b12 (164.4) low folate, vit D etc but no blood cell changes. I had the same b12 of 95 yet I had increased variety of red shaped blood cells - anisocytosis. (I have IBS aswell - no found cause when investigated). Does this indicate he may not have PA yet I might? Or bares no relevance at all?
Just mulling things over trying to understand how this all works!
On another note how do you get PA on your medical records if your never diagnosed but haemotologist says you do. Feel a bit of a fraud saying might have PA yet no definitive answer.
Many thanks
SpecialK
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specialk16
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There is no definitive test for PA. the anti-IF test can show that you almost certainly do have PA if the result is positive. But a negative result doesn't mean that you don't have it.
There is a test for anti-GPC (Gastric Parietal Cell) antibodies. If that's negative then you probably dont have PA, but a positive result doesn't mean that you do have PA.
The modern anti-IF test doesn't suffer interference from B12, so supplementation shouldn't affect it. The old test did suffer interference, but even that didn't need to stop B12 for 6 months.
I persuaded my haematologist that I did have PA. on our one meeting he started off by saying - categorically - that I didn't have pernicious anaemia. This was purely on the fact that I hadn't had an anti-IF test. I asked what other expiation he had for the set of following facts - low serum B12, metaplastic gastric atrophy, positive anti-GPC antibodies, symptoms reducing with B12 treatment. He reluctantly admitted I might have it.
I don't know if I have PA on my records, and I'm not at all worried about it. All I care about is getting treatment that works.
The way I see it (and the recommendations of the BCSH) is that low B12 should be assumed to be a permanent problem unless some definite temporary cause can be determined. I don't take PPIs, I don't abuse nitrous oxide, I'm not pregnant, I'm not vegan and I haven't had GI tract surgery. Whatever causes my low B12 isn't temporary. It doesn't matter if they call it PA or a bad dose of slithy toves - the treatment is the same.
So dammed if you do and dammed if you don't on the testing front then!
Do the NHS have modern testing methods?
The haemotologist was lovely, the first NHS doctor to actually listen yet he wouldn't go any further than 1 injection every 4 weeks. He felt he didn't have evidence that more was required. I just feel like I have treated both my son and myself for b12 without doctors help and it's tough to know the right thing to do. Neither of us feel particularly well most of the time yet we are vastly improved since starting b12. It's quite an odd situation. My son doesn't want to self inject as I do twice a week. Still trying to get rid of the dam pins and needles. I just worry about his future and not having that GP support is an issue.
Thank you for your time and knowledge fbirder a wealth of knowledge as usual xx
Yes, the NHS does, on the whole, have modern testing methods. The assay that is not affected by high concentrations of B12 was developed about 10 years ago. The older assay dates from the late 1980s. But I'll bet that's still used in some places.
The old assay gave false positives with very high levels of B12 (more than 2000). The new one doesn't.
I inject once a week to keep the crippling fatigue at bay. I was worried that my neuropathy was getting worse so I saw a neurologist. It turns out my problem isn't B12 related, so I'm stuck with it.
Might be worth seeing a neurologist to get an expert opinion.
Ah, yes, my son saw 4 neurologist- none picked up on b12.
My gp said he wouldn't extend the curtesy to me of seeing a specialist when he finally made apt to see haemotologist for my son. He is a real charmer this gp!
I have little faith in all doctors at the moment, maybe in time. I am loads better just every now and then the fatigue hits and pins and needles usually after 8 hour shift at work!
Many thanks for your info, I shall have a good read.
Don't know where needing to stop for six months comes from in testing for PA, a week to 10 days should be sufficient time to stop. If the test is done to soon after supplementation then there is a chance of a false positive
IFA is prone to false negatives 40% - 60% of the time depending on the exact method used so a negative is a long way from ruling out PA as a possibility, and it still remains the most likely explanation for a B12 deficiency that isn't caused by diet.
PA is sometimes used as a short hand for deficiency caused by any absorption problem - rather than a specific auto-immune condition, so it may be that haemo was a being a bit loose with his terminology and talking about confirming a B12 absorption problem - which would mean laying off supplements for six months.
Like fbirder I don't have a diagnosis of B12 but I do know that I have an absorption problem and need to find non-dietary ways of getting my B12 as a result .... and I manage to sort out the treatment that I need.
B12 deficiency causes macrocytosis because of the part B12 plays in reproduction of DNA and hence the part it plays in the production of normal shaped red blood cells. It would appear that anisocytosis is also more prevalent in B12 deficient patients.
Haemo did start the conversation with I only know a little bit about b12! He said it was prone to false negatives also but I was hoping for more b12 injections say 2 a month but he wouldn't budge. We will find a way round it I am sure.
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