Was 20 when i was diagnosed by a blood specialist (haematologist?) with pernicious anaemia. got the intrinsic factor test and all before starting treatment, and the specialist said it was congenital. prior to the diagnosis, i was experiencing quite some brain fog, depression, lost weight, and of course some low b12 and low iron and was hospitalized while i got all the tests done.
for some reason my case was closed without follow up after i took the initial jabs and then taking super high doses of oral supplement of b12.
fast forward many years (12 years later), seems that my B12 was back to normal though I didn't take any jabs or oral supplements for many years. iron levels, full blood count, etc, were all fine, and regular family doctors were suggesting that I am somehow recovered from pernicious anaemia. so i went back to see a specialist again and they sent me to a gastro specialist instead of to a blood specialist, and i retook the intrinsic factor test which came back negative, and the specialist said i don't have pernicious anemia. it seems they did not have a record of me having pernicious anemia though despite it being from the same hospital (then again records weren't quite centralized for a long time).
did anyone have a similar experience that your diagnosis was undiagnosed? or that you got somehow a false positive? It feels like the doctors everywhere seem kind of clueless about the condition. am i worrying over nothing? i'm still getting psychiatric treatment (meds and psychologist) for chronic depression and i get tongue ulcers pretty frequently.
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Dandeli0nsroar
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Yes, I had gotten a positive on the IF test before treatment started.
Haven't been taking oral supplements for at least 8 years. I have been supposing existing stores of B12 would take time to deplete because my blood tests reflect pretty high B12.
I have mild symptoms, but some could also be from depression.
I finally paid some to the hospital and they dug out the old records from when i was hospitalized and now i got a copy of the IF test that came out positive. Apparently that same hospital did not have it in their system until i manually went and made them find it. At least now i know i was not hallucinating 12 years ago. I was severely depressed at that time and I was questioning whether i remembered correctly after misplacing the lab reports (thats on me i guess)....
The IFAB test is not very sensitive and frequently gives false negatives - 40-60% of the time depending on the exact test methodology. It is very specific and rarely gives false positives. As such it is good for confirming PA but can't be used to rule it out. Point this out to the gastro you saw and invite him to confirm it with the labs he is using. It is also covered in the BCSH guidelines but I'm not sure if you will be able to access them outside the UK.
thanks for the article! ah, i'd have to pay quite a fair bit to see a specialist again. since my first test was positive but 12 years later it's negative.. more likely the latter is a false negative instead i guess.
well i get tongue ulcers, chronic depression, weakness and kinda confused at times? that are kinda symptoms but at the same time could be due to depression
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