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Confused after conflicting tests, diagnoses, etc.?

hummingbird88 profile image
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I've posted on here a few other times and have honestly felt like the advice I've received here has been more helpful than many of my doctors' appointments!

Quick summary: Went to a new GP in a new city in July with immense fatigue, joint pain, difficulty concentrating, etc. As I am a vegetarian, I had been on daily oral B12 tablets. My B12 tests from that appointment came back around 200, which the doctor thought odd since I had been taking tablets. Further tests revealed a positive intrinsic factor antibody (although negative for parietal cell antibody). GP gave me 1000 mcg/mL B12 shots. I self-injected once a day for 7 days, then once a week for 2 weeks. I noticed after the month of this that I felt marginally better, although not fully. At that point, I had a hematologist appointment, and she said that because my gastrin wasn't elevated and because I didn't have anemia, the intrinsic factor antibody test had likely been a false positive, and I should immediately stop the injections.

That was towards the end of September, and I haven't had a shot since. I've noticed the fatigue returning, although it isn't as bad as it was right before I injected. I saw a new GP since I didn't like the first one, and she thought it was odd the hematologist had been so dismissive, so she retested. B12 now at 400, and NEGATIVE intrinsic factor antibody test.

I'm really confused--this GP is fairly open, and wants to recheck my B12 in 6 months. I'm really afraid it will get worse like it did before the injections during this time, though. Is B12 at 400 a normal rate for someone who injected 9 doses of 1000 mcg/mL of B12 6 weeks ago? Could the intrinsic factor antibody test be a false negative the second time? I'm just not sure what to do and would welcome any advice.

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Gambit62 profile image
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not having anaemia is pretty irrelevant to a diagnosis of PA - despite the name - 25% of people with PA first present without anaemia ... and even if you had anaemia when the injections started it was over month since you started loading shots that could belong enough to mean that a mild case of macrocytosis had become undetectable.

The chances are that the negative IFA was a false negative.

There has been some research into the possibility of using gastrin levels as an indicator of PA - as they generally seem to be off the scale but I'm not sure that it has become a recognised test.

The drop in B12 levels is inconclusive either way. People vary a lot in how quickly excess B12 is removed from blood - and the result is in the normal range again. The normal range is an average and people will tend to have their own level within that range and it could be that 400 is your natural level ... or it could be that your natural level is lower or higher. If it is your normal level then retesting in a few months would show levels that are still around 400.

Think the big thing is that you responded to the B12 and you are now deteriorating without it. Try talking to your second GP and see if she will reinstate the B12 shots based on that.

After loading shots symptoms serum B12 (which is totally skewed as an indicator) and only measures what is going on in your blood not what is happening in cells, is not a useful indicator of B12 status. Sounds as if the GP is willing to listen and work with you. They might be interested in looking at the area of the PAS website aimed at medical practitioners.

pernicious-anaemia-society....

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