This sounds like PA, right? - Pernicious Anaemi...

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This sounds like PA, right?

nikaoo profile image
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Several years ago I would occasionally get short of breath. I realized it might be B12, and specifically PA because I eat a lot of meat, and started getting B12 injections. I would get an injection, go several months without symptoms, start getting short of breath again, get another injection, etc. I had no idea people with PA got injections so much more frequently than this but it kept my symptoms away.

Several months ago I donated blood and then started having heart palpitations (which I have had before years ago) and feeling somewhat weak. A blood test showed low hematocrit. I eat a lot of iron but started taking an iron supp and B12 lozenge. Poor decision but I didn't realize I was possibly anemic/low B12 and donated blood again. The symptoms got worse to where palpitations were keeping me from sleeping at night. I got a B12 injection which almost immediately helped the palpitations, but then I started getting a raw mouth and cold sores and somewhat short of breath again. Over the course of about six weeks I got four B12 injections when symptoms started getting worse, and they would immediately go away except for the weakness which has steadily gotten much worse.

Because of a problem getting enrolled correctly in my military health insurance I couldn't schedule an appointment right away so I was getting injections on my own before I could get tested. I didn't know injections would invalidate your test results so of course the blood test came back over 2,000- very high. (I have also always had low or just barely above normal blood platelets, and at this appointment they were the lowest they have ever been. Maybe an autoimmune condition that is affecting platelets and intrinsic factor?) My Dr wants me to discontinue injections for several weeks and come back but from what I've read here it would need to be closer to four months for tests to be accurate. Like I'm sure anyone would be, I'm desperate to get better a lot faster than that.

QUESTIONS- My understanding is that an intrinsic factor antibody test can be accurate with only a couple weeks off injections but isn't always an accurate test anyway. Is that my only good option for testing without discontinuing injections?

And I'm wondering if there's any other conditions this could possibly be that I should investigate before I put a lot of effort into getting further PA tests or possibility just continue getting injections on my own.

Thank you very much everyone for taking the time to read!

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nikaoo
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Nackapan profile image
Nackapan

Many have the IFA test after 2 weeks of stopping b12 injections. As they are not sure what test the labs use.

A positive is accurate. You have PA.

You can test negative but can have PA but antibodies just not present on that actual test.

Have thyroid tested iron ferritin vit d folate perhaps to eliminate ant other deficiency perhaps if doctor has not already done so.

It's not usually a quick fix. So patience is needed.

nikaoo profile image
nikaoo in reply to Nackapan

Thank you! I will pursue the IFA. I am slightly hypothyroid, have been taking medication for a little while.

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