Tests for PA: Do you think it's worth... - Pernicious Anaemi...

Pernicious Anaemia Society

32,172 members23,344 posts

Tests for PA

Nackapan profile image
2 Replies

Do you think it's worth asking for any other tests to see if I have PA. Are there any? I'm receiving regular injections and told I will need injections for life. My intrinsic test negative partal cells negative caeliac negative. I had a 6 week period off injections and my symptoms came back despite a good mixed diet with meat. A sublingual and b12 tablets. I was not anaemic.folate in range albeit lower end. Ferriton in range but dropped quite dramatically in a month. I've not been goven a reason why I stopped absorbing b12 from food. I want to know but wondering if I need a definitive answer? My one and only b12 serum test was 106 (200-900) deemed in range.. I'm nearly 6 months in now. Have alot of symptoms still. Presently on weekly hydroxocobalamin injections. But seem to be stuck.

Written by
Nackapan profile image
Nackapan
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Yellowkangaroo profile image
Yellowkangaroo

Sounds like my experience. No tests show up anything yet got all these symptoms and even on 3 injections a week they still are there and new ones always appearing and worsening. I've not given in and am finally due to have a colonoscopy tomorrow. 3 injections a week can't possibly be not enough and I'm certain there's another cause or reason than just b12 deficiency. I've had lots of tests, stool samples, blood tests, all normal so far. Hoping the colonoscopy will answer the questions... Just don't believe thatb uddenly you can be b12 deficient for no reason at all and not be able to survive on any less that 3 injections a week - ive tried less and feel so rubbish its not worth it.

I thought for 3 months it must just be PA although tested negative for antibodies, thought this is it, never going to get better, but something in me doesn't believe that any more. My b12 was similar to yours, ferritin quite low, folate fine. Not anaemic although got all the symptoms. Its baffling!

Hope you get some answers, I will update if I get any light following colonoscopy that could help in your situation.

Nackapan profile image
Nackapan in reply to Yellowkangaroo

Oh thank you. Hope you discover if anything else going on besides the B12 defiency. The only suggestion made to me was post concussion syndrome as I had a fall 5 weeks prior to collapse and virtigo then clear b12 defiency. I'm on weekly injections at present ( just changed from every other day ) really to see what's what. The medics disagree of course then concentrate on mood and try and give more antidepressants. I even went reluctantly on a trial of 10mg amitriptyline to keep away headaches and migrains . That is ending. Does help some people for pain at 10mg. I felt too drugged . Hope you get on okay with the colonoscopy. Do give an update.

You may also like...

False Positive PA Test

lab that did my test. I had been getting 3 b12 injections per week when I got the tests. I...

getting tested for PA with NHS

few years ago after a blood test I was told on the phone that I was B12 deficient and had PA but...

Petition for new test for PA

available tests are inaccurate. The Schilling Test can accurately diagnose the cause of Vitamin B12...

PA tests negative... how accurate are they?

have all the symptoms of a B12 deficiency, which are mostly relieved by B12 injections. For PA, I...

Further necessary tests for PA

other tests I need to optimise my health ? I've tested positive antibodies for the Parietal Cell...