retraction of diagnosis for PA and uncertainty over what to do about it

[Dandeli0nsroar]

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.

[Nackapan]

Alot of specialists assume PA verbally and do the right thing and treat.

I've found alot if things said don't end up being written.

If you had a blood test for PA IFAB it must be in notes.

You woukd then need injections for life.

In thd 12 years did you have blood tests.

Were you well?

Have you had more blood tests .

Folate b12 levels ect

Mma ?

Have you Bern regularly taking oral supplements?

[Dandeli0nsroar in reply to Nackapan]

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.

[Nackapan in reply to Dandeli0nsroar]

With PA you can't utilise b12 stores from your liver.It's an autoimmune disease .

So a bit of a mystery .

Plenty of links to read through on here.

Hope you can get access to your medical notes for an explanation and your results.

Main think is to have as many tests as possible going by your symptoms.

[Dandeli0nsroar in reply to Nackapan]

thank you for the replies! yes it is just bothering me. it's too rare though so it is as though doctors are confused as well.

[Dandeli0nsroar in reply to Nackapan]

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)....

[Nackapan in reply to Dandeli0nsroar]

Good you persevered to get that paper copy of your results.

[Gambit62 Administrator]

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.

onlinelibrary.wiley.com/doi...

[Dandeli0nsroar in reply to Gambit62]

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.

[Nackapan in reply to Gambit62]

What confuses me is the next 12 yesrs without any treatment ??After a positive IFAB

And no symptoms until now??

[Dandeli0nsroar in reply to Nackapan]

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

[Nackapan in reply to Dandeli0nsroar]

Or the depression caused by low b12

[Sleepybunny]

Hi,

I hope you get the help and support you need.

There may be something useful on PAS (Pernicious Anaemia society) website.

PAS is based in Wales, UK but has some overseas members.

pernicious-anaemia-society....

Other B12 websites

B12 Info.com

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stitchting B12 Tekort - Netherlands, has some English articles.

stichtingb12tekort.nl/

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

Your doctors may be interested in next one.

Club B12 is a group of researchers and other interested people across the world who are looking into B12.

They have regular zoom meetings and website mentions a conference in Cambridge, UK later this year.

club-12.org/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

"i retook the intrinsic factor test which came back negative"

I hope your doctors know that a negative result in IFA test does not rule out PA.

It's possible to have Antibody Negative PA.

Diagnostic flowchart from BSH Cobalamin and Folate guidelines (UK health document) mentions Antibody Negative PA

stichtingb12tekort.nl/engli...

PAS article about Testing for PA

pernicious-anaemia-society....

I'm not medically trained.

[Dandeli0nsroar in reply to Sleepybunny]

thanks so much for the resources! so much to pour through haha. maybe it's just something that confuses everyone