Think I have been incorrectly diagnos... - Pernicious Anaemi...

Pernicious Anaemia Society

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Think I have been incorrectly diagnosed - could I possible still have PA?

stephj92
stephj92

For the six or so years, I've been battling stomach problems that have gotten increasingly worse (constant diarrhoea resulting in weight loss of 15kg - i'm now underweight) and increasing tiredness. Due to deficiencies I've had 2 iron infusions and 2 rounds of b12 shots in this time period, despite having a good diet with meat and dairy.

Finally, my GP referred me to a gastro specialist for both an endoscope and colonoscopy in December last year. The only thing they found was chronic gastritis (although I'm told they find this in everyone) and the specialist and nurses accusing me of lying and just not eating (I'm a female in my mid-twenties).

With nothing seemingly wrong, nothing was done. (I have already been tested for coeliac which was negative) When I continued to struggle with my energy levels again in July this year, I made another appointment with my gp to get my bloods done. While my iron levels were fine (I had my second infusion in February last year - the same time I had my first round of b12 shots) my b12 levels were down to 27.

He also revealed that they were 24 last year in November (just months after receiving three shots over the three months) - but he missed it and never contacted me about it.

This time he seemed to take it more seriously, and I received three shots over three weeks, and a test for pernicious anaemia antibody.

While I waited for the results of the test (he went away for a couple of weeks) I found the society online. It was a great help to read all the resources and finally I felt like I had a diagnosis that fit - the stomach issues, tiredness, constant pins and needles and concentration and memory issues. I was excited to finally have a diagnosis and something that could be treated.

Unfortunately, (or fortunately I guess depending on how you look at it) the test came back negative. My doctor then ordered a b12 level test to see how the injections had worked - my levels are up to 600, which is great, yet I have to be honest and that I feel exhausted still, with barely a noticeable difference.

It's also depressing that my GP thinks this is case closed now that it's up to a good level. I'm sure it was up to a good level a year ago after those injections - but why did it drop down to 24 within a couple of months? He just doesn't seem interested.

I have another appointment with a different gastro specialist in 2 months, who will hopefully not just say I'm lying about eating.

I'm feeling pretty depressed at the situation, as I'm sure everyone here understands, I'm just so tired all the time and exhausted at being the only one who seems to take my health seriously.

I was hoping to get some advice - if someone with PA was also incorrectly diagnosed - or misdiagnosed with the antibody test.

And how to bring this up to a specialist without seeming like a crazy dr google person?

Thanks for reading if you made it the whole way through.

5 Replies
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Gambit62
Gambit62Administrator

Presumably the B12 test was active B12 rather than serum B12 but 27 is a low value even for active B12.

Yes your GP's knowledge of many things - B12 deficiency causes and treatment, as well as how to use test results is depresssing - same seems to go for most other GPs

Not sure what test you had for PA - if it was IFA (intrinsic factor antibodies) then you need to point out to your GP that this test is notoriously insensitive and gives false negatives 40-60% of the time. So, whilst a positive is a very good indicator that you have PA, a negative is a long way from proving that you don't have PA. The British Council for Standards in Haematology have produced some guidelines for diagnosing and treating cobalamin (B12) and folate disorders which, whilst not perfect, do give some guidance on interpreting tests that I think should really be on the test results (not that that is any guarantee that GPs would notice them). The standards refer to IFAB negative PA as a recognition of the severe limitations of the IFA test.

If you are UK based you can access here,

onlinelibrary.wiley.com/doi...

and your GP can access them through the BNF.

The guidelines also state that serum B12 and active B12 testing isn't necessary after shots unless there is reason to believe that treatment isn't being followed.

I think the second test your GP has done is serum B12 but the initial tests were active B12 so the results won't be comparable (I'm not sure that 24/27 are actually in the measurable range for serum B12). active B12 tends to be 20% of serum B12 so a serum B12 would mean an active B12 of around 125 - so has already fallen to just in the normal range. It would have been off the scale post your loading dose and then it will fall over time - though how quickly varies a lot from one individual to another.

Levels of 600 post loading shots may be in the normal range for a person who has not received shots but actually the shots introduce a number of factors that seem to leave a significant number of people needing to maintain much higher B12 levels - small scale study I think but the PAS found that on average patients reported needing serum B12 levels over 1000 - some were much higher and some were okay in the normal range. Personally I need my levels a lot higher than that to function now. Nobody is quite sure why there is so much variation and exactly what causes some people to need much higher levels post loading shots but it is an area where some research is going on.

The way to not appear like crazy doctor google is to look for professional publications - either standards or peer reviewed research papers and quote those. It may help to point your GP at the PAS website - particularly the area geared towards helping health professionals improve the diagnosis and treatment of PA

pernicious-anaemia-society....

If the specialist isn't prepared to consider professional standards and peer reviewed research then I'm afraid they are the ones that have the problem ... though that doesn't help you with actually getting the life-giving treatment you need.

stephj92
stephj92 in reply to Gambit62

Both were in fact serum tests - i'm not sure we do the other test at all where i'm from - not the uk.

Thank you for the helpful links and words, i'll make sure i'm armed for my specialist appointment in a few months!

beginner1
beginner1 in reply to stephj92

It may help to post where you are from - you may get helpful advice, how to tackle the system your country runs for B12 Deficiency / PA, from people who also live there.

Your doctor seems to be a 'know nothing'.

PS Mood is one of the symptoms of B12 deficiency, I get very miserable when my B12 gets low.

If you do have PA. which is possible as the Antibody test is notoriously unreliable when you test negative ,it would account for your gut problems ,l have a diagnosis of PA ,and went to a gastroenterologist with my gut problems .He told me that PA parients have low / no stomach acid which leads to gut problems . No treatment for Hypochlorhydria or Achlorhydria. but probiotics helped me enormously (Symprove). Homemade sauerkraut being the best remedy .

iron and b12 and gastritis?!?

please get tested for h pylori!!!

it is a KNOWN "root cause" of b12, iron and gastritis.

you absolutely cannot take any antacids for a minimum of 2 weeks prior to a breath test or longer for a stool sample. if it is a blood test make sure all 3 areas are checked, i think they are IGa, IGg and IGm. doctors like to just test for 1 or 2 and then say you dont have it. breath test most accurate in my opinion. i had h pylori with no heartburn, the classic symptom. but.... i was b12 deficient and was testing to rule it out. i was positive. i later found out both my mom and brother had had it. i asked them why they had not told me. they did not know it is contagious and that is why it runs in families, not hereditary. you drink out of the same glasses and eat out of the same cups.

best of luck and health

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