Parietal cell antibody test

[Nackapan]

I know I'm repeating myself but want to be clear.

Is it correct that if you test negative for this it's reliable?

I've not had the intrinsic factor test.

I'm asking as I'm getting the vibe as one year in now the surgery want to decrease my B12 injections. B12 was put on my latest blood form after a discussion with Gp who I thought agreed in the end not needed . I've crossed it out. Blood test not due yet. Also a different nurse gave me ' the Spanish inquisition ' when I arrived for my 2 weekly injection.she was totally off with me saying it ridiculous having thrm so often. I wasn't prepared for this and upset me as feeling low . I tried 3 weeks but went back to 2 . Also discussed with Gp.

Last November when I wrongly had a 6 week break (surgery opposing at time continuing every other day) I tried sub lingual and oral b12 with no results.

Still no idea if I have PA or not.

Assume absorbtion problem whatever as some risk factors age ect. Second neurologist wanted cause found and a referral to a haematologist. Not done. He then discharged me at the time wanting me togo on amitriptyline uo ti 50mg.

So a dilemma. No neurologist to read my mri scsn result. No formal diagnosis to keep my B12 injections.

I really don't understand why they put so many through this. It's stressful, unnecessary and costs the NHS more in the long run. Any ideas for my plan of action please.

[Gambit62 Administrator]

This is what the BCSH guidelines say about GPCA test

Gastric anti‐parietal cell antibody

Gastric parietal cell (GPC) antibodies have a low specificity for the presence of pernicious anaemia as, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive GPC antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan et al, 2009).

So basically a positive is inconclusive - but points to PA, a negative is also inconclusive as 20% of people who do have PA give a negative result.

[Nackapan in reply to Gambit62]

Okay thanks. So only 20% that test negative could have PA. So I will assume I haven't PA as no tests are conclusive.

So do you think GPS are relying on theses tests too much in relation to whether you get b12 injections or not??

I've been told from that test I haven't got PA but clearly have benefited from b12 injections and at present still on 2 weekly.

I don't fit any of the 'at risk' on the list of possible causes. I.e not on any drugs or had surgery. Not vegan.

Eat a very good diet .

So if not PA I suppose possible to get that deficient 106ng/l (200-900) given normal range.

To reach that low level on reduced stomach acid from menopause /age and stress ???

So if they try and reduce my treatment should just push on symptoms ??

Any drugs prescribed I've tried have made me worse.

I think having reacheddar the year mark I'm evaluating what to do next.

Any ideas ?

[Gambit62 Administrator in reply to Nackapan]

likelihood is that you have, what the standards call 'IFAB-negative PA' - ie you do have PA just that you are coming up negative in the tests because of the limitations of the tests

In my experience GPs have a very poor understanding of statistics and actually rely upon labs to tell them what tests mean, which wouldn't be a bad idea if the labs actually bothered to really explain what the tests results mean and what the limitations of the tests are, but that appears to be extremely rare.

[Nackapan in reply to Gambit62]

Okay Thank you. I've got more understanding now.

[Wagonwheel]

Your story has many similarities to mine. Initially I had an understanding GP who, once she read the NICE guidelines enabled me to SI. Unfortunately later on she agreed with the neurologist I saw and thought that I needed to 'wean myself off'. I had by that time been SI bidaily for around 6 months then dropped to once/twice a week.

Like many I have only had a clinical diagnosis of PA. Because I've been experiencing increasingly painful stomach ache I'm now pushing to find out the cause of the B12 deficiency as I'm concerned that malabsorption of other vitamins/minerals could have health implications.

Taking control and injecting yourself means you remove the stress of all of this, the uncertainty, I would go down that route.

[Nackapan in reply to Wagonwheel]

Thank you.

So you have got PA. Did Your symptoms of stomach aches get them to retest or did you test positive the first time?

Do you get a prescription or buy online? Yes I get regular 3 monthly blood tests at present as on iron and get for other vitamin defiencys. Hope you get more answers too

[Wagonwheel in reply to Nackapan]

I haven’t had any tests for PA, was told no for MMA, but given a clinical diagnosis. Hoping to get a referral to see a gastroenterologist who may be able to shed more light on stomach issues.

I get a prescription of 3 x 5 B12d ampoules and I bought 100 ampoules from Germany in Brexit panic.

[Nackapan in reply to Wagonwheel]

Okay thanks. Hope you get some answers for your stomach issues.

[SunnyWorld]

Hi I tested positive for IF test abroad I showed my UK doctor the results she refused to accept it she insisted I did another it was negative. The test is unreliable and the positive test should have been accepted.

[Nackapan in reply to SunnyWorld]

Oh how ridiculous. I wonder if the testing should stop until ot is more reliable. What's wrong with a diagnosis on clinical judgement.

I think the skills are being lout on clinics judgement and tests are relied upon roo heavily. Grateful if they are reliable. !! Hope it disn't't change your treatment

[SunnyWorld]

No my treatment stayed the same. She knows the result was correct but won't accept it. Doesn't like me lol.