A bit confused

[debsydo]

Hi I have recently been told that I have PA my b12 is 117 and my folate is 3. I tested strong positive for parietal cell antibodies , I don't start my loading injections for another 2 weeks as this was the only time the doctors could fit me in. I have just had another blood test for IFA but I'm confused if this comes back as negative does this mean I don't have PA and what happens then? Really don't understand and my doctors haven't explained anything. Thanks

[fbirder]

The positive result for the anti-parietal cell antibodies doesn't necessarily mean you have PA but, in combination with your low B12, it's a fairly good indication. If you test positive for anti-IF antibodies as well then it's a pretty good bet that you have PA.

The problem arises if you test negative as some doctors may see this as a sign that you don't have PA. And they would be wrong to do so. The test often gives a false negative result.

The latest BCSH guidelines - bcshguidelines.com/document... - gives a good explanation.

"The finding of a low total serum cobalamin level may be further evaluated by testing for anti-intrinsic factor antibody (IFAB). If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh, et al 1997), with a concurrent low false positive rate (1-2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40-60% of cases(Ungar 1967) i.e. low sensitivity, and the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA)."

[debsydo in reply to fbirder]

Thanks for this, I should get the results for IFA this week

[debsydo]

Sorry to ask another question but if I test negative for IFA does this mean I wont need to have injections for life?

[Gambit62 Administrator]

Unfortunately the IFA test isn't very specific so even if you test negative that doesn't mean that you don't have PA.

The symptoms of PA are the symptoms of the B12 deficiency that it causes. PA isn't the only cause of B12 deficiency. Unless you are absolutely sure that the deficiency was not caused by a lack of B12 in your diet - eg you are a strict vegetarian and never use any cereals fortified with b12 - then the deficiency will have been caused by an absorption problem - PA is one but others include drug interactions (eg anti-acid treatments, metformin used to treat diabetes, antihistamines, NSAID like ibuprofen ... a very long list), low acidity in the stomach - something that tends to get worse as you get older, gastric surgery affecting the ileum ....

99% of B12 is absorbed through a specialist mechanism in the ileum - the most likely cause of a deficiency is something going wrong that affects this mechanism. Under normal circumstances the body recycles B12 very efficiently by storing it in the liver and then releasing it in bile back through the ileum. As an absorption problem starts up this mechanism becomes less efficient over time. It can take years for an absorption problem - decades even - to become a serious deficiency but it the symptoms usually start to snowball towards the end.

You may find the following books are useful in finding out about what a B12 deficency actually means.

Pernicious Anaemia - the forgotten disease (Martyn Hooper) - Martyn also has a few other books which are all very readable

Could it be B12? by Sally Pacholok et al

The B12 deciency survival handbook

You may also find the PAS website useful along with the following:

b12d.org/

b12deficiency.info/

Getting information out of your GP on it can be very difficult because - despite the fact that it is a relatively common condition - most know next to nothing about it and there are a lot of myths about what it means and even about what is the most appropriate way to treat it.

It is a very serious condition and left untreated will cause your nervous system to shut down and actually kill you.

Sorry to have gone on a bit but I think the short answer to your underlying question is that you will need injections for life.

Some people respond to high doses orally and that can be enough (>1mg a day) but this doesn't work for everyone - very high doses to use the 1% absorption outside the ileum.

[debsydo in reply to Gambit62]

Thank you so much for this, I think I have a better understanding. I'm not a vegetarian but I do not eat red meat, I follow a healthy diet and eat fish chicken veg etc. I was diagnosed with ibs last year and I am now having a lot of systems like feeling shattered all the time, really sore mouth, aching and pin and needles and out of breath, so hopefully I will start to feel more human once I get my injections. Once again thanks for explaining it for me.

[Gambit62 Administrator in reply to debsydo]

Sometimes it can take a while ... and sometimes you can feel a bit worse before you get better but hoping you do start to notice the difference.

Try to find out as much as you can ... this can be quite a scary condition to have - more because of the way it gets mistreated than anything else but there are some good doctors out there.

[oxoma]

As others have said, you should be diagnose with PA on the basis of these results. A positive IF antibody test would help to confirm this but a negative test does not mean that you do not have PA. Good luck with treatment.

[debsydo in reply to oxoma]

Thanks for your comments and advice I have had. I wish I could start my injections sooner as I feel dreadful and my mouth is so sore and I can't find any relief, unfortunately I cannot get into the doctors any quicker. I just hope my doctors are clued up enough if my IFA does come back as negative. Will keep yous posted. Thanks

[Braindead in reply to debsydo]

Hi debsydo. You might find an oral methylcobalamin spray helpful. When I used a one I found it helped with my sore tongue and burning mouth, and over time I think it restored my sense of taste too. I bought it on Amazon, I think it was about £16 and lasted about a month.

[Sleepybunny in reply to debsydo]

Martyn Hooper, the chair of the PAS tested negative on IFA test more than once before testing positive.

Google "BCSH Cobalamin and Folate Guidelines"

This document came out in 2014 so fairly recent. Some GPs are unaware of this document but I believe that the NHS are supposed to be following its recommendations.

The BCSH Cobalamin Guidelines mention "Antibody Negative PA".

I found page 29, a diagnosis flowchart useful...it mentions antibody negative PA. I believe that I probably have antibody negative PA...my IFA tests were negative but I am highly symptomatic and my symptoms have improved since I started to self treat. (I only self treat because I couldn't get treatment on NHS).

Your local CCG can probably tell you if the BCSH Cobalamin Guidelines are being followed in your area of UK. Not sure what equivalent is in Scotland, Wales and NI.

nhs.uk/servicedirectories/p...

Useful articles

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226