(new to forum) Struggling to diagnose/rule out Pernicious Anaemia

[IA30]

Hi all,

I'm new to the forum (and am only in my early days of understanding PA) so apologies if my question is a bit basic. I have read through the guidelines on diagnosis for PA here pernicious-anaemia-society.... and can see it is hard to diagnose conclusively.

I had the following test results a few months back and have been supplementing ever since:

GP tests:

Serum vitamin B12 - 223 ngl/l (145 - 914)

Private tests 2 weeks later:

Folate - Serum - 6.47 ug/L (Range: > 3.89)

Vitamin B12 - Active - 61 pmol/L (Range: > 37.5)

CRP HS 2.2 mg/L (Range: < 5)

Homocysteine - 12.49 umol/L

(Range: 4.4 - 13.6)

However, even with supplementing (with the Ingennus B complex 2 x day) for months, suggestive B12 definiciency symptoms have remained (feel like they've been getting worse!) and I'm wondering whether I'm actually absorbing the B12 or if PA could be an issue. Having read many posts on this forum I'm also starting to feel like maybe my levels are lower than I first thought... the good old "in range".

Apart from the tests I have already taken, how else can I see if PA is an issue?

I have read that intrinsic factor is an important test, but I have high thyroid antibodies suggesting hashimoto's (booked an appt with *another* doctor to discuss this) and can see that the intrinsic factor test notes the following:

"Some people with autoimmune diseases such as type 1 diabetes, Hashimoto thyroiditis, Addison disease or Graves disease may have IF antibodies without having pernicious anemia. The IF antibody test is not used to diagnose or monitor these conditions."

In this case, how can I go about trying to diagnose if PA is the culprit?

I really appreciate any advice you may have.

Izzy

[Gambit62 Administrator]

There are two issues that can be easily confused: a) are you B12 deficient and b) if you are B12 deficient is PA the actual cause.

The homocysteine level would suggest that you probably aren't B12 deficient as it is in range (though it is only looking at one specific process that goes on in your cells and there are some that think it may not be definitive for that reason). The active B12 test would also seem to suggest that B12 may not be the problem

I have to say that the comments about not doing IFAB if other auto-immune conditions are present because of false positives is a new one on me - certainly isn't mentioned in the discussion of IFAB test in the BCSH standards

onlinelibrary.wiley.com/doi...

The general problem with the IFAB test is that it isn't very sensitive so tends to give false negatives about 50% of the time - basically meaning that a negative doesn't rule out PA as a cause of a B12 deficiency.

Do you have any earlier serum B12 tests? if they were significantly higher (20% higher) then that could be suggestive of an absorption problem. Serum B12 is probably more useful as a diagnositic tool if monitoring for downward trends over time but it isn't used that way - it tends to be used as a single point test and it's very difficult to interpret in those circumstances.

Sorry - but there basically aren't any definitive tests available - Schilling test no longer available.

[IA30 in reply to Gambit62]

Thank you so much for this info. I see what you mean about differentiating between the two - I was finding it kind of hard to untangle these at first. Based on a lot of the literature it suggests that although I'm 'in range' I may still be deficient, which might explain some of the symptoms. Trying to build a 'history' of it I do have a serum b12 test from 4 or so years ago that was at 376 ng/l (as opposed to current 223 ng/l) so quite a drop, but then I haven't been supplementing as consistently. I'll be doing some more next week, and if needed might on to IFAB and MMA tests to see if they shed some light on things. Fingers crossed!

[Sleepybunny]

Hi,

Have you considered joining PAS who can offer support and info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

Useful UK B12 document

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

B12 article from Mayo Clinic (US)

ncbi.nlm.nih.gov/pmc/articl...

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.

healthunlocked.com/pasoc/po...

The pandemic is impacting patients' B12 treatment in UK.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're in UK.

healthunlocked.com/pasoc/po.....

Some UK forum members feel their only option is to self treat when NHS treatment is not enough. My personal opinion is that this is a last resort but I was driven to it when unable to get any B12 treatment from NHS several years ago.

I am not medically trained.

[IA30 in reply to Sleepybunny]

Hi Sleepybunny,

Thank you for this info! I've spent most of the weekend digging around links and articles and I think I'm finally getting somewhere Though I've also reached the limit of what I can deduce without blood tests, so no choice but to go ahead with some of these. Thanks so much for this guidance, a starting point/sense of direction is really helpful. I would love to join the PAS, though I feel a bit like I should figure out whether PA is definitely an issue first... Phew... Chicken and egg etc!

[Sleepybunny in reply to IA30]

Hi,

"I would love to join the PAS, though I feel a bit like I should figure out whether PA is definitely an issue"

You can be a PAS member without having a confirmed diagnosis of PA. PA can be difficult to diagnose. Some PAS members have waited over 10 years to get a PA diagnosis.

PAS link about diagnosis

pernicious-anaemia-society....

[IA30 in reply to Sleepybunny]

Ah, I wasn't sure if that was okay, but really glad to hear this - thank you