Declining b12

[CanIHaveYourJuiceBox]

Hi all, since my last post my Medichecks active b12 came in at 39, which is borderline.

Doctors retested my serum b12 and it has come down from 209 to 190, when I actually started taking supplements! I fought my GP and had an intrinsic factor antibody test today (haven’t taken b12 since April 27th so shouldn’t interfere).

I also sent a letter with relevant BSH guidelines which state b12 levels under 200 with neuro symptoms, of which I have many, should be treated with EOD injections. The doctors are discussing my case but it sounds like they are going to agree to me having injections. I feel so relieved.

I think I am to assume I have PA, with the fact I:

- already have two linked pre existing autoimmune diseases

- have a father with type 1 diabetes and vitiligo, with one small patch of vitiligo on my hand

- have declining b12 serum levels despite eating animal products and taking supplements

Feeling confident. Hopefully they allow me to have injections as I currently feel awful. I can’t remember a time when my ears didn’t ring, my hands didn’t buzz and my tongue and mouth didn’t hurt.

[fbirder]

The serum B12 test is neither accurate nor precise. Your two results of 190 and 209 are close enough that they are, essentially, the same.

You could take one sample, with a level of 200, test it twice, and get levels of 180 and 220.

[Sleepybunny]

Hi,

Thought I'd add that BSH guidelines indicate that people who are symptomatic for B12 deficiency should be treated even if their serum B12 result is within normal range.

Maybe your GP would like a copy of the summary below?

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Summary and full document contain the line

"In presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment

Which to me means,

if you have the symptoms of B12 deficiency, you should be treated even if B12 result is normal, to stop neurological damage.

If PA is a possibility, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

Lots of useful articles/leaflets on PAS website.

Some PAS members pass them on to GPs.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received in case needed in the future.

"I fought my GP and had an intrinsic factor antibody test today "

If your IFA test comes back negative, it's still possible to have PA.

Does your GP know about Antibody Negative PA?

BSH Cobalamin and Folate Guidelines has some info about Antibody Negative PA.

Below is a link to a diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

PA test

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.

I've written some very detailed replies with more B12 info eg more B12 articles, B12 books and websites in threads below which might be of interest.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.