Possible B12 deficiency, looking for recommended test list before B12 shot

[genesurf]

I ran across someone posting on Reddit who has symptoms that might be from B12 deficiency... tingling, fatigue, etc. He's vegan, his serum B12 tested high, but he's taking daily B12 supplements so his serum test might not be accurate.

I recommended trying a B12 shot to see if it helped, but then I remembered that it's best to do testing first... MMA, intrinsic factor... umm, what else? I think I saw a list here somewhere but now I can't find it.

Could someone please point me to the testing list, or even pop over to Reddit to offer a spot of help (reddit.com/r/vegan/comments... )? I hate to see people suffer with B12 deficiency when they don't have to. Thank you!

[Gambit62 Administrator]

There is no point in avoiding B12 shot because of the supplementation. MMA/homocysteine would be the tests for a functional deficiency.

However, the symptoms of B12 overlap with a number of other conditions and it might be easier to exclude those first (eg thyroid).

[genesurf in reply to Gambit62]

thank you!

[Nackapan]

If you look through recent posts they have been listed. One I believe was medisave .

If supplements recent it will take a while for symptoms to improve.

The Gp might do the intrinsic factor antybody test as well as usual Thyroid iron ferritin folate vit d FBC.

As one musnt assume dietary and not PA. Although they did with mr eating everything ?? Have to ask ask...

Homosystiene and MMA often suggested om here if b12 serum high.

[genesurf in reply to Nackapan]

thanks!

[fbirder]

Yes, his serum B12 test was accurate. His levels were high because he was taking high-dose oral B12 and has no problems absorbing B12. Injections would be pointless as all they would do would be to raise levels , but in a more painful way.

There are other, more likely, explanations for those symptoms. Perhaps they should see a doctor. And a neurologist for the tingling.

You could try an MMA test, but with sky high levels of B12 its very unlikely that MMA levels would be affected.

[genesurf in reply to fbirder]

My symptoms did not begin to heal until I tried B12 shots, forcing my serum B12 above the top range of the test. No clue why... although lately I've been wondering if maybe my B12 transport was blocked by my methylfolate supplements for MTHFR.

In my case, B12 sublinguals raised my serum B12 into the high range, and MMA, homocysteine, and Spectracell nutrients all looked normal. I saw doctors, saw a neurologist, had an MRI, nerve conduction study, etc. They were no help at all, I was still fatigued and tingling.

Because of the normal tests, I didn't try B12 shots for over a decade. Thank goodness for the online page that said to try B12 shots for all mystery neurological problems no matter what the tests say.

I've found a few other people like me whose symptoms persisted until they used B12 shots. Perhaps once damage has occurred, extra B12 is needed to heal it?

[fbirder in reply to genesurf]

No. Methylfolate cannot possibly 'block' B12 transport.

[genesurf in reply to fbirder]

Well, yes, it can. Apparently.

I was able to move to every-other-week SI after dropping my folate to 400mcg/day. And there's this, which I posted and you commented on some time ago: healthunlocked.com/pasoc/po......

[Sleepybunny]

Hi,

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Link about B12 testing

b12deficiency.info/b12-test...

I wonder if he has had recent tests for folate, ferritin (or other iron tests) and full blood count FBC?

Tests such as MMA, Active B12 (holotranscobalamin) and Homocysteine are likely to be affected by recent supplementation.

BSH Cobalamin and Folate Guidelines (UK document)

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

B12 article from Mayo Clinic (US)

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

It is possible to have Functional B12 Deficiency where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

I wonder when he started taking B12 supplements?

If he only started taking them recently it's possible he could have symptoms from a long standing b12 deficiency that could take time to respond to treatment.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

I am not medically trained.

[genesurf in reply to Sleepybunny]

That's very helpful, thank you! I think I'll just link him to this page, rather than try to relay all this information in case I miss something.

[wedgewood in reply to genesurf]

Very kind and thoughtful of you . 👍👍👍

[Jengastar in reply to Sleepybunny]

Really helpful thanks!

[Frenchiebabe]

Could be diet related as vegan not PA

[genesurf in reply to Frenchiebabe]

That is true. Do you think it is safe to forgo the PA workup because he is vegan?

[Sleepybunny in reply to genesurf]

Hi,

It's possible to have more than one cause of b12 deficiency at the same time .

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

A negative result in diagnostic tests for PA does not always rule out PA.

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.

Flowchart from BSH Cobalamin and Folate Guidelines (UK document)

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK.

[genesurf in reply to Sleepybunny]

Thank you for writing all this up! A lot to consider and work through.