B12 tablets not working on about 30% ... - Pernicious Anaemi...

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B12 tablets not working on about 30% of patients - any reports?

Peder1962 profile image
9 Replies

I’ve had the figures that b12 tablets (cyanokobalamin) works for 70% and dont for 30%, but no source for the info. But recently I found that professor Ebba Nexö (Denmark - specialist in b12 - high rank in b12 research) had done a pilot studie and found that little less than 3/4 worked and for little more than 1/4 it did not. This pilot studie was published in denmarks doctors day in november 2021 in danish.

Is there any other reports/studies on the same subject?

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Peder1962
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Nackapan profile image
Nackapan

I don't have reports .I imagine if they did a survey ,they woukd find the percentage b12 tablets worked on were deficiency due to dietary causes or if a medication stopped or alcohol omitted.

The neurologist I saw ( actually for head pain) wS on b12 injections for his deficiency.

He read every paper available.

He was not convinced B12 tablets or sublingual worked.

When there was / still is a drive from gps to stop b12 Injections because of high serum level or a negative IFAB this neurologist was outraged.

Kept repeating...on what evidence .

He wrote to my Gp asking/ condoning to keep me on 2 weekly b12 injections 💉

Initially ignored but then agreed.

A second neurologist asked for his opinion this year too.

He kept me on them.

Perhaps the b12 clinic in the Netherlands would have papers.

PAS will be up to date too.

Also be interesting if thus study went by raised serum b12 or on clinical symptoms maintained. 🤔

Peder1962 profile image
Peder1962 in reply to Nackapan

They measured holoTC - no raise for more than 1/4.

Nackapan profile image
Nackapan in reply to Peder1962

Oh okay so much needed more information/ research needed as we all know.

in reply to Nackapan

I wonder if you could say how you managed to get a referral to a neurologist. My new gp just laughed at me when I asked for 2 weekly injections; then he said that if I had those, I would then want them weekly and then daily. He began the consultation by demanding to know (before I had even sat down), what made me think I had pernicious anaemia! I pointed out a diagnosis with IF antibodies in 2017.

He has referred me to the chronic fatigue syndrome clinic, a complete waste of time.

When I need a b12, as with many of you, my symptoms increase, but I also find that I have disturbed sleep patterns, a fast heart rate and raised blood pressure. Do you think these would warrant a neurologist referral?

Sorry for slight ramble.

Nackapan profile image
Nackapan in reply to

I was referred to a neurologist as couldnt walk after I collapsed .Head seemi guy so heavy stuck.to the floor.

Migraines and vertigo .

Balance and vision problems.

Gambit62 profile image
Gambit62Administrator

links to a literature review of studies, though they were all quite small scale and the measure was serumB12 levels which is problematic

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

wedgewood profile image
wedgewood

I always wonder about such reports . Are the patients in the reports previously tested for Pernicious Anaemia by way of Intrinsic Factor Antibodies test ? Yes I know that a negative result doesn’t mean that the patient doesn’t have P.A. , but if they were all IFAB positive patients , it would be 100% proof of P.A. It has to be very rigorously controlled . GPs are all too ready to believe that tablets can be used instead of injections, causing much suffering

Peder1962 profile image
Peder1962

Professor Ebba Nexö dont recommend b12 tablets to PA patients, so I am pretty sure they are excluded - just regurly low b12 patients.

Cherylclaire profile image
CherylclaireForum Support in reply to Peder1962

Who are "regularly low B12 patients "?

By the time someone in the UK is told that they have B12 deficiency by the usual definition used by the NHS (serum B12 test, with local testing laboratory ranges), it means that they must have used up/ cannot access their emergency B12 supply, stored in their liver.

So I don't understand who might qualify as a "regularly low B12 patient".

To enable a patient to qualify for PA status, they must first get a positive intrinsic factor antibody test result. 40%- 60% of those with PA will get a negative IFab test result anyway, which some GPs will mistakenly take as proof that the patient, although B12 deficient, does not have pernicious anaemia. Given this belief, they would then be unlikely to request a retest at a later date.

wedgewood is right to be wary.

As a person with B12 deficiency without a PA diagnosis, I am also wary of any distinction or distancing between those with PA diagnoses - and those of us with nothing (yet) .

From my point of view, It feels as if we went through the same nightmare.

If a dividing line is necessary, it should perhaps be defined as non-dietary cause vs those whose sole problem is dietary - bearing in mind that being vegan/"strict vegetarian" (whatever that means, often used in research without definition)/ vegetarian does not rule out also having PA or functional deficiency.

Something able to be remedied extrinsically once B12 is reloaded - as Nackapan described above.

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