GP has asked for data/study on safety of frequent B12 injections

[auldreekie]

Can anyone direct me to some data/peer review study or such confirming there is no health risk of frequent B12 injections? I saw one GP who confirmed her understanding of the recommendation of 1mg per 3 months and anymore is unsafe...arghh! My current GP is asking for information - thank heavens!!

[Jillymo]

Hi auldreekie,

This is a reliable study I found on Pas which might be worth putting forward to your Dr............ pernicious-anaemia-society....

This might also be of interest

Health care professionals information......... pernicious-anaemia-society....

Good luck.

[Nackapan]

stichtingb12tekort.nl/engli...

True to copy this to add to Jillymos links

[Nackapan]

Oopherectomy was my mums trigger to PA/ b12 deficiency at 38The menopause for me and my sister the trigger

My daughter hormonal changes when menstrual started ramped up symptoms that had started.

Hormonal triggers grossly underestimated.

I agree with your replies.

I'm also in a better place after 5 yesrs .

I've never gone longer that 5 weeks since b12 injections started ( that was a mistake Nhs)

For me caught / diagnosed at a late stage.

B1e wasnt tested until very ill.

Now on a 2 weekly NHS prescription.

Topped up as I wish from my own.

Gps in my area much more aware .

Mini campaign.

'Ordinary ' tiredness does not exist with this.

Infact probably z good day for me .

I get glimpses of how i used to be .

Pushing through does not work.

I did this not knowing what was wrong for maybe 3 years.

So do act now before you totally crash.

Your body csn only take so much

[Nackapan]

Well that G.p not even read the NICE guidelines of 2- 3 monthly and individual needs. Get them yo read their own guidelines!!!

[Narwhal10]

Hi auldreekie,

You do not necessarily need to give a study. Of that 1 mg/ml injections we only need approximately 0.3 mls, the rest will be excreted out within 24 hours or so.

Tell your GP to ring a pharmacist and ask about Hydroxycobalamin’s half-life.

Pwb lwc

[Cherylclaire Forum Support]

Just to add to the links given by Jillymo and Nackapan:

in Ralph Green's interesting review article in Blood (11 May 2017) " Vitamin B12 deficiency from the perspective of a practicing hematologist", he ends with

"It should be noted that patients with pernicious anaemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice."

Well, I don't know about "excess" B12 intake, just because a cause has not yet been found, but "no reports of adverse effects" means "none at all to be found", don't you think ?

[ Which also means it is useful, in large amounts, for flushing out toxins from a patient.]

[Technoid]

I feel this is shifting the burden of proof. The consensus of clinical evidence indicates that frequent B12 injections are completely safe. There is no single paper that proves safety, it is rather the complete lack of evidence of toxicity. No tolerable upper limit was set for B12 because toxicity has never been confirmed at any dose. It is someone who is proposing that B12 is "toxic", who needs to provide evidence that this is the case. No such evidence exists.

[Sleepybunny]

Hi,

Ask your GP to turn to Chapter 9 Section 1.2 in their BNF (British National Formulary) book and to look at the treatment pattern for those with neurological involvement.

They'll probably have a copy on their desk or bookshelf.

If they haven't got a BNF book then they could use online BNF. See section on Indications and Doses in link below.

bnf.nice.org.uk/drugs/hydro...

These UK documents also include info on recommended treatment. Take the time to read them thoroughly including any background information if you have the energy.

I have some concerns about the document in link below....to my mind there is too much emphasis on treating people with oral B12.

New NICE B12 Deficiency Guideline (published 2024)

nice.org.uk/guidance/ng239

Here's an older NICE document that mentions B12 deficiency, aimed mainly at doctors.

cks.nice.org.uk/topics/anae...

I feel some of the guidance in this conflicts with what's in new NICE guideline.

BSH Cobalamin and Folate guidelines

BSH stands for British Society of Haematology.

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

Please be aware that each ICB or Health Board in UK is likely to have its own local B12 deficiency guidelines and the guidance in these may differ from that in NICE (National Institute of Health and Care Excellence) documents. Local B12 deficiency guidelines are likely to be reviewed this year due to new NICE guideline so keep an eye on them.

Some local guidelines are not helpful. See blog post below.

b12info.com/gloucestershire...

Try to find your ICB/Health Board B12 deficiency guideline.

If you can't find it online or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB in England (Health Board in Wales/Scotland) asking which B12 deficiency guidelines they are using and for a link to or copy of them.

You could also submit a FOI to GP surgery although this might irritate them.

Help for GPs

1) PAS website has a page for health professionals.

They can join PAS as affiliate members, no charge.

pernicious-anaemia-society....

2) Has your GP heard about Club B12?

club-12.org/

It's a group of doctors and researchers across world who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

3) Good articles to pass to GP

From Mayo Clinic, US

pubmed.ncbi.nlm.nih.gov/311...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Recent BMJ article about B12 deficiency by B. Wolffenbuttel

In my personal opinion, he's one of the few doctors who understand B12 deficiency.

bmj.com/content/383/bmj-202...

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

The author of above also wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

Treatment patterns in other countries can vary from UK.

From B12 Institute - Netherlands

Diagnosis and treatment pitfalls

b12-institute.nl/en/diagnos...

From Stitchting B12 Tekort

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

PAS (Pernicious Anaemia Society)

Are you a PAS member?

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

Might be worth joining and talking to them. They might be able to direct you to helpful documents.

Lots of useful leaflets on their website.

pernicious-anaemia-society....

PAS have support groups in UK. They are a good place to ask questions and swap info.

Some meet online and I think some meet in person.

Scroll down page to see next meetings.

pernicious-anaemia-society....

The person who runs B12info.com has supported some people on this forum.

b12info.com/

Unhappy with treatment?

How to write letters to GP about B12 deficiency

b12info.com/writing-to-your...

Thread about Patient Safety

Has links for people having difficult health experiences with B12 deficiency in UK.

healthunlocked.com/pasoc/po...

I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency.

[Sleepybunny in reply to Sleepybunny]

 Technoid made a good point.

Perhaps you could ask your GP to show/tell you about the info/research that more B12 is unsafe or give you the titles of the articles. You could say that you haven't found any articles that say that.

Sadly, some forum members meet doctors and other health professionals with wrong ideas about B12 deficiency. See articles in my other reply.

[JacJab]

I have been injecting B12 once a month for over 40 years there's no danger if you are difficient.