B12 Side effects

[Rebecca2845]

I am on my second week of B12 injections.. is it normal To have a funny taste in your mouth from the injection and your body be sore with chest pains?

[Sleepybunny]

Hi Rebecca2845,

I'm assuming you're in UK.

I am not medically trained but feel concerned that you mention chest pains.

I think you should contact your GP urgently and mention these.

It may also be helpful to talk to your local pharmacist.

If you feel that that it is a medical emergency, you should ring 999.

BNF link below has a section on side effects from B12 injections.

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

Some people can experience a drop in potassium levels when treatment starts.

Has your GP checked your potassium levels?

Were the following checked?

folate

ferritin (or other iron tests)

full blood count (FBC)

Vitamin D

Forum members often report deficiencies in these.

BNF link outlines two patterns of treatment for B12 deficiency in UK.

1) for those without neurological symptoms

2) for those WITH neurological symptoms

If you have neuro symptoms, are you on the treatment pattern for those with "neurological involvement"?

[Rebecca2845 in reply to Sleepybunny]

Thanks for the response.

My results for my full blood count was high haemoglobin, MCV, MCH and Haematocrit.

I have reported my chest pains and have an appointment at the hospital tomorrow for an X-ray.. going to take my blood results with me and going to try and speak to someone there, as having this discomfort in my chest can’t be right and everything is so slow moving with GPs as I have to wait another week to get blood tests again to see if the B12 helped.

Just don’t feel right at all.. my body hurts and the taste in my mouth is awful it’s like a chemical taste 😢

[Sleepybunny in reply to Rebecca2845]

Do you have results for folate and ferritin (or other iron results)?

I am not a scientist but I think that when B12 treatment starts there may be an increase in production of red blood cells which could lead to more folate and iron being used.

Hopefully someone more scientifically minded will be along soon.

I hope the hospital will check potassium, folate , iron if these have not been checked already.

I am sure they will find answers and it's okay to ask them yourself whether certain things have been checked.

I hope you feel better soon.

[deniseinmilden in reply to Sleepybunny]

You are thinking along the same lines as me! Thank you.

[Sleepybunny]

Some other links about B12 deficiency....

Some links may have details that could be upsetting and some info may be specific to UK.

I suggest you read this over a few days.

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

b12deficiency.info/what-to-...

If you suspect PA or have a PA diagnosis, worth joining PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has useful articles and a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

pernicious-anaemia-society....

What does your GP think is causing your B12 deficiency?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Medical Records

Best advice I ever got was to always get copies of all blood test results.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

UK B12 documents

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above article)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS B12 deficiency and Folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)

Local B12 deficiency guidelines in UK

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links if you have the time and energy.

Some local guidelines have been posted on forum so

1) try a search of forum posts using terms "local guidelines"

2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or "name of CCG/Health Board B12 deficiency treatment algorithm"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to to or a copy of local B12 deficiency guidelines.

I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum as to how B12 deficiency is managed/diagnosed.

b12deficiency.info/gloucest...

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US (aimed at researchers/health professionals)

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK treatment guidance has changed since above blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

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

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxocobalamin link in this reply.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[SigNi]

Hi - I too have had chest pain with high frequency b12 injections. Two regimens 12 years apart. I though it might be from rapid increase in blood volume & it resolved when I backed off on the frequency. I also had a thorough cardio exam just to make sure I’m ok in that department. I also wondered if I’d had some cardiovascular damage from the extended period of deficiency & perhaps the pain was part of the “backing out” phase? Still it can be scary & I had it checked out. Other possibilities include other deficiencies or even imbalances caused by supplementing. Good luck.

[mcg-woo]

My experience was that I had heart palpitations/chest pain prior to b12 injections but I definitely had severe body aches once b12 injections commenced. Good luck, I hope you feel better. B12 injections can be difficult to tolerate at first but the payoff is worth it.

[Hidden]

A metallic taste in your mouth and chest pains is a reported side effect of the Pfizer vaccine. I suggest you speak to your GP or go to A&E if this persists hope all goes well.