paradoxical b12 deficiency - getting injections

[Sarahpoppe232]

hi there I have symptoms of anaemia but b13 comes back high

My anxiety is getting the roof and eyesight etc getting very bad

Super fatigued all the time

So how can I get some b12 injections and see if this helps me ?

[jade_s]

Hi Sarahpoppe232 and welcome to the forum!

I was reading your thyroid post and i think at some point mentioned you were taking b vitamin tablets, so it's not unusual that levels are high. But you can still have a functional b12 deficiency, where the b12 isn't getting into cells.

Do you have any b12 tests or blood panel (red blood cell panel) results from before taking b complex / b12 supplements? What about folate then and now?

As i mentioned on your thyroid thread, there are health spa's that will offer b12 injections, but 1 or 2 will likely not be enough to correct a (functional) deficiency. I will send you a chat message with some information.

[Sarahpoppe232 in reply to jade_s]

the info would be really appreciated - I think if I tried it and it worked I could look into getting it more regularly another way - but just finding the answer would be great

[am111]

any kind of B12 supplementation will boost up serum B12. You may check MMA, homocysteine etc. as they are better. Your symptoms are suggestive of deficiency, so you may need regular injections. You can start with weekly injections and see if it helps. If it does, then around 7-8 weekly injections will be needed to bring the B12 stores up-to-date, then maintenance, which is once/month for cyanocobalamin and once every 2-3 months for hydroxy.

[Sleepybunny]

Hi Sarahpoppe232

Welcome to the forum.

I'm not medically trained.

Take a few days to look through links below and please bear in mind that some links may have details that could be upsetting.

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

b12deficiency.info/what-to-...

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

The link above has letter templates covering a variety of situations linked to B12 deficiency.

Point 1 is about under treatment of B12 deficiency with neurological symptoms.

I suggest putting queries about treatment and diagnosis into a letter as I feel it is harder for GPs to ignore. Always keep a copy.

Has your GP got a list of all your symptoms? Include every neurological symptom.

I used the PAS checklist below and added extra symptoms at the bottom of the list.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

It's vital to get adequate treatment. Inadequate treatment may increase the risk of developing permanent neurological symptoms. In severe cases the spinal cord may be affected.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Membership of PAS is separate from membership of this forum.

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

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

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

Aimed at patients and health professionals.

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

New NICE guidelines for Pernicious Anaemia and B12 deficiency will be published in 2025.

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

nice.org.uk/guidance/GID-NG...

Local B12 deficiency guidelines

I urge UK forum members to find out what's in the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England and Health Board in Wales/Scotland.

If can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

Some local B12 deficiency guidelines in UK are not helpful.

Two useful B12 books

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

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

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

Very comprehensive with lots of case studies.

Many UK forum members here have met health professionals with a poor understanding of PA and B12 deficiency.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

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

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

Help for GPs

PAS have page for health professionals. Your GP can join PAS as an associate member, no charge.

pernicious-anaemia-society....

Club B12

Club B12 is a group of researchers, doctors and other interested people who are looking into B12. They have regular zoom meetings.

club-12.org/

Self treatment

Some UK forum members turn to treating themselves when NHS treatment is not enough.

Some get extra injections from private GPs or beauty salons. Some try high dose oral tablets but these don't work for some people and some as a last resort try self injection (SI).

There is more info I could pass on. Just let me know if you want more.