GP refusing B12 injections

[SamIam90]

I have been told I have a folate deficiency with a level 3.96, my B12 is also sitting at 440 after countless conversations about reinstating my injections. My GP is still refusing to give them back despite my pernicious anaemia being on my record. Any advice on what I can do?

[wedgewood]

If you have a diagnosis of Pernicious Anaemia , then you should be having B12 injections FOR LIFE . P.A. Is incurable . That is written in the NICE guidelines for treatment of B12 deficiency. ( NICE refers to P.A. as Autoimmune Gastritis. ) You must supplement with folic acid tablets. Your GP should be advising this .

[Nackapan]

Sorry to hear this.My daughter is struggling to get hers reinstated .

When she wax diagnosed hef B12 was 80 something pg/L (200-900) hef gokatd 2 .

Ferritin 9 and also had megobolastic anaemia.

Vit D Low too 19( 75+

All this was when in hospital .

Not even sure IFAB test was done.

Loading doses of b12 commenced

Anc then folic acid high dose iron zbd loading vit D .

Shd had got POTs by very late diagnosis and mis diagnosis of fibromyalgia and chronic fatigue all sorts.

They were symptoms .

After all that and told injections are for life they have cancelled her prescription abd getting an option ftom gastro .

She dhoujd geg them 10 weekly only.

Same happened to me a few times.

Nos reinstated.

Nothing else to date had been found to treat .

As PA notoriously hard to diagnose abd seemingly can take several tests.

With or without your PA diagnosis you need your prescription reinstated .

Havd they stated on what grounds have they been stopped?

Have you written in stating your ongoing symptoms?

Get a face to face appt. With a G.p

Shoujd be on symptoms.

A blood test means nothing on B1e injections as your levels should be high

Whole point.

Hope you get it sorted .

Look through all the info.

[Sailinglady]

Face to face with gp and take nice guidance with you. If that doesn't work, request referral to haematologist. If that doesn't work complain to practice manager, and if that doesn't work complain to the ICB.If you have provided anaemia, you need lifelong injections. If you don't get those injections you are at risk of harm from undertreatment.

[Sleepybunny]

Hi Samlam90,

Welcome to the forum.

Sorry for a rushed reply as I'm going out soon.

I tend to post a lot of info so might be best to read a bit every day over a couple of weeks so it's not so overwhelming.

Some links I post may have details that could be upsetting to read so you may want to have someone supportive read through it with you.

What reason has GP given for refusing to re-instate your B12 injections?

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS members can call the Members Support helpline.

pernicious-anaemia-society....

PAS website has lots of useful leaflets eg

Helpsheet for Patient-GP Discussion

Treatment changed – What can you do?

pernicious-anaemia-society....

Some PAS members print leaflets out for GP.

PAS has support groups in UK and some other countries.

Most meet online. Good places to swap info and experiences.

pernicious-anaemia-society....

PAS have webinars on aspects of PA and B12 deficiency that both you and GP might find helpful.

pernicious-anaemia-society....

They have a page for health professionals that your GP might find useful.

pernicious-anaemia-society....

PAS Blog/News has some interesting posts.

People can leave comments under them.

pernicious-anaemia-society....

Other UK B12 websites

B12info.com

Run by a UK campaigner on B12 deficiency issues.

Lots of useful info and interesting blog posts.

She has an article on writing to GP about B12 deficiency. It has letter templates.

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

B12d.org has online talks about B12 deficiency and monthly coffee mornings near Durham.

b12d.org/event/

The B12 Society

theb12society.com/

If you haven't already, I suggest searching for and reading these UK documents.

1) "NICE guideline B12 deficiency" - published 2024.

NICE stands for National Institute of Health and Care Excellence.

I have concerns over this document, too much emphasis on using oral B12 as an alternative to injections in my personal opinion.

2) "NICE CKS Anaemia - B12 and Folate deficiency" - updated 2024

CKS stands for Clinical Knowledge Summary.

3) Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England. Health Board in Wales/Scotland. Compare them with NICE documents.

If you can't find the local guidelines online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

Unhappy with treatment?

I left links to help those struggling to get adequate B12 deficiency treatment in these threads below.

Patient Safety

(Mentions organisations to contact if unhappy with treatment)

healthunlocked.com/pasoc/po...

Is this the tip of the iceberg?

(Discusses recent increase in UK forum members having B12 injections stopped)

healthunlocked.com/pasoc/po....

This thread was started recently by someone whose injections have been stopped.

healthunlocked.com/pasoc/po...

If you search forum posts with terms "injections stopped" that should show some relevant posts.

There are some listed under "Related Posts" (top right of screen if on computer).

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