Help

[Hayzedawn]

I've been getting b12 injections over 15 years, 3 years ago my GP cut the injections from monthly to 3 monthly due to new guidelines apparently, however since pandemic ive been given b12 kit and doing my own injections, the problem is I still only get 2 ampoules for 6 months, I was wondering if there's anywhere I could buy more?

[Sleepybunny]

Hi,

If you have neurological symptoms then BNF recommends maintenance injections every 2 months.

Some UK forum members find that NHS treatment is not enough for them and resort to self injection (SI) by sourcing B12 ampoules from European online pharmacies.

Have you tried to get GP to increase the frequency of your injections?

My personal view is that SI is a last resort.

Links below are to forum threads where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

There may be some details in the links that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.

[Hayzedawn in reply to Sleepybunny]

Yes I have many times, ive even offered to pay for them but im told the new guidelines suggest we only need a dose every 3 months. Buying them myself is last resort, im getting nowhere with GP

[Sleepybunny in reply to Hayzedawn]

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

If you have a PA diagnosis or suspect you have PA, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership

pernicious-anaemia-society....

PAS website has useful leaflets. Some UK forum members pass these to their GPs.

pernicious-anaemia-society....

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

Not currently taking on new cases but this may change in future.

hdapatientcaretrust.com/

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.

A few people go to the press but I think of this as the nuclear option as likely to permanently affect GP/patient relationship.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

"but im told the new guidelines suggest we only need a dose every 3 months"

In a similar situation I would be asking which guidelines GP was referring to and getting hold of a copy to see if what GP said was true.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

See section on "neurological involvement" if you have neuro symptoms.

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

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

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down a copy and compare it with BSH. BNF and NICE CKS links.

Some local guidelines are unhelpful and differ from the guidance in BSH, BNF and NICE CKS links so worth knowing what you are up against locally.

Some local guidelines have been posted on this forum so worth searching posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to CCG/Health board asking for a copy of local B12 deficiency guidelines.

It is also possible to submit a FOI request to GP surgery.

Hope you are not in the area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is treated.

b12deficiency.info/blog/202...

Have a look at the links to other threads I put at the bottom of my other reply... should give you some info to challenge GP with.....

Apologies for a short reply...I normally write loads but about to eat.

Good luck

[briarhillcat in reply to Hayzedawn]

I had the same problems. New guidelines, only needing B12 every three months! I wonder who decided these 'new guidelines'. as they do not know what they are talking about. They do not have our bodies and the side effects we get from not getting enough. (I just think they are saving money!) I have been self injecting since Covid, every 8 weeks, and getting on well. Now I have to have a blood test to see my levels, and you can bet I will be told "Oh, you only need them every three months!" I wonder what their answer would be if they developed Pernicious Anaemia!

[Maxie902]

I get my injections from the doctor every two months. I had to make a case continually for this because of my symptoms, but I got there in the end. Try and push for the appropriate cycle for you. Good luck

[Hayzedawn in reply to Maxie902]

I've been fighting for it since it changed, but I have been lucky enough to get same kind and make I get prescribed. Due to the covid b12 patients were given kits to do it themselfs, thats when I went to monthly again, its certainly helped me.