GP Success: 12 weekly injections now ... - Pernicious Anaemi...

Pernicious Anaemia Society
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GP Success: 12 weekly injections now 8 weekly

swimfitswim
swimfitswim

Following the excellent guidance on this site and the link to the revised guidance from the British National Formulary [BNF] recommending a change from 'every 3 months' to 'every 2-3 months' - my GP has just changed my treatment to every 2 months and issued a prescription! It took a couple of letters and a very brief appointment today but success. GP wants to review in 6 months to check that increasing B12 injections will help [rather sceptical!] and on my part I am going to meticulously record all symptoms from now on - I can't go back to the old regime where I'm wiped out from week 7/8 onwards and hope 8 weekly injections will do the trick. For anyone struggling with their GP's scepticism regarding the value of B12 injections I suggest writing a letter to your GP bullet pointing your symptoms and the timeline, together with a link to the BNF guidance - as this makes it more difficult for your GP to ignore and the correspondence is then on your records !

4 Replies
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Great to read your good news.

"GP wants to review in 6 months to check that increasing B12 injections will help"

If they want to retest B12 levels at 6 months then you could point them to info in BSH Cobalamin and Folate Guidelines that says retesting B12 levels is irrelevant after treatment has started. Some forum members have had B12 injections stopped because their B12 levels were high when retested after starting B12 treatment.

BSH Cobalamin and Folate Guidelines

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

There is some useful info on retesting b12 levels in summary of B12 documents in third pinned post on this forum.

Other UK b12 documents

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

"For anyone struggling with their GP's scepticism regarding the value of B12 injections I suggest writing a letter to your GP "

I agree that writing letters can be useful.

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I am not medically trained.

Hi Sleepybunny

Many, many thanks for your comprehensive reply. I am anticipating some push back from the GP as they took bloods earlier this month when I first asked for an increased frequency and I'm aware from this site and others that the blood tests are not always reliable in terms of determining - so forewarned is forearmed. I only managed to persuade them to give me my B12 earlier before Christmas by being a nuisance and writing letters and hand-delivering to the surgery [no they wouldn't allow me to email the surgery!] and telling them if they didn't then they would have to recommend where I could get a B12 injection at short notice privately! I also told the GP I would be looking into SI as I simply couldn't carry on as I was. Anyway- that would have been my route if they GP had not agreed today to change the prescription and it remains an option if I find that 8 weeks is not sufficient - I'm hoping it will be. I will be keeping a daily diary from now on to record symptoms and monitor the situation. The GP is that a General Practitioner whereas I feel now, after looking into this in more depth, that I'm the consultant in me! I know when I hit the wall despite what the GP and the blood test results show. But anyway - a positive move forward. Thanks again.

I'm glad you have got that sorted

I'm starting on 8 well maintenance I jections only because the neurologist wrote to gp. I only got the 6 loading doses before this.

I'm hoping like you my symptoms will improve . I've booked 1st maintenence 6 weeks after loading doses(Monday) as advice on here was I'd missed the step of every other day which I did. I asked but to no avail. Loafing doses after 2 weeks of being very ill have got rid of alot of symptoms. So here hoping rest will go low for you. Well done for persisting.

Excellent news. My GP did say 8-12 was but I was prescribed 12 weekly. She said she didn't mind what I do so long as I let her know, so Inself inject every 8 weeks and email her. But I also but B12 from Germany and inject inbetween, so it's 4 weekly for me, but I don't tell he that bit. I can't cope with debating my corner at the moment hahaha c

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