My new surgery has changed how often I can have my injection, help please.

[Rowin]

Hi all, at my old surgery I was being given a Vit B12 injection every 4 weeks. My new surgery has changed it to every 2 months, my pins and needles are back and I am so exhausted and because I sleep so much I have piled the weight back on. They keep doing blood tests saying my Vit B12 is normal, but I am sure I was told I would need 6 to 12 months with no injections to be able to tell this. Any help appreciated.

[Sleepybunny]

Hi,

Many forum members in UK have reported injections being stopped, delayed, frequency reduced, swapped for oral tablets during pandemic.

Check your GP surgery is using the latest BSH guidance on B12 treatment during pandemic, published 24/4/20. See next link to a PAS new sitem that explains the guidance.

pernicious-anaemia-society....

Some parts of UK are using their own local guidance on B12 treatment.

Have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

B12d.org have some online meetings during pandemic.

b12d.org/event

Lots of useful info on B12 Deficiency Info website.

b12deficiency.info/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives

May be worth contacting your MP or devolved representative in Wales, Scotland, NI if you are struggling to get adequate treatment.

Another forum member made an interesting point on another thread that patients should give informed consent for changes in treatment.

NHS Consent to Treatment

nhs.uk/conditions/consent-t...

If I understood correctly, if the change in treatment is part of a research/medical study then it should have ethical approval and be approved by an ethics committee.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.

healthunlocked.com/pasoc/po.....

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Rowin in reply to Sleepybunny]

Ty, I will look into these tomorrow

[dhm0217]

My GP tried to change my frequency from every 2 weeks to once permonth, definitely did not work for me, I was suffering bad rebound of all my neurological symtoms! not gonna alter my schedule again!

[Nackapan in reply to dhm0217]

Yes I had 2 weekly at the surgery. After a long battle!

Then was asked to try tablets to try and decrease the frequency. Pre covid19.

I went along with it as still no t well but keeping away the nastier symptoms.

Three weeks worked a few times but I think overall held me back. I now have a prescription to self inject . I'm going to te surgery 4-6 weeks for IM injections.

I'm trying at present 5-7 days as bought some incase they stopped!!

So good for you two keep 2 weekly.