Problem with GP

[hjcohen]

Hi everyone. I have posted on here before and had some helpful replies so I'm hoping that you'll be able to help again.

Up until before lock down I had a very helpful GP who agreed I needed b12 injections every 3 weeks. However during lockdown I got told that my injections were cancelled. I have had 1 and then when I tried to rebook I was told they are every 12 weeks as per guidelines.

I have been self injecting, weekly at the moment. I contacted surgery yesterday to request that my injections be reinstated or a prescription given so I could self inject. The nurse contacted me today to say that my GP had requested I have a blood test before reviewing my b12 injections. I feel this is ludicrous. I've already jumped through so many hoops many years ago when he agreed I needed them 3 weekly. I don't understand what has changed.

My problem is that I think a blood test now will give an artificially high reading as I've been self injecting and the gp doesn't know this yet.

I've kinda had enough of fighting. I'm not feeling great, a lot of my symptoms have reappeared and I don't feel emotionally strong enough to have another battle.

Any advice would be appreciated.

Thank you.

[Nackapan]

I would write to your Gp.

Say testing not necessary once on injections per bnf guidelines.

State your symptoms.

Ask as it was agreed for 3 weekly I jections and they are being denied you are worried. Also how does he intend to treat you instead. Tablets wont work of tou have PA or an absorbtion problem as they know.

Ask for a prescription.

I have 2 weekly at my surgery but now finally have a prescription. Took months.

Loke you and many others o bought some too to self inject at home.

It's awful and if you struggling write .

It has to be scanned on your notes.

Keep it short.

I think it's disgusting we donr get more guidance and support.

Have to second guess our own treatment.

If you look through these loads on this in posts.

Also advice about letters.

[Nackapan]

With a diagnosis of PA the doctors know you need injections for life.

[Sleepybunny]

Hi,

Sorry to read you are having a hard time.

I agree with Nackapan that it's worth writing to your GP expressing your concerns.

In UK, letters to GP are supposed to be filed with patient's medical notes so hopefully less likely to be ignored.

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 if you are struggling to get adequate treatment.

"I was told they are every 12 weeks as per guidelines. "

Have you asked for a copy of the guidelines they are using so you can check for yourself?

BSH Cobalamin and Folate Guidelines

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

BNF

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

BNF guidance on treating b12 deficiency changed last year.

pernicious-anaemia-society....

GP surgeries may be using temporary guidelines specifically written for pandemic.

Most are likely to use guidance written by BSH for pandemic.

See PAS news item below which explains BSH advice for use during pandemic.

pernicious-anaemia-society....

Scroll down page until you come to part headed "BSH Guidance on Vitamin B12 Replacement during the Covid 19 pandemic.

If your GP surgery is using BSH advice, check they are using the most up to date version, published on 24/4/20/ . I suspect your GP may be using an older version of the BSH pandemic advice.

Some parts of UK have their own local guidelines on B12 treatment which can differ from national guidance.

"The nurse contacted me today to say that my GP had requested I have a blood test before reviewing my b12 injections."

Have a look at the BSH Cobalamin and Folate Guidelines link. There are some useful quotes from this document about retesting of b12 levels being irrelevant.

Testing B12 during treatment

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

English language articles from Dutch B12 website. Units of measurement and ranges may vary from those of UK.

If you think the treatment GP has offered/suggested is affected by pandemic then see this next link where I left a reply about impact of pandemic on treatment in UK.

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.