Not sure what to do

[briarhillcat]

Hello everyone. Yesterday I had a phone call from my surgery to say they were re-starting B12 injections and (am I still interested???) Strange question. I did tell her I was self injecting and she said to let them know what I decide. I am quite happy to self inject, getting on fine, but do not know if I ought to go back to having them at the surgery (I am doing them every 10 weeks which is what my body needs but they say I only need it 12 weeks. (this is the surgery who said in a letter it had been put off for a year! So I wonder if they have had the information from (cannot remember the name - not haematology) They had that meeting some weeks ago and new information came out. So unsure. Anyone else had calls from their surgery to say B12 had been re-instated?

[Nackapan]

Mine have never stopped but I have them less frequently as am prescribed the b12 to SI as well.

Why not ask for it on prescription so you can then inject it when you want to but it will then be on your notes and you stay in the system. ?

I carried on with IM at the surgery every 6 weeks now as do SC at home.

I wasnt sure if there was any difference.

If anything the Sc seems to go on slower and that seems to suit me.

The last IM I had sent me nodding off on a few occasions on the day given and following day not in a relaxed way an ill way.

In your position a prescription I think would work for you.

Just an idea

.

[briarhillcat in reply to Nackapan]

Thank you Nackapan

[fbirder]

I would tell them that I want my injections reinstated. That way you'll be covered if something happens to supplies from the EU (heavens know what might happen after Dec 31st).

You will always be able to top-up at home if you feel that every 12 weeks isn't enough. You could switch to six weeks, alternating between home and surgery jabs).

[briarhillcat in reply to fbirder]

Thank you fbirder

[Cauliflowercheese in reply to briarhillcat]

I think that’s good advice. At least your GP surgery is acknowledging that you need them. My surgery will not reinstate mine as my blood results were normal (even though I’ve developed neurological symptoms) until I see a neurologist. They are injecting again but my GP told me that if mine were resumed they would be every 12 weeks and there would be no negotiation about that.

[Knickersb]

My surgery have started them again but when I was in I was told that everyone across the board are being put back onto 12 weekly jabs (I'm on 10 weekly after having to fight for it) and the only way to be changed again is to get a blood test to see if it's required. It's like 1 step forward 2 steps back.

[Maxie902]

I am amazed at the lack of understanding of B12 deficiency from some GPs. Why would a doctor quibble of over 10 weeks when that is what your body shows it needs?! I am going on to 10 weeks now (previously my symptoms have started to come back at 10/11 weeks) which I am pleased about, but only because I made a fuss after my last injection was delayed by 5 weeks. The impact of that delay was huge - I had really noticeable symptoms and felt off it for weeks. Then I was asked to do a blood test (by this time my symptoms were almost away), and was told if it was normal I could go on to the shorter cycle as it ‘would do no harm’. Of course my levels were fine, and of course it would do me no harm!

So I would insist you get them on the shorter cycle because of your symptoms. At least you know you can continue to self inject if needs be. Good luck.

[briarhillcat]

Thank you to all of you who have answered my question. Yes, I know that if I go back to the surgery they will say "You only need it every three months" It is a Government thing. ha ha.. Do not think so!! Our bodies tell us when we need it. Take care everyone. Briarhillcat Sending Meows to you all.

[Ernest12]

Yes, today. I said I would be interested, but I would also like an active b12 test beforehand to check on my situation. The caller said yes that would be OK, I could have a b12 test, but when I explained that I wanted an active test rather than the usual total b12 test, I was told I would have to speak to a doctor, What a surprise. I think I might have a private one anyway, and see if I can get one out of the NHS to compare...