Update with Dr: Hi all, So spoke to Dr... - Pernicious Anaemi...

Pernicious Anaemia Society
22,426 members15,833 posts

Update with Dr

Jessie8
Jessie8

Hi all,

So spoke to Dr yesterday and gave her all the info regarding BNF,NICE etc.

She is the best Dr at the surgery and she said she still can’t give me more injections as I have had my 5 loading 4 months ago.

I still have to wait until end Feb to see what my bloods show then.

Has anyone gone private and would they take me more seriously?

Have constant pins and needles in arms and legs and aching feeling. Not to mention the muscle spasms.

9 Replies
oldestnewest

Does it actually say anywhere that you should have five loading doses - and never six, seven, or whatever is needed?

And where does it say there should be a four month gap?

And where does it say that serum B12 tests should be done on people already under treatment?

beginner1
beginner1
in reply to helvella

Hi helvella I have only just seen your post.

It says all you have queried in the Gloucestershire Guidelines. 5 loading injections, retest in 3 months, if now in range stop treatment even if you have severe neurological symptoms, unless you pass the IF antibody test for PA when you will get injections every 3 months if you are lucky.

helvella
helvella
in reply to beginner1

Someone needs to take them to task for having guidelines so out of touch with reality.

beginner1
beginner1
in reply to helvella

Appalling isn't it. I am trying to get up the energy to try. They updated in 2004/5. And most of the surgeries and GP's blindly follow.

I've had similar problems. The neurologist was the one that contacted the surgery to get 2 monthly maintenence B12 injections. I paid to see hI'm as the NHS time frame was 18 -40 week wait. It has been poi Ted out to me though on here that the 2nd stage has been missed of carrying on injecting. I went back to gp and have to wait. A private gp surly would give you what you need. Less expensive .

Alot of my nasty neurological symptoms subsided. Left with light sensitivity and exhaustion. I'm going back to go i (if i can get an appointment)if back to any symptoms. In fact I am private gpool a good idea.

My next one is January

Hope you csn get it sorted. The anxiety does not help us

Gambit62
Gambit62Administrator

Jessie8

unfortunately private doctors are as hit and miss as NHS doctors and many can be even more dismissive/ignorant of B12 deficiency.

- sounds like your GPs are very out of date in relation to treatment in the UK.

GPs are bound to use professional judgement, which means that they aren't bound to follow national standards but if challenged they would need to be able to explain why they had not followed them. Has your GP shared with you why they are not following national standards (assuming they are UK based)? and if they are following UK standards.

You could also consider joining the PAS and contacting them as they may be able to intervene directly on your behalf with your GP - though the first step would always be to write setting out national standards (copy to practice administrator) and asking to be treated in accordance with those standards. You should be entitled to an explanation of the standards they are following.

pernicious-anaemia-society....

pernicious-anaemia-society....

Injectable B12 is covered by prescription only rules in the UK because it is injectable. This only covers its use for medical purposes. Injectable B12 is also used as a beauty treatment/pick me up and there it isn't covered by prescription only rules. So, that would be another option ... as would sourcing and injecting yourself.

Nackapan
Nackapan
in reply to Gambit62

Didn't think of the beauty /treatment options. Useful thanks

fbirder
fbirder
in reply to Nackapan

But expensive -

Jessie8
Jessie8
in reply to Gambit62

Thanks so much. I’m going to join PAS and see what they can do. Think that’s the only way forward xx

You may also like...