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

Pernicious Anaemia Society

31,809 members22,935 posts

Update with Dr

Jessie8 profile image
7 Replies

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.

Written by
Jessie8 profile image
Jessie8
To view profiles and participate in discussions please or .
Read more about...
7 Replies
helvella profile image
helvella

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?

Nackapan profile image
Nackapan

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 profile image
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- sounds like your GPs are very out of date in relation to treatment in the UK.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 profile image
Nackapan in reply to Gambit62

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

fbirder profile image
fbirder in reply to Nackapan

But expensive -

Jessie8 profile image
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

helvella profile image
helvella

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

You may also like...

Update!! Spoken to DR

said my Nuro symptoms ( tingling, numbness, pins and needles, tiredness, brain fog) were very...

Dr ******?

although I have had a “normal”(yeh yeh I know!) short synacthen test he seems to think I could have...

Dr's visit was nerve racking but he started listening...

feeling very unwell my legs had gone hands & feet were burning with pins & needles feeling confused...

Blood results advice - Dr recommended a diet change

mean time I am still exhausted and wondering if diet can help or if I should push for a more urgent...

Update

was any one to speak to about my self injecting. A doctor said she would ring me.I explained how...