just back from gp

[jillc39]

in tears, I might add. She went on and on about rules and medical this and that, until I had to say stop. She agreed to contact my neurologist because when I tried to contact him I got a message saying your gp will give you your b12. Talk about the devil and the deep blue sea.

I told her many people I know (you lot!) self inject and she said on only one or two. is there any way info is gathered about how many DO self inject?

I met a neighbour who has b12 and begged for her b12 ONE day early and she got the same rubbish about it is forbidden. ... legal rubbish. (same practice)

My daughter is about to inject me - I will keep this a secret from the practice.

But its just not right!

[Hillwoman]

It isn't right at all, and you know your GP is feeding you mounds of steaming BS. If you haven't done this, perhaps it's time to gather all the relevant documentation from the pinned posts on the forum and send it with a formal letter to your practice. As a template, you could adapt the one here:

b12deficiency.info/b12-writ...

It may not work, but at least you will get all relevant evidence put on your medical file. You could also request PAS to contact your GP, if you are a member.

[wedgewood]

I had the same experience , so now I self-inject. It is outrageous, as we all know . I told my doctor , but many people don't , as they fear the wrath of their doctor . This allows the doctor to think that 3 monthly injections suffice for everyone . Best wishes to you .

[Hidden]

Consider patches?

[jillc39]

I do the b12 spray but patches don't seem to work. Talk about wrath.... when I spoke about the possibility of self-injecting - I go told to leave.......

[fbirder]

The Stichting Tekort page has the results from their 2015 survey (presumable of Dutch PA sufferers) - stichtingb12tekort.nl/surve...

For their maintenance dosing over half of respondents have injections once per month, or more frequent. 23% have them once a week, or better.

[1capricorn3]

No it isn't right, its very very wrong, to actually deny someone treatment they desperately need & often for the condition diagnosed by the self same doctor, in what other instance would they do this?..indeed how many people come away from a consult with scripts for bags full of pills they neither need nor want..where is the caution about prescribing then?

I can see why some people feel strongly we should tell our GP if we s/inject, there may be many others at your practice who do, (& 100's of other practices) but if the GP doesn't know about them, how can they be made aware that it isn't just the odd patient who cant 'cope' on the given regime.

But others have taken the risk & then been denied the few injections they are granted, I myself opt not to tell the whole truth ( i.e my GP knows I do s/inject but thinks I stick to the NHS 1mg hydroxo/8 weekly, I don't I buy & inject weekly) because I absolutely know she would not condone more regular jabs & I really couldn't deal with the confrontation . Head/wall/hurts. I don't know if it is an option for you, but could you just walk away from all the to'ing & fro'ing, referrals & refusals & s/inject? Wishing you well.

[Foggyme Administrator]

Hi jillc39. Your GP does this to you so often...it's a disgrace.

Agree with Hillwoman . Can you write to your GP staring your concerns / treatment requirements, ncluding all the guidelines, strong complaint etc and ask them to a) write back with a reason for refusing treatment - with evidence (there isn't any!) and b) ask for the letter to be put on your file?

Sometimes works - fear of litigation, if nothing else.

Or change surgeries?

I had similar problems and now just self-inject...a lot less stress and treatment on tap.

Hope you feel a bit better soon 😀

[Gambit62 Administrator]

You could also point your GP at recent radio items

pernicious-anaemia-society....

including a pharmacology professor seriously questioning why standards of treatment are so inadequate.

[jillc39]

thank you all for your very supportive comments -thank goodness we have each other.......