Not enough B12

[rosiered66]

How do I get my GP practise to give me my jabs more often?

[Gambit62 Administrator]

an old blog that may help

martynhooper.com/2016/09/23...

you can join the PAS here

pernicious-anaemia-society....

[clivealive Forum Support]

I've had P.A. for 45 years and it took me a long time trying to to persuade my "one size fits all" doctor to increase the frequency of my injections but I got there in the end by changing my doctor as the first one just laughed at me and said it was "all in the mind". Even the second one wanted to check almost everything else before she agreed.

Make a list of your neurological symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even restart you on loading doses "until there is no further improvement".

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness. I took my wife - (who used to be a "dinner lady" - "what! you want more?)

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

​I wish you well and hope you get the treatment you need and deserve.

[mountainice in reply to clivealive]

This is what I have been looking for! I have neuro symptoms - numbness in feet. Only just realised recently that 9 years ago I was put on 6 loading doses and 3 monthly injections when I now realise it should have been every other day till no further improvement. So not too late to ask for those then? I was changed to two monthly jabs about 3 years ago after discussion with doctor and every month trial 18 months ago but now doc wanted me back on 3 monthly! Didn't even ask how I was. She compromised to two monthly but now I keep feeling sick again as in the past. I never felt sick on monthly injections. I find it hard to challenge doctors. I would like to go back to loading doses to see if feet improve.

[clivealive Forum Support in reply to mountainice]

It's your life and well-being you are fighting for and if you succeed again you are helping the next patient along who presents the same problems. You are not alone!

Have you thought to join the Pernicious Anaemia Society? It costs just £20.00 for a year's membership and they may intervene if necessary.

[mountainice in reply to clivealive]

Yes, I am in the Society. I think I've had this since 1995 when admitted to psychiatric hospital. 4 months in and 3 months following year. Started at work with background noises coming to the fore and everything else fading away.Extreme anaemia so they thought I was bleeding internally. Had cameras up and down. Started tingling in feet in hospital. Loads of symptoms over time but only diagnosed 9 years ago. Insomnia 30 years. Have extremely sore tongue and mouth. Had it 8 or 9 years. Hospital said burning mouth syndrome. Too many things to tell you but will take husband with me. Battling also for daughter and grandson.

[Sleepybunny]

Hi,

Link about writing to GPs about B12.

b12deficiency.info/b12-writ...

[MariLiz]

I went in to see my GP with my husband as back up. I took a list of the symptoms that were returning in the period on the run up to my three monthly injection. I explained how totally exhausted I was feeling, until I got the next injection. So I basically said that the last four weeks it was as though my battery was running down.

Then I asked, everso politely, would she consider letting me have a trial period of more frequent injections. She agreed. When I went back to discuss the results of this trial, I was able to convince her how much the extra injections had helped me. So now I have one injection every six weeks, and that seems to suit me. Some people need them more often than this. Everyone is different.