After sending in a 7 page letter to GP regarding stopping my b12, I have had them reinstated, they are going to do the test for PA again and refer me back to gastro. Very happy with this result. Unfortunately I now have a job lot of b12, needles, syringes, swabs that I won't use. clivealive fancy buying at a reduced rate 😁
Just wanted to say thank you to everyone who took the time to comment on my posts. It means such a lot to know you aren't the only one struggling with b12 and getting the correct treatment
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alison687
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Thanks for the offer alison687 but I'm one of the "fortunate" ones who have had mine on prescription, non stop, for 46 years next week - first injection 10th May 1972.
I recall that for years I had to remember to write a note requesting a prescription every four months or so (for five times four weekly vials of cyanocobamalin) and of course had to pay for them - now I re-order online - for free.
I'm delighted that your letter has produced a positive result - it is an example that "persistence pays" and I wish you well for the future.
If you look at bottom right of flowchart it suggests continuing treatment if there is a good response eg symptoms improve even if second line tests eg IFA, MMA, Homocysteine, Active B12 have "normal" results.
Have you considered speaking to PAS? There are stories on Martyn Hooper's blog about how PAS has supported people seeking a diagnosis.
I would keep my stock if I were you . You don’t know what might happen with your injections , as you have been let down before . I think that you will find that the ampoules have about 2 1/2 years use-by date .
I agree with wedgewood - if the dates are good, keep them for "just in case". "Just in case" could be change of GP, Policy-making changes at surgery, advice from consultants, blood test results, pressure put on GP by managers, guideline changes........ nice to feel a bit less vulnerable.
Not to rain on your parade, alison687 - great outcome. Just thinking about a Plan B.
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GP stopped my B12 injections after nearly 40 years
