I took another sad call yesterday. A member of the society was diagnosed fifteen years ago and had negotiated with her GP who prescribed her a monthly injection. And then she moved house to another part of the country. Guess what? Her new GP has told her that she can only have an injection every three months. She protested and so the doctor ordered a blood test and, as you would expect, her B12 was high. And so, the GP has now stopped all injections until June when another test will be taken.
“I’m beside myself with worry. The pins and needles have returned and I’m getting all the mental symptoms back”.
Patients getting their treatment stopped when their B12 is high occurs far too often. The Guidelines from the British Committee for Standards in Haematology states quite clearly that only once should the patient’s B12 be assessed and that is just after the loading doses have been completed to ensure that the injections have worked. But we know that doctors will routinely ask for a B12 test if the patient requests more frequent injections with the unfortunate outcome that the patient’s injections are stopped for three or six months and then the B12 is tested again. We hear of at least three cases every week.
All I could suggest to the member is that she prints off the Update for Medical Professionals which is in the Resources section of the website and hand it to her GP. The Update is a condensed version of the new Guidelines and states that after the initial assessment to ensure the injections worked “no further testing is required”.
“I don’t know what I am going to do” the caller told me. “I’m frightened I’ll develop nerve damage – my Christmas is ruined”.
I reassured her that there are several options available to her including self-injecting which seemed to give her hope. She thanked me and wished me a Merry Christmas. I wished her and her family the same.