Hello 👋 I need some advice please.
My gp practice carried out a generic review of b12 patients back in July and they decided I could no longer have b12 injections
I was started on them in 2009 as I had neuro symptoms and chronic fatigue and after repeated visits to my gp I was finally advised my b12 was low and I’d need injections Every 8 weeks (due to neuro involvement) for life. My current gp clearly disagrees!
I attended today, having gone 4 months without a jab, and I have pins and needles in my hands and feet, numb patches on my face and altered sensation in my mouth that has resulted in my biting my tongue when eating (this is becoming quite sore 😔)
My gp had repeated my serum b12. She said it was normal when I was last tested (492 a month before my last injection) and I said clearly that level isn’t ‘high’ so shows my treatment was working so proves there was no need to change things. She then said that I have tested negative for parietal cells and therefore there is a paper that says I don’t need injections and just b12 tablets. I indicated to her that as I have neuro involvement the nice guidelines are clear in that injections are the current nhs recommended treatment, and there are counter arguments to the paper she is referring to.
I said that as my neuro symptoms have returned I would like haematological intervention or a return to my 8 week injection regime. She said she would decide when my bloods come back as my parietal cell antibody was previously negative.
I will fight this because I know that I will become progressively worse without treatment.
My question is:
with levels of 492 in June, and jab mid July even with pa, Are my levels likely to be clinically low yet?
With my neuro symptoms am I right to continue to press for a haematologist intervention?
Does anyone know of paper that indicated tablets will work for those who test negative to parietal cell antibody?