Pernicious Anaemia Society
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B12 neurological symptoms

Hi there, had to go back to GP today as fainted this morning and last Thursday. Hit my head this morning so feeling a little washed out. Very fatigued at moment, rosacea and blepharitis bad at moment and pins and needles leg, hand and feet. & weeks since last injection and asked GP about 8 weekly injections and he just said you can't be deficient if you are getting three monthly injections.

Did not have copy of Bnf guideline and he did want to do blood tests for anaemia and do ecg for palpitations. I can understand that they want to check everything out but my thoughts that I need 8 weekly injections. Due to go back in a few weeks so will print off some more info.

Thinking about taking some B12 sublingual and see if can get 8 weekly injections. Or otherwise maybe self infecting.

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Hidden He will have them but has he read them - mine had not.


He will probably have read the first paragraph. That's where many docs seem to stop. Not other if to go on to the second, where treatment for neurological symptoms is covered.

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BNF gives the medications and how they are licensed for use. The guidelines for treating B12 absorption problems and deficiencies are the BCSH guidelines

There are also the NICE guidelines

which also differentiate between treatment if neurological involvement.

Sorry your GP is unaware/unwilling to admit when they don't know everything but feels it necessary to dismiss you with statements that blatantly aren't true. There is actually no scientific evidence to support 3 months for maintenance shots and there are plenty of things that could mean 3 months just isn't enough. Its just the myth of that's the way it has always been done.

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I gave my GPs a copy of the BSH Cobalamin and Folate Guidelines which have details of recommended treatment if neurological symptoms are present. treatment info is about a quarter through document.

Flowchart below from BSh Cobalamin document summarises diagnostic/treatment process

Has your GP accepted you have neuro symptoms? Pins and needles are normally considered neurological as is tingling, balance issues, memory problems etc

pernicious-anaemia-society.... See PAS checklist

I gave a copy of PAS checklist to my GPs and made sure neurological symptoms were highlighted plus added others that were not on list.

Link about writing letters to GP about B12 deficiency (mainly UK info)

point 1 is about undertreatment of B12 deficiency with neuro symptoms.

I am not medically trained; just someone who has spent years trying to find out what is causing my health issues.

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