Is low b12 a comon problem? Any tips for management?

I’m 74 this year and 14 years post Chronic lymphocytic leukaemia (CLL) diagnosis. The last 18 months saw some things that at first seemed unrelated. A TIA then tremors which the stroke unit said were unrelated but interferedwith my life quite a lot. For example I couldn’t safely make or carry a cup of tea, use the oven, peel vegetables. Lots of tests later and an excellent neurologist has ruled out lots of things and deduced that chronically low b12 has probably been at the root of it exacerbated by the excess white blood cells which in a sense he said leached the b12 from my system. I had a course of b12 injections in October/November followed by tablets daily. (my NHS specialist wrote to my GP surgery). The nurse who gave the injections implied the norm was a periodic (every 3 or 6 months?) injection and tablets daily. Now I know a little more about what symptoms suggest low b12 I have become convinced I need those occasional injections. I wanted to discuss it with my GP but the appointment is still 2 weeks away. I understand if you have too much oral b12 it just exits your body so my thought is to supplement marginally. I was told it could take a year /18 months to reverse the effects and it may not reverse all and I am reluctant to prolong recovery or jeapordise it with a gp surgery that seems very stretched and thus not monitoring the b12. Sorry for long post. I hope it may have relevance to others and would be glad to hear if others struggle with b12 levels.


Hi @nelletap a very good question that I am unable to help you with I am afraid.
Someone might be more help.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses and the Blood Cancer UK support line is there on 0808 2080 888
Look after yourself and please do keep posting how you are.


Hi @nelletap,
I hope you are doing okay today? As you have suggested, it would certainly be a good idea to clarify your treatment plan again at your next GP appointment as you are correct in saying that often B12 injections are given fairly regularly in order to maintain levels. However this can vary as guidance around this and specifications are based on a persons individual cause of B12 deficiency.
The advise within this NHS page may help facilitate the conversation with your GP - Vitamin B12 or folate deficiency anaemia - Treatment - NHS (

Do keep us updated, Lauran


Thanks Lauran.
This is useful info. I do have a clear letter from the neurologist which was copied to the GP emphasising that the tremors etc do seem entirely due to low B12 and also have passed the info to my haematology team and will keep fingers crossed Gp will either enlighten me re their plan or at least have one.

Kind regards


Yes @nelletap fingers and toes crossed for you that your GP will enlighten you soon re a plan or at least have one
Perhaps if you do not hear from your GP in a reasonable time then perhaps contact them.
Be kind to yourself in between and please do let us know what is happening.

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