I was recently diagnosed with B12 deficiency and have had the course of injections, which finished about six weeks ago. Although I am feeling more alive again, I still have a tingling sensation in one hand. Has anyone had experience of this, and was there any recovery following the injections? My levels are now normal.
Frances
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Francesrickard
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Test result levels immediately post loading shots don't necessarily mean that much - unless they are low.
After the loading shots you should go on to have regular maintenance shots (though many find symptoms return well before next maintenance shot is due.
Also, there are different protocols for loading shots with and without neurological symptoms and tingling in your hands should qualify as a neurological symptoms. Assuming that you are based in UK so NICE guidelines apply
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.
Suggest you go back to your doctor and ask why you have only had 6 loading shots when you believe that you have neurological involvement.
Of course it is also true that
a) body takes a while to heal so time may resolve things (though have my doubts - hence recommendation that you get GP to look at loading shots regime they have used)
b) sometimes damage can be permanent if it isn't treated in time - though sounds like your deficiency probably doesn't fall into this category
c) there may be other factors at play - I have carpel tunnel which may have some origins in B12 deficiency and has certainly got better but still flairs up from time to time - particularly as I suffer from water retention just prior to periods.
Hope this helps a little - you will certainly get a lot of support from people on this forum if you find yourself really struggling to get through to the GP.
Hi Frances,
I can only add a bit to what Gambit has already said.
It can take time to notice improvement with B12 injections, months for some more than weeks. Some damage may never go, but as you seem to have neurological involvement I'd ask your GP to give you treatment for those with neurological involvement , (and cks.nice.org.uk/anaemia-b12... as Gambit already mentions), see:
•For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.
•Subsequently, 1 mg is usually given at intervals of three months. There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Care Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[4] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels.
•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]
•Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit.
•Oral iron therapy should be given before B12 if iron deficiency is diagnosed by an absence of stainable Fe in the bone marrow or other parameters (eg, serum ferritin <449 pmol/mL).
Ive had my loading shots and due a top up in 2 weeks ,Yes tingling improved but hasnt gone away yet, I have notice though this weekend my soles of feet have started tingling again and feeling a bit groggy and i seem to be thirsty so going to see dr to see if needing them sooner. Ive been stressed with family issues so dont think that is helping!
Ive seen the guidelines etc but will wait till I see what my Dr says
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