Hi I wonder if anyone can help, I am pretty certain my mum needs b12 injections, her level was 146 2 years ago and her Gp gave her loading dose of 6 injections over 2 weeks then stopped,her level was then 480. No maintainable doses, she has chronic fatigue, leg weakness , PMR and age related Degenerative macular disease, neurological symptoms, Gp says B12 is now 245 and states intrinsic factor and parietal cells ok. He has prescribed oral 50mcgs has had for one month and no improvement, can anyone shed any light and do you think cobalamin injections would benefit her?
Many thanks, at wits end.
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niamhdan
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Hi niamhdan Make a list of your Mum's symptoms to present to her doctor and she should ask him to treat her according to her now symptoms and (perhaps) even re-start her on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
It may be that your Mum's doctor is thinking that a level of 245 is within the "Normal" (I hate that word) range, however The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Hi, thanks for quick response, I have been with mum to GP appt and discussed on phone with him, he seems to be poo pooing idea that she needs injections but I can’t understand why they initiated it 2 years ago and then stopped and now feels not needed, I thought you either did or did not. I am a district nurse myself and have researched to the nth degree regarding her symptoms and am totally convinced this is the problem.
I believe the tests are not completely reliable, she is now short of breath, has AFib, Polymylagis rheumatica, poor vision, weakness in legs and chronic fatigue to the point every time she sits down she falls asleep.
I have requested her medical records from last 6 months to try and ascertain a clearer pic of her blood results and was told this could take a month due to data protection. I am very tempted to obtain injections privately and follow NiCe guidelines for neurological treatment of B12 deficiency and see if she responds to treatment.
This is making her so depressed as she is losing her sight, mobility and will to live in the past 6 months.
Desperate for help as prior to this she went to gym 3 times a week, drove, exercised, gardening and the deterioration in her condition is heartbreaking. Seen by Cardiologist and had ECG and echo, both normal and to continue on AFib meds, now referred for lung food nation test, referred to Rheumotogist and appt not till July!
I've given the link for 10 ampoules of B12. If they work then you can buy 100 at a time and it works out a lot cheaper (especially as postage is the same for both amounts).
As a DistricT Nurse you'll be great at doing the injections and, as your mum has already had jabs, there's no chance of her having an anaphylactic reaction.
Thank you very much, I am actually a prescriber and can prescribe privately but not strictly within guidelines to prescribe for family, although I do have a very good case! So will probably have brain from the one you suggested above.
So do you think it is best to trial her on injections and see if she responds? Which is what I’m inclined to do.
I would go back to the GP with the BCSH guidelines mentioned by clivealive and point out that the IF antibody test is very unreliable and that you want to have her put on lifelong injections.
If that doesn't work then I'd goo down the DIY route.
Thank you for that, yes we have had this discussion with him and he said they were of no benefit to her, seriously considering change of GP and have ordered some from Germany to initiate treatment as per NICE guidelines, he seemed very reluctant to listen to suggestion of trial.
How long do injections take to arrive, I have ordered 20 and will treat alternate days for 3 weeks initially.
I also have PA and only have maintainable dose 3 monthly and my GP also reluctant to increase even though my symptoms not fully resolved (still fatigue and pain in n arms and feet) I’ve been on treatment 3 years now.
can take a few weeks for supplies to arrive - usually find mine arrive within a week.
for yourself I would suggest keeping a diary of symptoms to see if they vary with symptoms and use that to decide what frequency you actually need injections
for your mother the guidelines are: shots every other day until symptoms stop improving.
Did you order cyanocobalamin or hydroxocobalamin - on average people retain hydroxo longer which is why the standard maintenance frequency is longer with hydroxo (2 months given neurological symptoms) than cyano (1 month) - but there is so much variation that all you can really do is go by symptoms in determining frequency.
Hopefully will arrive quickly, I have requested Hydroxocobalamin for mum and will do alternate days till symptoms improve, I just hope some of the neuro symptoms resolve, particularly AMD.
I have another appt at my GP and will mention the new BNF guidelines for 2 monthly for myself, would I expect to see improvement with this? If they don’t do it I shall be resorting to doing my own between my 3 monthly by GP.
Thanks for the help , it’s been invaluable and reassuring, will keep you all updated.
I was categorically told that b12 would make no difference to my fatigue (20 year history). My level was in the 200’s after oral supplementation. After 6 injections I am now waking up before my alarm, am able to exercise, no longer need a 2 hour nap every day and am able to do things in the afternoon (pre injections post lunchtime was a write off and simply a game of staying awake).
Sorry for highjacking this post but just want to say, Thank you fbirder for this information, I have just this minute order ampules on line for myself and I'll monitor how I feel feel, as I am not so good at the moment. I am a nurse/health visitor too so will manage fine. I wish your mum well Niamhdan xx
I agree take things into your own hands before any further damage occurs. If PA not diagnosed and she has 12 Deficiency, I would consider a parasite cleanse too just to make sure her B22 is not being vampired. Wormless tonic from Alan Hopking is safe to use. Best wishes and hope she gets some improvement soon.
Thank you for reply, injections arrive tomorrow so will be starting alternate days, what exactly is parasite cleanse? And how would she benefit from this?
Just an update on mum, her fatigue has improved and her legs are not as weak as before, she is managing big to do some activities of daily living without feeling exhausted, it will be 3 weeks on Tuesday since she started on alternate day injections, she is having some good days and some days she is still tired, no marked improvement in vision. How much longer do you think we need to continue the loading dose of alternate days, do you think longer than 3 weeks? I would like every day to be a good day but will this take a long time? She is seeing a rheumatologist on Monday.
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