Newbie Here!!! I just found out two months ago that I had a b12 deficiency.

[jtiaz1]

My b12 level is 120 and about 8 months ago I found out im severe iron anemia. My neurologist is only letting me get shot once a month. I have had two now and I dont feel any different- actually my symptoms are worse. Any help would be great. Thanks

[Gambit62 Administrator]

Did you have loading shots - a group of shots spaced out by a few days before you moved to monthly shots.

From what I have read low levels of B9 (folate) can affect the way B12 is taken up and make it less effective so it may be worth looking at your folate levels. You need B6 as well so it might be worth trying a B complex supplement.

Unfortunately it isn't that unusual for people not to feel better ... and even more unfortunate it isn't unusual for GPs not to believe them.

From what I have read it is very difficult to overdose on B12 because it is water soluble - unlike some other victims. I'm trying supplementing my injections (on the 3 monthly regime) with other forms - trying a nasal spray and also have a spray for under the tongue. Not sure how effective they really are but I don't think I'm quite as tired and certainly not feeling the fogs that I have from 5 weeks after last shot and it's getting towards 8 weeks. There may be a slightly higher risk of tumours from taking high doses of B12 but somehow that feels preferable to being a zombie.

I know I ought to go back to my GP about things but he doesn't seem to know much about B12 deficiency so trying things for myself - it does all seem to very so much from person to person anyway.

[jtiaz1 in reply to Gambit62]

No, I didnt have loading shot. And thats what I have been reading about too. I go back to the neurologist on Monday and Im going to just tell him this isnt working for me and see what he has to say. If he doesnt agree then I will be finding a way to do the loading shot. I just cant live this way anymore. Thanks for the reply. I hope you get what you need soon.

[B12Turbo]

Hi Jtiaz 1

Regarding overdosing on B12, yes it is a water soluble vitamin and yes a great deal can pass out of most bodies quite quickly, however, certain people do suffer from what we call B12 overload, so please be careful, Expert advise is available from Guy's Hospital in London, they have a lab team dedicated to B12 problems. Try calling Denise Oblein on 0207 188 7188, she will point you in the right direction, but please inform Denise of the fact that you are being medicated at present. Just because your B12 seum levels may have risen, this does not necessarily mean your body is making use of the B12 at Cell Level, only a HoloTC test will tell you that, or indeed other further tests as required.

Talk to the experts, if your GP doesn't seem to understand much about B12. sadly many do not, he /she would not be in a minority I'm afraid.

[Hidden]

Since you see a neurologist I'm assuming you have neuro symptoms? Insist on treatment as per the BNF section 9.1.2 and the NICE guidelines, and if they refuse demand to know why. You should be on injections every other day until no further improvement:

evidence.nhs.uk/formulary/b...

cks.nice.org.uk/anaemia-b12...

[jtiaz1 in reply to Hidden]

Yes Im having a lot of issues with walking, holding my arms up, numbness and tingling in my legs feet arms and hands. Weakness and fatigue all of the time. I go and see him today im going to show him thimg info. Thank you much