Pernicious Anaemia Society

B12 Puzzle

Hi all , this is my first post on this site .

History briefly

Four years ago hyperactive thyroid . After several months of carbimizole I had RAI .

Long story short , started on the Levothyroxine saga with not much success. Recently persuaded Endo to trial T3 which seemed to make me feel worse 😕 .

My question is about b12 .

After dragging myself around , completely exhausted I was started on booster jabs . Every three months I was told .

My bloods in August were 185 ( 190 - 910 )

The next blood test said 547 " "

" " " 1248 " " this was February.

I am feeling unwell so I had a blood panel with Blue Horizon as my next jab was July 22nd and they wouldn't bring it forward .

Phew , just as well b12 a week ago was 1390 ng/L ( 191 - 663 )

Can anyone tell me what is going on. I have had an occasional spray , but nothing regular

Any advice appreciated.

Thanks Pp

2 Replies

Unfortunately it may not just be B12.

Would be good to get thyroid looked at again as treatment with B12 can affect the levels of thyroid medication that you need - so if you have medication then the levels may need adjusting.

Another possibility is that your body is reacting to the additional B12 in your blood by trying to shut down the transport of B12 to the cells causing functional B12 deficiency. Unfortunately if you are in the UK I don't think you can actually get any tests done to investigate that ... and GP would probably laugh you out of the surgery if you asked ... but you may have a good GP who wouldn't.

There isn't much in the literature on treating functional B12 deficiency but what little there is seems to imply that they only thing that works for some people is keeping the levels so high that your body can't make enough antibodies to stop it all getting through to the cell level, so may be that you need a lot more B12 than you are getting.

Some people report feeling better if they get lower doses of B12 ... and that could be another way of dealing with functional deficiency - stopping the levels getting so high that the auto-immune response kicks in - but things vary so much from person to person and there hasn't been any research that I'm aware of so that is all pure speculation on my part. However, the individuals concerned were experiencing giddiness at the times of the maintenance shots which doesn't quite sound like what you are descibing.



Thank you for your reply.

It's complicated isn't it ?

I have a young GP who says he is learning about thyroid problems from me .

I think he might "fall off his perch " if I mentioned functional b12 deficiency lol .

I will show him latest readings and leave the ball in his court so to speak.



You may also like...