Pernicious Anaemia Society

Long term b12 user

Hi everyone , I am new to this so hope you can understand what I am trying to say about myself ,

I was 28 yrs and working 8.30 til 5.30 when I felt so ill, you all know ,thin , loss of appetite, pale waxen colour, tired, and the headache from hell. First visit doctor sent me away with a huge bottle of iron tablets, 6 to 8 weeks later I'm back, this time I come away with iron injections, which it had to take to work and get injected in the medical room, no sick notes they were like gold if you could walk you could go, I was feeling much worse and went back another blood test (little blob from thumb) I was given another coarse of injections, on my way out of the surgery I heard the receptionist say my doctor was away next week, after a few days and by this time I was trailing to work feeling I had done a days work just getting there, I went to see the other partner doctor, he took one look at me took a blob of blood on the slide tapped his machine, went next door to try his partners machine and he said he thought his was broken, he said I was very ill, I had to go In the waiting room and he would send for an ambulance .

When I got to the hospital I wasn't allowed out of bed, not even to go to the loo, and I had been to work that morning, in was in hospital for weeks it seemed like a lifetime, every time a doctor or the sister came down the ward it was nearly always for me.

I had test after test, tubes up my nose to the stomach, down my throat to the duodenum, barium X-rays , sternum marrow sample x 2, loads of blood tests, starvation days, drinks loads of water days, schilling tests x 2 .

Now although I thought I was neglected or misdiagnosed in the first place I thought my hospital specialist was the greatest, he never left a stone unturned and he was the best, he made me well again, yes I have PA and also intrinsic factor and I'm on injections for life, that was 48yrs ago.

8 Replies

Great to hear your story. It seems B12 def may have been taken more seriously in the past when there were doctors who could remember it killed people not that long before. Glad you were thoroughly investigated. How often have you had injections since diagnosis?

1 like

Thank you for your reply, I had my load dose in hospital, then monthly for a long time then about 14years ago I was put on 3 monthly, they tried to put me 4months but I couldn't do that I was ill, even 3months after all that time on I month I came down with a bang. Over the years I have had my problems and after joining this group I realise now that some of them have been connected to b12d, at the moment I am having treatment for rhumatoid arthritis and my white cells are down and also my iron I am on iron (blast from the past) .


Thanks. Was that hydroxo or cyanocobalamin? Interesting. My white cell count was down but did not improve after 3 months on B12. Its been 6 months now but hasn't been rechecked. Iron was fine. Why did they change your dose frequency?


I have always called it neo-cytamen , my white cells are low because of the infusion of tocilizumab I get every six weeks for RA , I didn't come away from the hospital years ago completely better , I had a foggy head for a while and also tinitis which got worse and then I went gradually deaf, this is something I have often thought was connected to b12d as it came so soon afterward .


Neo-Cytamen is hydroxocobalamin.


Sorry I didn't answer your question fully, the only reason I was given for stopping once a month was the the GP said it had been found that once a month was too much and excess was flushed out and therefore a waste. But I have asked for monthly again about six months ago because I thought it would help with my white cell problem , I was told my readings were fine and didn't need it. Now last week when they found I was low on iron I had another test , iron, B12 and thyroid still waiting results. Do you know what is causing your low white cells?


Hi no I have no idea. I had thought it might be B12 deficiency related but no improvement at least initially on B12. Will have to get checked again. I think my white cells were 3.5 with 4 as lowest end of reference range. Hope you get monthly B12 again.


Thank you engles, all these years no one has ever said.


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