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Pernicious Anaemia Society
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VERY scared of imminent decrease in B12 injections: what to do now?

Aside from my 2 injections a week, nothing seemed to be happening: reasons why I've got functional deficiency, what can be done etc. so I sent my GP a list of questions, symptoms frequency charts from August onward, and a symptoms list noting where any improvements have been made.....

Saw her this morning: she suggested that this was bordering on the obsessive- which I might have agreed with and told her this was most likely another symptom (!), but I didn't: I called it "desperation" . Anti-depressants got mentioned again (not by me, depression being just one of my many mood-swings and not the most frequent). She does not think that she can justify 2 injections a week with little improvement, and so is bringing them down to 1 a month after my rotator cuff operation (March 29th). Said in a court of law, she could not make a case for this frequency.

I was trying to make the case, using my latest symptoms chart, for more not less: now VERY SCARED.

I told her that I was frightened of getting worse again and that it might be permanent this time. She said that since I have been having 2 a week since October last year, with little improvement.... I asked her if this is all the improvement I can hope for: she said she thought that I was pinning all my problems on B12 deficiency and thinks I have other health issues. I asked her what they were, and she said she did not know, which is why she is sending me to St Thomas' haematologist. She does not, for instance, see my hip pain or diarrhoea, as symptoms. These have been constant since I first went 2 years ago.

What to do now? Part of me says stop this and start SI, another part of me (the obsessive part?) wants to go on to once-a-month so that the haematologist (and Guy's neurologist in May) see me at my worst ! That's weird: yes or no?

3 Replies

What an awful situation to be in. It's not at all weird to want the specialists to see you when you're bad. It's whether or not you can put yourself through that extra time.

If you did start SI and had a positive response that would in some way prove the point.

I agree with your comments on needing answers. I have also said to my GP, if it's not B12 then what is it?

I do hope the referral helps. x


try not to worry too much - you know you have options and sometimes actually being in control of treating yourself can be quite liberating.


You, and all the many others here who have helped me, are the reason that I was well enough and able to provide the research and ask the questions , however poorly this was received.

When I started rapidly deteriorating- when I was put onto 3-monthly injections- I needed my partner with me because I could not speak coherently to the GP, could not understand anything she said, could not find the relevant information in my own notes because I could not read what was written or remember where I had placed it and mostly I either cried or shouted.

Yesterday was nothing like that, and I don't want to go that low again just to prove my case. You are right about taking control of your own wellbeing and how liberating that must be, of course you are. I will get there, but today I just feel deeply disappointed.

This afternoon, I am going in to work with my Dr's certificate. My 6 months are up. Hope this appointment goes better than yesterday's.

And some happy news: 2 of my students from last year are exhibiting their furniture soon - and invited me to the preview !

Thanks, Gambit, don't know how I'd cope without you. Also very good to know Foggyme is about again.

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