Hi, my GP recently stopped my B12 injections which I have been having every 3 months for the past year as my intrinsic factor test was negative. I had previously asked for a greater frequency I injections because I was feeling like there were some benefits for a short while but these benefits were short lived.
My serum b12 was reasonable last time I was tested but not really high even then. So I've been taking oral supplements she prescribed for me for the last month or so. I can't see how to these will work as before I started the injections I was put on oral tablets but when retested the b12 level had actually gone down, my diet is really rich in meat and dairy (the things I eat too much of really so I'm sure I have an absorbtion problem). the last injection I had was in July and I'm now really struggling, I'm sleeping 12 to 16 hours some days.
I had a head MRI a while back and it showed some areas of the brain that have been starved of oxygen, I'm awaiting a neurologist appointment but was rung by the consultant the other day to ask a few things prior to seeing me. He is going to arrange some more scans before the appointment to give more information. He says it looks like I've had some kind of stroke and the problems I'm getting on my left side (numbness, burning sensations in hand, arm, leg and feet, vision problems, problems with bed wetting etc) are all consistent with a stroke if done kind.
So I guess it may be this in addition to the b12 are causing the problems, there's a lot of overlap between the two conditions. I also get really bad shortness of breath when I do even mild exertion and I have a real problem with hyperhidrosis.
I'm due to have a B12 test again at the end of November, hopefully the level will have gone down enough that she agrees to give me injections again. Does anyone know if I last had an injection about 5/6 months prior to having a blood test if the blood is test is likely to show a reasonably low serum b12? I know once injections have been commenced the serum b12 level is useless, so could my level still be high despite feeling like I desperately need the injection?
The neurology waiting list is about a year but hopefully I'm nearly there now,
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Yes so my ferritin and folate have been consistently low, below the normal range but she has never really addressed this in any way. I don't think I've ever had my vitamin D level tested.
I started to believe all my symptoms are related to the stroke or whatever it may be as she seems to think, but stopping the injections and now having gone 6 months without the fatigue has definitely got really bad again so I'm convinced it must be the b12 that is at least partially responsible for my symptoms.
I said to her about fact that the oral B12 didn't work before, she said oh you probably just didn't take it for long enough for it to work. I think it was three months I took it before, surely if it was going to work that is long enough for it to at least show it some improvement/increase in blood level?
Your GP is quite ignorant re b12. I would decline a b12 test as they are recommended against in the NICE protocols and ask for your b12 injection. If they refuse I would inform that you will be making a claim of negligence as they are not following the NICE protocol.
However the more important thing is you get injections at the frequency you need. If you look through this site there is plenty of details about how many members of the forum manage this type of situation.
Hi similar happened to me I was very ill before doctors realised I was b12 deficient had an MRI becyatse i was having terrible migraines along with other symptoms ! The MRI revealed I had had a large bleed but my neurologist said it was not a stroke as my blood pressure was like that of a teenagers. I ended up going private to see what was going on as I had also been diagnosed with fibro ! Turned out my b12 was literally on the floor and he was surprised I was actially walking around ! Has regular Jan’s for 13 years now ! Don’t think I’ll ever be quite the same I’ve still got a few problems but I think some is down to getting older as well! Due to cutbacks a few months ago they’ve decided to stop my jabs coz they said my level was high now ! I really can’t be bothered to fight it so I’m self injecting ! I was topping up anyway! Sorry this ended up long
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