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any docs or experienced PA patients out there? Advice needed

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Guest
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Hi. I'm hoping someone can help me a little. I'd better tell you my story and my dilemma, but I apologise in advance for rambling!

I'm 27 and have been getting injections every 3 months for about 6 years now. Doctors stumbled across it when testing for other things when I was in hospital. I was initially given injections daily when in hospital for about a week and from then on every 3 months (now 12 weeks exactly since moving to a different doctors). I have never thought anything of it but I started looking on the web for the first time after my nurse advised me to see a doctor before starting to try for a baby as I may need my injections more often. I came across this website (and the pernicious anaemia society website) and have read things which raised a few queries so I'd be grateful if anyone can help.

Does anyone have any info on frequency of injections before and during pregnancy? Also people seem to have been saying they get their bloods tested every year. Is this needed as I have never had mine tested since I was diagnosed. I only ever see the nurse, get the injection and make an appointment for the next one. Even when I was diagnosed I was not given any info on it, I was just told I can't absorb B12 cause I've antibodies so I need injections for life. But now that I've read up about it, I'm a little shocked at what it actually is and the variety of symptoms and problems it can cause. I never really thought of it as a big deal (and I suppose it's not cause there a lot of worse things out there!!). However, I did mention once to the doctor that I feel my injection 'runs out' before the 3 months is up, but he quickly cut me off and said, 'no you'll have enough to last you'. I just assumed the doctors would say if anything was needed cause they know I get injections cause it's on my file, but nobody has ever asked me about what symtoms I still get etc etc, even if I go to the doctors with other complaints. I also suffer a lot from palpatations and missed heart beats - which was investigated in the past (pre-diagnoses) but nothing came back as worrying - although my T-waves are inverted on the ECG - whatever that means. They are getting worse and are becoming frightening now. I've put it down to being stress related but wondering if it could be linked to the PA? I don't want to pester the doctors anymore cause I just feel like I'm moaning and they look at me as it I'm looking for things to be wrong with me - I really don't like going to them, and I feel they would have linked all this together or questioned me about things if it was relevant so I don't want to ask questions as I think they feel I'm trying to tell them how to do their job! I also get very light headed, especially when standing up - which I thought was low blood pressure but the nurse says I'm fine. Get really cold toes and fingers and find it hard grab things when hands are really cold - they seize up.

Sorry for going on a bit, but a lot of things have just dropped into place during the last 24 hours and I'd like some advice and help please if possible. I know it's not life-threatening or anything, but if things can be improved a little that'd be great. But mainly it's just knowing the other little problems are all because of the same thing (PA) and will put my mind at rest that there's nothing else going on.

Thanks a lot and well done for getting to the end of this!!!

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    [color=blue:9d366ff368][/color:9d366ff368]

    Hi Nikki,

    I shall try to be brief. My account was posted in Dec.05 about my wife. Anyone on B12 injections should be tested in my opinion every year at least. Your reading for a woman should be between 190~800ng/L although this varies with age, it gets lower as you get older. My daughter(Nikki, aged 36) was recently diagnosed with B12 & P.A. and lost 40 points in 9 weeks. Injections need to be given initially six over two weeks and then a blood test to establish where the patient is. Then on a two or three monthly regime for life. My son is also B12 deficient as well as my wife. In our case there would appear to be an hereditary cause for my son & daughter although I believe once controlled will no longer be an issue.

    [i:9d366ff368]Please note, I am not a doctor, nurse or have any medical qualifications[/i:9d366ff368].

    I only have two years, first hand knowledge of how dibilitating B12 deficiency can be. I do not wish to be a 'scare monger' that is not my desire, only for doctors to be more aware of damage that can be done if it is not treated straight away and to do the right thing for the patient. You are entitled to a full blood check and to know your results!

    There is a wealth of information on sites such as this one and in general on the internet.

    I hope this is of some help.

    Good luck to you.

  • Guest
    Guest

    Posted

    Thanks a lot for your advice!
  • Guest
    Guest

    Posted

    Thanks a lot for your advice!
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