Diagnosed at last!

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It has taken a referral to a private hospital to discover that I have pernicious anaemia. My serum Vitamin B12 level was 78 that my consultant says was [b:5c901319e3]very[/b:5c901319e3] low. Although I have been complaining of tingling hand and feet, shortness of breath, balance difficulties

and memory loss for well over a year it was only last December that the culprit was discovered.

Unfortunately neurological test show that I now also have slight neuropathy and it is suggested that this will not get better and that I will be left with the tingling and numbness in hands and feet.

Although it is now one month since I had the 6 loading injections I do not feel any better and in some respects I feel worse with still having to rest every couple of hours or so and now I am concious of my lips feeling 'funny' and tingling at the tip of my tongue. I also have a constantly sore stomach. My doctor will not test the B12 levels again as he says they will now be high.

Should I be worrying :?:

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8 Replies

  • Posted

    Hi VRW

    I haven't got pernious anaemia, my stomach was not absorbing B12. i have no idea how long i was b12 deficient but it must have been for a while to feel the way i was feeling.

    I became really depressed and wanted to self harm my mind was working overtime but my body didnt want to work, i couldnt understand what was happening to me and it frightened me to the point where i decided to investigate my symptoms as the doc was treating me for depression i looked up on the net, read library books on what can cause depression, at first i thought it might be thyroid problems as my mother had hyperthroidism then i read that thyroid problems can effect your b12, so i i asked my doc to test my B12 and thyroid, my thyroid was borderline for over active and there it was i was B12 deficient (not as low as you i must say) doc's look for your haemoglobin to be low and your mcv (i think) to be high before they test your B12 in my case they were normal. It makes me wonder how long i would have been treated for depression when in fact it was my B12.

    Anyway, im going on a bit, what i wanted to say to you was i started my B12 injections the beginning of Dec 09 i didn't feel any benefit at first and the past week ive started to feel good again im getting my energy back

    im happy! the anti-depressants i stopped a month ago, the thing is i dont know if i will have any permenant effects from being B12 deficient, but i can assure you i will be wanting answers from my doctor if i do!

    Good luck, im sure you will see an improvement just give it time.

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  • Posted

    Following a recent blood test I have been diagnosed with B12 deficiency. Doctor said my reading was 180 so not anywhere near as low as some of your correspondents. I have suffered some of the symptoms as described by others, mainly tiredness, swollen hands and pain in the feet. Over the years I have had regular blood tests which, apart from slightly high cholesterol have been normal. Six months ago I had keyhole surgery to repair a hiatus hernia and have noticed the symptoms following this.

    It may be coincidence but would such surgery effect the deficiency of B12.

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  • Posted

    So sorry that you have been left with un-reversible symptoms. When I was diagnosed 5 years ago it took several months for me to feel in control of my body and emotions and when I need 'Re-Booting' every 11 weeks I often feel so tried and tearful for the last few days or weeks depending on my work levels.

    I wish you all the best, at least you've been diagnosed, things will get better.

    C4thy x

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  • Posted

    Hi C4thy

    When initally diagnosed as B12 difficient my blood reading was 180 and I was prescribed 6 injections to be taken every two days. On completion of the course I felt absolutely terrible with most of the symptoms as described by others. Three weeks later I had another blood test which gave a reading for B12 of 1946.4. (Normal scope for B12 is 200 to a maximim of 800. There is no antidote.You just have to suffer the overdose until it subsides. I have never taken drugs in my life but if this was "cold turkey" then I never want to experience anything like it again. Please be warned.

    ianb

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  • Posted

    To iamb

    Thanks for the warning!

    My injections have never given me a dose that is too much, my issue is with my demanding job that I refuse to take a day off with ( I agree, you have to get on with things) and with my untreated levels being 08. I find my body burns through the replacement to quickly and they are now considering making my injections every 10 weeks.

    At least my low levels gave me an early and quick diagnosis which I am so grateful for.

    Warmest Wishes

    Cathy

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  • Posted

    I was diagnosed with PN over a year ago, the Doctor told me that my B12 was in 'My boots' so I had the loading injections of 4 in a 7 day period, and now have a B12 injection every 3 months. Which I think is standard 'Doctor' practice. The biggest help for me was the diagnosis that I had a problem. It is a confusing world when each day you want to commit suicide and know this is not in your nature. I would say I was diagnosed late so do have physical symptons, mainly pains in the hand and sometimes the feet that have never gone away and are getting worse far worse for my daughter who at 28 was diagnosed with MS
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  • Posted

    Hello

    After years of visits to the GP with weird things dizzy numbness and a barrow of other illnesses i was found to have pernicious anima. B12 injections every 3 months DO NOT WORK. Every day your body needs 2.4mg of B12. if it cant come from your food anymore it has to be injected or your marrow bone will make enlarged red blood cells that cant carry oxygen to your body. That is why you feel light headed and numbness as all your body needs oxygen restricted oxygen and the body starts to die in stages including your brain. so if you cant think striate and your vision is slow you need more oxygen to the tissues. Your breathless because the lung tissue is not getting enough oxygen to work. 1000mg injection is not stores in the body it leaves in wee within 48 hours. You only use 2.4mg that days worth. Then your body has none again. I am trying to get the health authorities to produce subcutaneous injections for daily and pain free injections. You can get them from a private GP. I have changed GP and I now have weekly Hydroxocobalamin injections and I have no illnesses for the first time in 15 years.

    good luck getting help for this forgotten ilness from NHS it is widley not taken seriousley any more.

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  • Posted

    ps: europe are treating B12 problems over the counter with fewer cases of dementure recorded as the final outcome of these 3 monthley injections result in dementure at an earley age. I also was nearley wheel chaires with a lable of ME but now i ride my bike with my children i am 45 now and looking forward to a brighter future. i was lost mind and body for 6 years. We paitents need to find out why we dont get the same treatment as Europe.
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