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My experience of Pernicious Anaemia

Posted , 4 users are following.

Susan_Wheeler
Susan_Wheeler

I was severely iron-deficient anaemia and the GP sent me for bowel cancer tests and found nothing. I then had a panic attack with paranoia and the GP sent me to a psychotherapist. After three sessions with her, she said I was fine (although under a lot of stress). Exactly a year later (and I am now convinced that light levels play a part in this), I suffered from paranoia again. This time the GP said I had 'low mood' and put me on Prozac. I took this for 5 months and didn't feel any better - tired and foggy and confused. I was doing an OU degree at the time. Then I sat in front of my computer and did some research myself. I wondered if I was not getting enough thyroxine as I have had hypothyroidism for 14 years since the birth of my daughter. I went to see a different GP, she sent me to a specialist and he ran tests for all the autoimmune conditions and found I tested strongly positive for parietal cell antibodies. Note that my B12 level was 185 (the low level in this country is 165). I later found out from my family that a great aunt also had PA and suffered paranoia although much later in life (I was only 42). I now know that the B12 level in this country is TOO LOW and I am campaigning for a change. The level in Japan is 500 and they have the lowest rates of Alzeihemer's in the world. When you get enough B12 (via hydroxocobalamin injection) once you reach the level that is right for you the 'fog' clears. You feel more energetic, positive and clearer thinking. I have had to tell my new GP how to treat me as she didn't know - she admitted last time I saw her that some of her patients have levels as high as 2000! We need better communication, research and treatment for this very common condition.

1 like, 4 replies

4 Replies

  • nicola30753
    nicola30753 Susan_Wheeler

    Posted

    Hi I have the condition, but after having the injections for a year, it seems there are not working.  I am very tired, and irritated. i also have Fibromyalgia.  i am going for tests, but i would like any advice you have. I.e about taking a supplement too?  How can i get my levels up?
  • marion29181
    marion29181 Susan_Wheeler

    Posted

    How I agree with everything being said here! I also have been diagnosed with pernicious anaemia, and the injections really aren't doing that much to help some of the symptoms. Then this week I was also diagnosed with fibromyalgia. I have been told this is causing the severe aches and pains and skin sensitivity (a burning sensation like a chinese burn). I have found a B12 spray in Holland & Barrett, but I'm not sure about using a supplement?
  • bluemaran
    bluemaran Susan_Wheeler

    Posted

    Hi Susan, I do so agree with you about this.

    My iron deficiency went undiagnosed for probably 25 years, while I was treated -sporadically - for depression and anxiety. Even when my low iron was discovered, it was put down to "women's trouble", and my B12 was not checked. I collapsed, and have discovered my B12 was dangerously low.

    I've had my loading jabs, which took me up over 700 very briefly. However, within 10 weeks it was back down in the low 200s, which is being described as "normal". I do not agree, and I still have symptoms.

    After 6 months of messing, I still don't have the results of a re-test for PA (ifa and pc), and my doctor and specialist are wasting time and rescources by recording incorrect information and failing to exchange test results.

    I have another appointment with my doctor next week, but I know she won't prescribe enough B12 to get me back over 500, whatever the cause (as yet not clear). Can you please tell me where I can get safe injectable B12? If I buy the extra B12 myself, can I ask my GP to inject it?

  • Francesca777
    Francesca777 Susan_Wheeler

    Posted

    The nurse at my GP surgery taught me how to self inject my B12. It was easy and I now inject myself once a month. Three monthly was too long for me as I began to suffer onset of symptoms again. Now I seem to be in a nice rhythm with it and don't suffer the nausea, digestive problems and lethargy if I keep the B12 injections to once a month. Originally I wasdiagnosed with PA by a Gastroenterologist eighteen months ago. I am 53. He said the liver, stores B12 for at least five years. So when you are Diagnosed with PA, you have been like that for at least that long. My GP sent me to a Gastroenterologist when my B12 was what she considered low, 220. My mother of 83 is the same though she gets injections every three months even though her level was 760 last time, she still got the injection. She is in the Channel Islands, maybe they have different guidelines there. My sister, 40, also recently diagnosed with PA. You can buy reliable B12 phials and needles too but get someone reliable to show you how to do it. It's not as difficult as you may think. There is plenty of info on YouTube also. Alternatively the PA Society can put you in touch with a private doctor if your GP won't agree with the level guidance. I am interested to see that some people are writing about also suffering from Fibromyalgia, which is also a spinal cord associated problem, MS too.

    This year I suffered a damaged tendon in my right arm. Shortly afterwards this developed into something called CRPS, Complex Regional Pain Syndrome or RSD, Regional Sympathetic Dystrophy. No, I'd never heard of them either. You can find them on this site if you are interested. It was a long journey through rheumatologist, hand surgeon, physio,(who picked up the CRPS), several MRI scans and severe pain for this to be discovered. There is no cure and no treatment. I have been on 300mg of Pregabalin, (Lyrica), (it treats neuropathic pain, similar to fibromyalgia) for six months now, coupled with 1000mg Naproxen, 20mg Omeprazole and paracetamol every four hours. 93%of sufferers experience a spread and it has spread to my other arm and I have felt pain simultaneously in both legs too but the Lyrica keeps that at bay now. I needed an operation to repair the ripped tendon but can't have it as no surgeon will touch you with CRPS so I am left with a weak right arm and still suffer pain from the tendon which is a distinguishably different pain than the neuropathic pain caused by the CRPS.

    Doing research I find it is interesting that sometimes these spinal cord conditions appear to be linked. Pregabalin actually drains the B12 out of your spinal cord. Pregabalin is a hard drug to take with many side effects and I am still in a constant level of some pain at all times.

    My consultant anaesthetist says he sees only about twelve patients a year with CRPS because  it is so under diagnosed. My practice nurse and one GP at my surgery had never heard of it. Often, as in my case, it is a physiotherapist that picks up on it.

    People with PA, MS, CRPS and Fibromyalgia all seem to have associations with their condition and drugs used.

    Does anyone else have any comments or experience with this?

    My GP has been marvellous andthe consultant anaesthetist now sees me for the chronic pain relief.

    Thank you for reading. I've never ,ever, written on a site about anything in my life. 

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