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GP thinks I have haemochromatosis

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youngatheart1
youngatheart1

Hi new to this discussion, bit of history, over past 15 months or so have been feeling really tired, dizzy, headaches, achy joints and strange chest pain with palpitations, heart rate going up rapidly for no reason.  Anyway in March I asked for a B12 and iron test as felt so rotten, ferratin came back 281.09, GP said was a bit high and had I been taking supplements, which I had for a couple of weeks but just a multi vit.  Said to retest in a few months, so now latest test 301.08, GP now thinks it may be haemo rather than any of the other possibilities for high iron.  I am particularly worried about my wacky chest and heart rythmn, have had lots of ECG's, chest X ray, scans and blood tests and was just told there was no real explanation for it, but now I know that it could be the high iron, which upon reading causes thicker blood and can cause heart attacks.  I am now waiting for a call from GP to explain what to do next although GP did not seem that bothered and to be honest from reading other posts my iron is relatively low. Is there anything that I do via my diet to help or any supplements to lower my levels. I drink maybe 3 small glasses of wine per week, rose or white, red meat twice a week.  I am 57 year old and female so I know being post menopause is a factor.  I also have slightly yellow whites of the eye although again GP not bothered and bright urine which again does not set alarm bells ringing.  One other thing is that I am a long term user of esomeprazole for GERD, could this be a  factor.  What should I be expecting to happen now please.

1 like, 8 replies

8 Replies

  • maureen99963
    maureen99963 youngatheart1

    Posted

    Welcome!  I was in the same boat as you but, with joint destruction and continual tanned skin year-round. My dad had Hemochromatosis and I had been tested about ten years ago and found to only have inheritied one mutant gene.  But, 1% of those with one gene, do overload and I was overloading about the same level as you. Iron continues to destroy joints even after phlebotomy.  So, even though I reduced my legels of ferritin by phlebotomy, I still needed a hip replacement.  But, my heart has been tested by MRI and I have no iron build-up there.  My liver enzymes resolved, too. They had been elevated for 20 years!  My Hematologist said my level of iron was high enough to do damage if not controlled. Diet can help slow the process of build-up and I do avoid red meat (or take calcium to clock the uptake) but, I still need a phlebotomy every 55 days or so just to keep my ferritin level below 50. I donate blood instead of throwing it away and I am more pale but, much healthier than I was the 20 years previous.  Good luck in your health journey!

     

    • youngatheart1
      youngatheart1 maureen99963

      Posted

      Thanks for quick reply, I have had a heart scan where they stick you in the tube, (forgotten name) and there was no build up so that is good.  I seem to have yellow patches on upper eye lids and around sockets but recently went for eye test and nothing mentioned so not sure if that is connected. I am worried about the liver as this does not repair itself, but I hardly drink nor smoke so may not be too damaged if at all. I am looking forward to any treatment to see if I feel less tired and will start taking calcium supplements as well.  Take care
  • joyce1959
    joyce1959 youngatheart1

    Posted

    Hi

    You have just about described me to a T! I am 57 female awaiting appointment with consultant. My ferritin is 950 and like you having awful palpitations and arrythmia's. It was the tiredness and abdominal pain that took me to the dr this time, but suffered for years with various things especially depression. Apparently this condition gives you a double whammy menopause and I can vouch for that. Pleased that I saw another GP who took a range of blood tests this time including ferritin. My usual doctor kept fobbing me off and not investigating my symptoms. I cannot wait to get treatment. are you in the UK?

    • youngatheart1
      youngatheart1 joyce1959

      Posted

      Hi, My GP has been fobbing me off for over a year now and basically making me feel like a hypocondriac.  If I had not asked for the iron test I doubt I would have ever known and I told the GP that.  I have suffered with aches and pains for years and had a bad menopause especially sweats which I finally after 7 years stopped with HRT, I have been taking this for 6 months now and touch wood they have gone, although I do feel hot a lot of the time and wonder if that is connected to high iron. I worry about the palps and fluctuations all the time and when A&E doctor said there was no explanation, I was panicked but now feel a bit more reasurred that it is not really heart related. I am in UK, Bedfordshire, so not sure about waiting times, as your level is so much higher than mine I hope they see you quickly.  GP's seem to take all these things in their stride and tell you not to worry which is easier said than done.  Should not keep googling I suppose.  Take care 

    • joyce1959
      joyce1959 youngatheart1

      Posted

      Hi..yes I am postmenopause now and came off hrt. I don't get as many flushes as I did, but suffer bad night sweats which I'm sure are Haem. I am in Newcastle, my GP has tried to get my consultant appointment brought forward, to know avail, so plodding on for another month. Not to bad, I was diagnosed 5 weeks ago. They have sent my blood to genetics to test the type, but that takes 3-4 weeks and that was only taken last week. I am having good days and bad days, but it's the mood swings that are the worst and I am a bit of a worrier. I have adjusted my diet and I think it has helped so far. I had also been taking multivits with 14mg of iron daily! Needless to say I've stopped those. I'm hoping the consultant will have all my main organs checked I know menopause can cause ectopic beats, but it's a known problem also with this condition. I did have my heart checked for the same thing, but that was 5 years ago. You're lucky they have caught yours quite early anyway. Good to talk to you, take care.

  • maureen99963
    maureen99963 youngatheart1

    Posted

    I don't drink either, thank God or else my liver would be scarred by now. My liver did heal after the third phlebotomy. The only thing I know that doesn't heal is the joint damage.  I have the HH63d form of hemochromatosis. Our daughter has two genes and also has anemia half of each month, which is possible. When she goes through menopause she will need chelation therapy instead of phlebotomies.  My husband has one gene and doesn't express overload.

  • youngatheart1
    youngatheart1

    Posted

    Hi spoke to GP today, she called after discussing what happens next with head GP of practice, apparently my level 301 is nothing to worry about, I did point out that website's say over 200 is not good, too no avail.  I am being sent for a liver and spleen scan and blood tested for LFT.  I did have LFT done in last 2 years, all ok.  I am a 2 - 3 small glass of wine per week kind of girl so not expecting it to show anything drink related, not sure what else causes damaged liver, but will be see what these tests show.  I am going to start on milk thistle and drinking hot lemon water in the morning to try to keep my liver healthy.  If tests show nothing, I will just have regular blood tests to check levels.  I am a bit disappointed to be honest that I am not being properly tested for haemo at the minute as it would put my mind at rest about the heart palps and strange pains etc.

    • maureen99963
      maureen99963 youngatheart1

      Posted

      It is common for docs trained in the old school to think he have to have extreme high numbers.  My PCP had the same idea and hid my numbers from me from my iron tests!  I had the office send me my lab results then call my PCPs office to get a referral to a Hematologist while my PCP was on vacation.  I got a referral and the rest is history. My PCO was corrected!  Sometimes patients have to go to great lengths to get dx and treated...
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