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Just diagnosed with Haemochromatosis

Posted , 9 users are following.

dillinger
dillinger

I am a 44yr old male,I was diagnosed with Haemochromatosis last week.

I had been feeling tired and lethargic all the time for a few years now but put it down to working long hours.

Lately though I have been getting mood swings and my memory was getting worse.

I explained this to my GP who ran some blood tests. The results showed that my iron levels were high so he refferred me for more tests at the hospital.

This is when it was discovered I have Haemochromatosis. The consultant says my GP needs a pat on the back for refferring me as he says its early days and its lucky Ive been diagnosed.

Ive got a ultrasound on my liver in a few days and then I'll be having a biopsy to see if there is any liver damage. I've been a heavy drinker for about 25 years.

 Looks like a dramatic lifestye change is going to be neccesary.

I must admit that I am stressing out a bit at the moment.

Any helpful advice anyone has will be much appreciated.

Thanks

1 like, 30 replies

30 Replies

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  • fasthorse
    fasthorse dillinger

    Posted

    Hi..Prayer for your health to improve. I hope your liver tests are negative. At least this is a manageable disease. May be the time to ease off the drinking smile  and watch out for iron rich foods. Once  you begin phlebotomies you'll hopefully feel better..Although everyone has a different story with those..I heard again on a Dr.'s radio program, that DHA may be the only thing one needs for renewing memory. Was the rest of your blood panel normal?  Wishing you the best. Please keep us posted.

    Leigh

    • dillinger
      dillinger fasthorse

      Posted

      Hello Leigh thanks for your post.

      I'm having an ultrasound tomorrow morning so should get a rough idea how my liver is.

      I'm off the booze at the moment and am trying to avoid iron rich foods.

      What is DHA ?.

  • fasthorse
    fasthorse dillinger

    Posted

    Hi,Sorry it's taken so long to get back..DHA is found in fish oil. IT's an omega 3 fatty acid. "a primary structural component of the human brain, cerebral cortex, skin, sperm, testicles and retina." Hope you post results of the ultrasound.
  • dillinger
    dillinger

    Posted

    Hello everyone, I just spoke to my Dr.

    My ultrasound went ok, he said it doesnt look like there is any liver damage.I will be having a liver biopsy over the next 2 weeks to get a more in depth look at it.

    Fingers crossed.

    My Ferritin level is 1400 at the moment.

    Is this average for someone with HH or is it high/low .

    • angela28253
      angela28253 dillinger

      Posted

      A level of 1400 is high but manageable. My husband was at 4053 and after about 80 phlebs, he was down to 300. My brother in law was at 1150 and after 12 phlebs, he was down to 100. I read that organ damage begins when the ferritin is above 1000. It seems to me, you were diagnosed just in time before things got too bad. Good luck on the biopsy, my brother in law had his done and he is good to go.
    • huger99
      huger99 angela28253

      Posted

      This article helped so much for me. I'm 25 and have been diagnosed over a year ago. I drank heavily in college and on weekends and after feeling a little off feared I did too much damage. I will need to get checked up on and see if there is any damage as I feared. I live a healthy lifestly besides that eating healthy and exercising. Wish you all the best as this is new to me as well. I think I should look into giving blood more often as well
  • mike80628
    mike80628 dillinger

    Posted

    Hi folks. I'm Mike, 53 years old, Brentwood, Essex. I was diagnosed last June with HH, so it's been nearly a year now. Level was 2000. My only symptom was painful right hand in the knuckles. Luckily the consultant I saw was totally on the ball, and had my ferritin tested...had the gene test..and HH it was...homozygous 272y gene. Having weekly venesections since last June...level at mo is 275...so nearly there.

    Luckily all organs seem OK, ultra sound showed some iron in liver, but all liver tests fine...at the mo, I couldn't feel better, and even hand pain is much better. I've been taking IP6 supplement, calcium supplement and green tea extract...think it's having a great impact, as last month or so, ferritin level is dropping by the hundreds....do some research on this folks...as have heard great things. I've given up red meat, drink tea and milk with meals...eat tinned sardines for lunch every day...good for you and packed with calcium. I drink some beer/wine at weekends only.....if it's a very special occasion...I might have a few glasses too many...but what the hell....still gotta have some fun.

    So, since the diagnosis, changing my diet has been a good thing...still enjoy chicken...secret is to eat fairly normally, but it's taking calcium and tannins with your food which is the key...inhibits iron absorption. IP6 is a natural iron chelator and very powerful anti oxidant...read up on it, and take it....quite magical for us iron people....we'll, that's my story at the mo...nearly at the end of my weekly venesections...then become a blood donor....it's great to hear from others like yourselves....hope you're all doing OK with your weekly treatments, maintenance, and managing the more serious complications.....hope to hear something soon from you...all the best. Mike.

    • dillinger
      dillinger mike80628

      Posted

      Hello Mike, my Ferretin levels are now about 40. When I was diagnosed in March last year it was 1400.

      I had venesection once a week from April to November last year.

      I still have some symptoms, lethargy, aching joints and have trouble sleeping.

      I've cut right down on my boozing although I do still have a couple at weekends.

      I take Milk Thisle for my liver and omega3.

      I'll certainly give the IP6 a try.

      Glad your on the mend.

      Regards

      Dillinger

    • mike80628
      mike80628 dillinger

      Posted

      Hi Dillinger. Good to hear from you. Glad your level is down to 40. How often will you now need venesections? Was there any damage to your liver? I feel so lucky that my only symptom was a sore hand, despite my level being 2000!

      The venesections used to leave me a little weak initially, but now all is fine, though my poor veins have taken a battering....

      Good to chat to fellow sufferer.....

    • dillinger
      dillinger mike80628

      Posted

      Hello Mike, my consultant thinks that now my levels are down I'll only need venesection once or twice per year which is a big improvement on once a week.

      I have some scarring on my liver. I used to be quite a heavy drinker and that as well as the high iron levels has damaged my liver slightly.

      My consultant thinks that although the areas with the scarring will not repair itself , the rest of my liver will over time so he assures me it should be ok .

      At first it was difficult cutting down on the booze but I'm saving a fortune staying out of the pub so that helps make it easier.

    • mike80628
      mike80628 dillinger

      Posted

      Hi. That all sounds really good. I'm actually in the waiting room waiting for my venesection! My level should be under 200 now...so I'm almost there. I've registered with the blood donor service...so hopefully like you will only need to go 2-4 times a year. Yep...sure beats weekly. My liver touch wood showed signs of iron overload, but no damage. I barely drink now...certainly not in the week. Have a few beers or wine at weekend, and no red meat anymore, plenty of calcium and tea during meals...but, all going OK.

      Well, keep in touch, and congratulations on de ironing!

  • zach76568
    zach76568 dillinger

    Posted

    I would not do biopsy. Unless he suspects cancer. It's out of date procedure and dangerous.
  • garrett82
    garrett82 dillinger

    Posted

    DIllinger,

    ?First off, nice nickname, I've been obsessed with him since first grade, did my first project on his escape from CP ( I grew up in the next town over). I had something very similar happen with me, by now, you probably already have everything figured out. I'm in my early 30s and went to a doctor for drowsiness, loss of appetite, weight, motivation, etc. He blamed it on stress. Fast forward a year, it's worse, vomiting every morning. i went to a different doctor (here in AZ) for a black widow bite, I explained my symptoms, he said it wasn't from the spider, ordered a blood test. Same as you, sent me to a hemotologyst, who gave my gp a pat on the back. I went through 3 months of phlebotomies (sp?) and was told to quit, or severly limit my drinking. I quit (was an extremely heavy drinker since college), and 3 weeks later went in and my levels were normal, he put me on medication and i felt like i was 19 again (forgot how 'normal' felt). He told me if i want to drink, 2 at a time, no more than 3 days a week. (kind of beats the purpose) so i quit. then Arizona summer came along..... I have a follow up this week. Getting ready for an ass chewing, but it's my fault. Point is, you'll be just fine, quitting drinking is the hardest part! minus the huge needles in your arm. but you'll be alright. I'm sure you know this as you posted over a year ago, but let me know how you're doing.

    Garrett

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