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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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  • angela28253
    angela28253 dillinger

    Posted

    I am happy you have a proper diagnosis. My husband was diagnosed at age 36, he was also a heavy drinker for many years. His ferritin was over 4000 when they found it. His biopsy 5 months ago revealed he has cirrhosis and will eventually need a transplant. However, the transplant doctors are hopeful as he is quite healthy and feel it will he several years before will need the transplant. He quit drinking and all tobacco, low salt low iron diet. After 18 months of weekly blood letting his iron is down to a normal range.

    He suffers from extreme fatigue and also depression and anxiety. On the other hand, he has a new outlook on life and lives each day as if it were his last. Keeping a positive attitude is key. If you have any other questions please don't hesitate to ask. A new diagnosis is a lot to wrap your head around. Take care.

    • dillinger
      dillinger angela28253

      Posted

      Hello Angela, thanks for your post.

      Yep, this is all new to me but hopefully the early diagnosis will help.

      Give my best wishes to your husband, hope all goes well.  

    • angela28253
      angela28253 dillinger

      Posted

      Thank you, hemochromatosis org has some great resources. I also got the hemochromatosis cookbook, that has been helpful. My husband now drinks gobs of black tea and coffee. It helps block iron absorption.
    • dillinger
      dillinger angela28253

      Posted

      I actually had the Haemochromatosis cookbook delivered today, not had a chance to look through it yet.

      The prospect of having tea or milk with my meals instead of a beer or wine doesn't exactly thrill me but you have to make these sacrifices I suppose.

    • megan36105
      megan36105 dillinger

      Posted

      If it makes you feel any better you can have coffee with your meals - the caffeine inhibits iron absorption. 

      Do you know what your actual ferritin level is at the moment? Because if it's not that high and if the biopsy comes back clear you don't necessarily have to cut out those things that you like. Not that it isn't helpful or healthier for you, I know it is, but there's a chance that your lifestyle change won't be as significant as you think. 

      When I was diagnosed my ferritin level was about 600. Granted, I was 21 (and a woman so I was and still am losing blood each month which helps), but the specialist advised that I don't need to cut anything out but that I should definitely try to limit the amount of beets, spinach, red meat, and raw fish that I eat and try not to drink too much as that's hard on my liver regardless.

      However, despite what I've just said I am 100% not a doctor and I haven't seen your test results and I have no idea what your future liver tests will show, so before you know, definitely do your best to limit all of the things that are bad when it comes to haemochromatosis. 

    • dillinger
      dillinger megan36105

      Posted

      Hello Megan, thanks for your post. I'm not sure what my levels are , the Dr did say that they were not too high and was quite optimistic.

      I'm keeping my fingers crossed though until I have the results from my liver tests , and I'll definitely ask for my ferritin level when I speak to him next.

      Until then I'm off the booze and red meat, I used to drink Guiness which has iron in it.

      On the plus side a healthier diet can't be a bad thing.

    • angela28253
      angela28253 dillinger

      Posted

      My husband and I save enough money each month from him quitting alcohol and tobacco we were able to buy a new car!
  • angela28253
    angela28253 dillinger

    Posted

    I read that organ damage doesnt begin until your ferritin gets above 1000. My husband was well over that at time of diagnosis. He cut down his drinking to 2 beers a day for 10 days then down to one a day for 5 days and he was done. He said it wasn't as hard to quit as he thought but it did effect his social life. The doctors told him for over a year that he didn't have to quit alcohol until they discovered the cirrhosis. We both wish he had quit at the time of diagnosis and he could have spared his liver the additional damage. Its up to you, but I recommend staying below the 2 a day limit for sure
    • dillinger
      dillinger angela28253

      Posted

      I've cut down drastically since my GP first sent me for tests.

      I used to be in the pub most days but the last couple of weeks I've popped in a couple of times and had just one or two pints at the most.

      It is hard giving up a large part of your social life but until I get my results it's what I need to do.

      On the plus side I'm saving a few quid too.

  • mark_24924
    mark_24924 dillinger

    Posted

    Don't stress, but you better quit drinking for a while.  Have you hae genetic test? Or is it a result of liver damage? 
    • dillinger
      dillinger mark_24924

      Posted

      Hello Mark, yes I've had the gene test. That's when I was diagnosed as I have the HFE gene.

    • mark_24924
      mark_24924 dillinger

      Posted

        While it might be better on your side of the Atlantic, the truth is the docs don't really know a whole lot about it.  I've been treated for over five years now, and I still have fairly regular symptoms of exhaustion and pain. On the other hand many people have no ill effects once treated.  It is on a pretty individual basis. The way I look at it, it sucks way less than some diseases I could be straddled with. 
    • dillinger
      dillinger mark_24924

      Posted

      I think half the battle is getting diagnosed properly.

      At least it's treatable, as you say there's worse things to have.

      I've not started my treatment yet. Hope when I do I won't be so damn tired all the time

  • angela28253
    angela28253 dillinger

    Posted

    The phlebs will make you tired, do you work? My husband has to sleep for a few hours after he gets his blood taken, but he has been doing it for a long time. We estimated right around 75 pints of blood at this point. He has issues with nausea and blurry vision after. Just take it easy on blood days (and perhaps the day after) My husband is in pretty good shape too, 5'10" 175 lbs
    • megan36105
      megan36105 angela28253

      Posted

      Has your husband ever asked to have an IV bag same time? I need to because I'm on the smaller side and my blood flies out of me - I fill up a bag in about 5 minutes rather than the usual 20 like normal people, so it's too much fluid for me to lose at once (otherwise I will pass out).

      But, with the IV in one arm (I have that going for about... 10 or so minutes beforehand, then during, and then about 10 minutes after) and the blood being taken from the other, I don't find that I'm overly tired or anything afterwards. I generally feel pretty great. A tiny bit light-headed, but that's it.

    • megan36105
      megan36105

      Posted

      Sorry, *an IV bag at the same time*
    • angela28253
      angela28253 megan36105

      Posted

      No we haven't had that, but he is a fast bleeder too, about 5 minutes only because they slow it down if he goes any faster. I will bring that up next week. Thank you!
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