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Haemochromatosis diagnosed

Posted , 6 users are following.

terry34297
terry34297

Hi. I was diagnosed as haemochromatosis positive yesterday. I also have low epo levels, which could indicate a secondary condition, so have been booked in for an MRI scan next week. I'm worried that I also have kidney disease, so if theres anyone out there who can give me some advice then it would be much appriciated.

1 like, 20 replies

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  • ruth51315
    ruth51315 terry34297

    Posted

    Hi Terry,

    I expect you are feeling that all this is a bit of a bombshell aren't you.  I am newly diagnosed with haemo myself so I'm not the best person to reply, but as far as having the MRI scan goes, they aren't invasive and don't hurt.  The tube can be a little claustrophobic so just close your eyes as you go into it.  It can get a bit noisy too, but it really is nothing to worry about.

    I am sorry I can't be more helpful.

    Good luck,

    Ruth

     

    • terry34297
      terry34297 ruth51315

      Posted

      Hi Ruth. Thanks for replying. Sorry I didnt realise I had commented on your post as I meant to create a new one. All the best. Terry.
  • mike80628
    mike80628 terry34297

    Posted

    Hi Terry.

    What made you go to the Doc to have to be tested for the hh gene? Did you have any of the classic symptoms, maybe joint pains, tiredness, bronzing of the skin etc?

    I went to the Doc a year ago with bad pains in my knuckles mainly the right hand. My Doc, who was on the ball did a ferritin test. Came back as 2000! I've had a weekly venesection since!

    Have you had a ferritin test yet? This tests the storage iron in your system. With Haemochromatosis we don't get rid of our iron, so it just builds up in our system, loading the organs like liver, pancreas, skin with all the excess iron. A normal ferritin level is normally between 50-300. The weekly blood letting, venesection, brings down this ferritin level bit by bit as iron is used to make new blood.

    Let me know what tests and results you've all had at the moment. I'm 53 years old, and was diagnosed last July...

    Chat soon..

    Mike.

    • terry34297
      terry34297 mike80628

      Posted

      Hi Mike. I have felt ill for a number of years now. Tiredness, back back, joint pains etc. I also suffer constant headaches and migraines as well as dizzyness and vertigio. It was a stroke of luck, but I changed doctors surgeries just after Christmas and i had to go in for a health check. My blood pressure was high, so they did some blood tests. My iron levels were high (amonst other things) so futher tests were carried out and last week I saw my consultant, who confirmed I have Haemochromatosis. I had an utrasound a couple of months ago, which confirmed an enlarged liver, but he wants me to have an MRI (tomorrow)as my EPO levels are  low . I was just wondering if this was pretty standard or do I also have a secondary condition. My ferritin levels were 1082. Yes i do have bronzing of the skin. My new doctor can't understand why this wasn't all picked up by my previous doctor. Im so relieved i changed surgury as would still be non the wiser. Im 44 years old and am fed up of feeling so tired all the time. Hopefully things will inprove when treatment starts. Have you noticed an improvement in your health since you began venesection? This is all new to me.... i'd never heard of any of this until a few weeks ago! Thanks for taking the time to respond to my post.

      Terry

       

    • mike80628
      mike80628 terry34297

      Posted

      Hi Terry, as Mary said to contact the Haemochromatosis Society. I have joined them...they were so helpful and supportive to me. I certainly do think your old GP should have picked this all up sooner...but then, this is a common problem!

      Once your treatment starts, many do find that things do improve. The tiredness often goes, the bronzing of the skin should improve, and if the liver has not been seriously damaged then that too should all improve. Getting rid of all this stored iron which cab be deadly for us, that's the key. When it's all been drained out, your liver will be happy, your joints, skin etc. It's individual for all of us as to what gets damaged, how we'll improve...but for most, the venesection treatment generally helps us feel better...energy comes back, joint pains may ease, but might not go. My hand is now permanently damaged...the "iron fist" they call it, but the pain has certainly eased. I feel energised, and actually feel pretty good! I will soon be entering maintenance phase....I can't wait. Instead of being bled every week, it will go down to hopefully 4-6 times a year...often less.

      Keep me posted...hope the treatment starts soon....

      Take care..

      Mike

    • terry34297
      terry34297 mike80628

      Posted

      Sorry to hear about your hand, but im glad that you are feeling energised. The thought of being bled makes me feel quesy, but its something im going to have to get used to. I just know im going to faint during my first bleed.... just having a blood test makes me feel lightheaded lol.I will get my MRI scan out of the way and will just wait for my next appointment now as theres no point in worrying.
    • mike80628
      mike80628 terry34297

      Posted

      Hi Terry. Def try not to worry now as you've been diagnosed, and that in itself is a great thing! I hate needles, but have come to realise that there is absolutely nothing to it. In fact, I look forward to it every week as I know it's making me better each time! I watch the needle going in so I know when to expect it! That takes the panic away. Having it every week for the last year, I can be honest and say it has never hurt. At worst, it's a one second pinch, but they're so good at it, I just don't bother about it. I don't know how people look away, as you just stay tense until it's done. I watch the whole thing, and it really is fine. Eat before you go, and the most important thing, is drink loads that day before you go, as it really helps the blood flow nice and quick. It all sounds grim....but it will be totally fine. I have a great laugh with the nurses and fellow iron men and women! I always treat myself to a chocolate during the procedure as well...a snickers!

      There's lots to learn about diet as well...happy to share info with you when you're ready....no huge changes, just some basic tips to help you stop absorbing iron.

      Keep in touch....

      Let me know about the scan and venesections...the whole community is here for you....

    • terry34297
      terry34297 mike80628

      Posted

      I just want to get on with it now. Im sure i will soon adjust to it and hopefully can be as positive as you as you are right, its done to make us  better. I will make sure im hydrated before the bleed and pack a nice treat... mmm snickers sounds good! Yes any tips regarding diet would be appriciated.
    • mike80628
      mike80628 terry34297

      Posted

      Hi Terry...a few tips on diet to get you started. There's two types of iron in food. Heme iron, found in meats esp red meats, and non heme iron found in plants, veggies. Heme iron is much more easily absorbed than non heme. So, try to eat less red meat...no liver or kidneys...they are Full of iron. By all means eat some meat...just try to cut down. I have meat a few times a week...hardly touch lamb or beef now. I eat more fish.

      Calcium prevents iron absorption...so, drink milk when you eat...eat yogurt after a meal. Also, drinking lots of tea when eating prevents iron absorption....so, plenty of milk and tea from now on. I also take calcium supplements. Also, cut right down on alcohol...in fact cut it out if you have any liver issues at the moment. Alcohol makes the body absorb a huge amount of iron...so not good. If your liver is fine, and ferritin level is normal, then moderate drinking is fine, but don't drink when you eat...you'll absorb more iron. Red wine actually has tannins in like tea, so in moderation it could be beneficial.

      So, that's a few real basics. You cab research all this in more detail. Also, check labelling of food as so much stuff has added iron, breads, cakes, biscuits, I eat all these things but check the label first, as loads of wheat flour they use has added iron. Watch out for cereals...Def don't eat cornflakes....they have a huge amount of added iron!

      Also, take no vitamin C supplements, as this vitamin makes your body absorb s lot of iron. Don't put a freshly squeezed lemon over your fish or meat, as you'll end up absorbing more iron. Have an orange or whatever in between meals. No juices for breakfast.

      It all sounds a lot to take in, but it'll all sink in very quickly. I've ended up eating much mire healthy now....and feel good for it.

      Sorry about all the info....I've tried to keep it simple.

      Cheers. Mike.

    • terry34297
      terry34297 mike80628

      Posted

      Thanks for this, it's much appreciated. I will be having milk with my meals from now on as I actually love a glass of milk. I've already cut out my morning orange juice and have avoided cereals for the last few weeks. It's funny but I have had cravings for cornflakes and have given into them a couple of times. I nevwr eat the bloody things until I knew I couldn't lol. Processed meats are my weakness, sausages, bacon,mince etc. I only drink in moderation. A bottle of red on a Saturday night. I know I shouldn't as I itch all night after drinking. So many changes to be made. I'm not quite there yet as still coming to terms with all this, but I will get there.
    • mike80628
      mike80628 terry34297

      Posted

      Hi Terry. Yeah, it does take time to come to terms with it all. I was too scared to eat anything initially...didn't want any more iron in me..ever! But, with these few changes, you gotta just get on and realise you can get on and still live and enjoy yourself! As I say I don't drink at all in the week, and at the weekend I like a few beers of some wine.

      You'll get there with all the changes, and you'll get there with all the treatment and then reach maintenance phase which I'll be starting any time soon. My level started at 2000 a year ago! Last week it was 86! Aiming for between 20-50. Could be any time soon!

      Chat soon....

    • terry34297
      terry34297 mike80628

      Posted

      Wow they have managed to bring your levels down to 86 that's brilliant. I really can't wait to get started with this now. I've just returned from MRI scan. Glad that's over with. All that holding your breathe business seemed to go on forever.
    • mike80628
      mike80628 terry34297

      Posted

      Hi. Yeah, I remember all that holding the breath..sometimes felt like they were going to forget to say breathe again! When do you get the results? They told me my liver showed signs of iron overload...and they just left it at that. They've never mentioned it since. My liver tests were normal, and I never had any pain or tenderness....hope all goes well with your results. They may well say that iron has been building up, but get the blood letting started and draw it all out again! Keep me posted.....Mike.
    • terry34297
      terry34297 mike80628

      Posted

      They said a couple of weeks for results... so that means 6 weeks then lol. I'll keep you posted. Thanks again for all your help.
  • mary92507
    mary92507 terry34297

    Posted

    Hi Terry

    i was recently diagnosed myself so I feel for you.  Contact The Haemochromatosis Society to get relevant information and support which we all need.  You can also talk to someone on the phone to ask those niggling questions.

    mary

    • terry34297
      terry34297 mary92507

      Posted

      Hi Mary,

      ​Thanks for the advice. I think I will just get this MRI scan out of the way and try not to worry for now.

      Terry

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