Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Lost_Ami_In_DE 07/10/2017

Hi everyone,

I've read a lot of post and found them really encouraging. I just thought I'd take the chance to share my situation and get some feedback from those with experience. I’m sorry if it’s quite long, I’m venting to a certain degree.

I'm 23 years old and was diagnosed with hemochromatosis a week and a half ago when I went in for a problem with my psoriasis and my doctor ran a blood test and the results showed that my Ferritin level was nearing 800. He said it'd be likely that I have Hemochromatosis and ran another test that confirmed that I have the correct (or rather incorrect) genes for this disorder. He said that I'd have to let a 500ml of blood per month and that everything would normalize. He was confident that no damage has occurred yet since I am only just 23 years old. Nevertheless, I asked him to forward me to a cardiologist because I have had a few other doctors told me that I have arrhythmia (starting when I was 17 years old) but they all told me not to worry. Well, now that I have this disorder I think it'd be prudent to have my heart checked out. I'm truly freaking out about this problem, what are your guys’ experiences with this?

I am also morbidly afraid of needles and blood. I have panic attacks when I think about anything related to my own personal anatomy and I have found it hard to sleep at night due to this fact. When I was 17, I tried donating blood and they wouldn’t let me due to my arrhythmia and the fact that I was freaking out quite excessively. I don’t know how I am going to manage frequent phlebotomies. I live in Germany and my whole family is Stateside so it’s not like I can ask my family for support other than being on the phone with them. My daughter is way too young to join me and I wouldn’t want her to see me in that state anyway.

I have been down a lot lately due to my overall health situation. I was born with a relatively severe hearing loss (thankfully hearing aids make up for that but that’s an aesthetic and financial nightmare in some sense), I have psoriasis which has made my life uncomfortable, arrhythmia which scares the living Heebie Jeebies out me, and now hemochromatosis. I have always taken fairly good care of myself. I never smoked or did drugs, I used to drink a bit too much to be honest but I have stopped almost completely in the last few months (even before my diagnosis). I go to the gym regularly and ride my bike and play basketball on a regular basis as well. I’m fit and have never been overweight but these health issues always hold me back it feels like. I’m always quite tired now and my stress level is through the roof. I’ve got a child to take care of, I’m working on eventually getting my Master’s degree (I’ve about finished my Bachelor’s), and I have a full-time job. This is really hard for me to manage all of this. I am just lucky I live in Germany and the health insurance company will cover 100% of all my appointments.

Thanks for those who read, I’m sorry for ranting like that. I just kind of feel like I’m on my last leg even though I know in my mind that I’m going to be fine.

Brinski 07/13/2017

Hi Lost. You are so young to have an Iron level that high. Heart Eurythmia is a symptom of HH. I had it only once. My levels were more than double yours. All in normal range now. I suggest when you go to have blood taken, you put some music in your ears and try to not look at what is being done. Distraction is the best thing for you I think. I think you will find the nurses who take your blood will be very considerate. Interesting you have Psoriasis. I have Psoriatic Arthritis. I now believe that to be a symptom of HH. So does my doctor. I also believe once the iron has done its dirty work with your joints etc, it does not go completely away once your Iron levels are back to normal. Fatigue is a symptom. I think you will get better at having your blood taken. Once a month is Ok. Most of us on here have had it taken more often. I had my taken once fortnight. 19 litres so far. Good luck and try not to be down about it. Lucky you found out now and not when your Liver might have been in failure. I mean that in a positive way.

Lost_Ami_In_DE 07/13/2017

Hi Brinski,

Thanks for your response, kind of funny, I'm leaving for my first introduction appointment with a hemochromatosis specialist in about 15 minutes. I just thought I'd check and see if anyone said anything, it does help. Thankfully, my rheumatologist does not think that I have joint issues due to psoriasis or hemochromatosis but I'm going to a radiologist tomorrow to find out for certain. I am going to grab my loudest pair of headphones for the first withdraw for sure. Thanks for the uplifting feedback and I'm glad to hear that things got better for you, too. :)

Brinski 07/17/2017

The joint issues. You may be lucky enough not to get them. You will know when they start to give you pain. Most on here have been through that and are still dealing with it. Even people who only have H63D mutation gene have said they have symptoms. Good luck with your first Venesection.

BattlesBlades 08/24/2017

You're going to do fine. I hate needles, but after ctscans and lots of bloodwork because of slightly elevated liver enzyme numbers (my regular doctor knows nothing of HH and gave me a full hep panel-he then put me on crazy blood pressure meds coz of my thick blood) and being scared to death about all the bad that can come from iron, and waiting for test results, when I started seeing those iron numbers drop and couldn't wait for my next pleb. Mine was 600+ and 70+ saturation I believe. Been a couple years now. I did 500ml every other week. Then monthly, then less and less. I go once a year now. And I even have a steak about twice a year.
Get some chewable calcium, for times you need an iron blocker. Never take vitC before meals. I do before bed. Sugar and alcohol make you absorb iron. So limit that. Esp before or during meals. Don't eat shellfish until your numbers are normal. It's a bacteria issue. Never let them use the same arm twice to drain you. Give your veins a break and when it's regular bloodwork tell them use the underside of your forearm or wrist. I only allow the bend of my elbow for HH phlebotomies. I'm 6' and 250lbs and I still bite down and squeeze my pants leg when they stick me :)
The past couple times I had an I.V. put in when they do blood tests so it's only one stick. Not 2-3. One for iron test and blood work and then one for the pleb. That sucked. So one poke a year is where I'm at. Sorry for babbling, I just remember how scared I was back then.
Many ppl live with it and YOU CAN TOO! Also you're in the right place these ppl are great.

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