Hemochromatosis - What are the chances I have it?

Your iron levels are above normal, and also above optimal levels for good health. Even small elevations in iron can do permanent damage to organs, tissues and joints. So the sooner you find out the better and the moire proactive you can be from now on.

By the way, people can be anemic and iron load at same time. SO just because your family says they don't have this, likely they could have missed the signs, or drs have attributed their symptoms or disease or causes of death to other more common ailments, like congestive heart failure, diabetes, cirrhosis, thyroid problems, cancers, arthritis, Parkinson's, MS, and many other problems.

Look up the condition and it can answer a lot of your questions. In the meantime, your levels are not alarming or in the danger zone, my levels are similiar, I am 42 female and premenopausal so for me to have found out now is great. Most women don't until in their 60's, and men usually in their 40's and 50's, when damage has already been done.

Do as much research as you can, dr's seem to know so little about this and it is so common. especially the Celtic Curse!

Take care, and best wishes.

Supplements will NOT be a good part of your diet or health plan, as they are iron fortified. Stay away from Vit C, and your plan to clean up your lifestyle will help immensely. Drinking will affect your liver, and if you have HHC then the liver is the first to be affected, then heart, then pancreas and gallbladder, brain, etc. The only way to get rid of iron is to get your blood removed. My husband gets a pint taken out a week until his levels return to more normal. Dr. will tell you about this as time progresses.

This is not something to ignore, and as confirmed by gene test, your family will want to make sure they have received the correct iron testing. Regular CBC's won't cut it. Low hemoglobin and hematocrit can show iron deficiency, but a person can still be iron loading.

Hope this helps...

To be honest it's hard because people haven't been aware of this disease for long and even today, so many people have zero idea that it exists and because of that, it's often undiagnosed, untreated, and then you wake up one day and your grandparent has just died of organ failure.

I think what's happened, if you do indeed have iron overload, is that your family, because they had no idea this existed, they're under the impression that no, no one's ever had this condition before, but in reality, they have. Do you have any relatives who have suffered from horrible arthritis, organ failure, cirrhosis of the liver or liver cancer? Based on the fact that you suffer from iron overload, it's not far fetched to assume that you have family member who were left untreated their whole lives.

Imagine if we all lived 60 years ago. Everyone who had haemochromatosis would end up dying early (most likely) because there was zero treatment.

Now, the most important bit that I have found in my experience as a Haemochromatosis Support Group Leader. CELIAC diseased was mentioned by a couple of members. I researched if there was any relationship to Haemo and bingo, found that there was a high prevalence of it with people of Irish heritage.

Celiac disease causes inflammation of the stomach/gut and left untreated, it bleeds, therefore making the human host anaemic, even those with Haemo! Then when the celiac is treated with the correct diet, etc. they then go into iron overload and require venesections. However, i would much prefer venesections than a bleeding gut and problems everytime I ate. So check that out.

I, too, was the only one in a family of 5 children who has Haemo. The other 4 are all carriers, as well as my mother. In retrospect, my father must have had full blown Haemo but was never tested before he died of cancer even though he knew i had it. He wanted the dr to discover it by himself. Too late. We with Haemo are prone to cancer as cancer thrives on iron.

HELICOBACTOR PYLORI also thrives on iron, so be tested for that. If positive, it would be making your gut bleed.

His mother died early from liver disease and she did not drink alcohol (definite sign) and his father died of cancer too, and if nothing, he would have been a carrier. My grandfather's parents were a Dane and a Scot. Both Celtic/Viking heritage.

My son was tested and he turned up compound C282Y/D63H which meant he got the D63H from his father who was born in Scotland but his parents have Irish heritage. He, my husband was homozygous D63H. Both his parents died of cancer. My C282Y is very aggressive compounded by the fact that it took my dr 9 years to diagnose. By then my health was stuffed.

Be very glad you were diagnosed early. Become health conscious - don't ruin your health, wealth and relationships with binge drinking - sorry for sermon.

Please keep letting us know how you are going. We Haemo people care.

I too have high iron 36.2 umol/l and high iron satursation % 61, my ferritin levels are 32 ug/l and tibc 59.7 umol/l which are normal. I am 53 years young and still have my monthly menstrual. Blood work prior only showed low estradiol 108pmol/l which i believe is menopause values. My iron levels were always 17.3 or so and saturation 23%. Now 3 months later i got bloodwork done due to a chest pain the night before and they have doubled and tripled in saturation? Went to regular doctor and he said nothing to worry about, so i then went back to the local doctor who did the recent bloodwork and she thought it was nothing as well? i asked for another test so waitng to see next week. I am from scottish and irish background and my neice had aplastic anemia 11 years ago. Does anybody know if ferritin levels would be still normal because of my monthly periods?

Any input would be Great!

Thanks Ingrid

I am reporting good news!  I have finally taken the genetic test and I DO NOT have any of the genes that cause hemochromatosis--so, that means that I do not have it!  My Dad did have it, though, so we were pretty sure that I have it, too.  However, I've done some research and hemochromatosis can be caused by alcoholism in some people, and yes, he was an alcoholic.  It's possible that he had the gene, also, but he did not pass it on to me.  Nor my Mom.  My doctor attributes my high ferratin level to inflammation in my body.  So, this was good news to me and I hope to some others of you as well.  However, I received bad news as well.  I also had a SIBO test and I tested sky-high for SIBO (Small Intestinal Baterial Overgrowth).  It was almost off the chart and was the one of the very highest my doctor had ever seen.  In fact, she has one other patient who is just a bit higher than me and she is almost totally bedridden.  I have been very ill as well.  So, that may explain many of my mystery symptoms, which is actually good news.  We're going to start an anti-SIBO regime right away.  As my doctor explained, I may get worse before I get better because the bacteria has to be killed, but in the long run this will help.  I know this is not a discussion of SIBO, but I wanted to let everyone know because if you're having mystery symptoms like me, this could be at least one reason.  All my best to everyone.  Lots of love to all of us.