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Liver & Pancreas Disorders Message Board

Liver & Pancreas Disorders Board Index

chicojeff--My husband is 54 went to his PCP for a routine check up to make sure everything is ok. Told the doctor that he wants everything that INS pays for checked. His liver enzymes came back high don't remember how high I think it was 62? Anyway, the PCP doctor did a test for Hep-C and said that he was positive. We were floored and to say the least not pleased. He sent us to a GI doc. As soon as the doc came in the room he said this doesn't mean that you have Hep-C, we were devastated at that point and in disbelief. He checked the Ferritin and it was almost 3,000 the range is 10-291
He then tested for HH and did DNA testing, he tested positive for the double gene of HH, this makes my children automatically carriers. That is why the Ferritin is so high these stores are fully loaded with iron along with the Liver and other organs. Ultrasounds and Catscans were ordered and found normal result other than an enlarged spleen. He is now on a schedule for bloodletting once a week. It took his whole life to build the iron in the organs and it will slowly be released. This takes a long time.

Your numbers are up to the point that you would probably have to do bloodletting. After you get the Ferritin down in range, then you have to do a maintenance bloodletting maybe on a yearly basis, not sure. But your numbers are not that bad you will probably have to do maintenance the rest of your life if you have HH. You will have to have all the others tests that I mentioned as far as blood goes.

We were lucky to catch it in time. The doctor said that when the iron is out the spleen will go back to normal. Thank God that he went to the doctor or he would have died from it. The doctor said that he just had a guy ome in a week prior to us and he had to have a liver transplant. We have a son that is being tested for it right now. He has a 50% chance of having HH.

The doctor said that he is not concerned about the diet. Iron is in almost everything that we eat. He absorbs it 3X more than a normal person. I will tell you he was taking a vitamins with iron in them, along with OJ which increases the absorption rate. This is very BAD! He has discontinued that program. I just wouldn't eat red meat for a while that really ups the iron load fast. And as far as drinking say good-bye to the alcohol or to your liver and your life. You cannot drink, your liver is already overloaded with iron. Maybe that is why you got so sick iron and alcohol combo. My husband doesn't even drink, that might have killed him. I think that I've answered your questions. I have posted more about HH on the blood disorders board if your interested. Good luck with your follow-up and keep us posted. FLFLOWERGIRL:)

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