[This message has been edited by mbroderick (edited 04 July 2004).]
 

My iron readings seemed to depend on what I was putting in my mouth. High when I took vitamins with iron, or supplements containing citrate or another element that escapes me at the moment. When these things were removed, the transferrin saturation was reduced to "normal" levels.

Anyway, having only one of the genes makes you a carrier, not a person with this disease. I went to the local hospital and found a great long chapter on hemochromatosis in a medical textbook. It showed that carriers might not have any iron effects, or might be somewhat higher than people with no gene defects of that kind. But nothing like the numbers that people with the actual disease have.

Being rather pigheaded at times and having veins that are very difficult to find, I resisted the idea that being a carrier and having occasional high readings when I put the wrong things in my mouth (unintentionally) meant that I needed repeated blood lettings. Just couldn't face it.

I also talked to a genetic counselor who said that being a carrier did not mean you needed treatment. I chose to believe this since it was what I wanted to hear.

Am comfortable with this decision and hope it was the right one. Sometimes you get to the point that you just can't deal with even one more problem. And I had so many, even without this questionable one.

You didn't say what your son's iron test results were.
 

It was the combination of these signs, as well as his symptoms, that were used to decide to treat. When his hematocrit, hemoglobin, and ferritin all stayed high after pints of blood were drawn, it was confirmed.

He had to have 6 pints drawn in six weeks, and his hemoglobin and hematocrit kept rebounding, but it finally brought the ferritin and transferrin down. It also brought the elevated liver enzymes down.

If your son has the genetic tendency, he should definitely be tested regularly. Once you have a handle on whether it is tending to go up or not, you can plan the interval.

Like my son, the advantage you have is that you are finding early this could be an issue. If treatment starts before there is damage to the organs, there is no reason for it to ever be a problem for him, other than the inconvenience of regularly scheduled blood draws.

As far as relatives, you might want to let them know. Many don't get symptoms until the damage is done. It's a pretty simple blood test to do the screening. They don't even have to do the genetic testing, just the ferritin and transferrin saturation.
 

Her iron level was high and she had the DNA test.

The Dr. never did any follow-up and when I questioned his office I was told by the ?lady that screens all of his calls, that if I had already asked him that question and he had answered it that I would be wasting his time. I would also get the same answer again. It is also the same practice that has never called to see how my daughter is doing when she tried to commit suicide 3 days later and was in a psych ward. I think he has way too much going on to impress his colleagues to take care of his patients. We will not go back in spite of the heavy money invested unless it becomes absolutely necessary. Sorry, will get off the soap box.

Another nurse recommended that my daughter get chelation therapy..We have not done so. No one has told us to get her tested every 6 months. NOw I am worried all over again since I thought a carrier was ok.
 

Chelation therapy is not used for hemochromatosis. It is very simple to treat by withdrawing blood.

Your daughter may not need to be tested every six months. It depends how high her ferritin levels are, and how fast they are rising.

As others have mentioned, just having high levels of iron may or may not indicate need for treatment. Usually they check more than one thing to be sure it is hemochromatosis causing the elevation.

These websites will give you some more info.

American Hemochromatosis Society
Iron Disorders Institute