My Haematologist told me that both parents had to have the carrier gene or one may have had the mutant C282Y gene. He also said that most people who die from Liver failure, is usually because they have not been diagnosed with Hemochromatosis. It is not unusual for Iron levels to increase if you have been unwell. If you read on this sight you will find that some are only carriers but also have the symptoms. How unlucky can you be? I have the mutant gene. I have had my venesections and the next time when I went my iron has increased. They have then asked me if I have been unwell, a virus etc. Food can play a par, increasing your Iron. I don't believe it is a major player. Stay away from Vit C. and the usual suspects, silver beet, spinach etc. If you have more children I would suggest they be tested as well. Most women don't have the problems until they are past menopause. Having gone through this journey over the last 2 years, I believe once the Iron has done its dirty work with your joints, ie. pain Arthritis, even though your levels come back to normal range the pain will still happen. Now I have Psoriatic Arthritis, which is attacking my hands and feet. Very stiff and painful joints. This has only been over the last 6 months. It started just after my levels were in normal range. Foolishly I thought once that happened my pain would disappear. How naïve was I. My levels were 2003 when I started Venesections. Everyone will have a different journey, but most on this sight all say the joint pain is the worse. Good luck.

I suggest that you take the 23andme genetic test yourself. Ultimately you are both carriers as your son wouldnt have it otherwise. My parents are both disorder free but my brother and I both have it...no rhyme or reason to this thing. In response to your family history...many of them were likely carriers and some sure to be GH positive. As this was only dicovered 20 years ago, and in the first decade or so little was understood, no doctors knew what to look for.

Short answer: yes it's normal. The phlebotomies will work. The body is doing some rearranging with available ferritin and iron in response to the treatments.

Thank you all for your input. Is the 23andme preferable to the one through the doctors office? Ironically, my son had done the 23andme test and didn't pick up that something might be wrong from the results. He was diagnosed because he had to have liver function test in order to take Accutane and his liver enzymes were high, which eventually let to the HFE test. My blood work came back normal, so now I am unsure if I need the HFE test (doctors think it is highly unlikely).

The first thing I did was not panic. My mother lived to be 81 with Hemochomatosis and I have had it for 20 years. She had bad arthritis and A-fib and Hypo-Thyroid from it. It is not Hep C and it doesn't give you Hep C. Single most important thing is trust your doctor, follow his orders for phlebotomies, get your ferritin down and keep it down. The only reason I was tested for it was my mom had it and I knew it was hereditary. At about 40 I tested for it. Then I got a genetic test and liver biopsy to confirm and it confirmed IRON in my liver. Then I started theraputic phlebotomies and have been continuing them for 20 years and will as long as doctor says so. I started treatment early and have had none of the symptoms because my Iron never got above 300. Sounds like you caught it at a young age so you are fortunate. Follow doctors orders! Best of luck.

HH affects everything in your body. Esp the liver and thyroid. Arthritis , gastric problems, tiredness, cloudy thoughts, heart irregularities. Hair loss ,diabetes , you name it.
If he has it, yes one or both of you have it. In one form or the other. Avoid red meat, shellfish, alcohol until levels are normal. Yes levels increase after some treatments, that means they're working, the body is drawing iron from places in the body it has stuffed it all this time. In organs, joints, everywhere.
-Chewable calcium tablets and/or milk before large meals or red meat.i have a steak about twice a year.
-No alcohol or sugar or vitC before meals. It increases iron absorption. Take vitC before bed. It's good for you.
Lack of vitC is just as bad for your body and liver. God bless you and yours.