Hemochromatosis

[Snoel1]

I was told that I have the gene variants for hemochromatosis and that it is a primary risk factor for my cirrhosis. Has anyone else had this and can share information and experience?

[nash2 Partner]

Hi Snoel

There are a couple of genes that have been identified and can be tested for. The experts suspect that there are probably about a dozen that may be involved but not enough research yet. The result is that iron collects in the liver and damages the cells. The treatment is phlebotomy, drawing blood regularly, but the first step is to do blood liver panels to see what iron your blood actually has.

[nash2 Partner in reply to nash2]

I had high iron and they drew 7 liters over 6 months to reduce it.

[Snoel1 in reply to nash2]

My ferritin is over 500 but they don’t do phlebotomy until it is 1000. They won’t test my children because they are female. They did test my nephew and he has it.

[nash2 Partner in reply to Snoel1]

Women do have some protection until menopause so the docs use different rules for looking at iron but it clearly runs in families

[Snoel1 in reply to nash2]

Test results in and I have the double Y282c gene for hemochromatosis. My liver doctor believes that is probably why I have the cirrhosis. I just want to thank you again. Without your scan I never would have known any of this.

[nash2 Partner in reply to Snoel1]

Glad you have been able to get the answers. You probably know it runs in families so testing blood relatives is a good idea. I had siblings and kids tested.