Hemochromatosis Testing - Is it Necessary??

My father is 74 and was just told he has hemochromatosis.  It's so bad that it will take at least a year to get the levels at respectable place.  I don't know much about it but the oncologist said he has BOTH genes??  He also told me and my four brothers, our children and my father's siblings we should all be tested for the disorder.  My mother tested negative.  I asked my dr. and my endo and they said I didn't need to be - the oncologist disagrees.  Why can't everyone agree on what should be a pretty standard answer??  Now my daughter's dr. (who is also mine) tested her.  They told me because I wasn't having any more children, no point.  I find that odd.  haha  

My dad also has non-hodgkins lymphoma so treating him for this has not been easy. He has low blood pressure and his hemoglobin levels are low after weekly bleeds so it's going to be a long time before he is better.  He has to skip weeks because of it so that just puts him further behind on the treatment.  It's so bad that he has significant liver damage and bad Ascites.  

My question again is "Do I need to be tested for the gene or just have regular iron and ferritin level checks?"  Seems pretty simple to me.


This discussion is related to Hemochromatosis.

[anne128]

Yes you have to be tested, it's a bit late after the damage is done. It's easy to treat if you have it or you can have a test once or twice a year to make sure your levels don't get too high.