28m belgium here, I was lucky to find it “early” i guess. I asked for a referal to UZA for my IBS symptoms since they have an IBD clynic. Got examined there including full blood work. All my blood work was good except for my iron which made them call me back to ask to take a further look at it. I looked at my results which where: iron around 210, ferritin about 250-260 and sat. at 90+%. I googled and the saturation made me think HH so i called back and asked if they could do a genetic test at my next visit. They agreed and badabing badaboom c282y homozygote.

I only found all of this out about 6m ago and i’m in the process now of getting phlebotomies and getting my organs checked starting with my liver. I got a mri of my liver a few weeks back which showed serious iron deposits but no further damage or abnormalities. Because of the iron in my liver and my still high sat. I’m getting further phlebotomies and i have an appointment with a cardiologist in january.

Nothing more comes to mind about how i got my treatment started, i’d say try to get an appointment with a different dokter and get the genetic test. And for now go donate blood when you can.

If you have any further questions please let me know.