Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
45 yrs old., No symptoms. All lab values within range, except slightly high ALT 66 then down to 40, now back to 55. Ferritin is really high at 2182. Homozygous for HH. I did my homework and figured out what was happening when my doctor wasn't concerned about the liver values. No family history, because I was adopted.
5-6 mos ago had a normal ultrasound with no evidence of enlargement, or overt cirrhosis.
I meet with the Hematologist next week and have a biopsy scheduled for next week probably as well. GI doc won't be able to give me a prognosis until he knows the extent of liver damage.
I really don't want to die of liver cancer from cirrhosis. The pleb's and no drinking don't bother me. I'll take it...
Just sharing my story. Thanks.
5-6 mos ago had a normal ultrasound with no evidence of enlargement, or overt cirrhosis.
I meet with the Hematologist next week and have a biopsy scheduled for next week probably as well. GI doc won't be able to give me a prognosis until he knows the extent of liver damage.
I really don't want to die of liver cancer from cirrhosis. The pleb's and no drinking don't bother me. I'll take it...
Just sharing my story. Thanks.
Anyone with HH (Heredity Hemochromatosis) should have the Ferritin below 50. What's your last Transferrin saturation % level?
Keep in mind that the lab range is for people who do not have HH.
I've been dealing with HH since 1998 and my Ferritin level was only 369 at diagnosis and my saturation level was at 90%.
Currently I focus more on my saturation. When that hits 40% or above I get fatigue and brain fog. Last July it was at 63% and my ferritin was at 22 so I was phlebbed. The brain fog went away.
JMHO
Glad to hear you don't have any liver damage.
NoIronCO