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.
Hello everyone. I just wanted to post a positive update on my diagnosis. About a year ago, my ALT was slightly elevated on a routine physical. After many tests, in November I found my Ferritin was 2182 and I was homozygous positive for HH. I was very scared. At the beginning of December I started weekly Phlebs. In late December I did a liver biopsy (not fun, but not terrible) to determine the extent of liver damage if any. Fortunately for me, God was looking out for me and I had only mild inflammation.
After 23 weekly phlebs, at the end of May my Ferritin was 88. I had a regular physical and liver ultrasound about 2 weeks ago. The ultrasound and AST/ALT enzymes are normal (19/19). I am now donating monthly, then probably quarterly or less.
It looks like things are going well, and I may be "out of the woods" Thank you to everyone for their support earlier in the year. It really helped. Also, to those who are just figuring out what is going on. Keep the Faith!!! Not everyone who has Ferritin above 1000 will automatically have cirrhosis.
Now I only limit red meat to a couple of servings a week and have cut back my alcohol consumption to just a 6 pack or less per week. This is very manageable. Thanks again.
After 23 weekly phlebs, at the end of May my Ferritin was 88. I had a regular physical and liver ultrasound about 2 weeks ago. The ultrasound and AST/ALT enzymes are normal (19/19). I am now donating monthly, then probably quarterly or less.
It looks like things are going well, and I may be "out of the woods" Thank you to everyone for their support earlier in the year. It really helped. Also, to those who are just figuring out what is going on. Keep the Faith!!! Not everyone who has Ferritin above 1000 will automatically have cirrhosis.
Now I only limit red meat to a couple of servings a week and have cut back my alcohol consumption to just a 6 pack or less per week. This is very manageable. Thanks again.
Great news
I have been a bit inactive on the forum for the last few weeks but I wanted to let you know that I am pleased you are doing well. I hope you are still doing well!
I have also found the forum to be helpful. Not many people that I have come across even know about HH.
Christine
I hope that over time your treatment enables you to become more comfortable.
The journey is not the same for all of us though and for many of us it is quite a struggle. noironco has been fortunate to achieve a good result over a one-year period and I achieved stability at around 18 months. Other people on this forum have written about their own journeys.
I have always got little electric shocks off of cars, set off metal detectors at airports and have only ever had one watch which didn't stop working after a short period of time. My friends would joke that I was magnetic but I now wonder if it was as a result of the HH. Since my ferritin levels have been below 50 this no longer happens.
It is a strange set of symptoms that we all have to manage!
Christine