Hemochromatosis and Cirrhosis stage 4

I was recently diagnosed with hemochromatisis and stage 4 cirrhosis. I have started the bloodletting but from what the doctor says I am still looking at death in the not so distant future. I, too, am searching for answers.

I had a liver biopsy 20 years ago because of suspected hemochromatosis. My liver was fine so only had two more ultra sounds and no more treatments.

2016 I was having some blood issues as well as elevated liver enzymes (have had since biopsy) so I had several blood tests. On one it said my iron saturation level was at an ALERT level. Remember no treatment for 20 years. Not even a plebotomy. On my own I went to Red Cross and gave blood. My iron level went to half, a second one brought my iron level to normal. In the meantime, my doctor had me get a genetic test for the mutation which came back with only one, not two. Same as you. My blood showed a low platelet count so my doctor recommended an ultra sound. Initially they diagnosed me with cirrhosis as well as numerous small masses indicating metastatic cancer. Further tests showed only cirrhosis, no cancer.  So my question is, since you and I seem to have similar situations, did anyone ever wonder about the fact that high levels of iron were flowing through your organs, primarily the liver, and was that a possible cause of the cirrhosis? There isn't a high concentration of iron in my liver so my doctor's are not convinced that this caused the cirrhosis.  But doesn't common sense tell you that day after day, year after year of this flowing through your veins wouldn't cause damage? I did drink some, but not excessively, and of course the doctors have latched on to that as the cause. I was also diagnosed with NASH for most of my life which also can be the cause.

i hope you are well and that this helped you.

The jury is still out on whether or not I actually have hemochromatosis even though my iron level was at ALERT levels.  I've had two phlebotomies which seemed to correct the problem.  The biggest problem I have is that while testing for this, I had an Ultrasound which showed cirrohsis of the liver.  They originally thought I also had liver cancer, but further tests showed that I did not (Whew!)  I have a normally functioning liver, all organs are healthy, so I'm more or less in limbo.  Just trying to eat right, little or no alcohol, etc. I have a follow up with the doctor in a few weeks and hopefully I'll find out more then.

Hi, yes I have been diagnosed with Hemachromatosis after they treated me for 22 years for Chronic autoimmune help. I went and had my first treatment for hemachromatosis which is them drawing a pint of blood. After the treatment my help numbers started getting better. A doctor in the hospital said it is possible to reverse the liver damage it takes a couple of years . I am 64 so I hope I make it.

May God bless you and keep you healthy long enough for the cure. I'll be praying for you and don't let them scare you on here. How many bloodletting have you done.?

I have only one of the genetic markers and have been told I do not have hemochromatosis.  However, my ferritin level was very high so I had several phlebotomies.  Shortly after that I was diagnosed with cirrhosis.  My hematologist told me that the high iron content was most likely from the liver issues.  I have been diagnosed with alcoholic liver disease even though I am not an alcoholic. I cut out any drinking almost a year ago, but unfortunately still got cancer.  However, I'm very fortunate because the high ferritin levels, and other symptoms, pushed my doctors to look around at other causes and found my liver issues early.  I'm doing great by the way.  Contrary to many people, I never had any symptoms for either the hemo or cirrhosis and I still don't. Right now I'm just under observation regarding the ferritin levels in the event it goes really high again.

?You might ask your doctor to keep a close eye on the cirrhosis.  I had an ultra sound, CT scan and MRI before a lesion was found.

Good luck!!