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.
I did it with a "local" only, no "knock out" drugs. It hurt for a second but it was so fast.... just... poke...IN & OUT, done! I did ask to look at the specimin because I had seen some tissue examples on the internet & I wanted to compare the tissue color to what I had seen.
Then, you have to lay around about 4 hrs, but you can have family or a friend come back with you to alleviate the boredom. They have to monitor for bleeding, after the procedure.
If I have to do it again, and I may have to, I'll ask for a little bit of the drug they give that makes you "lala" without the sedating effect.
Good luck (my results came back as fibrosis with some scarring.
I felt fine then & continue to feel fine)
I am new to this forum.....and hemochromatosis....diagnosed Aug of 2010. What determines if you need a liver biopsy? I haven't had a doctor mention that to me.....all I am doing is phlebotomies right now....
Back in 1998, I had a liver biopsy because the doctor at the time said the insurance company wouldn't cover my expenses unless I had a liver biopsy to diagnose HH even though a MRI of my liver showed that there were iron deposits.
I found out later that was not true. My serum ferritin was only 369. Another doctor told me that a liver bopsy should not be used to determine if there are iron deposits on the liver because iron deposits randomly. The biopsy could be negative depending where the sample was taken.
My understanding for a liver biospy is to determine how much damage has be done to the liver from the iron. I don't know the serum ferritin level used to determine if a biospy is warranted. Perhaps someone else can mention the level.
What are your serum ferritin levels?
I'm not putting a nail in my coffin!
I was diagnosed C282Y/C282Y also. I started with a ferritin of 4097 in May 2010. I started weekly phlebotomies immediately. I've had EXTREME fluctuations in my ferritin levels. I've had TWICE weekly phlebotomies "blood draws" for several months, after a few increases in my ferritin level. When one came back at 10,363, I had a liver biopsy to ck for liver damage. The procedure was uncomfortable, for 2 seconds, and was over. I was AWAKE for my procedure and had no post procedure problems. I do not have cirrhosis or hepatitis, or NASH. My heart is OK. I don't drink & I'm not diabetic, or jaundiced, nor do I have edema, etc... I do have some scarring with fibrosis.
You can see by many of my other posts (since June 2010) that I have almost ALWAYS felt fine, even with 2 phlebs p/week! I usually do take a nap. As of 2 weeks ago, I am down to 3100.
Maybe some of my extreme ferritins can be attributed to medication I had been on for 20 yrs (it was changed last yr to something which doesn't harm the liver) or maybe it can be attributed to the stress of caring for my Dad (stroke 1.5 yrs ago).
Regardless, I have "it" and I'm LIVING with it. I maintain a positive & proactive approach.
You might enjoy reading the following article:
http://www.ehow.com/about_6613684_definition-liver-fibrosis.html
I didn't realize I had already posted to the initial post.
Maybe I'm a little "moody" tonight. My Dad's girlfriend fell & broke her hip 2 weeks ago. We visited her tonight at the rehab ctr & she's progressing very well (she's 82)!
However, dying, funerals, & personal preferences for the "details" were discussed. I know the details for me & my family. And maybe I should have waited until I was in a better mindset before letting my fingers get started here. Again, I apologize.
Welcome to the group dka. You'll find valuable information from the members here.
ps... to the silent angels... thanks for the private "hugs". I appreciate it and needed it, too!