new to this site..
yes I had a liver biopsy when first dxed 10 years ago..
results were:
stage 2 cirrhosis and my iron was a 4+

What are your ferritin and transferrin levels?

ferritin levels were not all that high, 799, transf sat levels were 97%
my levels no are ferritin between 35-50 and transf sat are hovering around 32%

Is 4+ the highest?

Are you doing ok?

Do believe 4+is the highest...they said it could not tell me how much iron I had in my organs only that my liver was completely saturated. However I did have my thyroid removed when first diagnosed and it too was completely saturated with iron. Had another liver biopsy two years ago after 8 years of phlebs when I had my gallbladder removed and my liver was still stage 2 cirrhosis and iron 3+.

I ended up having some major problems from HH..some heart issues, waiting to replace a valve sometime this year, my thyroid was destroyed, gallbladder shot, spleen totally enlarged, pancreatitis, and severe osteoarthritis to where I cannot walk more than a block.. find out Tuesday if I get total of partial hip replacement..

I am only 55 and and am female...So it hit me real hard in my mid 40's..
But I am doing good, none of my children have it so I am happy..

Yes, mild scarring with some fibrosis. Don't know about the "+" portion but will ask when I see him on Thursday! I'm going to look & If I can't find my copy of the biopsy report, I'm asking for another one.

My ferritin at diagnosis was 4,097. June 2010.. But he didn't order the liver biopsy until I went haywire, ferritin kept jumping up & when I hit 10,363... he did the biopsy.

Three weeks ago my ferritin is 40. And I've only had 3 phlebs this yr. WOOHOO! Wonder what my ferritin will be tomorrow?

zzzzzz

When I asked for my biopsy results first they sent me a report explaining the procedure

then, my doctor's explanation

didn't see the hepatic iron index until I finally got the pathology report

OK, I discussed my biopsy results with my doc today. It isn't 'staged' as it normally is done on those reports. It was only interpretted as 'some bridging fibrosis'. He isn't sure why they didn't specify bc they usually do.

He agreed to order another ultrasound, tho, before I come back to see him in 3 months. I'll also have repeat liver enzymes to comare to May 2010 at which time they were doubled/tripled.

zzzzzz

a needle liver biopsy for HH and they didn't even get a quantitative measurement of Fe?


that doesn't sound right

Yep! I asked the doc if he can talk to the pathologist to see if they can do the stain now. I KNOW some of our 'parts' or tissues are kept for YEARS when we have surgery and something is removed (as a cancer genetic researcher told me) so that when/if new technologies and gene identification can be matched... it's a huge step forward in medicine.

Sooooooo, IF they keep that bit of tissue.. can they test it? He wasn't sure. I saw the report and it's not there:(

zzzz

I'm hoping "FeriScan" R2-MRI imaging technology is more readily available in the near future.

that's it. "bridging fibrosis, some scarring".

Yes, I asked for the Feriscan when I was diagnosed, almost 2 yrs ago. Not readily available, here either.

zzzz