Ultrasound vs Fibroscan and Cirrhosis

[arc2884]

I have Hereditary Hemochromatosis. I get ultrasounds done every 6 months for monitoring purposes since 2017. The last ultrasound performed was 7 months ago and was "remarkable". The most recent ultrasound report said the following: "liver demonstrates lobulated contour which suggest fibrotic changes. IMPRESSION: Hepatomegaly. Lobulated liver contour suspicious for mild cirrhotic changes."

My GI recommended a Fibroscan to determine the level of "cirrhosis." Although I am still waiting for the final official report from my GI, the tech that performed the FibroScan, told me that my numbers were very low and that she was expecting an F0-1 based on the numbers. I was able to see on the screen that my number was 4.4 ksa (average).

I am really concerned about this. All my Labs are normal (AST is 31 and ALT is 24). My GI recommended to increase the frequency for phlebotomy to make sure that I was anemic. She recommended a liver biopsy (which I had one performed in 2017 and came out clear), to diagnose or rule out cirrhosis. I pushed back on the biopsy until we get alternate methods to be certain, such as the Fibroscan and now I am thinking about the MRE.

Would you also get a CT scan? Maybe another Ultrasound?

My understanding also is that even though the "gold standard" is the biopsy, is also not 100% certain because it can get a sample from a "good" area.

Am I missing something? I discussed with some friends that are doctors and can't explain the change in only 7 months.

I am not a heavy drinker, my only change is that I have been training for a "half-marathon" that I am running in 2 weeks.

I am really concerned about her communication, even saying that "since you are young, it should be fine because they will bump you up on the transplant list". I went from your labs came ok, to there is something suspicious in your ultrasound to liver transplant. All of this in 2 minutes! I have never been so shocked in my life.

I have a family, 2 beautiful children, and the last thing that I would want to share with them is that I could die if I do not get a liver transplant!

I have recommendation to actually get a second opinion/new doctor. This is a new GI (my last one was a hematologist and retired a year ago) that is not a hematologist.

I know this is a long post, looking for maybe something that I am missing, or I should be asking.

Thank you!

[AyrshireK]

4.4 kpa IS in the Fibrosis range F0-F1 as anticipated. Although there isn't a bar on the fibroscan score chart for haemochromatosis but for most liver conditions a kPa score below 6.5 ish is normal.