Help me understand : I’m a little... - Living with Fatty...

Living with Fatty Liver and NASH

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Help me understand

AllHis profile image
12 Replies

I’m a little confused. With the help of the SUNN study, fatty liver was identified with “@50% fat and no scarring” 2 years ago.

Fast forward. FibroScan recorded 400 as CAP. I understand that 400 is max. (OK so far.) Someone help me understand the difference between cirrhosis of the liver and it’s “stages,” and NASH and the S1, S2, S3, S4.

I’m in a study & I’d really like to understand what the liver biopsy CAN and CANNOT diagnose. The study doc said it looks like NASH at 3 or 4, but FibroScan tends to run high. Liver biopsy likely will confirm NASH 3. (Now is that equivalent to cirrhosis?)

Could we finally find the “cause” by the liver biopsy? Could something like lupus be a culprit? Or my prescriptions for RA and Barrett’s Esophagus? Could a biopsy identify PBC?

Is it weird I feel blessed to have a liver biopsy?

Hugs!

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AllHis
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12 Replies
MINTVCX profile image
MINTVCX

As I know biopsy can confirm/rule out NASH and stage this. So some kind of inflammation process in the liver. Also it can confirm tha cause of liver damage (AIH, hemochromatosis, fatty liver, Wilson, PBC) in most cases. It is also considered as golden standard in staging fibrosis (scarring) which is a different thing than S1, S2, S3, S4. But it is a risky, invasive procedure.

While fibroscan can show the level of fat (CAP) and fibrosis (Kpa) with some probability. It cannot see degree NASH stage.

But the best option is to ask your hepatologist.

Alterity profile image
Alterity in reply toMINTVCX

Everything showed I was down to stage 3 in the study I am in, except the biopsy it said I was still in stage 4. Then I got really sick from the biopsy and it got infected and I was on 3 different antibiotics until I was well again. Be careful. Yes I loved biopsies until this last one which was my 3rd one. I thought at the time the dr was not careful enough and I will stand my ground the next time. Make sure they clean you up well and sanitize the area and take there time doing it. I will refuse to have the same dr. that did mine the next time. good luck.

MINTVCX profile image
MINTVCX in reply toAlterity

Yep there is a risk of complication during biopsy. That's why it is ordered only if really essential and if this can help with treatment/diagnosis. And dr checks all this.

AllHis profile image
AllHis in reply toMINTVCX

I wish to reply to you here to keep everything in one spot and to ask for your personal opinion. My liver biopsy was canceled because the MRI PFF results revealed not enough fat to justify the biopsy…Just like that, in a blink of an eye, out of the study…

Your personal opinion, do I try and get a biopsy through my insurance? Is a liver biopsy my only option for a diagnosis, or do I just continue on…

MINTVCX profile image
MINTVCX in reply toAllHis

Well I cannot give you my opinion because I am not a doctor so you cannot rely on it. I can only advice you to find good hepatologist, share all your medical history/tests and ask if biopsy is really needed in your case (for example high kpa result in Fibroscan but all should be taken into consideration).

That's the only reasonable option I think. Good luck.

AllHis profile image
AllHis in reply toMINTVCX

Thank you. That was what I was thinking…kPa was 14.2. I think that could be investigated.🙂

AllHis profile image
AllHis in reply toAlterity

I so appreciate your honesty. I truly understand the risk of a biopsy, but was so hopeful for a diagnosis. Five years of excessive bile, the only prescription is a PPI (for life!) and never granted access to hepatologist… I was actually looking forward to a liver biopsy today for answers… Fasted and prepared, I traveled all the way at the hospital today, only to find out my MRI PFF revealed not enough fat to justify biopsy. What to do next?

AllHis profile image
AllHis in reply toMINTVCX

Thank you. I’m trying my hardest to see a hepatologist. It seems they are in short supply… It looks like the Study could prove useful to me. A win-win! After five years of struggling with copious amounts of bile, a liver specialist may be more interested in my story if I collect the appropriate information from the study. I will be so much happier when I am received seriously. 😊

AllHis profile image
AllHis

I am receiving my care at Kettering Medical & the study is in Springboro, OH.

AllHis profile image
AllHis

I’m confused about “S3 and S4” “fibrosis vs NASH and when cirrhosis enters or overlaps… will liver biopsy give me an “official standing”?

nash2 profile image
nash2Partner

The "S" stages are steatosis or the amount of fat. The "F" stages refer to the amount of scar tissue. F4 and cirrhosis are the same thing. Docs just called it cirrhosis before they created the staging method and NASH is a name that was created to describe the process of inflammation and scar formation as a sub-division of fatty liver disease. Biopsy will tell your docs things that they can't get any other way but all diagnosis is a moving target. I've had 3 biopsies and learned new things from all of them.

AllHis profile image
AllHis in reply tonash2

Thank you. What I thought I heard the doc say was NASH 4 from FibroScan, but she was predicting NASH 3 from liver biopsy. Too much information at once, I guess, because I was get confused if we were talking fat or scarring…doc was just trying to move me along into the actual study. She seemed both excited and surprised I qualified for the study. I’m overweight, but no other markers. (Well, nothing diagnosed.)I’m missing the “S” or the “F” part of the picture. Good to know I’m not alone & well on my way to Answers.

Thank you so much Wayne. I’ll be back with more questions. Lol!

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