Inconsistent results. How sick am I?

[Confusedliver]

I've had high enzymes on and off since my 20's, but just ALT and AST. Moderate alcohol use and terrible diet. My doctor never said anything more than cut back on alcohol. I pushed the last few years to see a gastro because of stomach issues. Just diagnosed with NAFLD at 46 by being referred to a transplant center 9 months ago. Luckily they said I was too healthy to be there, the PA jumped the gun. But what a wake up call. I've changed my diet and stopped all alcohol. I'm undergoing a study right now with a top hep and researcher so I've had access to a lot of extra tests. My blood work ahas been 100% perfect for 6 months and counting. I have no symptoms beyond an occasional mild discomfort URQ, but that may be from hunching at a desk or exercise. Either way, it's barely noticeable. Both hep and my gastro said mild alcohol use is definitely OK, so I just started partaking here and there. My biggest beef is the conflicting test results. I went from a biopsy suspicious of cirrhosis to stage 3 and every test since then gets better. My last ultrasound and MRI/MRE came back no scarring or fat, specifically "Mild regions of hepatic steatosis. No hepatic fibrosis. METAVIR score F0". Can a biopsy be wrong? I know it's the gold standard, but every other test says my liver isn't as bad as originally thought. Could it have healed that fast? Maybe I'm in denial, I do consider that I am. I've had ultrasounds periodically for 10 years that said fatty liver, again, my primary said to eat better. There was never any follow up or urgency to his message. Fibroscan and the rest of these expensive tests are saying I'm OK, but biopsy say no. Second biopsy precluded me from one study because I wasn't advanced enough. I just want someone to tell me how sick I really am, but that seems to be too much to ask. The hep Dr. just keeps saying "You're in the right place".

My mother was diagnosed with NASH 25 years ago after a liver biopsy and no one ever followed up beyond the occasional ultrasound. Her primary said she's fully recovered, which is hard to believe from an ultrasound. But she changed her diet, exercises and drinks only occasionally as well. I'm confused and frustrated, I hate all the guess work. Anyway, there's definitely more parts to the story, I thought I'd post this and see if anyone else has had the same experience with inconsistent results.

[nash2 Partner]

Sounds like you have been caught by the presumed accuracy of medical tests. Biopsy became the gold standard because that is all they had. Liver biopsy has an error rate of about 18% and is dependent on the skill of the pathologist. You have to consider the testing as a whole over time as you think about progression. You didn't say what the 2nd biopsy said that kicked you out of a study. This is not a medical opinion, just speculation, but from your description you were over diagnosed in the first instance but you have taken steps which have improved your situation. It is entirely possible the the recent MRE is pretty accurate in saying you have mostly inactive disease with some damage which suggests staying course and behave like you are sicker than you probably are so that you stay that way.

Wayne

[Confusedliver in reply to nash2]

It's cryptic, possibly because of the study, but the results are as follows:

NAS>=4? (steatosis, lobular inflamation and hepatocellular ballooning must each have a score of at least 1): No (exclusionary)

Fibrosis stage using the NASH CRN histological scoring system: Stage 3

The study was specifically for those with NASH, Stage 3 fibrosis. The research assistant said that my liver wasn't "sick" enough for this study compared to the results he has seen in those accepted. Any help or interpretation would be welcome, even if it's not from a medical professional. They did recommend me for another study based on these results which got me the MRE/MRI. I haven't started the trials yet. I will say that signing up for these trials has gotten me many tests insurance probably wouldn't cover. IMO it's a great way to keep up on what's going on with your liver using the best technology available.

An interesting side note, I took the time to enter my bloodwork from my physicals for the last 15 years. In those years my weight increased by a lot on two seperate occasions, each for about 2 years or more. I am about 6'2 and 235 lbs normally physically fit. Twice I ballooned to over 285lbs. When I graphed my ALT, AST and Weight, the lines of the graph followed each other. In other words as my weight increased/decreased, so did my ALT and AST.