I'm a newby here and so confused

[Trodriguez]

I have had elevated LFTs for a couple of years now. They kind of fluctuate in and out of normal range. However, I recently went to the ER due to lower abdominal pain. During that visit they did a CT Scan and found diverticulitis and fatty liver. My Gastroenterologist then sent me for the following test:

MRI ABD/Pelvis with Liver Multiscan: Inflammation and fibrosis and a high lifetime risk of developing liver fibrosis Stage II or higher. 32% Proton density fat fraction: severe hepatic steatosis.

LIVER ELASTOGRAPHY: Estimated stiffness of 9.8kPa-within the cirrhotic stage of liver fibrosis corresponding to Metavir score F4.

NASH FibroSure: No Fibrosis

Steatosis Score .78 High S3-Marked or Severe Steatosis

NASH Score: N1-Borderline or probable NASH

ALT: 61

AST: 43

Glucose: 111

This is so confusing. The NASH FibroSure test says no fibrosis, borderline NASH and the Elastography says I'm in cirrhotic stage of fibrosis. Don't know what it all means??

My next doctor's appt not until 3/31/21. This is so scary.

[nash2 Partner]

Hi T

It seems like you have captured pieces of multiple tests but it sounds like you have a liver with significant fat at 32% from pdff, you have liver stiffness from elastography and confusion from the blood work. An important part of the diagnosis that your doctor is analyzing is what is the underlying cause. Elastography, for example scores quite differently depending on what has caused the problem. HEP C is quite different from NAFLD for example and multiple issues can overlap so you have plenty of questions for the doctor but none of those tests suggest that you are end stage so take a breath and try to relax a bit. You have to be serious about it but you are not helpless here. Good luck.

Wayne

[Trodriguez in reply to nash2]

Thank you so much for your reassuring words. I needed to hear that. My doctor has said that I have NAFLD. My hepatitis panel all came back negative so, I know it's not that. It was just so scary to see that F4-cirrhotic stage.

Thank you again.

[Troutwhisperer]

Hi Trodriguez,

Understanding different liver tests and the picture they paint is not easy. I am 70 years old, male, and diagnosed with NASH many years ago. So you might think I’ve had a lot of testing and questions and consulting with doctors over a long period of time. Nothing could be further from my truth. Liver health, especially fatty liver disease, has largely been ignored for decades. We are told there is “no treatment”. That is very misleading and health care administrators have been using this as a reason to restrain their doctors from often doing testing that would be very appropriate. Also, for me, no mention to patients of the importance of getting involved as a patient with appropriate clinical trials. Which I think “NASH 2” would agree help to move all of us forward in our collective efforts to find a treatment that halts and/or reverses fibrosis and reduces your NASH Stage.

You can check out Intercept Pharmaceuticals regarding their clinical trial with the drug Ocaliva. We are hoping the FDA will eventually approve it as results have been promising in halting progression of fibrosis. Stage 3 of 4 Stages has been completed so far.

Sorry this is so long. However, in my case, I discovered the Fatty Liver Foundation a little over one year ago. Up until then I have had two ultrasounds provided by Kaiser Permanente. I am trying to get approval for a Fibroscan. The more information we have as patients the better we will understand NASH, and be able to question and make requests of our doctor. We begin to figure out what we need and want. At this time we are our own best advocate.

I would suggest asking your doctor if a Liverfast test is possible. It is one of the newest noninvasive blood tests, using ten bio markers, to come up with three separate scores for: fibrosis, inflammation and bloating (activity), and steatosis. The FLF website has good info about this test. FLF has been enrolling members in their own study of the Liverfast Test. Reach out to FLF to find out if they are still enrolling people if you are interested in participating. The test can usually be done where you live or at a nearby lab.

Best Wishes!

Troutwhisperer

[Alterity in reply to Troutwhisperer]

Not sure where you live by I have had NASH for 20 years and have had MRI's or Ultra Sounds every year or 6 months for all 20 years. In the last 3 years I have had Fiberscans. I had had 1 biopsy. I have been in the research program for the last 18 months and they did a second biopsy when I started and I will have another one 2 months from now. Find yourself a Dr. looking for a cure. Family Dr. don't care or don't know what it is. A specialist in Nash realizes the Liver functions your body. There is so much more yet to learn but they learn from us. Good Luck. I'm at Ohio State University in Columbus, Ohio and I moved 60 miles to be here to help find a cure, because I know my kids will need it even though the Dr's tell them not to worry about it. They are the are I was when I was diagnosed which worries me because their doctors say what do you want me to do, cut you open and look at your liver. Bad Dr's. This is not a laughing matter, millions are dying and they don't know from what. They are dying of liver not functioning and it is shutting the heart and other parts of the body down. (Just my beliefs) Good luck. I'm 65

[Hidden]

Hi there. Did you ever get more clarity from your doctor?

[Trodriguez]

Hi, yes I did. I had a liver biopsy and was expected with NASH Stage 3. Just started a clinical trial and hopefully that will help and of course have completely changed my eating habits and started exercising.