I read every post on here but don't write too often. I like soaking up info and stories to try to help me understand liver diseases. I wanted to share whats been going on with me. I had RUQ pain on and off for over a year and it was intensifying this past February so I went to the doctor. I was 5'10" and 190lbs, I am 34.
They suspected that gallbladder issues. After Ultrasound, HIDA Scan, CT Scan that all showed nothing wrong with my gallbladder they told me that I had a fatty liver. I had an endoscopy done which also showed nothing. I then had a Fibroscan done. The results were scary to me. NASH, 12kPa, CAP 294, F 3-4, S>3. Went to a basic hepatology appointment where I had a lot of blood work done trying to find the source of my liver issues. All blood work came back negative so they ordered a liver biopsy. At this point I tightened down on my diet and began excising more.
The biopsy was done in April and confirmed that I have NASH but not as severe as Fibroscan suspected. Results showed NASH with minimally active Steatohepatitis and Nodular Regenerative Hyperplasia. The results were not explained to me very well at all, just a list of medical jargon. I was happy to find out the NASH wasnt as bad as suspected but I was continually feeling worse RUQ pain and fatigue. I was also very confused why the Fibroscan and Biopsy showed such different results.
Finally at the end of October I had my first real Hepatology appointment with a real Doctor. I am now 145lbs, I didnt realized I had 45lbs to lose. He explained that the NASH is being managed well with my diet and exercise from what he can see but that the Nodular Regenerative Hyperplasia was a concern. He explained to me that the Fibroscan results were accurate, that we had thought there was just NASH going on but the biopsy showed us that the NRH was there too, also causing liver stiffness. When I asked about my pain I was told that he doesnt believe that my liver is the cause of the pain, that he believes there is more going on because I experience this constant pain, my stool is light(ish) and typically not firm, and that I lost 45 lbs without intentionally doing so. Just eating very well and exercising. The pain is very much in the location of my liver, if I drew on my body where I feel it, it is exactly where my liver is, across my front, RUQ, right side, and right back. He ordered an MRI and Endoscopy and Colonoscopy.
I am having them all done next week. I am looking forward to the tests in hope of discovering something that could be the cause of all of this, I am otherwise a very healthy person. But I am also terrified that I am going to find out bad news. The amount of pain that I experience feels like there is no way that I am healthy but all my tests (outside of biopsy) say that I am healthy. I dont have a point to posting this other than to share my story. I have NASH and Nodular Regenerative Hyperplasia. I try to not think about them because there isnt anything I can do other than to live the most healthy and positive life I can. I am doing my best but it is scary wondering what the heck is going on inside of my body. For now I mostly only deal with pain and fatigue.
I am always trying to learn as much as possible about both NASH and NRH. Anyone else out there have NRH? Not much info to be found about it on here, I have read everything.
Keep your head up out there. Live your best, healthiest life. I will post if/when I get results from my upcoming tests.