I was diagnosed 10 years ago with NASH. No one told me how serious it was. Just told to lose weight. Had very mildly elevated AST and ALT occasionally over the years. Dr always said it was from medication (statin). Had diarrhea occasionally. Nothing found on colonoscopy so told it was IBS. Recently had upper abdomen pain and had a CT scan which showed nodular liver. Now diagnosed with cirrhosis! I’m finding it really hard to deal with.
There are many people on this forum with cirrhosis from ALD. Does anyone here have cirrhosis from NAFLD? I would love to exchange info and knowledge with you. I know people can quit drinking and improve or even reverse their liver disease. But what about those of us with cirrhosis who don’t drink alcohol? Is there any hope with diet and exercise? Just feeling very alone 😔
Written by
FlippinOut
To view profiles and participate in discussions please or .
We don't keep those stats, but I believe most of the people here are because of diet and not ALD. A lot of us have stabilized our disease and a significant portion have also had some regression. I have improved from an F4 NASH/cirrhosis to and F3 and have been stable since 2017 through diet and exercise so on your next flip land on your feet and take a breath.
Thank you for the encouragement. It’s great to hear you have been stable for so long. I’m working on losing weight, walking at least a mile every day and doing some strength training with weights. It’s hard to do too much at age 72 but I’m sure gonna try.
I just get really frustrated when I find so much promising info for improve from most other causes but not from NAFLD. Is it because not enough research has been done on NASH as a cause of cirrhosis?
The problem for liver scientists is that the liver is so complex. We are just getting smart enough to be able to treat the liver without damaging something else. I'm 81 by the way so its good to see you kids working at it.
Don’t feel alone. I’m soon to be 73 years old. Have NAFLD with a CAP score of 261. I used to drink alcohol in moderation but gave it up completely in November 2022. I have arthritis and underactive thyroid which has contributed to my condition. I’m careful with my diet. Eat a lot of fruit, vegetables, nuts and seeds, whole grains like quinoa, mainly low fat dairy and fish and chicken once or twice a week. I have lean organic beef about once a month. I’m overweight BMI 27 so try to exercise by going to aerobics and yoga when I can and walking. I have the occasional treat if I’m in company of others and I don’t fuss if someone invites me for a meal. My scores are stable according to a recent fibroscan. I was a bit disappointed that there was no dramatic improvement but I’ll just keep going. I try to be positive and enjoy life and not worry too much as stress is the worst thing for the body. We can only do what we can with the information we have.
Thanks for the encouragement Corin. Can I ask what symptoms you had that got you diagnosed and what tests you’ve had besides the Fibroscan? Did they say you have cirrhosis? I’m still confused about the staging/fibrosis/cirrhosis thing and which test is most accurate.
I started off with pain in my upper right side. I’d had it on and off for a couple of years when I finally saw a doctor. He sent me for an ultrasound. Results were bile ducts etc ok but had a fatty liver. This was not considered worth following up but after a few months I asked to know the extent of the fatty liver. I had an ELF test which indicated the possibility of significant fibrosis. I then saw a consultant in Nov 2021 who repeated all blood tests and did a fibroscan. This showed moderate fatty liver CAP score 270 but no fibrosis kPa 4.3. He said just lose weight and only drink alcohol occasionally. Since then I gave up alcohol completely and have lost a few pounds. My recent fibroscan was CAP 261 and kPa 5.4. I was advised to carry on with my healthy diet, exercise and lose a few more pounds.
I saw some of your posts -- it sounds like you should get checked for HE, ammonia alone is not a very reliable test for it. Brain fog/insomnia/ muscle pains and muscle loss are all common signs of HE. Do you have other symptoms, like funny smelling sweat/ odd metallic or burning taste in mouth/ regular pressure headaches?
If you can't get a prescription for HE meds, you can try lactulose over the counter (in the UK) and/or l-ornithine l-aspartate (LOLA) anywhere, it's easily found online. Neither are harsh on the liver or have any other major side effects if taken over a few days. If you feel significantly better with either of these, that might suggest you do in fact have HE that needs treatment. Lactulose helps with HE by binding to ammonia in the gut so it doesn't get into the blood stream, and helping it pass in stool. LOLA is an amino acid compound that helps with ammonia metabolism. It is supported by decades of research and is regularly prescribed in Europe. Xifaxan/rifaximin is perhaps the most effective medicinefor HE, but requires a prescription. It is expensive.
BCAAs have also been researched for helping with both HE and muscle loss, with very promising results. One combination (AXA 1665) can easily be replicated at home. I use it and am convinced it helped me rebuild muscle after my HE. I felt significant changes in muscle soreness and further improvement in mental clarity almost immediately after starting LOLA and even more AXA 1665.
Flip. I too never drank much...what got me was type 2 diabetes. Several years ago at a health fair my bilirubin was elevated. It had been elevated, along with decreased platelets. So at my instance..I was referred to a GI who said Gilbert disease...ok it went on for a while labs the same so I called the hepatology clinic at the state medical school, got appointment, they said NAFLD...they wanted a fibroscan, so at my next visit...was scheduled went down for appointment (250 miles away) well that person not there that day that did them...then covid hit...then they wanted biopsy...but local gp said dangerous and my health coverage would not cover...so early last year my gp had ultrasound done for gallbladder....which gallstones but spot on liver...a number of scans done...told I had liver, gallbladder, lung cancer...saw transplant dr...asked where biopsy was..was never done..so in 2 weeks he did one...no cancer but stage 4 cirrhosis...So yes you can get it without drinking...but a group of good drs can help alot...
My bunch...the liver clinic called (only one in state)..said I had it, that I didn't need to come to the clinic...local GI could manage...I said no...I wasn't going to let them get out of it that easy.
Good luck...keep well read..and don't be afraid to say something
Wow JD that’s quite a journey you’ve been on. I also have type2 diabetes and high cholesterol and bp (metabolic syndrome) which is what got me. How are you doing now? What is your treatment plan? Is anything helping?
Well that is a good question All say loose weight, but I haven't been able to.
I walk 3 to 5 miles a day and watch what I eat
.. I have OA and legs and knees hurt when I walk. The only thing the liver clinic says loose weight and consider Mediterranean diet. Not easy done in our rural area. My endos try, added trulicity, can not use the other glp's since the insurance Co needs to see proof it
Will help.
I asked about drug trials, but liver center says they are not in any at this time.
I an considering another center due to all the above...plus the center has sued UNOS, and their liver transplants have fallen almost 50 percent...but then liver clinic would be 350 miles away !
Every 6 mo have mri and tumor markers watching for HCC.
My local drs said I could have HE at times due brain fog and being so tired...so taking lactose..
But, liver clinic says nothing.
So we are trying to figure how to loose weight.
I am wondering if currently the weight is ascites...but local drs said liver clinic should handle !!
Thanks for your reply. It must be so frustrating living so far away from the services you need.
As far as your weight, I think ascites would show up on the MRI scan. My CT said No ascites but I can’t lose weight either. Diet and exercise for over two months now have resulted in loss of only 2 lbs and no change in my blood sugar readings. I don’t feel any better and I’m very discouraged. But I also know it took years to get to this point so it’s not gonna change overnight. Trying to keep my hopes up. Good luck to you too.
Yes, my husband has never been obese. We drank maybe one day per weekend in our late 20’s. Rarely drank during our 30’s because we were busy raising babies, have had occasional drinks while out to dinner but have never had the house stocked with alcohol of any kind. My husband’s cirrhosis is not from alcohol, obesity, or diabetes.
I had a biopsy 18 years ago. I was only told I had a fatty liver. I saw that biopsy report on doc's computer. It said NASH! Eighteen years ago! Skip to last February, I told GP I had an uncomfortable feeling in midriff. She thought gall bladder and ordered US. That showed nodular liver. Got referred to GI doc. MRI, fibroscan, endoscopy, 13 vials of blood taken for tests (one of which tested for alcohol consumption in the past 3 weeks-negative), etc. Turns out I have cirrhosis now, what a shock! Where did that come from? CAP 343, 23.2 kPa, MELD 6 or 7. I have had at the most 5 daiquiri s in my 68 years over 30 years ago. No other alcohol except a sip on Sundays at church. I don't like the stuff. I was told to lose weight if I can (lost 10 pounds), exercise more (now walk 1.2 miles 6 days a week), eat healthy (cut sugars way back, try for Mediterranean diet).
More tests soon to see if there is any change. What else can I do? I feel hopeless and very alone also. 😞
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
