Almost three years ago I was diagnosed with NASH and Stage 3 Fibrosis. The only comorbidity I had at diagnosis is that I was moderately overweight. Through Diet and exercise I was able to see a reduction in my test results to an F2. I signed up for a drug trial that I completed last year and have had multiple MRI/MRE's and Fibroscans so I assume they are accurate at F2? At my yearly Endoscopy, I was diagnosed with Grade II esophageal varices which led to the diagnosis of portal hypertension. I wasn't expecting this since all indications are that my liver is recovering. All bloodwork is normal and my Fib-4 score is 0.84. Does anyone else have a similar diagnosis at this stage of Fibrosis and what are you taking for it? I just started blood pressure meds three weeks ago at 48 for slightly elevated BP and now they want me to take Nadolol, which also lowers BP. Any advice or feedback is greatly appreciated.
Portal Hypertension at F2: Almost three... - Living with Fatty...
Portal Hypertension at F2
I have found over my 20 years of Nash that my blood pressure yo yo's and you really have to watch that it doesn't go to low while on meds. It depends on if the liver is having trouble digesting and working overload then my pressure goes up. The last few years my bp has been low or normal. I did take meds for a while for my esophagus, but when they said the meds caused cancer I decide to watch what I eat more and only take it when I needed it instead of all the time. I'm to have another scope in the next 6 weeks. I am also on the trial study and going to continue with the real pill on a study for the next 18 months. I talked to my doctor and if I continue on the study and my liver turns on me then they have all the information they need to get me a living liver asap. I was at stage 4 lost 48 pounds and they say I'm in a 2/3 now. Will know more in 6 weeks.
My dad died of a hole in his esophagus 25 years ago, I still say he had NASH, but it was unknown what it was then, he was heavy his entire life. I've seen the signs and learned so much and as my dr. said there is still so much to learn about the liver. I hope I can help. I listen to my body the best I can, I still want to live another 20 plus years. I'll be 65 next week. Was diagnosed when I was 44, but had fatty liver since I was 24. Good luck. Now they say every 1 in 4 has NASH.
Thanks so much for taking the time to reply. Stories like this make me feel better and you have a story similar to mine. I think I was in college the first time my bloodwork showed elevated enzymes. In my mid to late twenties is when I started yearly physicals and was told about fatty liver. But the message was always benign, the Dr. never gave me a stern warning that I was killing my liver just "try to lose weight and limit alcohol". I'm hoping to have the same story as you at 65! Do you know if the pill you are taking is Obetacholic Acid? I tried to get into that study but my biopsy disqualified me. According to the Dr. my liver was too healthy for what they wanted, which is just one of many conflicting answers and test results I've received over the past three years. Frustrating! My study drug was Pegbelfermin.
I'm to learn in 2 months what I have been taken and what I will be taking in the study. I'm working with the Ohio State University Wexner Medical Center, I have no idea who they are working with. They asked me a couple weeks ago if I was willing to continue the study and take the real pill so they know the side affects and how it treats my liver. So I signed up for another 18 months, hoping I can help my children and other people. The most painful is the Biopsy with I will have my 3rd one of my life in a few weeks. The other test are just more of taking my time out of my day, little pain. They want me to start a NASH group because they say if I had not had the attitude I have had all along, I would of been dead years ago. I look at it this way, you can get in your car and die in an accident 10 minutes from now. If I listen to my body I should live a full complete life. I have had what I call crashes many times, the liver just shuts down. I say it works like a cell in a car battery, there are parts that just die and need charged. I find when this happens it's best to just go to bed. I have had less of those the last few years. I removed a lot of stress from my life when I changed jobs. ( I have missed very little work through the years and plan to work 2 more years) I eat much better now, but once in a while a hamburger or sweets hits my mouth, but not often anymore. I never told my family until the last 5 years, but 20 years ago they gave me 6 years to live. They said there is no cure. Now that I have beat that for the last 14 years, I tell everyone. I really think heavy set people that die of heart attacks have really died of NASH, that part of their liver shut down which caused the heart to fail. I have Dr's that believe it too, because when I was crashing there were times I felt like I has having a heart attack too. The heart Dr. Tried to give me statins and other heart meds and my liver rejected them and put me into heart attack symptoms. I fought with the dr and said I'm not taking anymore of your pills. Your pills are killing my liver which is killing my heart. If you are saving my heart my liver will die anyway. He called me the next day and apologized and said I have now read up on NASH. I will not give you any more meds until you want them. I got really sick after having both hips replaced from the pain pills. I now only ask for meds that go through my kidneys. I only take aleve when I need something for pain. I watch all intake to my body and I listen to my body. If you want to live. I would suggest just listen, if it rebels, don't eat that or take that pill again. Good Luck.
I love your outlook and I'm so appreciative of you sharing your experiences. It helps. I too am learning to listen to my body.
My understanding is that portal hypertension differs from systemic hypertension, but like you, I have not been able to ascertain a true answer. My doctor wants me on a BP med specific for portal hypertension, but I just started a medication for hypertension a month ago. He clarified he wants me to take both, but no answers to the questions:
Will my BP bottom out on two medications?
Was my systemic hypertension a symptom of portal hypertension? If so, shouldn't the one medication for portal hypertension do both?
My bloodwork and numerous liver scans don't indicate portal hypertension, could the varices be from something else? Like systemic hypertension? Or are the varices a misdiagnosis? The research hepatologist agrees that it seems odd based on the status of my liver, he is requesting the EGD information so he can review it. Hopefully a misdiagnosis but if not, I still have questions with no answers.
Interesting... I was recently diagnosed with F4. I had biopsies (worst experience of my life) and confirmed cirrhosis. My recent endoscopy was clear- doesn’t make sense! I went straight to low carb and have lost 24 pounds in the last 3 months. I seriously don’t have much more to lose. I won’t rescan until July.
That's a tough question to answer. I have had what I would say is a great many tests over the relatively few years I have been diagnosed. Three years ago I pushed to see a Gastro because of RUQ pain that persisted for years. The PA ran a liver function test in my bloodwork which indicated an F3. She referred me to a biopsy which confirmed F3 suspicious for cirrhosis. I was devastated and they referred me to a transplant clinic in Rochester. By the time I got to that appointment, I had lost 30+ pounds and was eating extremely healthy. I was relieved when the transplant doctor told me that according to my newest test results, that I was well compensated and already made significant progress reversing damage. She said if I took care of myself and ate right, it would be decades before she needed to see me.That set me on a path to research and clinical trials, luckily Buffalo has a researcher well known in liver research and treatment. The first trial I seemingly qualified for was a drug called Obeticholic Acid, which I was excited about because my research showed it had great promise. It was with mixed emotion that my biopsy results excluded me based on my newest grade of an F2. The facility was able to use those same biopsy reports to get me into the Falcon I study which was in phase 2 trials at the time. I had another biopsy half way through that but the results are still blinded. That study also afforded me the opportunity for 3 MRE/MRI's which showed minimal fibrosis (F1 or less) and multiple Fibroscans which showed High F2/low F3 numbers.
So although all of these tests seem to vary across the board, I kind of take a meta-analytic approach and view them as a whole which makes it look like I am making great strides to heal my liver. I wish I knew which one to rely on more than another. I contacted my research hepatologist and he agreed that the varices seemed odd. But I have also gained 20 lbs during the pandemic and haven't been as diligent in my diet. Something I have rectified the past month. I have an appointment with him to discuss it further next month and he is working on getting my biopsies unblinded from the study. I believe it's over anyway so they should be available soon.
I agree with most of the people on here about weight and diet being a significant factor in this disease. I am also learning that the advice of listening to your body is sound, although it takes patience to develop. I could feel the RUQ exacerbated over the pat 6-9 months, but didn't heed the warning. A mistake I don't intend to make again. Doctor's can tell me all they want that the liver doesn't feel pain, but those of us in this situation know that our liver tells us when it needs help, if you know what to listen for. Like I said in earlier posts, my liver enzymes have been elevated since I was in my twenties. So, I went back into my past physicals as far as I could and charted my liver enzymes against my weight and was a very enlightened. I feel that my NASH has a trigger, and that trigger is my BMI. I'll try to pst the picture in hopes it helps someone else. You can clearly see my weight as the grey shade and the AST and ALT (gold and blue) mirror the peaks and valleys.
First, everyone with cirrhosis doesn't have varices or portal hypertension. Having PH is different from regular high blood pressure, regular B/P is arterial hypertension. The portal vein delivers blood from the intestines to the liver, when this vein has a lot of pressure it can build-up and cause varices which can burst and bleed. Nadolol is a beta blocker and given to decrease the chance of the portal vein(varices) from bursting, therefore your doctor isn't giving this med for hypertension but for portal hypertension. Heart failure/too much iron in the blood can cause portal hypertension but cirrhosis is the no.1 cause of PH.
Uuuuggghhhh
Fatty liver turned to Nash and then liver fibrosis
Fibrotest-actitest panel
Latest data on Resmetirom is published, FDA approval is expected in March
