Fibroscan inaccurate

[Kulwinder59]

When fibroscan score is highl like 9kpa F3 then why doctors say us go to ur home nothing to worry.. stop alcohol and do little exercise

[nash2 Partner]

One of the problems we face is that doctors don't try to deal with early stage liver disease and it is particularly frustrating to us for them not to provide early warning and information to patients. It is our formal position that the profession needs to change its standards of care. We share your frustration.

[confused71 in reply to nash2]

Totally agree prevention is so important

[LeiL]

I have the same problem. Told I can eat a regular diet despite fasting glucose at 99 and other indicators of metabolic syndrome. Won’t prescribe any medication. Doesn’t think I need to be in the Liver Clinic. Doesn’t answer “My Chart” emails. This is from a Hepatologist at a John Hopkins which is world reknown. The Hepatologist at Walter Reed Medical Center stated that she doesn’t counsel patients before a 7.5 Kpa—-“we can only treat symptoms, there is no cure.” Besides looking at my weight they never performed any other tests to determine the source of my liver problems. There motto is “Live Until You Die.” I was told they only give Fibroscan once in a five year period. I’m now below normal weight and still nothing.

This has severely impacted my relationship with spouse because all he hears is that “your liver is currently fine.”

[Alterity]

I have been dealing with this for 19 years, I have gone to the Dr. every 6 months for 19years, but 40 years ago they wrote on the report I had fatty liver, but didn't tell me. I just read the report about 10 years ago when I went through medical records. They are learning more and more about liver everyday. Now finding 1 out of 4 have a liver disease. They are still learning so much. 20 years ago I was told, there is no cure. Try to lose weight it's the only cure, we will continue to watch your progress which they did. I had MRI's almost every 6 months, never a fiber scan until 2 years ago when they said I was going into Stage 4 Fibrosis. Now I am on the research pill, I went from a 17.8 down to a 11.4 so you are still in a good range where you are. Until this pill that I'm taking is released by the FDA there is no cure, but looking at the last scan I'd say it's working. I've been on it for 9 months. They hope to release the pill within the next 9 months. So do as they say, their hands are tied, but they are learning and research all the time and hopefully within the next 10 years they will start looking into this in earlier stages so you don't get as far into it as I have. Good Luck.

[Kulwinder59 in reply to Alterity]

May I know about research pill

[Alterity]

I really know nothing. My Dr. asked me if I would be interested in being with the research program since I had done so well all these years and I jumped at it. I said hopefully I will save my children, grandchildren and others along the way and if it made me worst, they had all my studies and work up that I would be prime for a new liver if need be. It is a blind study so I know nothing other than I take a little white will once a day, have been for 9 months. I was getting blood work and had to see the dr, once a month and now I'm at every 3 months. I have lost 45 pounds on my own, plus taking the pill, I believe I'm much better. Very little pain in my side anymore. So there is hope that this pill will be on the market and FDA Approved sometime next year. This is for patients with Cirrohis. NASH. That's all I know. I was just willing to help and put something in my body that know one really knows if it is working or not. Kind of like the test drug the President took for COVID. I just decided to risk my life for others. It's all unknown.

[TemoDubai]

We all support you and believe that, what are you doing is a Great job and One day a lot of people will be save and far away from Liver Cirrhosis because of you.