Acknowledgement: Patient Worthy is proud to share this article from our friends at the Fatty Liver Foundation.
As a patient, what I really want to understand is how damaged is my liver really. What does the stiffness measurement actually tell me? Can I learn how much actual function I’ve lost and get a sense of what my risks are for the future?
Apologies to those who have heard this before, but I was diagnosed as F4 with a FibroScan stiffness score of 21.5. Over time I was able to reduce that to nominally an F3 with a score of 9.6, but what does that really mean?
That was all fine but what I want to know is what is my functional capacity? How badly damaged is my liver? What is the probability that I will have complications? I appreciate the stiffness score, but what does it actually mean for my life?
With liver disease, one of the deadliest complications is portal hypertension. What is my risk for varices? Is there a test that can help me understand my situation better?
A test that we have been watching being developed is from HepQuant and is called Duo. It has recently become available, (still very limited), but I had an opportunity to have the test and thought it might be of interest to the community.
Duo is a blood test which measures the liver’s ability to actually process things from the gut. A healthy liver processes chemicals at a predictable rate. One of the normal chemicals in our body is cholate. It is a bile acid which aids in digestion and circulates and is processed by the liver. The Duo test is to drink a known amount of cholate then to have two blood draws, one at 20 minutes and another at 60 minutes, and to measure how that cholate is processed. This give a direct measure of the your liver’s capacity compared to a normal person. These were my results:
HepQuant measures several things with the test. They created a Disease Severity Index score with a scale of 0 to 50 which compares test values to normals. You can see that my score of 13.18 is higher than normal at 11.6 as a measure of my damage. Another important measure is Hepatic Reserve, which is indexed to healthy lean individuals (0-100%), representing residual functional capacity. Values below 83.4% correlate with higher complication risks. In my case a score of 95.2% gives a measure of how much function I have been able to preserve. Another measure that is of great importance to me as a patient is the Shunt %. The shunting of blood around the liver due to pressure is what ultimately results in varices. The SHUNT% of 24.6% is slightly elevated, implying minimal portal-systemic shunting. As a patient, this is very comforting to me. I found the test to be extremely valuable as it gave me a clear understanding of the health of my liver. In my case I have so far been able to avoid the worst kinds of problems and it is good to know that. Regardless of where a person sits on this spectrum, these are valuable measures to understand.
It is, of course, not easy to get this test. It is pretty new and not a lot of docs are using it. You would need to work with your hepatologist to see if they would be willing to explore ordering it. It is also not covered by insurance yet although the company is working on that. In discussions with your doc, one of the important uses for the test is the determine whether EGD’s are necessary. The test does a good job of determining a cutoff for the development of varices and blood tests are easier than the EGD. It will also provide good feedback about whether what you are doing is working if repeated over time.
More broadly, we have a lot of patient facing material on our websites and we invite you to get acquainted with foundation outreach.
There is lots of info on our website if you want to pursue it!
The foundation has also expanded our outreach to support efforts to find a better way. We have two impact projects, The Wellness League, and Sober Livers which reach beyond the concerns of drug development and focus on the needs of people who seek to live healthier lives and avoid liver disease.
Sober Livers, support for people struggling with alcohol use disorder
The Wellness League Local Search Tool
Many people don’t know what services are available to them in their local area. Finding those local resources in their local zip code is often a challenge. We are developing a tool to help with that. Just click on the link: enter your local zip-code in the form: to explore the services available to you in your area.
We can’t press the system to do better if we can’t show them data that change is needed, so please join us by clicking the link and take the survey. It will be closing very soon for this year.
THE 2025 STATE OF STEATOTIC CARE SURVEY
If you would like to read the report from last year, here is a link to that one.
The State of Care 2024 Lay Report
Or you might find the poster presented at the 2024 conference for the American Association for Study of Liver Disease interesting:
Poster Presentation at AASLD Conference
-Wayne Eskridge
https://www.fattyliverfoundation.org/
If you would like to support our work text LIVER to 44321 or visit our website and donate.
