How Long from Compensated to Decompensated?

[TheTimer]

My wife (age 72) was F1 in November 2019. She is now F4 in March 2024 (4.5 years). This is confirmed with 2 separate Fibro Scan tests). She does not drink, is not obese, is not diabetic, etc. We have no idea what is happening. She does have serious RA (January 2022), and Hashimoto's (November 2016). Both are autoimmune diseases. At this point she is totally compensated. Health care providers are taking this very casually, one even saying, "come back in a year and we will look again." I admit to being a little freaked out since at this rate she could be decompensated in a year. So my question to the group is how long from F4 Compensated to Decompensation? I have not been able to find even a guess on this topic but if her rate of progression continues like the last 4 years I fear we could be in trouble. Thanks for any comments!

[BritishLiverTrust3 Administrator British Liver Trust]

Dear TheTimer,

This is a question that your own health care professional is best placed to answer, as only they have access to your medical records.

We suggest talking this through with your own doctor or health care professional in the first instance.

Best wishes

British Liver Trust

[TheTimer in reply to BritishLiverTrust3]

Hello BritishLiverTrust3, Thanks for your reply! Yes, we have tried to get some answers from a Gastroenterologist here in Utah and his PA. Neither have give much for us to go on. We are getting the feeling that their interest is minimal since there are no symptoms yet. That makes sense considering the many people struggling with symptoms. My wife's situation likely seems low priority. For me getting answers sooner rather than later is priority since the studies I've read indicate that treatment early on before decompensation might have dramatic positive effects. Kind regards, Dave PS British Liver Trust is really the only place I've found with forthright open discussion from people experiencing it right now. Very refreshing!

[Marie2272 in reply to TheTimer]

Hi from Arizona. Have you tried to get an appointment with a liver specialist? I would be alarmed as well, and would want to get to the bottom of why this is happening to her. Hopefully there is a Liver Clinic in your area. I think they would take the change more seriously, at least try to get to the bottom of why this is happening so you have a course of action. Best wishes.

[Marie2272 in reply to Marie2272]

PS I understand you are having her seen by a gastroenterologist, but I would drill into the speciality a bit more?

[MINTVCX]

Did your wife's doctors find the cause of her liver damage? I think they should have ruled out possible diseases like HCV, HBV, AIH, PSC, Wilson, hemochromatosis. Sometimes only liver biopsy can show more (but it is risky and only doctors can say if it is really needed).

[TheTimer in reply to MINTVCX]

Hello MINTVCX, thank you for your reply. Our Gastro PA has ruled out HCV, HBV, and hemochromatosis. Not sure about PSC or Wilsons. I have spent my time reading studies on AIH thinking that because of her other autoimmune issues AIH might be an extension. My big worry is time. We have waited three months for our next doctor appointment. If the progression continues at same rate it has for the past 4 years she might be showing symptoms before we can see the next doctor. Hence my Q about how much time from beginning of cirrhosis to symptoms on average considering her past fast progression. We need a medical pro to jump in and run all the tests. Kind regards, Dave

[juneblue]

Have blood tests remained with in normal levels?

[Chipschill]

Not an answer to your question. Also check genetics Alpha One Antitrypsin Deficiency.