liver cirrhosis

[Samson4]

So I just found out my kpa is 14.8! So devastated. I have improved my fatty liver with diet, but the scarring keeps worsening. Has anyone seen this happen? I have been tested for many things, and docs do not know why either.

[Cats2018]

Hi - My first FibroScan in May of 2018 indicated kPa of 14. Like you, I was devastated. I was told that with losing weight and eating properly the CAP score will improve faster than the kPa . Inflammation and fat decrease faster than the scarring. I'm happy to report that my most recent FibroScan done 5 years later than the initial one, in June 2023 has a kPa of 6.2! There IS hope! Wish you the best!

[Samson4 in reply to Cats2018]

That is great! The problem with me is I have been getting a fibroscan every 6 months for a year in a half and each time the scarring has worsened. That is what is upsetting. I would not be as upset if it stayed the same. Makes no sense. Thanks

[MINTVCX in reply to Samson4]

I think you had a liver biopsy which pretty well diagnosed you. In that case fibroscan decreasing or increasing 3-4 kpa does not make a difference regarding your treatment and diagnosis. I would not worry about your fibroscan results if I were you.

[Samson4 in reply to MINTVCX]

Please explain why you think this is true true? as I have read 14 kpa and up is cirrhosis. Before I was 11kpa. I hope you're right. I also would like your thoughts on why it would go up every 6 months and fatty liver gets better. Thanks alot.

[MINTVCX in reply to Samson4]

If you had your liver biopsy which shows severe fibrosis F3/F4 than fibroscan as indirect test is not so helpful. It is not so accurate to say that 3 kpa difference means that your fibrosis getting worse. Is your NALFD only reason of your liver issue? Does your doctor suspect any other disease?

[Samson4 in reply to MINTVCX]

I have granulomas on my liver and they don't know if that is the cause or the fatty liver. I was hoping losing weight would help, but so far it has helped my fatty liver but not scarring. I have had many tests and they cannot find anything. I do have crohns disease. So are you saying that I should not be concerned even though for the past 1 1/2 years I have had a fibroscan every 6 months and everytime my kpa has risen. It was 11 then 12.2 then 12.8 and now 14.8.

[MINTVCX in reply to Samson4]

Well the best is check with doctor who orders fibroscan.

[Herman7275 in reply to Samson4]

No , I would say you need to be concerned and check out why? Are you on a low carb diet? That is a must also, I am only allowed 40 carbohydrates a day. But I have been on this diet 3yrs. I have my annual fibroscan last of the month and will pass along how this year has done for me. I don't have crohn's disease & I not heard of granulomas, so can't help you there.

[Herman7275 in reply to Samson4]

I agree with cats2018 my kpa going down last Sept 8.9 so got 3 wks to see how much I've dropped this yr and lessen. On scarring, sometimes we just have to be somewhat more patient!! Sometimes we not why it does its thing.Wish You the best!

[Samson4 in reply to Herman7275]

My question to you would be has your scarring ever worsened or only gotten better. Mine keeps worsening. and fatty liver improves.

[Realy in reply to Cats2018]

That’s a great accomplishment! Are you now f-0 f-1 ? Your fibrosis is minimal now? Also cap score for fat? Again great work. Also was your underlying cause metabolic?

[Cats2018 in reply to Realy]

Hi Realy,

After first FibroScan the doctor at the liver clinic told me from herexperience I had NASH & that the fibrosis was either F2 or F3 & I should have a liver biopsy right away. I had the biopsy and it confirmed NASH F3. I have been in a couple clinical trials at the clinic since then not knowing if I was on placebo or the drug. The doctoonly does my FibroScan annually as she said thy do not change rapidly enough to do them more often. She said that the Fibrosis is slowest to improve. My annual FibroScan would improve the CAP score quicker & more than the kPa. But the kPa did begin to improve. I wasn’t told specific cause. Doctor said that about 25% of people with FLD end up having the more aggressive NASH but it’s unknown why it happens to some and not others. I do have excess weight & have fluctuated on A1c. Was considered pre diabetic for a long time, now considered diabetic. Have metabolic syndrome. Between Nov 2021 & November 2022 I was in a clinical trial for a 2nd year that had me definitely on the trial drug but I did eventually see improvement in CAP & kPa prior to being on the trial drug. I had reduced mykPa to 7.9 before I went on the trial drug. My last FibroScan that I gave results on was taken 7 months after I was taken off the trial drug. Doctor was amazed that it was still o close to the end of trial results. Dilemma is that we cannot believe that my kPa has reduced from 14 to 6.2 & remained there. The 3 biopsies I’ve had indicate NASH F3 each time. She would like another biopsy to see if it’s actually improved that much but I turned 79 in July & she prefers to not put peopl my age through a biopsy. I told her I’m willing as I’m that curious too. So it hasn’t been decided.

[Roxanne9 in reply to Cats2018]

Hi, Do you attribute the reduction of your kPA to 7.9 from 14 to a clinical trial? Or was this just diet and exercise? My kPA is also above 14. I’m 14.6 and I’ve only been following this new lifestyle for 4 1/2 months. I didn’t receive a cap score now I’m thinking it was probably higher than 400. They are not offering clinical trials in my area currently but I have signed up for future ones.

[Cats2018 in reply to Roxanne9]

I attribute it mostly to the diet change. Initially I was still able to hike (in winter as it’s too hot here in AZ during summer) or take walks. But I’m having a lot of joint pain from arthritis now. I think the diet is most crucial.

[Cats2018 in reply to Realy]

PS - I forgot to answer about CAP score - Yes, CAP score was 268 in August 2023. It had been 400 on the 2018 FibroScans. Doctor said 400 is as high as the machine registers, and that’s where I was.

[Samson4 in reply to Cats2018]

Did you have any fibroscans in between 5 years that were not so good? My concern that mine is worsening. If it stayed the same I would not be as concerned. Thanks

[Cats2018 in reply to Samson4]

Hi Samson4

I generally have had a FibroScan about once a year since diagnosis in May 2018. CAP score started to improve with change of diet and some weight loss, but kPa took a LONG time to improve. And at times when I was more lax in eating right and gained a little weight back the scores would get worse again. But I never had a kPa again that was 14. I had 7.4 in 2019, back up to 8.7 in 2020, 11.9 in 2021 which made me get back on track with diet. I used to hike in the desert and take walks for exercise but I’ve recently had many problems physically that have meant not being able to get enough exercise. So, my FibroScans did fluctuate. And I am willing to have a 4th biopsy if the doctor at the liver clinic decides I should even at age 79. She says I’m a ‘young’ 79 so she’s considering it. 😂 I’d like to think the NASHF3 has improved as much as the last FibroScan indicates, and I’d love to have a biopsy confirm that - but on the other hand a 4th liver biopsy indicating F3 would really be a downer. Doctor said although FibroScan is less accurate than biopsy, it’s not usually that far off.

[Realy in reply to Cats2018]

Have you had ultrasounds as well? And what was the description of findings in those reports?

[Cats2018 in reply to Realy]

Yes, I’ve had ultrasounds, MRE,etc but I was in clinical trials so was not allowed to see those results. The only results I get to have access to are the FibroScans, blood tests, and the liver biopsies. So far I have not had to use my insurance on NASH related tests as I’ve been in clinical trials for the most part. But because of that, I don’t always get to see all the test results.

[Samson4 in reply to Cats2018]

Thank you so much!!! This does give me hope. My only other question would be did you ever have a kpa score increase and your fatty liver decrease or fatty liver stay the same? I would not be as concerned if they both went up. Thanks

[Samson4 in reply to Cats2018]

I might also ask did your biopsy say yours was from fatty liver? I have granulomas on my liver and biopsy showed mild to moderate fatty liver. curious what your cap scores were. Thanks

[Cats2018 in reply to Samson4]

My original CAP score was 400 - as high as the FibroScan measures. My last one in August 2023 is 268. The documents I received following biopsy are a little difficult to compare as the reports were not the same format with each biopsy. The original biopsy in 2018 just indicates: NAS score 5, Steatosis grade 1, Ballooning grade 2 Lobular inflammation grade 2. Fibrosis stage 3 Biopsy 2 was in adifferent format so I was unable to compare results. Biopsy 3 in Feb 2020 had improved : NASscore 2, Steatosis grade 1, Ballooning grade 1, Lobular inflammation zero, Fibrosis stage 3 (same as original)

[Samson4 in reply to Cats2018]

you sent me your different kpa scores. were your cap scores always better ? mine is confusing because cap is better and kpa is not.

[Cats2018]

My liver doctor said that CAP scores can improve much faster than the kPa scores as I was concerned about that too. My CAP scores improved but have fluctuated depending on how well I’m following eating healthier. And also not being able to get as much exercise in because of other health issues at times makes a difference. My original CAP score at 400 has never been that high after the first 2 FibroScans when I was originally diagnosed. CAP 317 in 2019, 278 in 2020, 233 in 2021, and then up a little in 2023 to 268 after I ended my last clinical trial