interesting

[Realy]

I just saw a round table discussion by echosens fibroscan, with 2 Hepatilogists discussing fibroscan testing. In one of there test case studies they said that if you have elevated Ast and Alt and also serum Ferattin elevated levels at time of test this could increase you readings. They recommended those limits to come down to range and retest. I wonder how many people are getting higher readings due to this.

[nash2 Partner]

Thanks for the note. It is good to remind patients that fibroscan measures stiffness which can be influenced by things like inflammation so in clinic a doc should be taking those things into consideration. From a patient perspective a higher value because of inflammation is still a good indicator of NASH activity so valuable information as you can't stop the progression without getting inflammation under control.

[Realy in reply to nash2]

I find it interesting as I’m often wonder how drs come up with levels or results. I get they take the cause and cap score and KPA score . But are they looking at all the recent labs and other testing or just saying fibroscan says this cap and KPA and you have NAFLD so your s ore is this without finding out if certain blood levels are elevated. I guess what I’m looking for is that a certain levels of blood must be ran in concert with scan so you get results. I know that my blood work if it was used wasn’t recent and ferritin wasn’t ran. But a month after fibroscan I had elevated ferattin. The more I read about fibroscan I wonder how accurate they really are.

[nash2 Partner in reply to Realy]

There is no perfect test other than autopsy so we are always working in the grey area. A combination of tests is the best we have for diagnosis right now and just as every patient is different every doctor is different so we try to answer two questions, is there active disease and if so what do we do about it based on our imperfect information.

[Realy in reply to nash2]

yes correct so many different tests and opinions from doctor. I guess they take the best information they have and put it all together. Not necessarily just what your cap or KPA say. They look at the big picture . And use this with further testing and all bloods to see how your doing. I had fibroscan and than 6 months later the blood test for fibrosis and had a big difference but I did what I was told loose weight and get sugar under control. Have repeat fibroscan coming up and I’m much better than I was when I did that blood test so I’m hoping fibrosacn is even better .

[Realy in reply to nash2]

So I guess if you get the inflammation down the liver stifness will come down as well and KPA should drop some ?

[lusitania84]

I think fibroscan is a good test but I would never take it to the bank. It takes the reading from a small section of the liver. If it's serious. I would always request an MRE scan amongst other tests...

[goldencody]

I had elevated liver enzymes and ferretin and had a fibroscan which showed SO (no fat) but 8.9 kpa (fibrosis). I followed up with a biospy which indicated I had minimal fat in my liver yet they staged me at F3 not F2. I have "lean"nash and currently trying to get into the clinical trial for semiglutide. I asked the clinical trial doctor if inflammation causes fibrosis or does fibrosis cause inflammation and her answer is it can be both ways. I have come to the conclusion that the medical community still does not understand this disease.

[Realy in reply to goldencody]

the semiglutide is ozempic? Is that also used to reduce fibrosis?

[goldencody in reply to Realy]

they are running a clinical trial to see if it reduces fibrosis. I believe it has been found to reduce fat but not sure about fibrosis.

[Realy in reply to goldencody]

yes it’s used for type 2 diabetics yo reduce A1-c and helps with weight loss.

[goldencody in reply to Realy]

I am not diabetic and I am not overweight which is a concern with the clinical trial because if I get the drug I will lose weight which isn't good for me

[Realy in reply to goldencody]

have you had any repeat fibroscans?

[goldencody in reply to Realy]

Yes my latest fibroscan showed 8.0

[goldencody in reply to goldencody]

my cap score was 207

[Realy in reply to goldencody]

ok so you had one at 8.9 and than now 8.0. Heading downward than.

[goldencody in reply to Realy]

My liver doctor feels the reduction is due to the vitamin e which she feels has reduced inflammation. I have stepped up my exercise and I am not drinking socially anymore.

[Realy in reply to goldencody]

what was The time frame between the 2 fibroscans. My Dr said I can only do it yearly

[goldencody in reply to Realy]

I had the first one done in October but the biopsy was done in March, 2023. The last fibroscan was in May. I wasn't actually fully diagnosed until the biopsy. My doctor states my issue is confusing because I don't really show fat in the liver yet I had fibrosis and inflammation which we couldn't identify any other cause. I have come to the conclusion it is genetic.

[Realy in reply to goldencody]

yeah it seems many things can cause this, for me it was metabolic syndrome, poor diet .

[goldencody in reply to Realy]

what exactly is metabolic syndrome?

[Realy in reply to goldencody]

obesity,type 2 diabetic,High boood pressure, high Lipids cholesterol

[goldencody in reply to Realy]

I don't fit that profile. I weigh 130 pounds not diabetic, have low blood pressure and my cholesteral is normal

[Realy in reply to goldencody]

it seems many diffrent causes.

[goldencody in reply to Realy]

In my case I believe it is genetics. My father had liver cancer but we are not sure what caused it. He liked alcohol but that may have just made his condition worse. He may have had hemochromatosis . My cousin from my fathers side of the family has hemochromatosis but my brother doesn't and he had high ferretin levels and was bled. My uncle also had issues with his liver and had to be bled.

[Realy in reply to goldencody]

also are they adding any other drug with the ozempic or is it by itself .

[goldencody in reply to Realy]

It is by itself. The study is named essence and it is a 5 year study. They started a trial in the spring with stage 2 and 3 nash patients already but this study is only for stage 3 nash whereas 66% of the participants will receive the actual drug

[lusitania84 in reply to goldencody]

This is excellent news. If it's effective then we don't really even have to worry about approval. I mean that would be great but I'm sure the right doc(one who cares) would be willing to prescribe it for off label use especially considering it could save lives.

[goldencody in reply to lusitania84]

It has to be approved for nash or the person needs to be diabetic

[lusitania84 in reply to goldencody]

Technically yes...

[goldencody in reply to lusitania84]

If that was the case don't you think people with nash would all be on these drugs already,

[lusitania84 in reply to goldencody]

Well... one would thinkso. All I know is that back during covid I know several people who were prescribed drugs off label by medical doctors to treat covid.

[goldencody in reply to lusitania84]

What do you mean drugs off label? Do you mean they were prescribed drugs for conditions they didn't have?

[lusitania84 in reply to goldencody]

No sir. They were prescribed drugs that had never been approved for the treatment of covid, they were fda approved for other conditions but not covid. Thats off label use.

[goldencody in reply to lusitania84]

understood

[Golendoodle in reply to goldencody]

8.9 I thought was stage 2 not three? Did the Dr tell you that it could be reversed?

[Golendoodle in reply to goldencody]

Why did they stage you at F3 and not 2 because when I look at the charts they all say that’s a 3. Did they tell you it was reversible? My numbers are close to yours and I see the herpetologist tomorrow .