New stage 3 fibrosis diagnosis - British Liver Trust

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New stage 3 fibrosis diagnosis

Highliverenzymes profile image

Im just extremely depressed and not sure what to even think. I had some mild abdominal pain and elevated liver enzymes about 2 years ago so i started seeing a GI doctor. They did some of the typical tests such as a ultrasound, mrcp, hida scan and additional tests to rule out anything exotic. The doctor came back and said oh dont worry you just have some fatty liver just like the majority of the population its not big deal. I said ok.. and stopped worrying about it. Fast forward 2 years later and I'm once again in pain. I go back to the GI doctor and they do a fibroscan and it results 9.8 KPA. So now my doctor is like whoops you probably have NASH because my enzymes have been so elevated for years now and on top of that i have stage 3 fibrosis. My world has collapsed in on its self. Ive never been a drinker so its not alcohol related. Im 33 male, 6feet 1 inches and about 240 pounds. I knew i was overweight but not morbidly obese. Im guessing genetics must play a big role in this. Im just looking for positive stories of people that were in a similar situation. Has anyone worked out, ate healthy and lowered their Fibroscan score? My doctor said if there is inflammation it could be slightly higher on the test than it actually is. Has anyone been diagnosed with this stage and lived a long healthy life with changes to their diet and activity level ?

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Highliverenzymes
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11 Replies
AyrshireK profile image
AyrshireK

Sorry to hear about your results, 9.8 kPa does indeed fall into the F3 category although as you've been told this could also be a false high as you also have elevation of your liver inflammation markers. You also have a very high amount of fat in your liver with a CAP score of 299 dB/m.

If you can reduce the fat in your liver you could perhaps start to turn this around.

You need to loose the excess weight, perhaps eat better and try to exercise more. The British Liver Trust has an excellent page about Non Alcohol Related Fatty Liver Disease & NASH at :- britishlivertrust.org.uk/in...

Are you on any medications? Do you also have diabetes? These can be additional risk factors for NAFLD and NASH.

Take care of yourself, hopefully with some positive lifestyle changes you can turn this around.

Katie

Highliverenzymes profile image
Highliverenzymes in reply toAyrshireK

I have been working out and eating well since my diagnosis last month. Ive lost 7 pounds so far. Im taking milk thistle twice per day, 400 mg of vitamin E twice per day and im in contact with a local university regarding a clinical trial for a medication called aldafermin. Im hoping to be able to get into this trial because it looks promising.. Atleast mi gi doctor is on board with pushing for it and he has contacted the lead doctor doing the program. Im crossing my fingers.

AyrshireK profile image
AyrshireK in reply toHighliverenzymes

I personally would leave out the milk thistle, whilst there is anecdotal evidence for it being of assistance we have several forum members who have been strongly advised by their hepatologists that it can actually be harmful to the liver and can elevate your LFT's. It isn't scientifically tested and therefore isn't proven to be of help or its risk factor known fully. The BLT who host this forum advocate against the use of herbal and alternative therapies. britishlivertrust.org.uk/in...

Kristian profile image
Kristian in reply toHighliverenzymes

Looks like you're going down the right track. You'll find there's many stories around of people in similar situations like yourself that have recovered from the position you are in and led very long and healthy lives. The general rule of thumb seems to be that fibrosis can be reversible. So it's not all doom and gloom. Keep losing the weight and you'll start noticing the difference in yourself anyway. I would though forget the milk thistle thing. Don't believe the advertising blurb it gets. There's no hard evidence it does any good, in fact in a number of people with liver disease it has been known to actually do some harm. That may not be the case for everyone, but if it were me I wouldn't waste your money on it.

Good luck.

HLPV profile image
HLPV

Your story is the exact same as mine. GP told me no big deal Just fatty liver. three years later refers me to gastro due to elevated enzymes. Fibroscan was 7.2 cap 312 I believe. Signed up for a study drug, had a biopsy and diagnosed Nash stage 3 fibrosis. I freaked out just as you did . I was 41. Doctor came in when reading my biopsy and said “wow”.

Not a great bedside manner and didn’t help me feel any better at all.

I worked out every day, changed diet dropped about 16 pounds. One year later fibroscan was 6.4 cap 259. Another year goes by and another fibroscan was Done this time it off the charts 75, cap 172(I read the machine), I freaked out called the research clinic before my doc could even call me with the results. I explained what happened and asked if there were any studies I could get a biopsy done on and if they could do another fibroscan. They said the other one was probably bouncing off my rib. Sure enough on a new fibroscan the score 6.3 cap 212. Still said I qualified for study with biopsy given my history.. Had it done results came back no fibrosis, nas score 1. The previous one was a nas of 4 when I was stage three. I no longer quickies for the study. 👍. So yes you can heal. The anxiety of it never goes away sadly for me, I do enjoy my beer so that’s probably why. Had my follow up a few weeks back and normal enzymes. Gastro didn’t even want me to come in just called said keep it up. I know exactly what you are feeling and the fear. You can do it! Hang in there. Exercise did it for me and losing 16 pounds. My weight fluctuates but I never get near what I was and I think I put on a lot of muscle and lost a lot of visceral fat. So in reality I probably lost more than 16 pounds of fat. Keep up the excercise change your diet slow so you make lifestyle changes. Most importantly keep going. I have a fear it will come back some day. Fatty liver doesn’t just go away. You have to fight it and keep fighting it. You got this!

Highliverenzymes profile image
Highliverenzymes in reply toHLPV

You have no idea how happy this comment made me. Like literally made my whole week. This is the most uplifting thing I've heard from anyone I've talked to. I only hope i can do the same as you did i’m working out daily and eating much better and smaller amounts. My waist line is definitely shrinking. Im doing a biopsy this week and I'm terrified of the biopsy itself and what the results will be. Im contact with a university near me and depending on the results of this test i will most likely qualify. The medicine is called aldafermin. I guess about 28% of people showed clinical improvement with it. My main GI doctor said definitely do the trial if i can get in and my primary doctor said i could get cancer doing this trial or any trial. Im just a ball of nerves. I took a few weeks off work because i had a panic attack while at work just thinking about all of this 24/7.

HLPV profile image
HLPV in reply toHighliverenzymes

I had panic attacks too. Seem better now that I’m healthier but still anxiety. Energy fluctuations all of it. Try to focus on getting healthy and the body will take care of the rest. Do your part. Liver is an amazing organ but we have to love it sometimes. And we have love ourselves in the process. The rest will take care of itself. Good luck!

Highliverenzymes profile image
Highliverenzymes in reply toHLPV

Could you tell me if you took any supplements such as vitamin E, milk thistle, or any of the all in one liver pills? Just looking to give my liver a little help while im losing weight.

HLPV profile image
HLPV in reply toHighliverenzymes

There’s a ton of speculation if they work Or if they are healthy for your liver et.al and rightfully so. I think everyone’s liver is s bit different But I took Himalaya liver cleanse. I wasn’t consistent with it and I by no means are saying it worked or works or to rush out and buy a product. I couldn’t take it when I wax On the study. I think the study drug did the trick to be honest and can’t wait till they Approve meds (I’m in the US)

. My research doc was Stephen Harrison. Look him up he is international expert on fatty liver. I just lucked out getting him. Anyway I say that because I asked about products like that. He said yeah there has been response to some of those but no real research has been dumped into them so be careful. He wasn’t opposed to them but he was cautious. He actually had done some studies on milk thistle himself and vit e but says the verdict is still out.

It made me feel like I was doing something so I took it. Above all reduce your inflammation. Best way is diet and exercise. That one is proven. Harrison strongly believes in losing 10% of body fat got most will do wonders. He taught me soo much

chronicliverdisease.org/COE...

medgadget.com/2019/09/using...

I’d be very curious what your biopsy says. Read the last link I posted. He talks about the fibroscan not being a good tool to gauge staging. I agree totally, mine was 7.7 or something initially and then I was stg 3 in biopsy. Then I’m At 6.3 no fibrosis. It’s good for fat content and liver stiffness only which is about fibrosis but not a good indicator of staging. Hopefully your biopsy will show a lower stg. Please keep us updated. Sending you positive vibes and thoughts. Hang in there.

danik2016 profile image
danik2016

Do not worry, i lived with hep B all my childhood and few years ago they discovered i have also hep D that cause liver chirosis, i have a small child as well, he is 3 and I understand how hard can be but for me my husband is my support, we do everything toghether , when i need to rest i rest, take it slowly and do what you can, in principal me being fatigue is a major problem so sleeping is a must for those with liver condition in order to recover a bit of energy, i am like a stone and because of my personality i won t let this condition beat me but are days and days, specially when is raining outside and the sun don t shine i feel very week due to lack of vitamins D.

Try and eat if you can only boiling food, oven or grill, stay away from fried food, reduce the meet, pork, red, eat more fruits, vegies, take vitamins, exercise, drink lot of water and rest as much as you can.

In my case, if the food is not fresh or as soon as i taste it make me sick, i won t eat it as that is the sign my liver is not happy.

Are so many advices to give as i lived with liver condition all my life but in principal, listen to your body as hr is the one to tell you what to do

Redgreenblue profile image
Redgreenblue

I know this is 3 years later replying but i noticed this and thought the same when I have 10.1kpa result from fibroscan but my Hepatologist done a liver biopsy and it turned out to be NASH with fibrosis F1... did you have a liver biopsy to get the diagnosis of F3?

the biopsy itself is absolutely no problem and doesn't take long at all, i was worried but they talk you through everything they do before they do it. I hope all is well as this is 3 years later from when you posted

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