For people with fibrosis

[Lara86]

Since that's my diagnosis, I was just wondering what other peoples' stories are? How you found out, if you had, or have symptoms now? Cause? Stage? I'm asking in part because I never heard of it until I was diagnosed. When I google it I am often lead to cirrhosis. So I figured maybe while I'm waiting for my appointment with the liver specialist, I could hear other peoples' stories.

[Marydel63]

Hi I have known that I have had a fatty liver since I was about 19 diagnosed with fibrosis/cirrhosis at54. I was told fibrosis is same as cirrhosis , basically fibrous tissue . I had liver biopsy said stage 3-4 fibrosis cirrhosis . My blood work fluctuates slightly above normal but nothing extraordinarily elevated

So never drank, just trying loose weight and exercises

[Lara86 in reply to Marydel63]

When you were 19? Were you having symptoms? If fatty liver had been explained to me 4 years ago I would have stopped drinking then, and stopped taking pain killers and Tylenol, and drastically changed my diet. I really had no idea how serious this could be. And if fibrosis is essentially cirrhosis why sugar coat it?

I feel like I'm getting worse instead of better since my diagnosis. I didn't ever really feel anything before and now I feel a twingey discomfort under my right rib everytime I eat. My right middle back is always achey. My stool has improved, it is no longer pale yellow. I think that's from the large amount of spinach, bitter greens and beets I now eat.

I've also become impatient and moody. My personality has changed. And I don't care. I don't know if this related. I have severe fatigue and zero support from family. They all depend on me to care for them. I have no one to take me to the doctor. I know fatigue is, but are short tempered and moody also symptoms?

[Kristian]

At the fibrosis stage, the only real noticeable symptom for me was the tiredness. Being a bit tetchy came later. However, if you are fatigued then it is no wonder you are a little, or sometimes a lot, more impatient and moody. At the fibrosis stage this is unlikely to be related to anything more sinister. I appreciate that changes in mental state can affect people more when their condition is much more advanced. However, at the fibrosis stage it is probably more related to the fatigue. Probably a good question to ask of your specialist when you next see them.

Diagnosis wise, I discovered incidentally. I was being reviewed by the renal team at my local hospital for some time. As a result it had become clear that my liver enzymes were constantly raised and had an unexplained high cholesterol reading that didn't match my diet and exercise regime. I was therefore referred to the gastroenterologists for further investigation. That eventually led to the diagnosis of fibrosis after a biopsy. Although nowadays I suspect a fibroscan would have been done instead.

As I said early, the only actual symptom I had was the tiredness.

[Lara86 in reply to Kristian]

My first symptom was pale stool. This went on for 4 years. And a CT scan for something else showed a fatty liver but no one ever said it could get this bad. I went to 2 different gastros. One did an upper endo and gave me antibiotics for travelers diarreah and said I had malabsorption. That's a symptom. At one point last year my general practice Dr told me I'm very healthy. Even though my liver enzymes were intermittenly spiking over 4 years.

I hope you're doing ok but your statement seems to indicate you've progressed? So far my hepatic and portal veins are patent which is very good. I'm hoping it's not too late for me and for you.

[Kristian in reply to Lara86]

I have indeed progressed. For me my initial fibrosis diagnosis was made back in 2010. Cirrhosis was diagnosed in 2013 and I had a liver transplant last year. So in terms of my old liver it is well too late. I do though have a nice shiny new one which is doing very well and is nice and healthy.

Depending on what is causing your fatty liver, it may be possible to stop, slow down or even reverse any progression. Especially if you are still at the fibrosis stage. For me that wasn't possible as there was nothing to stop the progression of my disease (PSC). It was therefore just a matter if time before the inevitable occurred. That isn't the case for everyone though.

[Lara86 in reply to Kristian]

Mine is NAFLD. I don't really know what to do. I'm on diet pills and Metformin for prediabetes. I have metabolic syndrome, it runs in my family. I sit behind a desk 40 hours s week, there's no way to cure that. I eating butter green veggies and meat and no sugar and white carbs. No alcohol or pain killers. I'll do anything the Dr says. I'll stop using lotion, perfume, even makeup if that's what it takes. But I really don't know what to do.

[Kristian in reply to Lara86]

I must admit its not easy sometimes. I drive a desk too, lol. I have though started using the stairs instead of the lift and that's certainly got me fitter if nothing else. I think the main thing really then is just keep doing as advised and hope that does the trick. It should at least help keep any progress in check. There is a BLT leaflet on NAFLD which may give better advice than I could, and i'm sure that there are plenty of others on here in a similar position to yourself who will let you have their experience too.

[Lara86]

Haha I've only taken the elevator twice in the 14 years I've been at this job. I park my car in in the futherest spot no matter what the weather. I swear I really do try lol. I guess I'm just saying I know this is a major contributing factor. If took a different job I could lose my health insurance, that's how it works in USA . We did have a sort of national plan but the new administration changed it. And now I have a pre-existing condition.

I'm glad you're having success with your new liver. I hope it stays that way for you. Thank you so much for the conversation, I really have no one to talk to!

[Hidden]

There is a difference between fibrosis and cirrhosis. Fibrosis is the initial scarring of the liver and is usually graded on a scale of 1-4 depending on how much scarring there is. This can be reversed if whatever is causing the scarring is removed i.e alcohol, virus etc. Once the amount of scarring covers a certain amount of the liver and is permanent, it becomes cirrhosis and this is not staged. Cirrhosis falls into two categories:- compensated, the liver still performs its functions and decompensated, the liver is now struggling to perform its many (over 500) functions. You can go from being decompensated back to compensated with the right treatment.

My consultant has said fibrosis/ cirrhosis "it's semantics", in other words he doesn't distinguish between them too much. However, I will say that while it was previously thought that cirrhosis could not be reversed, there is evidence that it is possible to reverse cirrhosis, although not necessarily for every cause of liver damage.

As for evidence, such as symptoms, I developed an auto-immune liver disease and was jaundiced before diagnosis. I worked part-time and went to the gym several times a week. It was only after being fatigued longer than usual during the school hols (was a lecturer at the time) that I went to the doctor. Also had what I thought was a panic attack at the gym and knew something was wrong, never imagining it would be something this serious.

Hope this helps and good luck getting the answers you are after

[Lara86 in reply to Hidden]

Thanks so much, it's so murky. I don't know how to treat the cause because it's NAFLD due to metabolic syndrome. I've changed my diet, but I really didn't eat to bad to begin with, pasta was my biggest downfall. I enjoy drinks with friends but that's very easy to give up. And I don't even use any pain meds etc. I just don't know how to really resolve my metabolic issues. I'm trying to take walks around my office every hour when possible but the nature of my work doesn't allow it often. It's so hard when I get home because I'm so tired. I'm hoping maybe the doctor can put me out on a medical leave so I can work on exercise. Maybe if I can have a few months off I can resolve some of it and have more energy when I get back. Right now I'm so drained at the end of the day.

[Febeli57 in reply to Lara86]

You are the exact same age as me nash and fibrosis somewhere around level 0-1 and one spot where it was 2-3 did u have a fibroscan ?the thinks u said about u wish u wouldve known how serious it is really strike home I know that feeling at least u get a treatment for pre diabetes here in Germany there is nothing they will give you keep me updated as on curious as everybody always say in the fibrosis stage it's still curable but I dont see know people to confirm it ?! Or is it maybe a myth ? Questions and questions and no answers sending lots of good wishes your way Fabian

[Hidden]

I know it seems contrary, but I find exercise does help with the fatigue side of things and the consultants here in the UK, actually recommend it. I'm afraid I have no knowledge of metabolic issues. However, I do find that a 30 minute nap at around 4ish does actually make me feel better in terms of energy levels, although this could be difficult for you whilst you are work!!