Living with Fatty Liver and NASH
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When you were first diagnosed with fatty liver, what was your doctor's initial advice?

My sister died of cirrhosis. For years she joked that she had a fatty liver. When we asked her what that meant she said the doctor just said she was fat and so was her liver. It was less funny when she became ill. What advice did you get?

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I was told that it was nothing serious and just to monitor it.

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So many people have been told that to their detriment. Nothing serious until it is. The thing that frustrates me the most is that a lot of diseases are made worse by liver problems but the liver has no symptoms. You die of heart disease brought on by your liver but the death is called a heart problem with no concern about the comorbidity that helped kill you so the statistics are not valid.

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My blood work always showed my liver was fine when it wasn't. Doctors should not say it is not serious. At some point i had fatty liver and never knew it was going into cirrhosis. When you are told you have fatty liver that is the time to take it seriously and start changing your lifestyle then you have time to keep it from going into cirrhosis. When I found out I had cirrhosis I knew I had to make changes. I lost weight watched my diabetes and cholesterol better because I didn't know how serious it was until I read everything I could find out about it. So far my progression of the disease has slowed down a lot. It will never go away but taking steps will help to live a longer life. My goal is to do what I can so I don't have to have a liver transplant. I have read on this website about people who have gone through a lot of misery and I will do what I can to make my life easier. Take it very seriously and don't let any doctor tell you it is not serious or don't worry about a fatty liver. If nothing is done it can destroy every organ in your body.

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That is so true Mel, we hear so often that someone was told they had a fatty liver but no big deal, until it was.

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I had no reason to think that something was wrong until I went to hospital with food poisoning and just as a precaution they wanted to do a cat scan of my liver which I almost said no because i thought there is no reason because my liver was fine which I thought it was I am so glad I went ahead and had I it done. I have varices veins in my stomach and esophagus. I live in the US and have a very good liver specialist who does testing on regular basis and keeps a good eye on anything going on. I hope when people read this they take it seriously. If a doctor says no big deal they should find a new doctor I it is a very big deal and I hope this helps people realize it. I like this website and it is very helpful. I have my yearly endoscopy next week and hope nothing has changed but at least I will know. I have had cirrhosis for about 8 years now. God bless and keep me in your prayers.

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I pursued information from the first physical results which were elevated enzymes. We redid after 6 weeks of me trying poorly to diet. Then moved to next step.

I was told no fried food, no alcohol...not even in cough syrup, food products, desserts, supplements, no tylenol and NO added iron in anything, no food with nitrates like hot dogs, bacon,etc I was told to eat low fat, lean meats-beef, chicken, fish, and to avoid fatty meats like pork, lamb and reduce serving size to 4-6 oz of meat.

Took me awhile to start figuring out all the places iron is added...like anything that says enriched. Well that cut out a lot of food! But once I started following that I felt better. Cut out sugar and ate more clean resulting in 18lb weight loss. After 2 years my test results showed liver function in normal range. But as we know, this is a rest of your life deal so these changes are now my lifestyle. Even though I can't eat a lot of things at parties or family gatherings I make sure to eat some at home before hand so I am not hungray and don't feel deprived.

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Hi Bbohnie

You got a lot more information than most. Kudos to your docs. Your point that it is the rest of your life is something so many fail to really get that.

Wayne

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I was told there is no medication for fatty liver, was told to lose weight. Nothing else. But on Internet said stop eating sugar, alcohol & sodas. Change your diet to more fruits & veggies.

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Hi Similau

That is sadly how it is for so many. Most people have to find their own way to information that is of value. Just being told to lose weight usually fails

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Not so easy for those of us with allergies and intplerances to fruits and some veggies :( i have to eat SOMETHING and sorry but the food thats bad for my liver is better than something that instantly makes me sick

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No advice

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Allergies really complicate things. Very difficult balancing act. One question, how do you react to olive oil? Vitamins are one thing but energy is a different issue.

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I had no insurance for at least 15 years so consequently had no doctor visits. Due to this I didn’t know I had fatty liver until it had already progressed to NASH/cirrhosis. I think it scared my PC physician or he just didn’t know what to do and I feel like he really dropped the ball.

After I ended up in hospital on dialysis due to days of uncontrollable nausea and vomiting he seemed to take notice and even called.

As far as the best and most practical advice goes - I pretty much was on my own for some time. Groups with caring individuals like this one and the Inspire liver forums have honestly been more help than I ever thought possible.

I eventually had all the tests, underwent the procedures to confirm my NASH/cirrhosis as the rest of my medical team went above and beyond to insure that referrals were approved - But it was groups such as this that helped with my mental health and helped me interpret tests and incorporate the inevitable changes.

My gratitude for individuals like nash2 who have given and continue to give to help others.

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Thanks BU2B I appreciate your kind words. I'm working on information that we can supply to people before they are ill to hopefully change some habits before they discover liver land like we did. We are making a few patient videos with people willing to discuss their experience. Would you be interested in considering that?

Wayne

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I didn’t get no advise my doctor didn’t act like it was a big deal. I still don’t know much about it other then I asked for a ultrasound

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One of our biggest problems as patients is that many docs don't provide us with good information and you can find any kind of advice you want on the internet. We created the foundation to try to have a place for people to learn about this miserable disease. Here is a link if you are interested in diving in

fattyliverfoundation.org/

Wayne

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Hi I found out by chance, Ive not been having much luck with my GP anyway I was always getting letters sent to go get my bloods checked.One day when I actually got an app with her I said I'm fed up getting letters for my blood to be checked, I never get results of anything anyway, I will just get it done at Diabetic Clinic, she said ok. A couple of days later I get another letter saying the reason I'm getting these letters is because I have fatty liver disease ???? and Diabetic Clinic don't check for that ?? I've also just found out I have Pulmonary Sarcoidosis and that's because I went to Dr a couple off times in a year (because you can't get apps with them) mentioning about purple marks on my arms that did'nt seem to go away, and i was having a little difficulty breathing in.She asks me if I would like to be referred to Dermatology ?? which I did. I had a biopsy done and it came back I have Sarcoidosis. I had to go and see her and she said I would never have put that on your arms down as Sarcoid. I am going to leave this surgery as lost what little faith I had with these DRs. I should have done it 10 or more years ago, when they kept getting my illness wrong. It took a locum to send me to hospital and i was left fighting for my life 50/50 my family were sent for. Sorry for long rant but one thing has went from one illness to another.

I hope everyone is well

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I have a question - I recently had an ultrasound that said "fatty liver". I recently (over the 6 months) lost 60 lbs due illness and I am still 199 lbs (so can stand to lose more). My infectious disease doc who watches me for my Lyme disease ran some liver work on me that said that "mild Steatosis" and "N1 - Probable NASH". So off I went to my GI doc. He quickly dismissed all of it b/c he said my ALT was normal and said there is NOTHING to worry about and we would just rerun the ALT every 6 months and I Do NOT have NASH as my liver number (ALT and AST) are normal. I was a little upset as I felt I needed more information. I am considering seeing one of the other doctors in the practice that specialize in liver disease or just switching practices all together - but either way getting a second opinion.

What are your thoughts? I do have an unexplained platelet order where I bleed from my mouth and bruise very easily that started about a year ago - the hemo said we know you have but can't explain why but make sure you take medication when you have surgeries or anything like that - could that be due to the liver. Also, I have been having stomach pain and nausea - also A LOT of fatigue and just general malaise. I have other health conditions so it could be from that.

Thanks for any help. Blessings to you all. Side note in the last six months that I have lost weight been eating more healthy food my cholesterol has gone from 160's to 215 - is that something too?

Leah

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Hi Leah

You are in a fight for sure. My advice is to see a hepatologist as soon as possible. You have a lot of things going on and NASH is one of the first things to find out about. Just one example, a lot of people, me included, have received a cirrhosis diagnosis without ever having an abnormal blood test. With all of your issues you need to have a workup by a good hepatologist.

Best

Wayne

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Okay thanks so much for your reply!!! Can I try a GI doc that specializes in liver disease first and if they are no help then go to the bigger hospital in our state for a hepatologist? I think that might be the road we choose as I don't drive and I have ALOT of doctors and my poor husband takes me to my many appointments. I will definitely heed your advice as my current GI doc said flat out "you do not have NASH and fatty liver means nothing" and I felt that was wrong and felt I was just being "pushed aside". Were you diagnosed with cirrhosis even with your ALT and/or AST normal as my GI was insistent those were the "gold standard" and I tried to disagree but to no avail. I tried to push for bi-annual ultrasounds too but no go there either. Thanks for your all your wonderful help and answers. May God Bless you!!

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I was diagnosed by a hepatologist using an MRE, an MRI with special tools that measure liver stiffness, and confirmed by biopsy. I have never had abnormal blood tests. A GI with liver training is a good place to start if a hepatologist is not available. They have more training than a regular doc but do not get the advanced training. You would think that a Gastro doc would be liver qualified but often it isn’t so. Hepatologists consider biopsy to be the GOLD STANDARD, but even that has an 18 percent error rate in some studies.

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I got a similar reply...lose weight exercise and cut down on alcohol.

I was never overweight got moderate exercise and didnt drink that much. 7 years later...Fibroscan and biopsy said Stage 4 cirrhosis..end stage.

So.. I am now trying to get listed for transplant. They tell me I am not sick enough.

It's a rough road...read read read...go to the best hepatologist you can find. Stop drinking if you do..and eat CLEAN.

Good luck...hope you can reverse this deadly disease.

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thanks Rebel

Good advice, we promote early screening so that people needn't learn of liver disease with a cirrhosis diagnosis. With screening it can be detected early.

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Hi nash2 after being diagnosed nearly with death I turned my life around in a way I couldn't believe would b possible I have cirrhosis an have literally followed every piece of information I have researched I had my bloods taken an my dr has now sent for an appointment ASAP to go back an see my consultant I am struggling to understand why do you have any advice please thanx. Xx

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Hi Whitley

No way to guess, but I assume he didn't like something in your blood work and it may or may not be specifically about your liver. The best thing is to continue to be kind to your liver and try not to panic. There are a lot of twists and turns with this disease and worry won't help you with any of them. I hope you can see your liver doctor soon.

Wayne

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Thanx nash2 I only hope it's my dr keeping on top of things he's good like that although he's not the liver specialist and can't give me all the answers to the questions I do ask him so I will just have 2 sit tight an try my best not 2 worry 2 much as you say it gets you nowhere waiting on a call tomorrow for app with my consultant so just have to wait till then thanx for your reply x

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I was told to have gastric bypass surgery.

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That has become a fairly popular procedure. Did you have it? What happened?

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I am in the process of jumping through hoops to get insurance approval for Roux-en-Y. Thursday will be my fifth of six monthly visits to my physician for monitored weight loss efforts, as required by my insurance. I hope to have the surgery by January or February. If I’m very lucky, I’ll get to have it in December; I’ve met my out of pocket for the year!

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There are a lot of steps to managing these issues. I hope it goes smoothly.

Wayne

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Thank you. It was not an easy decision to make.

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