British Liver Trust
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So does this mean we are dying?

So I have fatty liver that's progressed to NASH. Does this mean I'm dying? Does this diagnosis mean it will progress to cirrhosis and without a transplant I will die? I'm 54 and I have no idea what my prognosis is. I've changed my diet and completely stopped drinking and I won't take any pain meds. But I'm not sure how realistic it is to think about living another 30 to 40 years without ever even eating unhealthy. I don't know how extensive my scarring is or what stage I'm at, but assuming it's bad, based on the doctor's comments, what kind of life expentancy do I have? Am I sick or not? Should apply for permanent disability? Will I progressively deteriorate? I've really gotten virtually no explanation.

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Hi lara,

First of all I would suggest going back to your gp or if your next specialist appointment is soon write down everything you want to ask and have them explain exactly where you are with regards to damage. NASH means you have inflammation and liver cell damage, along with fat in your liver, I’m not medically trained but I’m presuming for any further damage you would need to be putting things into your body that are damaging, mine is the same as it was 2 years ago.. I have not drank a drop and I eat good.

Sounds like you need reassurance from your doctor so that’s probably your best bet, even if you find someone in here who has a similar diagnosis you will be at different stages etc.

Good luck and I hope you get some reassurance soon x

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Thanks for helping me as well as that post said what I wanted say 7months on here it's all you keep me going

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A lot of doc's are strongly anti-supplement, but the "PIVENS trial" showed Vitamin-E more helpful than the pharmaceutical (Pioglitazone) in this NASH study, and many doc's are now accepting the risks associated with Vitamin-E may be worth the possible rewards regarding potential therapeutic value for NASH.

Age related iron accumulation in males has also been associated with development of NASH, & iron reduction through phlebotomy (blood donation) has already been done in several trials with mixed results. Has your doc ever included an iron lab in your blood work?

You might wish to research these on your own and ask your doc about them. He/she may poo-poo the modest results of these studies, but blood donation is fairly safe for most folks and Vitamin-E isn't a particularly ominous supp in low doses.

These therapies may not be miracle cures, but slowing progression of disease is the holy grail with NASH and anything that may be relatively safe and (possibly) helpful may be interesting to someone with this condition.

Hope you can turn this around and get back in the pink again.

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Inherited iron overload is called Genetic Haemochromatosis or GH and should be tested for in unexplained liver damage. Far from being done in “several trials”, phlebotomy has been the treatment of choice for many years now and is VERY effective at removing surplus iron. I should know as I’ve been doing it for 27 years now. Started with a very inflamed liver which was back to normal size within two years of regular phlebotomy and iron levels down to normal withi 18 months. Last month I had an ultrasound which was fine. Certainly worth getting checked.

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Even those without the genetic issue excess iron can accumulate over time. Males in particular are susceptible due to iron fortification of food, done to reduce anemia in menstruating females.

The upper limit for the "normal" range of ferritin is set quite high (300) by most labs, and is the threshold for clinical iron overload. There is a school of thought that "optimal" ferritin is actually quite lower (less than 150).

If you're in the gray zone (150-300) and blood donation is safe, then lowering it may be wise for those with liver issues. The logic behind phlebotomy for NASH. A lot of doc's don't sweat iron elevations in their liver patients as phlebotomy has not been "proven" 100% effective for NASH, but with little risk involved in lowering elevated iron, why not see if this might help.

A referral to hematology would be helpful. When a hematologist sees high iron, they lower it.

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Hi Lara, all I can give you is my own experience. I was diagnosed with NASH. I already had extensive cirrhosis due to alcohol abuse although now haven’t touched a drop for over 15 years. My NASH was down to a fatty liver and this required me to change to a much more health conscious diet. I did that and was listed for transplantation and then spent 18 months waiting for an organ. When the right organ came along my transplant was aborted due to a major haemorrhage which led the doctors to give my family the dreadful news that I was unlikely to live for a further 24 hours. This all happened in November 2016 and I am still here. Here’s where we get into the realm of guesswork. Why am I still here? The best I can guess is that the liver is an incredible organ and it’s ability to regenerate (even slightly) is nothing short of a miracle. The avoidance of alcohol is my number one priority and although my diet is much better than it used to be, I will still have fatty foods on occasions. Life is to be enjoyed and not endured, and for me every single day is a bonus. I have HCC (cancer) and suffer with Hepatic Encalopathy as a result of my poorly liver. None of this has held me back. Although I no longer work, I now get the chance to travel with my saint of a wife and tick places off my bucket list for as long as I am able to. I have renewed my wedding vows after 35 years, been to Russia and am going off to Singapore and the Far East in just over a weeks time. I had to accept that some of the reasons for my poor health were my fault, but nothing was going to be achieved by beating myself up. So my pity potty was thrown away and ever since then life has become so much easier. I will not live another 30-40 years but as long as I can I will keep making plans, and then my job is to stay well enough to see them through. Next year I will be 60 (just got to make it now).

As was advised write all your questions down and ask your doctor. Explore the benefits of seeing a hepatologist and most importantly don’t stop living.

Ray

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great post barnet

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Ain't read it all as I'm getting cab hospital 4hours for ambulances .but bit I read made me feel less terrified read it later xxx thanks

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Good on you, Ray. You are an inspiration finding a balance between dealing with liver disease & living a life. I too just turned 60. Last October diagnosed with cirrhosis from alcohol abuse & HCV. Pickled my heart resulting in an AF event same time as liver decompensated. Scared me into sobriety. So now lucky to be on HCV treatment. Recent tests show liver is improving. One thing I've found for sure, & this forum keeps reinforces it, we have to look after for our recovery.

Your advice is good. Wishing you & your wife happy travels in Indochina. Enjoy the Vietnamese food - I hear it helps lower blood pressure!

Regards scarred but less scared.

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Thanks Damascus, I too drank a “few” too many over the years. Am now 15 years sober, with the liver from hell. Who’s at fault .......Me. When they told me my Cirrhosis was not alcohol related I literally laughed out loud. My liver is functioning better than could be hoped for, all things considered I must have the constitution of an ox. I weighed between 155-160kgs at my peak and never had blood pressure or diabetes and during my pre transplant tests was told I had the heart of a 21 year old. I know weigh a much more comfortable 100-105 kgs, and eat whatever I want really. Life is to be enjoyed not endured and I firmly believe that maintaining a positive outlook all the way through has only helped not hindered. This forum has been a godsend. If I can help someone else deal with their fears, then I am doing something selfless. Selfless acts are the very foundations of “Self Esteem”, something I was sadly missing whilst caught up in the mad world that is active alcoholism. I fully intend to enjoy this trip and have already planned the next one in November with my best friend in the world (My Saint of a Wife excepted) to the Carribean where will meet his brother in St Kitts. So as they say onwards and upwards.

Ray

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Ray, I was reading your post today, I just have one question..How did the doctors determine your liver issues wasn't due to your drinking? I am a caregiver and I take care of a family member. Every time I take him to his appointment i run into patients that are upset that the doctor always says their liver problems are due to drinking and some say they don't drink but being accused of drinking even when they are not drinkers. I didn't really think they knew.

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Hi, I was diagnosed with NASH Cirrhosis which stands for Non Alcoholic Stepeotitus ( or something like that) you can imagine my surprise when they said alcohol was not the cause. I do not accept that but it actually changes nothing my liver is a mess, and as an adult I have to accept responsibility for my actions. The medical profession can often be ignorant where alcohol is concerned, many cannot recognise when someone needs help nor do they know where that help is available. They can be guilty of placing people in pigeonholes, liver issues must mean alcohol abuse being a major faux pas. I was always looked at by GP’s and told with no checks or evidence that I had high blood pressure and diabetes, all because I was 25 stone. I just used to smile and say I bet my blood pressure is better than yours and when checked the look on their faces was worth a fortune. I used to say never judge a book by the cover and shame on you. I know that doesn’t answer your question directly, but it may go to explain things.

Ray

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You might want to try a ketogenic diet to at least get rid of fat that is currently in your liver. Such a diet will involve severe carbohydrate and calorie restriction. This will push the body into using stored fat - including that in your liver - for energy. If you have little stored fat in your body then you need to take care with this diet. I achieved reduction by replacing all 3 daily meals with meal replacement drinks for 3 months. This diet resulted from clinical research. ncl.ac.uk/press/articles/ar...

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Hi Lara. I agree about trying a ketogenic diet. I have reduced my visceral fat & lost about 18lb with this in the 5 months my wife (thin with no problems) & I have been doing it. Best place to learn about it is from the 2 keto dudes podcast and forums ketogenicforums.com/

Good luck

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Thankyou for being brave enough to put all that properly as me ADHD that's how I'm feeling the worry I'm same but your not alone even I no that don't make sence at min but I would not be able to cope at all and I hate the days nights when no helpline no but we're all here and I sorry I ain't got answers but I'm gonna read your replys to help me understand thanks for helping me x

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Thank you for your responses. I was doing Atkins which is a type of ketogenic diet for years. About 4 years ago I started gaining weight I couldn't lose, even with intensive exercise. My liver enzymes began spiking, but never very high and they always went back down. My stool turned pale yellow. I told my doctor who didn't seemed concerned. I saw 2 other gastro docs and neither of them seemed concerned. An adrenal CT scan showed fatty liver but I was just told to watch my diet and try to lose weight.

Then I gained 10 in 3 months in my abdomin and my Dr got nervous, had to fight the insurance company for another CT, they didn't want to pay because I had one 2.5 years ago. It finally gets done 3 months later and shows fibrosis! I never even heard of liver fibrosis! And I was a nurse at one time!

I just don't understand these liver diagnosises and prognosises. If it is something potentially life threatening why isn't anything being discussed. Because there's no cure? If I had cancer there'd be a plan. But I go to work everyday with my fatigue and achey side like a healthy person. But I'm not. At this point I'm sick, correct?

Everyone suggested I ask my doctor these questions, but all of them said I'm ok. One literally said the words you're very healthy. They made me feel like a hypochondriac when I knew something was wrong and everything pointed to my liver. I haven't been able to find good quality doctors.

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“So I have fatty liver that's progressed to NASH. Does this mean I'm dying? ”

Yes, we are all dying! From the moment we are born we are dying. Of course some things accelerate the process. Sometimes as in NAFLD/NASH we can do something about it. Diet and exercise can halt or even reverse the process as the liver is a wonderful organ when it comes to healing itself (given half a chance). However, when liver disease progresses to fibrosis, then we are up sh.t creek without a paddle. It is then that we really need doctors that know what they are doing, and in my opinion they are hard to come by.

Please go back to your doctor, explain how concerned you feel and print some facts out from the British liver trust to strengthen your argument. Liver disease needs to be capitulated into the forefront of medicine and research. We need to collectively dispel the myth that all liver disease is alcohol related and in my opinion, start turning the tables on the food and drinks industry and the pharmaceutical companies that make a massive profit out of our livers.

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My liver disease has progressed to fibrosis and nobody, and I mean nobody treats me like I'm sick. And I am tired. Of course I know we start to die the moment we are born. What I'm asking is with fibrosis should I be trying to apply for disability? Is it too far gone to correct? Will it continue to progress to cirrhosis or cancer? Nobody is treating it like it's anything. And if it's something. I want to know! If I may only have a few years or months instead of potentially 30 or so I'd like to know. There's things to do in that case. So what I'm reading on here fibrosis is very serious. So all my complaints of pale stool that were being ignored were really a good warning signal. And when my liver enzymes were spiking and I asked to be tested for viral Hep I should've been (I don't have any of those but it should've been ruled out by the Drs). I don't know if bariatric surgery would help. The Dr put me on weight loss meds which cause me to lose 10 lbs but I need to lose 40. My BMI isn't high enough for surgery so I guess I'm just done then?

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I'm replying to you but I don't have any answers as I'm in that state so I'll do tired and yes I no wat u mean like no one seams to get it that your ill scared and I'm the same I wanna no as I'm same it's so hard but I'm with u all the way just like u get really good advice of Propa people who care

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