Has anyone heard of lean NASH? - Living with Fatty...

Living with Fatty Liver and NASH

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Has anyone heard of lean NASH?

Amethyst91 profile image
9 Replies

If anyone has read my posts I do have steatosis grade 1. I was diagnosed In May after some heavy drinking and due to that it’s been believed that I have alcoholic fatty liver that can be reversed with abstinence, diet and exercise. It’s been 6 of all that and some weight loss which isn’t really needed since I’m only 120lbs and 5’9, I don’t believe the fatty lover has gone down at all since my fibroscan a few weeks ago still showed a cap score of 246 but a good kpa of 3.8. I was doing some research on beating fatty liver since we all know the drs can’t tell you much besides what a test score says. In the research I came across lean NASH and wonder if I might be someone who suffers from that especially since my mom passed from cirrhosis and both my parents are diabetic but I am not. The things I have read say that it’s not well understood but believed to possibly be worse than the regular fatty liver that comes with alcohol or obesity and I’m pretty worried. A lot of it suggested lean Nash patients have a worse prognosis and even higher risk of developing cancer. I’m wondering if anyone on here suffers from that and or has any information to give about it. I’m in a lot of pain which some drs say is normal for fatty liver and some say is not and some articles point out that lean Nash patients usually suffer from the right quadrant pain and shoulder pain as I do and that the condition they have is usually Nash and not just fatty liver. My liver is enlarged and fatty but no test has shown any signs of inflammation so idk if that matches me or not in anyway, I just know it’s been 6 months of lifestyle changes but nothing really to show for it.

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Amethyst91
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9 Replies
nevergiveup887 profile image
nevergiveup887

Hi,

What is your LFT readings and FIB-4 score? Has your doctor ruled out all other possible causes of liver disease like Hepatitis, Autoimmune etc.? Are you consulting a hepatalogist?

Also what is your body fat %, Visceral fat %, WHR?

Amethyst91 profile image
Amethyst91 in reply to nevergiveup887

I’ve seen like two gastros and one Hepatologist in the last 6 months. Gastros agree on fatty a would not do any further testing if I didn’t ask at every appointment. My ast and alt have stayed between 14-25 in the last 5 yrs only this year they crept up to the 20s. Bilirubin has always been1.2-1.8 with three highest being 2.5 but after quitting drinking bilirubin is .8.

Ultrasound showed mild fatty liver 13cm 6 months ago, ct scan showed enlarged liver at 20.9cm but they blamed it on me having a Riedel’s lobe do the write it off as no big deal. I had the fibrosure or whatever it’s called fibrosis blood test that showed F0 2 months ago and ggt was 16. I had a fibroscan two weeks ago that showed cap of 246 and kpa 3.8 and iqr 21%. They said no big deal fatty liver and gave me no explanation for pale stools or right side pain in my abdomen, hip, back, and neck and that was from the Hepatologist at the transplant hospital. I also mentioned my itchy skin and very slight yellow color in the very minor corners of my eyes that no one else I know has and they dismissed all that. I honestly don’t my body fat or visceral fat or anything else I just know I’m 5’9 and 120lbs and besides from being toned I have the ideal super model no fat showing body type (not trying to sound conceded) just feel like if I lose anymore weight I’ll be a walking skeleton. But I’m saying that my muscle mass is still holding up and I don’t see myself losing any of that yet.

nevergiveup887 profile image
nevergiveup887 in reply to Amethyst91

Hi,

My Story: I'm diagnosed with NASH which has progressed to fibrosis. I was never obese and had a BMI of 24.5. So you can call it lean NASH. My Liver Kpa was 19.9 on fibroscan (you will find full details of my condition on my bio). With good diet, lifestyle changes and exercises I have reduced my BMI to 22 and now my liver score is at 12.9 Kpa. I know there is no much fat to lose but all it matters is good diet and healthy lifestyle. I have not had a single drop of alcohol from last 4 months. I was diagnosed with Fatty liver around 4 years ago but as my doctor did not bother even I did not bother much about it. Due to bad diet and lifestyle and occasional social drinking the condition progressed and now I'm standing at a place with liver fibrosis.

In your case, you don't have fibrosis and your liver stiffness score of 3.8 is not bad at all and neither your CAP score is bad. I wish I had such type of score when I started to work on my condition. I had occasional upper right quandrant pain and this is reduced now. BMI does not matter much as long as there is too much of Visceral fat(fat around your belly). By your description I believe you don't have much of visceral fat or overall body fat. You can get this checked at any fitness center and they also measure waist to hip ratio.

There might be lot of underlying factors and they must be ruled out first and your doctor will be better equipped to do that. My doctor diagnosed me with having metabolic syndrome(syndrome x) as the cause for my NASH and my line of treatment is on that. You may want to work it out with your doctor or may take second opinion by consulting a reputed gastro and hepatologist to understand the underlying cause of your condition. And again liver disease is a complicated thing and they may not be able to say for sure what is the underlying cause. My doctor got tests done for me to rule out hepatitis, auto immune and they all came back negative. As my fasting glucose level was bit high and my cholesterol levels were high my doctor diagnosed me with NASH due to metabolic syndrome. There are numerous factors in play like gut health, gut microbiome and many doctors gets a endoscopy done to verify that as well. Even genetics has a major role to play here. I'm not a doctor nor an expert on this but I have done lot of reading to understand my condition. You need to work with your doctor in improving your condition.

Don't lose hope and keep working towards improving your lifestyle and this would help.

You can get FIB-4 score from your doctor or can be calculated by yourself using below

hepatitisc.uw.edu/page/clin...

Fatty liver foundation: fattyliverfoundation.org/is a good place to understand more about all this and hear from the experts in the below video.

fattyliverfoundation.org/r?...

nevergiveup887 profile image
nevergiveup887 in reply to nevergiveup887

I'm no expert but have done lot of reading to understand my condition.

I'm following good low carb low calorie diet similar to Mediterranean diet with avocado and olive oil. I do HIT and cardio and run for almost 5K every alternate days. I do yoga and meditation and try to get good sleep at night, even reducing stress will help. I make sure I remain active throughout the day and don't take daytime naps. I also follow some home remedies and I drink 2 cups of black coffee (no milk, no sugar). I do weight training to increase my muscle mass which also helps.

If I can do this then anyone can. Don't lose hope and keep working towards improving your overall lifestyle. This will help in a long run. This condition can be reversed and it will be an uphill battle, but never stop fighting.

This is not an terminal illness and with proper maintenance the progression can be halted and in many cases can be reversed. So don't stress too much and get this to hamper your quality of life and at the same time don't take it lightly. Keep working towards your goal. Good luck.

Amethyst91 profile image
Amethyst91 in reply to nevergiveup887

Thank you. I had another visit today at Loma Linda transplant hospital with the same de that treated my mom. He wasn’t too concerned about it being too serious yet but will monitor me for lean Nash. I did find out that my BMI is only 18% so definitely losing weight is out but I am trying my best to eat healthy and when I can I try to go on walks since I don’t have time for much during my day. I try to do some core workouts at home but with my right side killing me it’s a bit difficult. I do drink lemon water every and espresso with a bit almond milk a couple times a day. I definitely quit the junk food so I’m hoping this helps me but I still don’t get much dietary info except eat clean. Sadly I’m a horrible cook so I still get food from places but I just get the healthy side of it. I really hope that this will help me get rid of the fat because I was a bit dissatisfied to still have a cap of 246. He scheduled me for a follow up fibroscan in a few months and I hope that my score goes down a little since I now have something to compare it to.

nevergiveup887 profile image
nevergiveup887 in reply to Amethyst91

As there is not much to offer on diet tips and there is lot of research that is still required on this, all that is out there now is low carb low calorie diet and can be Mediterranean diet as well. You can check out below links for diet info

fattyliverfoundation.org/na...

fattyliverfoundation.org/r?...

You can also talk to your doctor to get a Magnetic Resonance Elastography(MRE) if required to diagnose better your right upper quadrant pain.

Keep following the good lifestyle, perseverance is key here. Wish you good luck.

Amethyst91 profile image
Amethyst91 in reply to nevergiveup887

Did you get an MRE? I’m not really sure what those are. I know I had and MRI on my head that a neurologist wanted but I don’t think that was anything. So far I think the most they are willing to go I. The fibroscan and keep and eye on me for a while. I’m thinking about buying a bike for my house so I can work out from home.

nevergiveup887 profile image
nevergiveup887 in reply to Amethyst91

Hi,

In India MRE is done in very few hospitals and is very expensive and my medical insurance was not covering it and also as my condition was improving my doctor did not insist on getting it done. You can talk to your doctor to see if this test really helps them in the diagnosis.

MRE is a test similar to the regular MRI scan but will help doctors to specifically see the liver more clearly for steaosis, fibrosis and things like that, only if your doctor thinks this is necessary test then you can go for it.

For me running/jogging either outdoor/treadmill is a motivator. Keep doing the things that is working for you and each day you will get better and better. My best wishes and prayers. Good luck.

Cat551 profile image
Cat551 in reply to Amethyst91

Lean NAFL or NASH, as you may have read can be caused by genetic polymorphisms, a defective gene or genes. I’ve read the studies, but take hope in the fact that only one or two studies suggest lean liver disease has a worse outcome. And because there aren’t many folks in that specific category in the studies, the results are based on a small sample group. There are several studies that say that a lower BMI does have a positive outcome. I’m in the same boat, BMI of 20. Losing weight isn’t really an option but the distribution of the weight can be improved if you have any visceral (abdominal) fat. I’ve read exercise and somewhat lower carbs help. Definitely more research needs to be done in this area. Keep the faith.

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