Why do some get NAFLD and not others?

[Lara86]

I'm just wondering if there's any studies as to why some people would be more likely to get this than others. I've always eaten realativley healthy, it least in comparison to my family and friend. My coworkers have commented on it when I started my weight gain. I fear there's more to my story than the doctors know, or are saying. I was told I was perfectly healthy in spite of my symptoms and then I got blamed for lifestyle choices.

[AyrshireK]

Have you read the BLT page on NAFLD? 20% of the population are estimated to have this condition, most don't know it!

britishlivertrust.org.uk/li...

Not always to do with lifestyle at all.

Katie

[Lara86 in reply to AyrshireK]

Yes I just read it.

I was diagnosed with NASH and fibrosis after 4 years of going form doctor to doctor with my symptoms and being told I was perfectly healthy.

I don't know what caused my stomach to get so huge, I was on a diuretic. My endocrinologist sent me for further testing becuase she realized they might be missing something. She looked panicked. She also prescribed Metformin. I lost 10lbs of water weight in 1 week on that med. I still don't know why I filled with fluid and why Metformin made it leave.

I can't find answers online. My portal veins are clear and I was never diagnosed with acites. And with appears to be early fibrosis per CT, US and fibroscan, I don't know why it would be acites.

I know this isn't a professional medical forum but if anyone has had anything similar I would appreciate hearing your story and what, if anything, worked for you.

[Porphyriamaniac]

I've not seen any. I believe mine is down to my porphyria, it's listed as a side effect/common finding in people with it. I've tried to take as much care as I can and it's still fatty as chuff! Maybe some people are just prone to it like some are prone to heart, kidney trouble etc? I think a study would be useful. As Katie said it's definitely not always lifestyle, some of us are just really, really lucky! 😁 xxx

[GrandmaDylan in reply to Porphyriamaniac]

When I went for my liver ultrasound I asked if I had fatty liver. She said yes but so do half the population. I asked if mine was bad and she said it was no where near as bad as many that she'd seen. I felt reasonably okay about this until my gp read out the results of the scan and told me that I have cirrhosis.

[Lara86 in reply to GrandmaDylan]

Yes, I have fibrosis and I was having symptoms for 4 years. My diet wasn't bad, although it had been better a few years earlier. I was retaining water like crazy and always sweaty. Felt exhausted all the time, zero energy. My stool was always pale and runny. Everytime I ate I got bloaty and gassy, had constant reflux.

I had been told, in passing that I had fatty liver. No biggie. Nothing was told to me that it could lead to scarring and ultimately cirrhosis. My endocrinologist was testing me Cushings. Once diagnosed I was put on Metformin and lost 10lbs of water weight in 1 week. Immediately I stopped being sweaty and overheated. Everything started to return to normal.

It just doesn't add up. Other people may have NAFLD (my liver specialist says 30%) but they don't have NASH. They aren't sick like me. I'm not even diabetic yet.

I guess I'm saying that even if I change my lifestyle drastically, which I have, it won't matter because there's something going on that I can seem to fix.

[GrandmaDylan in reply to Lara86]

When I saw the consultant I had taken my daughter who is a scientist with me. She asked him if I managed to lose more weight and get my diabetes firmly under control would it change anything. He said no and that this is mortality and morbidity shortening condition. Needless to say this has completely knocked me for six.

I had thought that there was a problem with my liver for several years, ever since I had pancreatitis caused by a severly inflamed gallbladder full of stones. I have lots of spider naevie all over my arms, chest and back which when I showed them to 3 different doctors they all said that they had no idea what they were. It was the haematologist who actually recognised what they were and repeatedly asked me how much I drank even when I said that I don't drink.

[Lara86 in reply to GrandmaDylan]

That's exactly what I'm thinking.

I'm sorry that you're in cirrhosis and I fear I will be there soon. I am certainly going to do all I can and hope for a better outcome. As of right now I feel much better than I did.

I'm hoping maybe I can retire early, especially since I don't know how long I have left. But my primary care doctor thinks I'm perfectly healthy. As does everyone around me. Even when I was having symptoms they weren't severe enough to make people believe I was sick. Now I seem better but I know I'm still sick. I know I can't deviate from my strict eating or symptoms return. And people think that because the liver can heal itself that my problem is solved.

I hope you are able to improve or get a transplant if and when needed. Thanks for your answers tonight.

[Hidden in reply to Porphyriamaniac]

Hi

Hope you are feeling better.

I was diagnosed with nafld and then Nash with fibrosis caused by the meds my drs have given me over the years!! It's very painful, cos my liver is so large it has stretched the capsule around it which has caused the pain.. love and hugs Lynne xxxx

[Jans1953]

I too had Nash diagnosed in 2002 when I was told it was due to being obese and no exercise. I was 15stone 3 pounds at the time. Nash was discovered following routine blood tests followed by US & liver biopsy although I had no real liver symptoms at the time except very tired. I had lots of friends who were much more obese than me but had no problems. Still don't understand why it happened to me. Even though I lost weight and exercised more the Nash progressed to cirrhosis and liver failure and I had a liver transplant 4 weeks ago. I feel that as they do more research they will probably find an additional cause maybe to do with genetics. Who knows? I know how much more they have learnt since I was 1st diagnosed and am grateful that the search for answers goes on

[Lara86]

This is what is upsetting. I kept being told I wasn't sick. I won't qualify for any kind of disability in the states because I can still work. But I fear my life may be drastically shortened. Nobody in my life understands how serious this is because I don't seem sick to them. I'm doing everything in my power to change my life, except the exercise. I know I need my but it's so hard. They increased us to 40 hours which I have worked in 30 years. I'm older, sicker and just more tired. I wish I could get out of work earlier or work less hours but I can't. I need my job and I need to work but it's literally killing me.

My symptoms have improved but I know I'm not healed. I still feel my liver, below my right rib and in the middle of my back on the right side. If I deviate slightly from my diet my stomach gets sick.

I'm also frustrated that nothing was taken seriously prior to my diagnosis and not much more since. I understand there is no real cure but I wasn't told it could progress even if I change my lifestyle. I've more or less been told that if I change my life it will get better. And that it's not genetic. I've been blamed for my lifestyle.

[tgk62]

When my liver levels went up, my GP sent me to a GE. She ran blood tests, & learned I also have Alpha1 Antitrypsin Deficiency.

[Lara86 in reply to tgk62]

Never heard of that. What is it, what does the bloodwork and what, of anything, can be done about it?

[tgk62 in reply to Lara86]

Alpha1 can affect your lungs and liver. Alpha1.org site can explain it better than I can.

[Lara86]

I just looked at my results and my alpha1 globulin was normal, I guess I was tested.

[tgk62 in reply to Lara86]

I'm glad for you.

[Lara86 in reply to tgk62]

Thanks. Sorry that's what you have. I'm not out of the woods yet though. Don't know if I will be. But I really appreciate you helping me out with information.