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Living with Fatty Liver and NASH

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NAFLD but no risk factors

sarah430 profile image
14 Replies

Hello - I was recently diagnosed with Non-Alcoholic Fatty Liver Disease from an ultrasound that was actually looking at my gallbladder (which is fine it turns out.) I have no risk factors and all my blood work including liver enzymes and testing for everything that could cause liver problems is normal. I’m slim, exercise 10+ hours a week and eat a mostly plant based diet. How common is it for someone with no risk factors to have liver disease? My primary doctor says sometimes they see this. I have an appointment with a gastroenterologist (liver specialist) but not until June. It’s frustrating because the treatment is all the things I’ve already been doing. For now I’ve given up alcohol (was a light drinker) and just trying to be more deliberate with my nutrition. Any tests I should ask the doctor about? Thank you.

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sarah430 profile image
sarah430
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14 Replies
nash2 profile image
nash2Partner

Ultrasound isn't very good at determining NAFLD although lots of docs use it It varies by population but 10 to 15 percent of cases don't have obvious risk factors. The most important question is whether you have damage causing scarring which makes the liver stiffer so for many the next test is for liver stiffness using a FibroScan. We are seeing some advanced blood tests such the LIVERFASt test. There is a lot of info on the website, but here is a link to that test which you can order yourself if you want information before your gastro appointment.

fattyliverfoundation.org/li...

sarah430 profile image
sarah430 in reply to nash2

Thank you! I will look around the website some more. I really appreciate this forum and site!

ANNTARA profile image
ANNTARA in reply to nash2

Thank you for all this useful information. Please could you tell me if this test is available in the UK.

nash2 profile image
nash2Partner in reply to ANNTARA

I assume it is as the original work was done at Cambridge I think but I don't know details.

ANNTARA profile image
ANNTARA in reply to ANNTARA

Many thanks , will do some research !

DBradley profile image
DBradley in reply to ANNTARA

Anntara, please let me know if you find the test in the UK. I am in the UK, and would like to the test.

Monicka profile image
Monicka

Hello Sarah! You are not the only one here in this position. I have trouble with my liver too. I’m slim, almost no drinker, I take no drugs and exercise, yet my liver blood tests are bad. I don’t have any spare kilos to lose. So I reviewed my eating habits and made as many changes as possible. I cut all sugar, processed carb, all fatty stuff and red meat. Now my diet consists of vegetables, fruits, legumes, lentils, beens, good carbs (oatmeal, millet, quinoa, natural rice, backwheat, barley grouts), 3 slices of wholegrain bread, two teaspoons of olive oil, one cup of kefir and a small piece of fish or egg or avocado. I’m following this for about 5 months now but unfortunatelly it seems to have no effect on my liver enzymes. They are still high. It’s really frustrating. But I’m determined to follow it as long as it’s necessary be it till the rest of my life. The upside is that I feel really great now, have a lot of energy and my skin improved. So there are definitelly pluses in eating healthy as it brings fruition to all body.

sarah430 profile image
sarah430 in reply to Monicka

Thanks Monicka! That is my plan too. I feel like my diet has always been pretty good, but have been working to cut out any exceptions: processed foods, bad oils and sugars, as I feel like that’s all I can do for now. Sorry it hasn’t made a difference for you yet but it has to make a difference in overall health in the long term I’d think.

TNWONDER profile image
TNWONDER

You sound like me. As i've preached time and time again on this very site......GO GET YOUR FERRITIN LEVEL CHECKED! You may have a genetically predisposed iron overload disorder called Hemochromatosis. This genetic mutation is not that uncommon. Thankfully my doc is extremely diligent and after i popped with a fatty liver last year she ordered additional blood testing which revealed a ferritin level of 660! (normal range 50-100). Further genetic testing proved that i have the C282y & H63D gene mutations (compound heterozygote) which are the primary drivers for hemochromatosis. There is only one proven treatment for this disorder......phlebotomy (regular blood donation). So i've been going every 4 weeks for 6 months now and my ferritin dropped from 660 to 156!!! My target is between 50-100 so i probably have only 1 more phlebotomy to go before i get to my range and then i just need to maybe get a phlebotomy 2-3x per year for the rest of my life. My doc probably saved my life. Iron overload is toxic and directly affects the liver and people with this disorder are at a much higher risk of fibrosis and cirrhosis. I also got a Fibroscan which revealed a normal kpa score (4.6) and no portal hypertension (Thank God) - so i definitely caught this on the earlier side. If i were you, i would absolutely get your ferritin level checked. My goal on this site is to raise awareness about hemochromatosis because I'm fairly confident that there are more than a few here who likely have it and have no idea. Its easily treatable and if you get it on the earlier side like i did, it will have no adverse impact to your lifespan. In fact, with phlebotomy treatment, your fatty liver and/or fibrosis is likely to improve dramatically. Good luck

sarah430 profile image
sarah430 in reply to TNWONDER

That is really great information! I’m glad you’ve found the answer and thank you for sharing. Thankfully my doctor was very thorough and I did have my ferritin tested. It is normal so this is likely not the answer for me. But hopefully you sharing your story will help others that are searching.

andrewax2 profile image
andrewax2 in reply to sarah430

Please keep us informed on this journey. I am interested in finding out what they say. Have they considered Gilbert Syndrome?

geneticnash profile image
geneticnash

Sarah - as you can see here - there is a lot of good info offered in this group based on the experience of others. I also had my Ferritin checked, thanks to the advice of TNWONDER- mine was normal also. My dr is running extra labs - as now my WBC seems low, so I'm waiting for all of the result sot come in to see if that tells us anything. I am like you - slim, healthy eater, minimal drinker, etc. I too, like Monika said, have eliminated processed foods, added sugars, etc. I am having blood drawn this week for the Liverfast that Wayne mentioned. Hopefully that will be more accurate and tell me more than the fibroscan. My fibroscan was a shocker for me - stage 3 steatosis, low stage 2 fibrosis. Continue to advocate for yourself - I've requested referrals to gastroenterology and also to a hepatologist. My dr didn't suggest them - I've had to request everything, since they think I am healthy based on my slimness. Looks can be deceiving. Stay well and you are already on the right track! ps- mine is genetic - and that seems to stump everyone. I lost my brother last year to NASH, and my mom has advanced NASH also, so I am really staying on top of everything.

Banditsmom09 profile image
Banditsmom09

Look up the following which references alleles on the MTHFR gene and NAFLD. Www.ncbi.nim.nih.gov/pic/articles/PMC4953108/. Read the book Dirty Genes. Basically our liver produces glutathione which is an antioxidant. It the gene limits the production, one can have fatty liver.

waterstop profile image
waterstop

I’m in the same situation. Everything Normal, except Fibroscan, slim, minimal drinker,exercise, going to a nitritionist . Have not had my ferritin drawn…. will request that. I am hoping my appointment at Cleveland Clinic will be able to answer some questions that my gastro snd primary can not. so frustrating

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