NASH

[Ajo13]

Hey y’all, I was recently in the emergency room because I’d been having awful RUQ pain for over a month. I went in pretty sure I was going to have to have my gallbladder removed, but then was told that my gallbladder was perfect, but I did have a moderate fatty liver. The ER Doctor told me that he thought since I was having pain, I might have NASH. At the time, I had low albumin and creantine. All liver enzymes normal. He told me he didn’t know much about it and that his best advice was to lose weight and change my diet. I followed up with my primary care Doctor who then sent me to my gastroenterologist. She immediately rechecked my labs that had all went back to normal, it was about three weeks from my ER visit. She said she didn’t believe that I had NASH due to the fact that there was no liver inflammation noted and all of my liver enzymes were normal. This was all in late September/mid October. I cut out pretty much all sugar from my diet and started exercising daily. I’ve lost 25 pounds since then. Now, I’m thinking after eating some bad food over the holidays, the pain is back and my creantine is low again. I know that y’all can’t give me any advice, I’m just curious if anyone else has been diagnosed with NASH with normal liver enzymes, no high blood pressure, and no diabetes. I can’t find a lot of information online and am feeling a bit hopeless at this point.

Thanks in advance for your help and time.

[gillianTS]

I think the best thing you can do is keep a food and fluid intake journal and if necessary recreate some of your diet with the not so great things you tried over the holidays to see how you feel once you have tried each food. It is great your test results are not showing anything. Food and fluid intake is so important with many conditions and very important as far as the liver is concerned. Hope you get the bottom of what's triggering your feelings then you can avoid such foods/drinks in the future.

Removing refined carbohydrates from your diet is a great way of helping your body and increasing the amount of plant based foods will certainly help.

[nash2 Partner]

Hi Ajo

Lots of people have NASH and even cirrhosis without abnormal blood tests. The blood responds to how fast damage is being done so if it is slow, as is common with liver disease, blood results are OK until the disease is fairly advanced. Losing the weight is the right path to take. Diet is your only real tool at this stage as medicine has few treatments. Here is a link to information about diet if that is of interest to you.

fattyliverfoundation.org/di...

Wayne

[Ajo13 in reply to nash2]

Thanks Wayne, I had a feeling that was the case. The doctors all keep dismissing the original NASH theory the ER doctor had which is very concerning to me seeings how all signs point to that. I went back through my medical charts from the last five years and have never had low albumin, creantine, protein, or any of the other wacky things going on. Think I’m going to look into getting a second opinion and hopefully someone who will take things a little more serious. I think since I don’t have diabetes or high cholesterol and I’m only 28, they think it just isn’t the case. Going to look at your link for diet now, should be really helpful. I was finding a lot of back and forth info on what I should and should not eat. Thanks again!

[nash2 Partner in reply to Ajo13]

Thanks Ajo

At your age it is difficult to be taken seriously when you discuss liver disease. It is uncommon but not nearly as rare as it used to be. With young people it is frequently related to auto immune issues, toxins, or other environmental concerns but it is common for people to have a 5+ year journey from doctor to doctor before finally being diagnosed. The problem is magnified because the standard of care is not to test for liver disease absent symptoms so unlike things like cancer or high blood pressure the policy is not to look for it. If you can find someplace that will do a FibroScan for you that is the simplest way to see what is going on. If you live near Houston we will do it for you for free but the service can be a challenge to find. Here is a link if that might help.

fattyliverfoundation.org/ed...

Wayne

[Rick6776]

I'm no expert either. I have NASH confirmed by ultrasound and the special fibrosure blood test. My last ultrasound shows increase in fatty liver and now enlarged liver. Sometimes liver enzymes are mildy elevated and sometimes they are normal, can't go by that. I have no diabetes, I'm not obese, normal triglycerides . Sometimes you can figure it out. I would see a heptologist who subspecialty is Liver diseases. He will give you good advice.good luck

[Ajo13 in reply to Rick6776]

See, that’s exactly what my doctor used to rule it out. She literally said your liver enzymes are normal, you don’t have diabetes or high blood pressure, and your cholesterol is normal. I had a feeling I should be more persistent in figuring this all out. How long ago were you diagnosed and how have you been managing? Hope you’re feeling as good as you can!

[Ajo13]

Thanks for sharing you guys. It kind of worries me how fast the gastroenterologist dismissed the NASH theory of the ER doctor. My primary care doctor literally thinks anything and everything is anxiety related so she’s basically useless. The gastro doc ordered a HIDA scan that I’m having next week to make sure the pain isn’t actually from my gallbladder. Think that scan shows liver function too so maybe that will give me a little more insight. Will keep you guys updated! Reading everyone’s stories on here has given me a little hope. When the doctor first mentioned NASH and I went home and googled what that was, I found very little information and felt like it was a death sentence. This is a great community. ❤️

[CTink in reply to Ajo13]

I have NASH since 2005 which showed an abnormal reading on some blood tests. I then had a liver biopsy which apparently is the only way to tell if the lover damage is caused by alcohol or not and in my case not. Not only did I not find much info on it I was surprised how many Doctors didn't know what it was and had it look it up themselves. Just had a Fibroscan a week ago and was pleased to hear my liver hasn't changed since 2005. Its really annoying when Drs pass off your symptoms as nothing to worry about, so hope you get some answers soon

[Rick6776]

Just diagnosed in 2018. So far just diet but not doing well sticking to it. I am going to see a heptologist, and get a fibroscan , special ultrasound that looks at elasticity of liver. Scary diagnosis knowing what outcome can be. Good luck to you as well. Never take the word of one person, keep researching and ask for tests your self.

[PNIAuthor60 in reply to Rick6776]

What is a fibroscan?

[CTink in reply to PNIAuthor60]

its a bit like the scan they do for pregnancy but it shows the density of the liver and what stage ie Steatosis (NAFLD) - Fatty liver, NASH Fatty liver with inflammation, Fibrosis - with scarring, CIRRHOSIS It doesn't hurt and doesn't take very long.

[Ajo13 in reply to Rick6776]

Sticking to the diet is so hard. In September when I was diagnosed, I immediately threw out everything bad and started eating extremely healthy. I remember crying in the kitchen one night because my roommates were having pizza and I was stuck with chicken breast. The diet changed did eliminate a lot of the pain for me though. I’m kicking myself right now because I ate so badly over the holidays that the pain is back with a vengeance. Will probably take me a couple of weeks to get things to settle down. Let me know if you want any recipes though, I’m been on the lookout. ❤️

[Ajo13]

I forgot to ask you guys if anyone has experienced stool changes?

[Riggsy1]

Have you been tested for hemochromatosis? I found out i had it. This contributes to fatty liver and in my case actually caused the fatty liver. I monitor what i eat and try to stay away from iron rich foods. When my liver function test elevate and creatine goes off level i have flubotomy where they remove blood (one bag) and my levels come back within normal range. I had my siblings get tested and all but one has hemochromatosis. Now finding some of my cousins have the same symptoms and issues. It is genetic testing so insurance may not cover it all.

[Ajo13 in reply to Riggsy1]

I’m not sure if I have or not, as soon as they found the fatty liver, my gastroenterologist ordered A TON of blood tests to rule out pretty much everything under the sun. Do you know exactly what the test is called, I could go through my chart and check. What were your symptoms?

[Riggsy1]

All the s as me symptoms as fatty liver. Elevated liver function tests. Ask doctor if you were tested and read up on hemocromatosis.

[Chefpat]

Your story sounds very similar to mine. I was just diagnosed with NASH a few months ago. I’m 34, for the most part healthy...non of the NASH risk factors. I was experiencing RUQ pain and I saw my doc. They suspected gallbladder. I had ultrasound and HIDA scan done both showing negative for gallbladder issues but they discovered fatty liver. They had me do a FibroScan and boy did that scare me. It gave me results of very severe NASH and potentially cirrhosis. So they had me do a liver biopsy to confirm the results. The biopsy showed less severe NASH with minor fibrosis. My blood levels are close to normal but not perfect.

It is crazy being young and dealing with this because doctors don’t take it seriously. I’ve had multiple docs tell me that I’m young and healthy and don’t have to worry about this right now but that I’m 5-10 years I’ll have some issues. I deal with liver area pain all day every day. I’ve been eating very healthy and trying to exercise as much as I can. It’s tough to not eat delicious (not so healthy) foods all the time but my thought process is that if I can control this thing at all I should do my best for myself and be strict about what I eat.

I’m sorry that you seem to be dealing with the same thing. It can feel like no one has your back in the healthcare system. Reading about similar stories makes me feel better that I’m not the only one dealing with this issue.

[Ajo13 in reply to Chefpat]

So you have the pain under your right ribs but only have minimal scarring? I still haven’t had a Fibroscan to this day. I’m truly not convinced they will ever order one.

[Chefpat in reply to Ajo13]

Yeah, according to my biopsy I have only minor scarring but I experience pain under my right ribs everyday.

[Ajo13 in reply to Chefpat]

Well that gives me a little hope. My anxiety is horrible because they won’t order any further testing for me since enzymes have remained normal. It’s scary.

[Chefpat in reply to Ajo13]

It’s surprising how little docs seem to be interested in figuring things out. My experience at least

[99problem in reply to Ajo13]

That gives me some hope that I don’t have cirrhosis. I was diagnosed with enlarged fatty liver at 30. I too have pain most days . Does anybody experience sweaty abdomen from the heat of their liver ?

[Kitkatnash]

Yes I do. A biopsy of your liver is how they see how much liver damage you have. I have good blood work numbers now but I also have fibrosis which means permanent damage. Some people improve and some continue to get worse. I try to live each day as my body allows. Some days tired. Some days feel normal. Best to you.

[yedurag]

I am facing the same issue for years. The same story as yours. I hope you are doing well now. I am trying to eat healthy and exercise and right UQ pain is very occassional. Hopefully its not NASH. I dont know really because no doctors took me seriously. I have fatty liver.