Working on reversing fatty liver but still can’t help but feel like it’s more than that.

[Amethyst91]

Hello,

Idk how many have seen my crazy post since May this year about my journey to healing but it’s been a crazy one. I will admit I’ve calmed down mote but still have my anxiety due to still not really knowing anything. I admitted to being quite a drinker for a good 7 yrs or so and I’m only 28. I’ve had IBS-C for about 5 yrs and I’ve always gotten regular follow ups as I always suspected something causing it that they just don’t want to look for. I had an ultrasound in 2018 which was normal along with my labs being pretty good other than slightly elevated bilirubin from time to time. I picked up my drinking pretty bad for 2 yrs and noticed mild nausea and 1 time throwing up which I found odd along with itchy skin and weird 24 hr hives on my back that would come and go for a few weeks so this May I got another ultrasound and labs. Labs were my normal with slightly elevated bilirubin again but this time my ultrasound picked up mild focal fatty infiltration. My drs said lay off the booze and diet and I should be good so I immediately put that to practice. I told my dr that I still had a lot of right upper quadrant pain, it starts below my breast and goes to the bottom of my rib cage and wraps around to the back of my rib cage and even to my shoulder at time and this pain has been consistent since May. All my drs keep telling me that fatty liver wouldn’t cause this bit everything I look up says this is fatty liver or cirrhosis pain. My drs are pretty positive it’s not cirrhosis but I still can’t help but fear it cuz I know something isn’t right. I’ve had a HIDA scan that showed normal flow but slow transit and some bile in stomach which no one has really explained. I’ve had two CT scans showing enlarged liver but they say it’s due to a Riedel’s Lobe because my liver measured 20cm vertically so no dr has actually said it’s enlarged despite my constant concerns. My pain has now increased to my right hip area and thigh and low back. I’m freaking out because I e never felt these pains in my life and they seem to keep developing and despite my lifestyle changes absolutely nothing has gotten better for me. I know I do sound crazy at times but when everything I look up about my pain goes back to my liver I really feel like it’s worse than they say but they don’t want to look into it. In no means do I want to be right about my hunch but I just want them to prove me wrong or give me an accurate diagnosis so I know exactly how crazy I need to be with diet and lifestyle changes. As of now I’ve cut out fries and chips for the most part besides a treat and I buy grapes, melons, yogurt, some veggies and only eat chicken or salmon and get more salads when out with friends. I enjoy my diet changes but I want to know if I can still eat like a normal person from time to time or in order to try to live a full life with my condition do I need to be completely strict on my diet. Based on this info does anyone think my pains could indicate more serious liver disease or did I really catch this at a reversible stage?

Also since changing my diet and lifestyle my liver enzymes did go from the usual 16-18 to now 25-29. I know that’s still in range but since they elevated should I be worried?

[faizreh]

hi Amethyst91

you should go for the Abdomen Ultrasound , CT and fibroscan in order to determine if you have liver disorder . because the elevated bilrubine may due to hepatitis aur due to fatty liver.

you should also avoid all the fatty food and start 30 min aerobic exercise daily and see the result in one month. you can feel the difference

[Amethyst91 in reply to faizreh]

Thanks. I’ve had a clear ultrasound in 2018 then this year in May when I was suspecting issues I had another one that said mild focal fatty infiltration. I also went to the ED due to my right side pain at the end of May where they did another ultrasound that did not pick up anything. But I did tell them about the fatty liver so maybe they didn’t comment since I already knew. The ultrasound that picked it up said my liver measured normal 13cm and showed nothing else but the fatty. The CT scan showed my liver measured like 20cm but that was vertically so they said it was due to the Riedel’s lobe. I feel like a crazy person talking to the drs cuz they keep telling I’m in the good phase and mild changes should be enough but I just feel deep down that it’s more. My right side constantly hurts no matter what I eat or how much or what liquids I consume and for the last month my urine has been really pale and I only drink like 3-4 waters a day. I’m seeing a new liver dr tomorrow who doesn’t know much about me but I’m hoping he will listen to me and all the small weird symptoms I have and fully test my liver the way I think it needs. I’m just so afraid of silent cirrhosis.

[32malewithcolitis in reply to Amethyst91]

Can’t imagine how you feel

I had a liver function test redone as my ALT was 50. Normal is <40. It’s now 98 and AST has gone upto 69. I have no idea what any of it means but I just know I’m very worried even though the consultant isn’t. (I suffer with ulcerative colitis so have been receiving treatment for a flare up)

[Amethyst91 in reply to 32malewithcolitis]

Yea my DR keeps telling me that it’s due to a number of different things that aren’t multi liver but I feel like I just know. She even put me in radiation therapy thinking all this is due to my hyperthyroidism which I don’t doubt is causing some minor issues but I’ve lived with my thyroid in worse shape over the years and never had the issues I’m having now. I feel like a psycho but then again it’s my life that potentially being shortened so i don’t want them to to just look at all the small things and try to push those off on me cuz if I do have serious liver issues it’s just not common for my age. I mean I’ve always told my drs I was a drinker but in order for them to really look at me this time I had to act like I breathed in alcohol like it was air. I didn’t want to make myself sound like a horrible alcoholic but I feel like I had no choice if I wanted them to listen to me since I’m “still so young for serious issues”.

[32malewithcolitis in reply to Amethyst91]

Yeah sometimes you have to play on symptoms to be taken seriously, especially during a pandemic. I’m not sure where you’re located but you can barely get any tests done unless you’re in agony!

[Amethyst91 in reply to 32malewithcolitis]

I’ll say I’m fortunate that my dr will order the basic tests but to get a deeper look is hard. I’m really hoping tomorrow I get approved for a fibroscan and I’m hoping it can be done soon. I wish drs could understand that the sooner anyone finds out exactly what’s going on then the sooner they can start to correctly work on getting things in order and able to live a full life. The longer things take the more damage is unknowingly being done. My goal is to live to my 50s at least but right now I feel like I’m just praying to make it to 30.

[32malewithcolitis in reply to Amethyst91]

50s?! There’s no reason you can’t live a normal long life? I know the feeling though. I have severe health anxiety and my go to is always cancer, regardless of what the results or symptoms are - I always go to that dark place and make myself more ill worrying

[Amethyst91 in reply to 32malewithcolitis]

I feel you there so bad. I’ve tried to stay away from cancer only to open my eyes to all the other problems that can be just as bad it’s awful and I wish I could say like a lot of other do that quitting alcohol eased their anxiety but I feel like mine has only amplified without being able to take the edge off. My mom went fast from cirrhosis and my friends mom passed in her 30s from cirrhosis so I guess that doesn’t help my fear and why I keep giving myself such a short life expectancy.

Have your drs ran tests like ultrasounds or anything? I’ll be honest I feel like I’m some of my health digging I’ve read conditions like yours can elevate some enzymes from time to time. I don’t know if the elevation signals any damages though but maybe your dr is just looking at the colitis and leaving it at that, since I’ve learned they like to stick with the original diagnosis rather than check for other things.

[32malewithcolitis in reply to Amethyst91]

I dunno, they’re gonna ring me tomrorow and maybe do a full liver screen blood tests and I might ask for an ultrasound just to be safe / HOPEFULLY ease my mind

My condition can elevate it you’re right, just hope it isn’t actual damage.

[Amethyst91 in reply to 32malewithcolitis]

My prayers are with you and hoping that you get a clean scan. I do think an ultrasound and full liver panel should help a lot with pin pointing what’s going on. Good luck with everything and feel free to update on your results or comment if you need to vent.

[32malewithcolitis in reply to Amethyst91]

Thanks for your kind words, I’ll update when I hear!

[JanetH67]

As someone whose had an autoimmune liver disease for 22+ years (got sick when I was 26), I can tell you one thing I’ve found certain, stress (worrying about everything) will make your liver ache more than anything, including booze!! True. The times of my heaviest stress are when my liver hurt the greatest, so cutting down the worry/stress will help the constant pain. Sometimes you actually have to practice mindfulness, to keep your mind off your liver, hard but doable.

Next, cleaning up the diet (food & drink) is critical. Until you fully clean the diet of any junk, liquor or anything that makes your liver work harder, most Drs won’t believe you’re serious about changing your health, and if you’re not serious about it, why should they be? Clean diet of veggies, fruit, lean protein (chicken & fish, little to no red meat), limit the carbs, etc etc. All good healthy choices. No booze at all.

As someone who’s reached the end of her livers time (already had massive bleeds that nearly killed me, now having veins cauterized in stomach by the month to help avoid more bleeds & a bunch of other major issues), I can assure you NEVER want to get to this place. It’s true purgatory, so please try the less stress and worry daily, more rigid clean diet and yes, you can reverse where you are with it. Tests seem accurate based on where you are, in terms of staging, but did you have a fibroscan? Please try to release yourself from worrying so much, it will make your pain levels go through the roof ☹️

Sincerely

[Amethyst91 in reply to JanetH67]

I’m so sorry to here all this

I really wish you the best through all of this. Are you able to get or go through a transplant?

I know I can’t relate to how it all feels but I know I’ve seen some ppl go through this and it is awful. I must sound awful knowing what I know and still drinking.

I’m going to ask my new GI tomorrow to please help me rule out all forms of liver disease and a fibroscan is top on my list.

I guess the pain being constant just makes me feel like it’s not right and it can’t just be what they say. I want to be wrong about my thoughts so bad but when I see things in reversible stages they never say ppl have the pain that I have and will always refer it to a more serious stage. I haven’t heard or seen anything so far that say ppl with mild fatty liver have liver pain that also radiates to the back, shoulder, neck, hip, and thigh. I do see some similarities in more severe cases though

It’s hard because I’ll be honest I’m not a cook and when I try I accidentally over use oil or something bad. I have cut adding extra salt and I cuz out French fries, though I still get chips and salsa sometimes when I’m out. I buy grapes, watermelon, blueberries, yogurt and granola for home and try to cook veggies with a baked sweet potato but I’m just not good so I still get a lot of fast food salads. I admit it has been a slight struggle to completely quit but I feel I’m getting better by the day especially with the fear of not having a full life haunting me everyday. The stress is probably what makes kicking the hardest but sometimes I see improvement but I really just load up on teas to try and calm down now.

[JanetH67 in reply to Amethyst91]

Still ‘not sick enough’ for transplant (meld not high enough) despite nearly dying. It’s quite laughable. I guarantee you, if it’s more serious than you think, the Drs will see that. There are very specific set of constraints that go with each stage of liver disease: healthline.com/health/liver... (And with fatty liver it CAN be reversed, not so with autoimmune causes ☹️)

I’ll tell my story, the pain from me liver was actually worse at my earliest stages (1 & 2) than it has been at the latter 3 & 4 stages.

Try your best dear. You and only you can fix this. We aren’t given any extra days at the end, once we’re feeling better - that never comes!

Even liver transplant will only exchange one set of problems (and pre-transplant set of drugs and lifestyle) for another (post-transplant) set of problems and lifelong anti-rejection drugs. Trust me, if you have a path OUT of liver disease by just eating healthier and no drinking, please take it! I would trade places with you in zero seconds flat!! 😍

[Amethyst91 in reply to JanetH67]

I think I just saw a bad example of cirrhosis case and it’s my main impression of how they find it and treat it. Which wasn’t very good all around.

I completely understand the not sick enough part, it seems like bad joke. My mom had a list of other health problems and idk if they just hid her other illness or what but she ended up cirrhosis completely out of nowhere. I guess it’s hard for me to rely on them because they were literally running tests on her and seeing her in offices at least once a week and still didn’t make that connection until her ammonia levels got so bad it was like she was possessed by a Demond and rushed to a hospital. She had the highest ammonia levels any dr had ever seen in their careers, I just don’t understand how they missed it for so long cuz it apparently takes years to develop. I guess that no I don’t need someone to say I’ll live for years and years but I just need to be absolutely aware of wear my condition so I know how strict my diet needs to be and if I have to be crazy about it or can I still have my favorite foods from to time. I’m trying slowly but surly to get there. I’ve also just had a positive AnA test, even though that was for lupus but I think they said the other tests say no lupus so I do what a positiveAnA means about all the other ones out there.

[cammeag in reply to Amethyst91]

Jack I have been wanting to reply from the start of your post, many beat me to it

You seem to have had many tests but are hinging everything on the results of a 50% reliable machine. I had fibroscans. It never told me I was going to have liver failure just shortly after. Come to that, neither did the doctors. Under the patients charter you have the right to know exactly what they have found to be wrong with you, what they cannot and will not do is speculate on what you have. It seems to me that you want someone to say, okay, you categorically do not have cirrhosis and your liver is fine and you will live fifty years if you reign yourself in. Here’s what I think. Looking at your aforementioned tests and symptoms you have nothing to worry about. Your liver is not enlarged so the pain in your breastbone can be a number of things, but it definitely(probably is not liver related. The liver has no pain receptors so it cannot be the cause. You have at the most some localised fatty deposits on the liver. Now that gives you choices and you do not have to become a nun. Try and keep the unsaturated fats down to about 25% of daily intake. Get yourself a diet tracker like fat secret as it gives carbs, proteins and fat. Go for a massage. Explain your chest symptoms along with back and thigh pain. Also, revise what you drink. Is it gassy? Acidic? Then maybe change that. I am not telling you to drink again. Have a month off. Look at yourself honestly. Can you moderately drink if you do not worry, it is difficult. At the end of the day with alcohol there can only be one master. You or it? If it’s alcohol you must stop, because as my specialist said to me as I like you was petrified of cirrhosis, he said, ‘David, as sure as eggs are eggs, you keep going and you WILL realise your greatest fear and it won’t be pretty!’ I took no note. I suffered liver and kidney failure in April 2019 and as he said, it was not pretty.

Your young. Go meet your big challenge and come back on here in a month and tell us all how well you are doing. I will pray for you.

[Amethyst91 in reply to cammeag]

I guess as I said in my above comment, my main experience with someone finding out and getting treated for liver disease was pretty bad. A person who’s under constant dr supervision ends up with one of the worst cases of cirrhosis. It definitely makes you question testing and what drs look at. On top of this I had lupus test with a positive AnA but apparently negative other things so they said no lupus but then why am I getting positive AnAs? Do I have some sort of autoimmune or something else that could be attacking my liver along with the alcohol? Idk. I know I’ve never felt the way I do now in my life and since starting the health journey in May , I’ve only added onto the list of problems rather than have been able to diagnose or treat anything. My most recent thing is frequent clear urination 24/7 that’s been all this month and no one can tell me what’s going on with that either but I’m definitely not drinking that much water. Cuz then I’d never leave the bathroom. I’m not saying the fibroscan will be the 100% thing but I am hoping to be able to combine it with other tests to get a better picture of where I’m at. I probably won’t feel right unless I got the biopsy but if things don’t look bad then no one will probably give me that. I completely understand that actual liver itself does not feel, but if it’s enlarged (which I truly believe it is) then it can push in surrounding tissue and cause the pains and also push on nerves causing some pins and needles nerve issues which I again think is a huge possibility. I mean they did measure this thing at 20.9cm vertically and I’m a very tiny female so it’s not like Ike got room for a naturally large liver. It could be why I have a lobe though too since I don’t really have lots of room for it , who knows. I’m definitely not trying to ask for trouble but I am just trying to not get blindsided because it seems to sadly happen in medicine more often than we think or hope it would.

I do appreciate your comment and sharing your story. I’m so sorry it seems you still got a bit blindsided as well. I hope your doing a bit better at the moment. Are they able to or did they work on treatments or transplants for you?

[cammeag in reply to Amethyst91]

I am sorry but I feel you only seem to be hearing some points. A biopsy is very dangerous. You’ve heard the story of cry wolf...again apologies, but will this all stop after a positive in something. Are these feelings new or have you always felt somethings wrong.

I will change the end a bit....do not drink, eat as well as you can, get thirty mins fresh air everyday. Then...come on in a month. If you’ve done it then come back in a month and say your worse...I beg to differ.

[Amethyst91 in reply to cammeag]

If things were that simple I wouldn’t have come back on here 3 months after the initial onset. I was working out but unable to now due to the pain. I was eating literally nothing but salad for like 2 months and only drinking water and tea and my list of pains and complications only grew.

Drs do feed misinformation as I’ve been told for two months now that my liver was lent enlarged and I can take Tylenol. I only would take Tylenol once maybe 3 times a week for the pains and insomnia. I’ve now got a second opinion confirming my liver enlargement and told not to take any meds like which I always questioned anyway. Trust me if the taking care of myself part did anything I wouldn’t be on here.

[cammeag in reply to Amethyst91]

Okay. I do understand your worry and frustration, more than you will ever know. I like you was wrongly prescribed, morphine was mine, which although initially helped, put me in a very dark, lonely scary place for about nine months. My encephalitis went nuts, I was hospitalised three times after my (liver failure) discharge last year. That was a GP who did that to me, not my liver team. In fact they went nuts at what she did to me, although they should have known something serious was up when I missed appointments. That whole GP practice had very, very little gastrointestinal experience. I left and my GP now is very knowledgeable and is always checking on me.

So, question is, who prescribed to Tylenol? I am being a bit presumptuous here, but I’m guessing it was not a liver specialist.

I don’t know your name so I will carry on with Jaci. You are on a group here I know is caring, helpful, very very knowledgeable about ALL matters pertaining to the liver and gastro area. They have went from very little signs, to liver failure, some gradual and others out of the blue. From there to recovery and post transplant life. Some have sadly passed in their fight. The individuals have helped people on here from the downright sceptical and abusive to those happy to listen to some advice. We are not experts but we care and our replies are carefully overseen by a BLT nurse to make sure medical misinformation is not passed on.

Do you honestly think that the many, many caring, highly experienced people on here have just ignored your posts? I think not. It’s because nothing you say has set off alarm bells and they have thought, I can help here. Little bit strange no??

Do you have a liver team or specialist? One of them is certain to have private consultation clinics. They are not without cost. But they have direct access to your medical history and hopefully know you. Look up their private practice or private hospital they also work in.

Book an appointment. I will even pay for it myself if it’s £300 or less. Get him/her to explain to you ‘everything’ they see pertaining to gastrointestinal problems.

Please believe me, if they say it is nothing to worry about and look in other areas for the solution to the problems you are so adamant pertain to the liver, then they are probably 80% plus correct. No certainties in medicine as much as we would like.

Take care and go to the correct places for answers.

David.

[Amethyst91 in reply to cammeag]

Thanks. I don’t mean to come off like I know everything. I have had a lot of symptoms of many things and my main concern has been the pain in might right upper quadrant. I’m concerned because google (I know is not a dr) always says that pain can mostly relate to liver damage. This is the most frequent pain I have but I have had more pains. Knowing my history I’m quick to jump to liver issues and having these recent test solidified that. I do know and my goodness am I praying that this is mild and either easy to live with or even better something I can fix completely or almost completely. I will admit some other issues I have don’t add up to just the liver and autoimmune diseases run in my family. I’m frustrated that my gp hasn’t listened to me much on my concerns for autoimmune even though my AnA came up positive, which to me can really help explain some of what’s going on. My GP even though I do really like her , I believe just blasted me with radiation for my thyroid without really looking into things. Also she has recommended Tylenol and other things that can damage me further. Sadly it’s not even her that’s done it either. My GI office I’ve been seeing for years who also managed my mom after her cirrhosis diagnosis handled my case poorly in some ways. The PA at the office did run the HIDA scan for me and my first ultrasound, however has for years ignored my request for better liver function test other than ALT and AST. He also decided that once I got fatty liver that there was no way I could be experiencing my pain from fatty liver , my pains are almost textbook to liver issues. He also didn’t think it was necessary to elevate my case to the actual DR there and continued to tell me Tylenol was safe. Finally the actual DR took me in last month after my endoscopy but I haven’t really been able to talk to him much. I do suspect possible autoimmune hepatitis, though not likely and I’m hoping not likely, but also other autoimmune as I have parts of my body that have become inflamed with no clear reason either. And the no clear reason is definitely concern for me because inflammation doesn’t lie, my body won’t get inflamed for no reason without cause and right now that’s where I’m at. I’m frustrated and sad and I have been prescribed a few mood type meds but when I look up how they work with liver they all say they are related to liver damage so I can’t even take those. Idk if you have experience with that but if you do know of any that are safe and helpful I’d love to know. I know I sound crazy sometimes but I can say that I have vibe 28 yrs of my life and never on any scale have felt the way I do now or have had the things happen in my body that are happening now. Like I said I have been trying since May to get myself healthier and I feel like some things have made it worse even though I quit drinking and eating as much fast food and that’s very discouraging for me. Yes I do want a switch that just gets me better but yes I understand that’s not how things work but if I have any hope that I can reverse this then I want to know all my options and get as close to normal as I can get.

[Amethyst91 in reply to cammeag]

Btw I know I’m ranting. Thank you for your advise, I know none of these stories are ones anyone ever wanted to tell but hearing them does help me try to understand a bit more. You have shared a lot and I thank you for that too. Can I ask if you had any symptoms that lead to your diagnosis or did things happen suddenly? If I’m asking too much I completely understand and I do apologize.