I’m happy to have found this group. I was recently diagnosed with NASH stage 3 fibrosis. Have any of you with stage 3 fibrosis been able to reverse some of the fibrosis to stage 2 with eating right and exercising? It frightened me to already be stage 3 before I realized I had liver disease and I’m trying to be hopeful. I’ve lost 20# since the diagnosis.
Thanks so much and wishing all of you well!
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Cats2018
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Thanks for the encouragement Wayne. I read your story & am definitely encouraged by it. I know you’ve been very strict in your diet plan to accomplish going from 4 to 3! I hope there are more here with stories like yours! I’m working at it!
I am a newbie, I have been told I have a fatty liver and borderline Fibrosis and waiting for an appointment with Liver specialist, wanting to know if there is a special diet, and I have started back my exercise, which bike riding 2 to 4 miles bout 3 to 4 days aweek. and exactly what is Fibrosis...I am a diabetic for last 15 yrs...
I only found this site in August myself. Fibrosis is scarring in the liver. If you scroll up to the 1st comment under my original post about hoping to reverse stage 3 NASH, the 1st comment from Nash2 (Wayne) has a link to a suggested diet that includes things to avoid and what we should include. It should be helpful to you. If you only have borderline fibrosis the sooner you start changing the way you eat the better. I wish I had known before I was already stage 3 fibrosis. You’re already doing the exercise which is great. Avoiding alcohol, sugar and processed foods is important. I was pre-diabetic, following the diet guidelines and losing weight since my diagnosis on May 9th has lowered my A1c back to normal.
I’ve found this group to be helpful for support and comparing notes, so I’m happy that I found it!
Cats2018 I am actually in the same situation. I just recently found out myself I have stage 3 liver fibrosis. I am scared of getting worse. I don't want to die. I needed to find others who are in the same situation or have been through it and improved. I need hope and help and above all I feel like I need a miracle. I hope you succeed and improve this disease just like I hope to improve my disease. Thank you so much to you cats and nash2 both for posting. This does give me some hope that things can improve with making better choices.
Hi Catbunny1987, Your message makes me happy that I posted my question which gave us the positive response from nash2 (Wayne).
When I got the initial diagnosis I was so shocked & so scared. I felt like there was no hope, so I know how you are feeling now. I just had my monthly appointment with my hepatologist and I asked her some questions. She confirmed what Wayne said about reversing 1 stage. She said it’s definitely possible for me to reverse stage 3 fibrosis to stage 2 if I continue eating the way I am and avoiding the things I shouldn’t eat. She thinks it unlikely that I could reverse 2 stages, but to reverse one and prolong progression would be wonderful. So I think we can both do it if we stay focused on eating in a healthy way! Good luck to you. It was nice to hear from you and nice to hear that I helped give you hope!
I am with you in trying to learn new ways of life. I've gone from f2 to f2.
A recent fibroscan shows more stiffness.
I dont feel I know how to start healing!
Common sense, no sugar. I focus a lot on that and it seems impossible to escape it. I still need to learn how to cook again and make correct choices. And follow through! In my head i can picture what to eat, but it's different in reality.
Hi Cats,
I am exactly the same even down to having Barrettes O. I have changed my diet for the last seven months and lost a stone in weight. I am now exercising more too. I am a 61 old female.
I have just joined the site and I’m finding it very encouraging hearing from people who have gone through the same thing. I have always been relatively healthy apart from the last four years when I had my gall bladder removed, then 2 years later diagnosed with Barrettes then a year later non alcoholic liver disease to finally now being told I have fibrosis. I had a fibroscan and the reading came back at 9.9. The liver specialist wants me to be referred to a blood specialist now due to high blood readings.
It sounds like our health has followed somewhat the same path - except I so far still have my gallbladder. However I’m having discomfort that I thought was caused by the liver but my hepatologist thinks it’s the gallbladder instead. She wants me to talk to my gastroenterologist about it. You are younger than I am. 😊
I’m waiting for results of my latest blood tests and hoping once again that enzymes and A1c for blood sugar continue to improve. When you mention a blood specialist, do you mean for blood pressure? Good luck to you too. I’m much more hopeful since finding this site and being able to compare what’s going on with others like you, Catbunny1987, and nash2 (Wayne).
I just followed you & found your post on another community (British Liver) and read your original post. So now I’m thinking you weren’t referring to blood pressure. I think you said you are from Australia?
I’m not familiar with the term blood specialist, but it sounds like your concern was the readings as a result of your blood tests. I live in Arizona in the U S. Are you seeing a hepatologist who specializes in liver disease?
Please keep me updated on how you are doing.
Char (Cats2018)
Hi Char,
I am from England and I’m currently seeing a gastroenterologist who specialise in liver diseases. When I had my blood taken for testing I was found to have high Haemoglobin, high red blood count, high Haematocrit. Very high Alkaline phosphatase level, blood and high Alanine aminotransferase level, therefore he said he was going to ask my doctor to refer me to see a hepatologist.
My blood pressure is all over the place it can be low at the top and high at the bottom and changing the more I lose weight.
My liver enzymes were all high too when I was diagnosed. I’m participating in a clinical trial that my hepatologist suggested, so I go into her clinic monthly for blood tests required by the clinical trial sponsor. I changed my diet as soon as I was diagnosed in early May, and my enzymes have improved each month with the change in diet.
I’ve also lost weight (20# so far) and that has been helpful I’m sure. My blood pressure usually improves with weight loss too, so I’m hoping to reduce the dose and amount of prescription meds for the blood pressure as I lose. I know weight loss improves the blood sugar too. My A1c has already improved with weight loss and change in eating.
I wasn’t a big drinker either and after the Barrett’s diagnosis in June 2017 I reduced it to maybe 1 or 2 glasses of wine if we went out to dinner every 2 weeks or so. But as soon as I got the NASH diagnosis I stopped all alcohol immediately.
I’m happy to have connected with you on this site. You must have joined this site as well as the British Liver site to have found my post?
Char
All sounds very positive Char, I would be interested in hearing more about your diet. I’m pleased we have found each other and look forward to reading how well we both do 😉
My hepatologist told me eliminate all alcohol, sugar, high fructose corn syrup, and processed grains, white flour, white rice and concentrate on more vegetables, lean meats or vegetarian sources of protein. She didn’t recommend a specific diet. I found most of my information on this site ‘living with fatty liver and nash’ here on HealthUnlocked. But then Wayne (nash2) the Administrator of this site, included a link to a recommendation of how to eat with nash. It’s on Fatty Liver Foundation.org. In addition to eliminating alcohol, sugar, high fructose corn syrup, processed foods, it has other suggestions including reducing sodium to 1500mg os salt, & also suggests eliminating red meat.
I haven’t totally eliminated red meat yet (it’s always been my favorite over poultry, pork or fish), but I’ve reduced it. And I use olive oil which isn’t a change for me as I’ve used olive oil for a long time. I’ve increased raw vegetable consumption and eat those & fruits, and walnuts as snacks. I try to use avocados frequently. I also drink whey protein isolate shakes for breakfast quite often. That was recommended at the 1st National NASH Day event that I attended right after my diagnosis. I add some ground flaxseed & a turmeric blend & frequently half a banana to the protein shake. Sometimes I have oatmeal instead & add flax seed to it. I use unsweetened almond milk in my shakes and on oatmeal. I’ve been trying to use lentils and beans more frequently as protein sources. Learning to replace meat dishes with satisfying plant based has been a challenge, mainly because I still need to lose weight. Because of that I’m trying to not use pasta, or much whole grain rice (which I could use if my weight was at a healthy place).
Do you have some suggestions? I’m learning as I go. 😊
Char
Hi Char,
I’ve been eating like that basically lots of fruit and veg, I always use mild olive oil for cooking, I don’t eat white bread and limited brown bread to two slices a day. I am finding my weight loss very slow ☹️ I eat salmon, chicken and a little red meat. Previously I tried cutting out all meat but I felt very tired. Do you have hot sweats? I do, I read that it can be our livers telling us we are eating the wrong thing. 😬 I eat lots of salads too and walnuts and grapes. I try to have one banana a day. Earlier on in the year my vitamin D was really low so I had vitamin D in liquid form.
I find any thing I take I have to take in very low doses because I get every side effect going. The specialist said that was because damaged livers take longer to metabolise any drugs hence the side effect. I’m allergic to aspirin and obviously like you I can take any strong pain killers because of the Barrettes.
I forgot about the water - yes I’ve increased my water intake too! I try to eat salmon at least once a week too. I’ve thought about going to a whole food plant based eating plan for quite a while, but like you, I’ve had trouble eliminating meat entirely. So I’ve reduced the amount of meat, and increased the vegetables.
Yes, I do get the hot sweats! Some days worse than others! I had skin itching prior to the diagnosis too and had no idea why. That’s eased up for the most part since I eliminated sugar and processed foods from my diet.
Your comment about the allergies is interesting because I never used to have problems with allergies to medications but in recent years (probably an early warning to an unhealthy liver) I started having reactions to medications. I took Lisinipril for blood pressure for years and years and suddenly it caused angioedema. It took quite some time for the diagnosis as it looked like TIA or stroke when I went to the emergency. I was switched to Losartan and then had the same reaction. I also break out in hives and itching if given Aleve which was given to me in the emergency dept on one visit. Of course now I’m avoiding all NSAIDS.
I have never read anything about hot sweats and the liver! It is not as bad now but prior to getting sick and being diagnosed with NASH 4 I would be sitting in a chair and break out in a massive sweat to the point that I started carrying a towel with me. Doctors all said it was hormones. I am 64 and went through menopause in 2004 and a hysterectomy in 2014. Has anyone else experience this?
I have been experiencing hot flashes at night. It disrupts my sleep every night. I am 63 and had finished menopause in my forties. So I find this topic really interesting!
I also drink 1.5 to 2 litres of water every day.
Hi Char,
I’ve been to the doctors today after feeling lightheaded, dizzy , hot flushes and not sleeping. My blood pressure has also really dropped to approximately 98/68 ish. He has told me to stop taking BP meds (which were very low due to my sensitivity to meds and stop taking my anxiety meds. I wondered do you take meds? I’ve lost 17lbs now 😊
Oh wow - your blood pressure IS low! Do you monitor your blood pressure so you’ll know if it goes too high after you stop the meds? Why do you have to stop the anxiety meds too? I also have a medication for anxiety and sometimes I take it (or 1/2 a pill) just so I can get some decent sleep at night!
Great job on the weight loss! I imagine the 17 pounds weight loss contributed to your pressure dropping? I’m at a plateau now on the weight loss. I’m fluctuating between 21 pounds & close to 22 pounds loss. I have more to lose though. I have 14 or 15 pounds to lose to get to what I weighed 3 years ago.
Yes, I do take meds (lots more than I’d like to have to take). I’m on blood pressure meds and I’m hypothyroid so I take thyroid meds, a statin for cholesterol, and a med because of being diagnosed with Barrett’s Esophagus last year (I have hiatal hernia and acid reflux which contributed to the Barrett’s). Also have been on Metformin for my blood sugar as it’s had me in the pre-diabetes range. I’m anxious for my appointment with my primary care doctor in a couple weeks to see if she takes me off Metformin because my blood sugar had been dropping each month when I have blood tests and finally with the August 10th blood draw my A1c for blood sugar dropped to 5.9 which is considered NORMAL!!!
I’m anxious for the blood pressure readings to drop enough to be able to decrease my blood pressure medication dose. But I think that might happen after I can start taking walks again. I had foot surgery in July for a bone spur and I can’t wear an enclosed shoe appropriate for walks or hikes yet. Plus I live in Arizona and we still have temps in the 108 degree range so it’s not comfortable to get out and walk!
Thanks for updating me! It’s good to hear from you. 😊
💕 Char
Hi Char,
Thanks for replying, I do monitor my blood pressure, I have to because I only have to know that I’m going to the doctors or the hospital and it shoots through the roof. ☺️ ( white coat syndrome)
That’s why I was taking the anxiety tablets and It was because I was having bad night sweats that he took me off them apparently they are known to make you sweat!
I was very near pre diabetic range too , but I just cut back and tried to lose weight, surely now your reading will have dropped 🙂 my doctor knows I don’t like taking medication for anything.
He had not heard from the specialist and when I told him that signs of fibrosis where evident he looked surprised. I showed him my blood test readings and told him the specialist was concerned about the high haemoglobin reading but the doctor said my readings have always been the same and he want to see just what the specialist has to say in the letter to understand more.
So I go back in one month 😊 I had a good nights sleep last night with no sweats .
It’s nice to hear from you again. I’m glad your sleep is improved without the night sweats. I hope your doctor gets the results from the specialist so that he has all the information regarding your liver. I don’t know about you, but I wish that doctors would take my blood pressure while I’m sitting in a chair with feet on the floor. I think mine is higher in doctors’ offices when they have you sit up on the exam table with feet dangling instead of firmly planted on the floor. (I’m short, so if I’m sitting on the exam table my legs are short and just dangle there. 😞
Yes, as of my last blood tests August 10th, my A1c had gone from pre-diabetes to normal! (5.9). I’m so happy about that.
I don’t like taking so many medications either. I’d like to get off as many of them as possible as I continue weight loss.
I’m having my next appointment for blood tests and a visit with my Hepatologist on Friday. The following Monday I’m having a visit with my Gastroenterologist who sent me for the liver scan last May.
🌺 Char
Hi Char,
How you doing? I’ve just posted an update. As you can see I’ve changed my logo and now using my name 🙂
Hi. Would say welcome to the club but you know, it's a club no one wants to join. I was pretty freaked out over the numbers in the beginning.
My PA I awesome she explained it's not all about reducing the numbers, it's about getting healthy at the number we are at. Then the number will get better. One thing, you will always have NASH. Now to be a healthy, in shape surviver.
Change your diet. No processed food. Lots of vegetables. Exercise!! Walk, walk, walk. Lots of water.
The one med I was prescribed is Lactose. You can Google it and then talk to your dad.
Lastly your numbers will come down. But not fast enough and it will be discouraging but it took awhile for it to get to the point of diagnosis. Be patient get healthy. Don't let the numbers rule you.
One more thing ask for a fibroscan if you haven't had one.
Thanks for your nice reply. you are so right - we are in a club no one really wants to be in. It’s nice to have the emotional support of others who are going through the same thing. Though. I’ve been strict on my diet since my May 9th diagnosis, and that’s working well for me. I’ve lost 27# so far. That’s been enough to bring my A1c from pre-diabetic to normal, and has brought my liver enzymes to normal range. However, as you said, I’ll always have NASH. Having the liver enzymes back to normal doesn’t change the fact that I’m at stage 3 fibrosis. I had surgery on my foot in July so wasn’t getting my usual exercise. I live in Arizona too and we’ve had a long hot summer. The weather is cooling now though and I can finally wear a walking shoe comfortably, so I’ve been taking walks and getting back into hiking. I think that will move my weight loss off the plateau I’m at now.
I did have a fibroscan initially on May 9th which is how I was diagnosed. My hepatologist will be doing another one in the near future. I’m in a clinical trial so the trial sponsor is in charge of when I have tests right now. I had MRI-elastography & a liver biopsy in May as required by the trial sponsor. I had a 2nd MRI elastography in September but I do not get to know the results until the trial ends next June or July. The sponsor doesn’t want me to find out if I’m on the experimental drug rather than placebo so the only results I see are the blood test results.
Hi, you are doing right by skipping alcohol, sugars especially high fructose corn syrup and a lot of red meat and getting exercise. Other supplements/drugs to consider:
Metformin reduces fibrosis as well as increases insulin sensitivity. If you can't stay on it, a supplement alternative is Berberine.
TUDCA improves bile flow and can dissolves some gallstones over time, it is good for liver health as well, reducing cell death.
Sunflower lecithin can supplement choline levels (low choline leads to fatty liver). It is hard to get enough choline if you give up eggs and meats.
NAC is another supplement to consider for liver health, it tastes bad, but it is very good for maintaining glutathione levels, the body's anti-oxidant. Also breaks up mucus making breathing easier for some people. It is used as an antidote for Tylenol poisoning.
High EPA fish oils reduce triglycerides, they are available in stores or as prescription medicine (Vacepa).
Thank you for all of the information about supplements / medications. I had read that Metformin is helpful for liver disease. My primary doctor had already taken me off it when my A1c became normal instead of pre-diabetic. I see her soon for a checkup and I’m going to talk to her about possibly re-starting at least the minimum 500mg dose daily since my fibrosis is stage 3 already. I’m going to check into some of the other supplements. I do take fish oil supplement already.
Hello everyone! Fellow NASH sufferer here. It's good to hear people actually doing something to improve their conditions. Forums like these provide valid information and support for us.
My question is that I see everyone identify their condition as "stage 1 thru 4". Is this based off the METAVIR (F0-F4) measurement? I'm just looking for clarity as I was recently diagnosed with NASH and ultrasound elastography produced a value of 9.9kPa classifying my fibrosis level at F2-F3. (moderate to serve)
My FibroScan indicated 11.7 kPa suggesting F3. The Hepatologist said it would definitely indicate stage 2 or stage 3 & she wanted a liver biopsy as soon as possible. I had the biopsy and it confirmed Fibrosis stage 3. I also had MRI Elastography but I am in a clinical trial and do not get the results of the imaging during the year long clinical trial. I was diagnosed in May 2018 and I didn’t understand any of the methods for determining fibrosis or steatosis at that time and in fact had never heard of NASH. Good luck!
Hi I was diagnosed with fatty liver, fibrosis & cirrohsis, & NASH on Aug. of 2018 and after I have been successful with a LC diet, lost 225 units of insulin and 62 lbs, my Liver Dr's were overjoyed with my success!! She said that she didn't want to see me till next year at which time she will know my diabetes will be reversed which is only about 2 mos away...Also she said my fatty liver, fibrosis, will be reversed and she says that now they can tell me that some of my cirrohsis can be reversed!!!!
Great news happy to here this positive result 👍 gives me strength. Just found out this Friday... my Biopsy confirmed I have NASH stage three. Started my life style change yesterday...🙏🙏🙏🙏
Thank you this is all new to me....looking to feed off all of you courageous and positive friends that want to live on with this life style change....I’m right behind you. Live , Love and be Kind to our selves...... and others. We got this👍 Sending love and blessings to all❤️🙏🙏
my biopsy showed 2 weeks ago I have stage 3 Fibrosis. NASH, I have been in my new way of life since March 12th 2019, lost 81lbs, all my insulin that I was taking 225 units of insulin 5 shots a day....6 other pills I don't take anymore... I am on a low carb diet, allowed only 30 carbs a day...drink nothing but water and black coffee.
It’s great to read that so many people are improving although my NASH is still progressing. One possible reason by one doc is fast weight loss. I lost 60 lbs over nine months. Now having Blood Pressure issues. BMI 21; A1C 5.4; ALT 12-AST 15. I’m told the LFTs mean nothing with NASH.
There is always hope. Just took my fiber scan from 17.8 to 11.4. I was in stage 4. I'm so excited. I'm also down 39 pounds, I believe in hope. I was diagnosed 20 years ago.
Hi! Thanks for asking. I’m doing well in that I’m doing my best to slow progression. Have struggled some with staying as motivated on eating right during this pandemic and with having had my 1st clinical trial end. It took me over a year to be approved for a 2nd clinical trial-which I’m currently participating in. I’m in a phase 3 trial which I’ve been in for 4 months. So I’m back to my monthly appointments for blood tests, EKG, exam, and quarterly MRI series. I just had the MRIs on February 1st, but of course I do not get those results. I do get to see my monthly lab results for the most part and my liver enzymes have dropped to the normal range now.
Hi! Thanks for asking. I’m doing ok. I just finished my 2nd clinical trial Nov 15th (a phase 3 trial), and my CAP score on FibroScan improved a LOT. Unfortunately the fibrosis score didn’t improve - at least not yet. I consented for another year with the sponsor of the trial as they guaranteed I would receive the trial drug for the next year (unlike the last year when I didn’t know if I was getting the drug or the placebo). So I began taking the actual drug on November 15th. It is supposed to pull fat from the liver. I’m happy to know that i”m on the drug now. How are you doing?
Well have had very difficult year, wife of 45 yrs ask me for divorce and we sold our house and my wood shop and split it all, but now after divorce met new woman in new church and remarried. Starting a new low carb diet and need to loose another 100lbs. Glad You are doing better. Ron
Yes I was diagnosed with fatty liver,fibrosis & some cirrhosis . Stage3 and thru instruction and a low carb diet and exercise,I have gotten rid of my fatty litter,lessen my fibrosis to a 2 and lessen my cirrhosis. The low carb diet is the best and now that I have gotten back into Dr since all this covid , I am back to loose 65lbs and be on low carb diet 30 net carbs or 50 whole carbs per day. Write back if you want more info. Ron
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