Questions...

[Livingl]

So I have a question about Nash.... if my liver counts stay within the normal range is my liver still getting worse?! They say you cannot cure Nash but what does it mean then if my bloodwork is back to normal.... is my liver still being damaged?!

[Chefpat]

I am curious about the same thing. I believe that the numbers in your bloodwork don’t necessarily show whether your liver is getting worse or not. I was diagnosed 6 months ago and I feel worse than I did when diagnosed but all my bloodwork numbers look great. I am exercising, abstaining from alcohol and pretty much all processed foods which has helped my numbers but I still experience constant RUQ pain. NASH is a wild thing. I hope someone else can give some insight about this because I am curious too.

[nash2 Partner]

A real problem is that so many people take false comfort in blood tests. High ALT/AST are associated with rapid cell death so they are a measure acute damage. Just because they go down does not mean that everything is fine if the inflammatory processes causing the damage continue at a lower level. Like many people, I arrived at a stage 4 diagnosis without ever having an abnormal blood test. If you have changed your lifestyle or cured Hep C as examples so that the problem resolves the damage can be stopped or even reversed to a degree but the key is to stop whatever is causing the inflammation. With NASH diet and exercise are the key tools available.

[Livingl in reply to nash2]

So you nash was caused by your diet? Is you inflammation gone?!

[nash2 Partner in reply to Livingl]

Yes to both questions

[Cats2018]

Nash2 gives great information. My experience was that I only had very slightly elevated liver enzymes when diagnosed with Nash Stage 3 Fibrosis. I immediately changed my way of eating and began to lose weight. Within 2 months of changing my diet my liver enzymes were in normal range and have remained there for over a year. But I was shocked at how advanced the liver disease was when diagnosed and my liver enzymes had only recently elevated slightly at that time.

[Livingl in reply to Cats2018]

I cannot remember all my numbers I know my alt was 133 at its highest... it is now 27.... but I fill like I still cheat maybe to much on what I eat... I dunno I am young I will be 29 this year and was planning to have more children and I fill very scared and full of anxiety of my future!!! And I know my doctor says we are treating it so it’s gonna be better but I am still worried I have lost 46ish pounds and I still have another 50ish to lose I was very over weight.... I fill very anxious a lot!!! 😢 this sight has helped me know others are going threw it with me but I am scared! I have nash stage 2....

[Cats2018 in reply to Livingl]

I understand your being scared. I was very scared too after first diagnosed in May 2018. I’m older and retired, but I did not expect this to be part of my retirement plans. It’s consumed me since the diagnosis. When i was told the biopsy confirmed stage 3 fibrosis I was very upset to have it be that advanced already. As with so many others on here, I’d have liked to have known sooner so that I could’ve made some changes and done something about it before it was so advanced. But on a positive note, and as nash2 has said on here previously, you can reverse some of the damage. When I learned that losing just 10% of your weight could start to reverse some of the fat, and inflammation in the liver and sometimes some of the fibrosis it gave me hope. I lost 33# over several months time because of the changes to my diet. I no longer drink any alcohol at all. I was a social drinker previously. I participated in a year long clinical trial and when that ended in June I had another FibroScan. My FibroScan had improved greatly when compared to the May 2018 initial scan. So it is obvious that changing my diet, not drinking alcohol and losing some weight has made a huge difference. If you have stage 2 and you have lost 46# already and are eating differently you could possibly reverse 1 stage. My FibroScan looks as if I might have actually reversed 1 stage from stage 3 back to stage 2 so that really gives me hope. I know that the liver biopsy would be more accurate at confirming if I’d reversed 1 stage but because I was in a clinical trial, the sponsor of the trial is not sharing the liver biopsy results with me or my doctor.

I know this is long, sorry about that, but I’m telling you my experience to give you hope and possibly make you less scared. I feel more hopeful and less afraid since the improvement in my recent FibroScan and I want you to have that hopeful feeling too! You (we) can do this. 😊❤️

[Livingl in reply to Cats2018]

Thank you for your reply!! I have been so worried I am 28 and I fill just very scared and worried and yeah I am doing what I can I am not perfect with the diet but like I said I have lost a lot of weight and I plan to lose a lot more yet so hopefully it will help reverse a tiny bit of the damage!! Thank you!💞

[kimber3240 in reply to Cats2018]

What stage are you in now? I just found out I am in F3 and I am freaked out! I am 51yrs old and have a daughter in high school to raise please help!

[Livingl in reply to kimber3240]

I am stage f2! And yes it is scary!! And I just found out I am pregnant..... and I have two little girls already and yeah I fill so scared.... and yet I’m also happy about the pregnancy I just hope I can stay healthy......

[NYLassie]

My enzymes have been well within the normal range for over a year. However, I have severe NASH with stage 3 fibrosis. Since my internist first susoected issues with my liver 17 months ago, I have changed my diet and I exercise a lot. My liver is 3.1 cm smaller now than it was a year ago. While NASH does not go away, it can be much improved, and fibrosis can be reversed. I am participating in Intercept's clinical trial of OCA. From my readings, OCA can help with fibrosis, which is my major concern.

[Livingl in reply to NYLassie]

Thank you for your reply I appreciate it!!💞

[Cats2018 in reply to NYLassie]

It sounds like you’re doing great! I’ve heard really good things about OCA. I wanted to get in the current phase of clinical trial for OCA but the trial closed to new participants just before my clinical trial ended so I was not able to apply for that trial. I’m between clinical trials right now, but will probably do another one. My last one lasted a year. Like you I have NASH with stage 3 fibrosis but have also made great improvement with diet and weight loss. It gives hope when our efforts pay off in improvements. 😊