worried

[Addieann]

I got my Fibroscan back.,.. fibrosis stage 4 Cirrhosis…. Not good although I don’t really have symptoms except high liver enzymes. But still not good.. what can I do?? I happened to read 24 months to live…. Having an MRI next week, but I’m so upset over this diagnosis.. I know diet and exercise is important.. can I help this and live longer?? Thanks all..

[Burrinne]

Hello Addieann,

I’ve had Nash for too long and get regular liver function tests. This year I had a new PA tell me I needed a Fibroscan blood work up . It came back F-4 cirrhosis!

It was Christmas and I knew my life was over. I was told I needed to get a elastrography scan to get a more definitive answer. I got that it did not get my results back for toooo long.

When the results came back along with a requested MRI I was told by the radiologist I was F-0 and the MRI showed slightly enlarged liver but no lesions or scaring. And the elastogrsphy showed F-0- to F-1 as well.

No, I’m not a doctor however PLEASE relax and ask for a elastogrsphy and possibly get a MRI or change your lifestyle and lose weight if that is needed . Of my last 5 yearly LFT tests, this year showed slightly increased results and that factored into my age and BMI gave me the what appeared to be life ending news on the Fibroscan test to later find out something quite different.

Hopefully, this may be your case but regardless, please don’t go down the rabbit hole of freaking completely out over that one test. Hopefully your doctor will say the same and offer to get more tests.

Good Luck!!

[Addieann in reply to Burrinne]

Thank you so much, I needed that encouragement!! It all sounds so dismal… I do have an MRI scheduled for this coming Tuesday. Maybe I will have good news too!! I am watching my diet, and losing weight, so I’m hoping for the best!! I just needed some positive things said instead of the negative that I’ve read!! Thanks so much!! Do you eat just fish and chicken, veggies and fruit??

[Kickbackgirl in reply to Addieann]

Hello Addieann!

I was diagnosed F4 in 2020 and now F1! In the start, my appetite had diminished but knew diet was important to getting healthy. I made smoothies in the am with fresh berries w fat free yogurt and protein powder and loads of blueberries! Got fruit n veggie platters and ate between meals-lots of raw fruit and veggies. Turkey, chicken and fish only, no red meat! I had to read what to eat to heal my body and did just that! I still eat healthy but do indulge occasionally! Low or no salts and sugars-give your liver a break! Let me know if I can help you with diet more!

Smile-beth😘

[Addieann in reply to Kickbackgirl]

Thank you so much for your great encouragement!!! I will do exactly this!!! I have two 6 year olds and I want to live. This is what I’ve been eating for only 2 1/2 months, but I will continue hoping I too can heal!! So happy you healed yours…. I’m next!!

[Burrinne in reply to Addieann]

Thank you!

Actually no. I may not be the best to follow…however, I do try to eat fish and vegetables as much as I can. The main thing I have done is portion control. It’s tough! But in doing so I lost about 5 % of my total weight and all of my liver numbers have fallen back in line.

So that’s a huge psychological boost. Ask for your numbers from bloodwork and do a self test called Fib-4. Google that as that is something you can do at home with your lab numbers. That was the first thing I found that contradicted my Fibroscan and gave me hope away from the death sentence and melt down.

I pray and feel you will have encouraging news with your MRI.

Try to relax and eat the right things, walk or exercise if possible and get you a good quality of life…

Hope in some way this helps as during my journey there seems so much seemingly bad news.

Please keep me posted

😀

[Addieann in reply to Burrinne]

A million thanks!!! Tomorrow is the MRI.. hope and prayers!! Thanks again!!

[ToughToes in reply to Burrinne]

I just calculated my Fib-4 score. It was 0.42. That's a good score. Correct?

[Addieann in reply to Burrinne]

Hello, fibroscan showed me at F4. Liver stiffness at 30.8. I think this isn’t great, but I’m willing to do whatever to save what I have. It seems I have PBC and inflammation… maybe they wrote Autoimmune Hepatitis?? It’s very confusing to me. They have me on More Ursodiol and Prednisone. I go back to doc in a week to hear exactly what he thinks. Thanks everyone for thinking of me and your messages!!

[Burrinne in reply to Addieann]

Thank you for the update. Please read everything you can get your hands on and sort through the click bait. There are tons of turnaround stories out there and optimism.

Please keep your faith, do right in your eating and exercise (even just walking) and remember every pound you can lose (if your bmi is out of wack) is another step to a longer life.

Best of luck to you. Try to stay positive and please keep us updated.

[Addieann in reply to Burrinne]

Thank you for encouragement!!

[Kickbackgirl in reply to Addieann]

Hi Addieann, hope you’re doing better! I was reading in your post and noticed you taking prednisone, which is steroids. My doc advised not to take these so maybe double check? All docs aren’t the same in practice and knowledge and sometimes we need to educate ourselves so we don’t rely on them!

Smiles-beth

[Addieann in reply to Kickbackgirl]

Hey!!! Thanks. Yes, the doc put me on steroids about 6 weeks ago, and is tapering me off now. He said my liver has inflammation… I have also read the same about steroids. I’m also on 4 Ursodiol capsules a day. Not sure what to do… I saw him

Last week and he said he’d repeat labs in June. I think

I’ve been diagnosed with autoimmune hepatitis. And PBC. He wasn’t very good at explaining so I’m not sure if I’m getting the right meds or whatever for my cirrhosis. I’m watching my diet and losing weight, but feel like I’m lost in the shuffle… thanks for replying!!

[Addieann in reply to Burrinne]

Can anyone tell me if you take any meds for cirrhosis?? I’m on Ursodiol for now, and tapering off of prednisone in a week or so. What do I do next, besides diet and exercise?? Is there no medication to help heal my cirrhosis?? I’m feeling very worried at the negative response from the hepatologist. Am I just on my own??

[Golendoodle]

I’ve had three Fibroscans all showing something different. The first one said no fibrosis then the other two had me at F2. The doctor had me terrified because of a plain ultrasound I had done she said I think you might have cirrhosis. I then had a ELF test which is bloodwork that came back good so the doctor then said well you may be a 0-1-2 !!! So I’m just saying these test are not always accurate. I’m going to get the one Wayne our moderator had because it seems to be accurate as far as fibrosis . Best of luck

[Addieann in reply to Golendoodle]

Thank you for replying!!!

[Kickbackgirl in reply to Addieann]

Hi Addieann! It’s been some time I’ve heard from you. How are you doing?

[Addieann in reply to Kickbackgirl]

Hey!! Thanks for checking on me!! Some of my liver enzymes have come down. Alkaline Phosphotase still up but is down some. Bilirubin slowly coming down. The doc said my autoimmune was attacking my liver, so I’ve been put on a med called Cellcept for that. They also said I have PBC. I think I take Ursodiol for that. I just had an ultrasound 2 weeks ago. She said I was stable. I’m still worried, because of everything I read, and cirrhosis sounds so negative. The new meds aren’t for us that have cirrhosis. But, I’m still hoping for the best!!! Thanks again!!

[Kickbackgirl in reply to Addieann]

It takes time but sounds like you’re on the right path. Keep the positive thoughts!

[Ilovejoe]

wait for your results for an MRI. Hopefully it’s with elastrography. That will show your score and from what I read it’s very reliable. Keep us posted.

[Addieann in reply to Ilovejoe]

I will!! Thank you!!

[lusitania84]

I don't think i will ever get a fibroscan as the results put forth from this community seem to be just all over the place with no accuracy. That's just my observation. Maybe I'm looking at it wrong....

[Kelleeh]

Get the book by Anthony William Liver rescue at Amazon It's like 20,00 dollars. Worth it

[Addieann in reply to Kelleeh]

I just ordered it!! Thanks for sharing!!

[Shelterdog]

You can do this! I too was at F4 fibrosis in Jan 2022. Now I am at F0 and my liver is normal size. I exercise with a group 3 times a week (age appropriate) and I changed the way I cook food and the things I eat ; lost weight. I used the book “reverse your fatty liver” by Jonathan Mizel and Susan Peters. I had lots of prayers from my church members too.

[Addieann in reply to Shelterdog]

Thank you for your encouragement. I will definitely get the book, but I have been very careful about what I eat for a few months. Just eating only what liver people say. I am a little discouraged, but I will keep on eating carefully. I’m still on Ursodiol and tapering off prednisone for the inflammation, but I don’t think they know what the problem is…. After my MRI 2 weeks ago, I got gout!! This is a mess!!! Thanks so much, I’m hoping for good results like you’ve had.. I’m willing to work hard to get better!!

[Addieann in reply to Addieann]

One other question, is there a sweetener for my tea that is ok for liver?? Thanks!!

[Shelterdog in reply to Addieann]

I use stevia, as I am a type 2 diabetic as well. One of the biggest changes I made was sautéing my vegetables with olive oil and purple onions, instead of cooking them all with bacon, and they are so good that way! I eat lots of veggies, beans, fruits, chicken and fish. Basically no fatty meats and I rarely eat red meat. I eat no bread , no fried foods, no dairy . Basically beat a whole food, plant based diet with chicken and fish. Nothing white-no white potatoes, no white rice. I do eat brown rice and have come to like it, as well as sweet potatoes. No sugar and low carb is the way to go. You can do this!!

[Addieann in reply to Shelterdog]

Thank you so much!!