Cirrhosis or not cirrhosis - Living with Fatty...

Living with Fatty Liver and NASH

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Cirrhosis or not cirrhosis

livermess profile image
10 Replies

Ok I have a question. I had a fibroscan that showed cirrhosis 300/15. However have no symptoms. The firbroscan was done as part of a study for fatty liver.

So I make an appointment to see the head of the liver institute who is a heptologist. I have lost 32 lbs in the last 3 months and it had been a month since the fibroscan. In that month I stopped drinking any alcohol and started eating clean and working out. I am about 25 lbs from my college athlete days.

She says after seeing me she doesn’t feel like the fibroscan was done properly. She does a full lab work up and everything looks great. Then she does an ultrasound. Comes back everything normal with spleen, kidneys, gallbladder, arterial vein and vena cava and pancrease. No fluid in abdomen. It says liver is normal with some diffuse echogenicity.

She says with my labs and ultrasound it looks like fatty liver but she wants to do another fibroscan to rule out cirrhosis in 6 months!!!

Wouldn’t the ultrasound show my liver wasn’t normal if I had cirrhosis? Wouldn’t something in 1 of the lab tests or ultrasound point to cirrhosis if I had it? And if she is not sure, why not do a fibroscan now?

I would like to either know I have it or ruled out. Anyone else have all these normal test to find out you have cirrhosis?

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livermess
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10 Replies
Worrysome1 profile image
Worrysome1

Would demand it to be done now, or pay for one. I’m in similar position. Why do LFTs and US if they’re not reliable? If you’ve no symptoms, you’re lucky.

Hnybny33 profile image
Hnybny33

Hello livermess unfortunately it is my understanding that a biopsy is needed to confirm Cirrhosis. I was diagnosed 6 years ago. My lab work always went up and down and when elevated the doctor would take me off the Lipitor and Metformin until lab showed normal. This went on for years until I was in horrible pain in Liver. I participated in a Clinical trial for portal hypertension. The meds worked and brought my numbers down but knocked me out of opportunity for another trial to reverse fibrous. Doctor says my liver 100% scared. I have NASH, NAFLD, Portal Hypertension and Hepatic Encephalopathy. I had numerous lesions in Liver2 years ago and 6 months later none were seen until this recent MRI which showed numerous lesions in different places then before. My health is declining rapidly I will include you in my Prayers and Wish You Much Luck.

Kdrc36 profile image
Kdrc36

I had a fiber scan that said I had early stage cirrhosis. Had follow up MRE, MRI, and ultrasound. All said my liver was fine, no cirrhosis and no scarring. Fiber scans can be wrong. I’d ask for an MRE, next best test besides a biopsy, which also can have its problems and has to many risks. Personally wouldn’t do a fiber scan again.

livermess profile image
livermess in reply to Kdrc36

Thanks. I’ll look into the mre

Newdeck profile image
Newdeck

I had normal blood work after a scan 265/15.5 . My ultrasound wasn’t that bad either, but had biopsies (4 samples) and it showed cirrhosis. I still have no symptoms.

KenaiAurora profile image
KenaiAurora

Livermess, I know you want answers and you want them NOW! We all do. I can tell you that your treatment is going to be the same: continue weight loss, excercise and diet, avoid alcohol. They don’t repeat labs and other tests every month. The changes that come with NASH take years to build up and take a while to resolve. Try to relax your mind, because stress isn’t good for you. If you are doing all you can do to help yourself, try to be patient and get your tests repeated when the doc thinks it’s indicated. Remember that insurance won’t allow docs to order tests more often than medically indicated. Give your doc your concerns and let the doc lead. Believe me, I am impatient too. I feel your frustration and I’m talking to myself as much as I am you! Take care.

Margolia profile image
Margolia in reply to KenaiAurora

The worse advice ever - let your doctor lead. NEVER. They already have their own cemeteries, so some of them do not really care. When i read ratings of my hepatoligist, there was a lady cursing her fir not helping her sister at all. Eventually, after pushing the doctor to include her in the transplantation list, the doctor gave up and included but it was too late. DO NOT trust your health 100% to the doctors, they make mistakes that can cost you your life. Check and re check whatever they tell you, go for second opinions, do not sit still, do your research. The doctor who made the mistake will not cry if you die and forget about it. The worst thing to do is sit and pray that your doctor is not making a mistake in your case. I am speaking based on my own experience - I had two incorrect diagnoses that almost caused me a life if I was not pushy enough. Do not be afraid of what they think about you being pushy, you have the right to be pushy if you are not satisfied with info they give to you and you have the right to know what is going on and fight for your life. Good luck.

Worrysome1 profile image
Worrysome1 in reply to Margolia

You are correct. In spite of good test results I know my own body. I’ve read enough on here that the tests can miss cirrhosis. I thought that a Fibroscan would be conclusive and yet reports on here say they can sometimes not be. My Gastro appointment was cancelled last night but I will pay for a private appointment with a liver specialist. My GP has never seen me face to face, how can they dismiss anything without seeing you? I was described on here as a “self centred, selfish, stupid woman” another member described me as insulting the medical profession and the genuine sufferers of liver disease. My anxiety has possibly led me to hijack someone’s post when I recognised the person whom I needed to ask a question to popped up. I can’t private message and would probably not put anything on here for everyone to witness unless I thought I was being helpful, if I could sort the technology out. But, yes, I know that feeling sleepy and detached, severe change of bowel habit and taste of chemicals in mouth is not me. I will find out what is wrong and nobody will shame me into losing my life if it can be prevented. Glad you saved yours.

KenaiAurora profile image
KenaiAurora in reply to KenaiAurora

A month’s time isn’t enough time for a reversal, and Cirrhosis doesn’t reverse, supposedly. I agree with her that it may have been a false positive. But let’s say it’s not. With your labs improving and your weight loss she feels you are motivated to do all you can do for yourself. So if she doesn’t recheck your ultrasound for 6 months what have you lost in managing your disease? Do you have any of the symptoms of cirrhosis? This is why I suggested you let her lead in this case. She sees your progress. You are doing all that can be done. Ordering expensive tests more often than the body can change doesn’t help anyone and drives the overall cost of medical care up. If you begin having symptoms of cirrhosis she has an evidence based indication to repeat the test or to do a biopsy.Best wishes!

Troutwhisperer profile image
Troutwhisperer

It is frustrating if you aren’t sure if your fibrosis has progressed to cirrhosis. I too am also like you not sure. Just had my first ever Fibroscan. Which suggests minimal fibrosis and minimal scarring (F0-F1). However, my Liverfast test from earlier in January suggests advanced fibrosis (F3). The problem may be in part that these two tests, which are both respected, are two very different types of test. One is a blood test and the other is a tissue test. I’ve also had ultrasound tests that state my liver has a smooth surface, which is a good thing. It is great when all of our tests together point to the same conclusion. However, in your case and my case it hasn’t worked out that way.

The more I read I see we are not alone with this situation. I believe “Nash 2” is correct when he said in his post that I need further “analysis”. I didn’t know that every patient who has liver disease needs to see a hepatologist. Unbelievably I’ve NEVER been told that. Unbelievable because I have been a fatty liver and NASH patient since 1986.

I feel your pain. Hang in there! You will get to the bottom of the matter. I understand you feel you have had enough tests that the answer to your question already exists in your medical record. I would have to ask your doctor why not a Fibroscan now. Actually I would also ask for the Liverfast blood test which uses ten bio markers put into an algorithm to produce your “3 scores”. Best wishes for you as you continue on your journey.

Sincerely,

Troutwhisperer

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