I think I have cirrhosis

[Mike2901]

Normal bloods, normal ultrasound and CT but all the symptoms.... don’t know what to do

[mike716]

Fibroscan is unreliable because it is operator-dependent. A few years ago I had fibroscans done at two different places a few days apart: one gave F1 while the other gave F4! I believe that the blood fibrosis tests like Fibrotest are more reliable as they don't depend on human observation.

[flyinlynn]

We only did the Fibroscan Incase my insuranxe wanted a more recent test indicating cirrhosis.

I had had a total of 4 liver biopsies one every five years after I was diagnosed with hep c in 1990. I guess had them in 1993, 1998, 2003, and 2008. With each biopsy my fibrosis score went from F1, to F2, F3, and finally F4 cirrhosis in 2008. I have always heard the liver biopsy while also an imperfect diagnostic tool due to possible sampling error is considered the gold standard of cirrhosis diagnosis.

So unless I have been lied to my multiple doctors I am pretty sure I have cirrhosis.

I added my history in response to mikesimon’s question that as my INR is a normal 1.1 if I was sure I have cirrhosis.

Funny thing is on my MELD score even though an INR of 1.1 is normal range it is the one test result causing my MELD score to be 7 if my INR was lower I would be MELD 6

[flyinlynn]

And for Misty if they won’t do a biopsy she could do a Fibroscan machine test of as you said a fibrosure blood test. From what I have read they are about the same. They are best at estimating cirrhosis and less accurate in mid range damage.

[mike716]

I imagine that you do have cirrhosis, Lynn, since your biopsy series was spaced out and makes sense. As far as biopsy being the "gold standard", though, that's just an old saw. Biopsy was the only liver test available for many years, plus it was thought until recently that HCV spread homogeneously throughout the liver, which has now been shown to be untrue in many cases.

Take a look at the results of my Magnetic Resonance Elastography and FibroTC, in my photos. They show that my liver has (or had) parts that are F4, F3, F2, and F1. Those discrepancies, together with the fact that the usueful part of the sample taken in my one and only biopsy was only 15 mm in length (25mm is now considered the minimum for credible analysis), and you can see possible explanations for why all my tests gave such differing results. There is simply no one reliable test, and biopsy is as uncertain as all the rest, unfortunately.

[flyinlynn]

I’ve never had an MRI so far just liver biopsies, ultrasounds, Fibroscan and upper and lower endoscopies

Maybe I’ll ask my doctor about that it does seem like I am a little healthier than possibly I should be and for that I am grateful. Maybe I'll ask my doc about an MRI

Best of luck to you ;-)

[MistyDW]

They ended up not even doing the biopsy because my platelet count was too low.  Looking at other options now.

[flyinlynn]

How about a Fibroscan test? Similar to an ultrasound and not invasive like a liver biopsy?

Or there is also a blood test calkeda fibrosure that can also determine fibrosis levels.

Really many doctors seem to be moving away from liver biopsies to less invasive methods.

[MistyDW]

I have had varices and ascites but all my liver function tests and ultrasounds are coming back normal, so I know the feeling.  I'm finally going in tomorrow for a biopsy.  Some of the symptoms you mentioned are not symbolic of cirrhosis (to my knowledge).  I'm assuming you have a GI doc, so I'd suggest speaking to them about a diagnoses and possible biopsy.

For those with cirrhosis, I've managed to significantly reduce the size of my varices and keep ascites under control with a low-sodium/sugar diet including no red meat, deep fried food, or any food heavy in fat.  I also limit my animal proteins per day (but I still do eat meat daily).  I've got some recipes and advise on midliverrevelations.com if you want to check it out.  Feel free to contact me if you need a Cirrhosis buddy to talk to.

[Mike2901]

Thanks for your input and comments! Let me know how your liver biopsy goes! I hope it turns out ok for you! I’m still doing tests but they seem reluctant to do a biopsy with me.... btw did you have your INR time measured? If so, what was the score?

[flyinlynn]

Hi Mike what is your INR? Mine is 1.1

I have had cirrhosis since Jan 2008

I expect they are reluctant to perform an invasive test like a liver biopsy when they believe the test is not medically warranted.

I had 4 liver biopsies every five years  during my many years of hep c infection. With each biopsy my fibrosis increased from F1 in 1993, to F2 in 1998, to F3 in 2003, and finally on my last biopsy in Jan 2008 F4 liver cirrhosis.

[mikesimon]

Are you sure you currently are cirrhotic Flyinlynn?
An INR of 1.1 is normal and I have seen a lot of people improve their liver architecture after clearing the virus - even cirrhotics. Do your blood tests suggest cirrhosis?  I'm just thinking out loud but with an INR like yours it makes me wonder.

[flyinlynn]

I was diagnosed with cirrhosis with liver biopsy in January 1990.

My liver ultrasounds show a coarsened echotexture consistent with liver cirrhosis.

I have scant ascities visible on ultrasound as well as pitting edema since 2008.

I have had grade three esophageal varicies that required banding (four sessions) back in 2012 which implies portal hypertension as well as a platelet count before I treated and cured my hep c about 80 to 90 range. Now 3 years post it is improved to about 110.

Fibroscan year result of 27 before my final treatment of24 weeks of Harvoni and ribavirin. One year post cure my Fibroscan was 33

So yeah pretty sure I have had cirrhosis for 10.5 years or so

[flyinlynn]

But even with all that my INR has been steady at 1.1 this entire time.

Also my hepatologist at University of Washington liver department in Seattle seems to believe along with my prior gastroenterologist I have liver cirrhosis basically borderline between compensated and decompensated (basically because of my scant ascities otherwise I guess I would be Stage two cirrhosis and considered compensated)

[flyinlynn]

Brest development in males is a symptom of very late Stage Liver Disease which would be niticubkd in many other tests prior to this symptom occurring. Mildly elevated temperatures or low grade fever is not a symptom of liver disease.

Reddish face is not a symptom of liver disease. Low energy could be many things.

Liver pain is not common in cirrhosis as the liver has no pain sensing nerve receptors.

I have had cirrhosis for over 10 years and have no liver pain or any of the other symptoms you have listed.

See your doctor and discuss your symptoms but I sincerely doubt the cause of your symptoms are liver related.

Do you possibly have OCD or anxiety? If so I would see your counselor.

[flyinlynn]

“which would be niticubkd”

Should be “noticeable”

[flyinlynn]

Why do you think you have cirrhosis? What symptoms do you have?

For most people it takes decades of  doing things that can damage your liver like drinking too much or being infected with hepatitis C for decades that can insime cases lead to cirrhosis.

I have had cirrhosis for 10.5 years after being infected with hep c for over 37 years.

The only symptoms I have are found with testing. My only test result thst is abnormal is my low platelet count due to portal hypertension caused by liver cirrhosis. My ultrasound says coursened echotexture consistent with existing cirrhosis diagnosis. I also have some mild ascities only detectable withultrasound.

Were I not aware of my diagnosis I would have no idea that anything is wrong.

Discuss your concerns with your doctor but as your test results are normal I doubt you have cirrhosis.

[Mike2901]

Thanks for your answer. I really appreciate the support and explanation. I seems to be developing ‘, ‘breasts’, have an off and on fever, my skin has turned kind of reddish on my face and I have low energy. I am sure mine is not linked to alcohol consumption as I would drink no more than the average social drinker but I think it could be linked to medications. I took a **** loaf of medications last year from antibiotics to benzodiazepines and some other for various health issues that cropped up through the year and suddenly I feel like my liver is screaming out in pain. I also have a dull pain just where my liver is that comes and goes.... I am having an mri the day after tomorrow but am not sure that will show anything that an ultrasound won’t show...,