Hi everybody - so I am completely at a loss to understand how my Fibroscan could be completely normal (100 CAP/6.7 kpa, repeated 3x with the same results) when the biopsy reading from my hepatologist came back from the lab as being Stage 4 Cirrhosis.
The doctor himself is also unsure what to make of this.
All the blood labs for autoimmune issues have been negative, I have never taken alcohol in my life, and with the exception of being mildly overweight 20 years ago, I am in great physical shape.
The only reason I even saw a hepatologist is because during my recent gall bladder operation, the surgeon noted that my liver was all scarred up.
Has anyone heard of such a thing, and could perhaps give me some guidance?
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lakewoodliver
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I had none because there were no symptoms per se and I had no reason to suggest any liver issue. This all came down on me like a ton of bricks six months ago without prior warning, and only through he good fortune of an observant surgeon who caught a glimpse of my liver while removing my gall bladder and bothered to tell me about it.
Since then, I had 3 Fibroscans and a biopsy, with the former indicating no fatty liver diseases and the latter telling me I have Stage 4 Cirrhosis.
I'm scheduled for an MRI next month - the doctor figured a biopsy would be more definitive and was expecting maybe Stage 1 or even not that bad. So no imaging as yet.
I’m really sorry to hear this. What was the reason for the gallbladder removal ? had you been having issues? I assumed if you had they would have done a scan prior to any operation to ascertain if their was a problem with the gallbladder and to see if it was functioning correctly
I had acute pancreatitis caused by an infected gall bladder that jolted me into the ER, at which point they just took out the gall bladder, so it's not like they had the luxury of imaging then. They must have done something preliminarily in the ER like a fast ultrasound, but it seemed at the time from the bloodwork they knew exactly what was going on and just dealt with it. The operation went fine, it's just the aftermath of the surgeon's observations of the liver that set everything else in motion.
This is a very interesting case. It shows that it is too reckless to rely solely on fibroscan results, although it is also obvious that most doctors do just that. Despite the fact that autoimmune hepatitis has been ruled out, perhaps the doctors still have some version of what is happening to you? Usually in such situations it is also necessary to exclude other possible causes such as viral hepatitis, hemochromatosis, alpha-1-antitrypsin deficiency, Wilson's disease. Also among the possible factors of liver damage may be long-term use of any medications or nutritional supplements.
Yes, all of that has been ruled out. Have never been on any medications or nutritional supplements for a prolonged period of time and the blood work for those conditions all came back normal.
Transjugular. I'm wondering whether they should get another sample to look at, using a different method and from a different area of the liver, to compare?
It's difficult to advise anything here. Theoretically, it is possible that the tissue sample for study was taken from a problem area of the liver, and other parts of the liver may be healthier. However, you mentioned that the operating surgeon noticed scarring on the liver when the gallbladder was removed. It is of course best to discuss this with your doctor.
It may make sense to perform a biopsy during laparoscopy. Then they will be able to clearly examine the surface of the liver and take samples for study from areas of interest in the liver of sufficient size. But this is just my layman’s opinion and naturally I miss the financial issues of such a study.
Have you been tested for alpha1 antitrypsin deficiency.? This effects the liver big time. Working in an operating theatre we see lots of healthy v"s unhealthy livers during open and keyhole surgeries in that area. All livers under 20 are very red and smooth, whereas unhealthy livers are paler and lumpy. I have the alpha1 deficiency SZ and liver functions are always abnormal. GTTs are always above 180. due to alpha1.
I think your biopsy should have revealed also possible damage liver factor (but not always can be found). Did you doctor see the full description of it?Unfortunately there is also cryptogenic cirrhosis possibility:
"Cryptogenic cirrhosis is cirrhosis of uncertain etiology that lacks definitive clinical and histological criteria for a specific disease. Although the exact cause of cryptogenic cirrhosis is unknown, correlations suggest that non-alcoholic steatohepatitis (NASH) plays a dominant role."
The pathology report doesn't say anything about that. The Cryptogenic diagnosis is basically when they throw their hands up and say they don't have any idea what's going on. Not too helpful, of course thanks so much for the best wishes. Will update all when I know more.
I see. Sometimes the first signs of liver problem are high vale of INR (blood clotting) or low platelets (below 150 000/µl but sometimes below 200 00/µl). Of course is a long shot and not specific only to liver issue.
I may not be much help here at all but I wanted to share that we are in the exact SAME boat. Everything you said follows what just happened to me. Except for the gallbladder removal part. I had mine removed over 10 years ago. The only reason they found my cirrhosis is because my platelets were very slightly below normal. Like very slightly. If I’m being honest I was the one who pushed for more testing. My doctor told me not to worry about it since I’m healthy and all my bloodwork including all liver functions were 100% normal. From there I saw a hematologist who said again all extra labs he ordered were normal. With slightly lower platelets they were checking for anemia diseases or blood cancers. Again everything normal. I should add I also feel 100% fine. Then he said well let’s do an ultrasound so I can look at your spleen. That’s when they found a liver that looked like cirrhosis and then weeks later I had a liver biopsy that confirmed it. I don’t drink. I don’t smoke. I am slightly overweight. My doctor at the Cleveland clinic told me this happens to 10-15% of people where they see the liver turn and don’t have an explanation for it. My fibro scores show that I have a slight fatty liver but to turn into cirrhosis all the doctors are preplexed. For now I feel great and am being monitored every 6 months with bloodwork. I’m keeping my fingers crossed that my blood work does not turn. I have lost some weight since April when I find out. As I mentioned I don’t drink and never really have. I don’t take medications. Try to remain positive they are doing so much more research on the liver
Have they done a endoscopy on you? How old are you if you don’t mind me asking?
OMG my brother from a different mother! I forgot to add to my original post that I, too, had low platelets and saw a hematologist who performed numerous blood tests and even a bone marrow biopsy that all came back normal. She then just threw her hands up and said there's nothing wrong with you, you're just constitutionally low.
I'm 64 years old and in otherwise great health. I would add to everyone reading this that my hepatologist told me as recently as last week that his concern about the Cirrhosis, as bad as it appears, is far less than for Cancer, and he wants me in an aggressive 6-month MRI regimen. Everyone should know that cancer of the liver risks go up significantly with the fibrosis.
I'm being treated at NYU Langone which like the Cleveland Clinic is a top place. Best doctors in the country and they just don't know. The best they can come up with at this point is that I developed this liver disease 20+ years ago when I was briefly overweight and have been unknowingly suffering from it all this time. But having no fatty liver today suggests to them that the trend should be reversing and it's not.
I am only 42 years old so this news was a tough pill to swallow but I am glad I found out. Now I can be monitored closely. They are doing an ultrasound sound every 6 months on me. Wonder why not an MRI? Anyways I just need to stay hopeful because as of now my liver is fully functioning. My doctor told me there are so many people walking around with liver disease that just don’t know it
He probably wants an MRI to rule out hepatocellular carcinoma. Also in this aspect, periodic monitoring of the level of alpha-fetoprotein in the blood is useful.
its not to do with age .mri is superior to the rest .im 74 and mri detected my small lesion which a biopsy confirmed was cancerous. over the last 4 years ive had them on a regular basis good luck.
Was the lesson suspected because of blood work or only through imaging? It's scary as anything to think something could be happening even between MRI visits that wouldn't get detected by blood tests which I could get done at often as once a month.
i had a high fibrosis reading and often one is more likely to develop cancer.thats the reason they arranged my first mri. now 4 years on they monitor me
Interestingly not that one. Maybe I should ask the doctor about it. What frustrates me most is that he's satisfied with a theory that doesn't seem to make sense to me so it's hard to move him off it and look elsewhere. Know what I mean?
For example, the health incident directly prior to the discovery of the liver damage was an acutely infected gall bladder. It would make a lot more sense to me to theorize that the injured gall bladder caused the scarring but that I never had fatty liver and that's why the Fibroscan is normal.
So in theory, could I have liver scarring from the gall bladder but not actually have liver disease per se, or is scarring the disease regardless of where it came from? Put differently, how important is it to know why the liver is now scarred at this point?
Thanks for all the info, will definitely pursue. I actually changed doctors because the first one could talk about nothing but my impending transplant down the line, while my new doctor says that's way premature.
I mean, wouldn't it be important to rule in or out whether the damaged gall bladder was the cause of the scarring, because at least then it can be considered a one time event with hopefully some room for improvement in the future now that the gall bladder was removed, or does it not even matter at this point? It just seems to me to perfectly explain how I could have no fatty liver and scarring at the same time.
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thanks so much for the best wishes. Will update all when I know more. 
31.6 kpa fibroscan result 
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