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Living with Fatty Liver and NASH

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Fatty Liver and Bilirubin Fluctuation? Confused.

SerenityFirefly profile image
4 Replies

Hello, everyone! I do not have an official diagnosis as no one knows for sure whether my condition was alcohol related or not as, although I did drink more than I probably should have, my mother also had gallbladder issues (hers was removed) and fatty liver and she isn’t a drinker. This is a long intro, so thank you in advance for reading

In March, I had lost a lot of weight because I had entirely stopped eating…not on purpose. I just couldn’t eat. I was tired, dizzy, and vomiting. I ended up jaundiced and my blood tests showed my bilirubin over 13 and everything else was also very high. Ferritin was through the roof. I entirely stopped drinking just in case and I started eating anything I could manage to make myself eat. My blood tests started looking much better.

My first ultrasound in April showed a non-threatening “polyp” (I forget what it was called) in my gallbladder and fatty liver infiltration and an enlarged liver (18 cm). Blood work was rapidly improving and in July, everything including bilirubin was within range but my platelets had dropped significantly, so I had another more advanced ultrasound in August to check again for signs of cirrhosis. That one still showed fatty liver, but the inflammation had decreased to 15.7 cm, and I still had an unchanged polyp in my gallbladder and gallstones. My spleen, kidneys, and pancreas were fine. Smooth liver border, normal blood flow, etc…and the GI said there was no indication of cirrhosis.

My last blood test was done the day before that u/s and it showed an increase in bilirubin to just slightly above normal range (1.7) while absolutely everything else including platelets had returned to normal (I have not had ferritin re-checked, though). I hadn’t drank from March to August (and I still haven’t), so I don’t understand what would have caused that to suddenly increase as it had been steadily decreasing for months as my inflammation also decreased. I’m afraid that things are getting worse despite my efforts and even though the u/s and most of the blood tests would have me think it was ok.

Any ideas? Does fatty liver make bilirubin fluctuate? Are there other factors that would cause that?

The doctor didn’t seem to be concerned, but I’m panicking about it and I don’t have a follow up until the 17th. Sorry so long, and thank you again for reading. Any insight is appreciated.

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SerenityFirefly
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nash2 profile image
nash2Partner

A test you need to have is for your liver stiffness. It is excellent that you have smooth liver margins so that is an indication that you don't have cirrhosis, however the path to cirrhosis is NASH which causes scarring and doesn't show up on ultrasound. Fibroscan is the cheapest but MRE looks at the whole liver. Managing your inflammation can control it but it can cause the kinds of things that are troubling you and getting an accurate diagnosis can help you understand your situation and help guide you. Many people are able to stop it with lifestyle so it is a concern that you need an answer to. There is a calculator that is just a guide but provides a probability of whether you have NASH. It is called Fib-4

fattyliverfoundation.org/fi...

SerenityFirefly profile image
SerenityFirefly in reply to nash2

Thank you. The result from the calculator was a low number which I suppose is good, but I am going to ask about getting further image tests.

TNWONDER profile image
TNWONDER

If your ferritin is "through the roof" then I urge you to insist on getting a genetic test to see if you carry the C282Y gene for hemochromatosis (iron overload disorder). My ferritin was 660 and thankfully my doc immediately recommended that I test for this. Lo and behold I have it. Unchecked iron overload can create big problems especially with the liver. It's easily treated via Phlebotomy (blood donation). Today my ferritin is at a normal level and I simply go for a blood donation like 2-3x per year. Good luck

SerenityFirefly profile image
SerenityFirefly in reply to TNWONDER

Thank you for the response. I just looked back and when it was checked in April, ferritin was at 791. I’m surprised the doctor didn’t want to have it checked again. I will definitely ask about having it at my next appointment.

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