After almost a month of waiting to speak with a doctor, I got to see one today. I have received more information from all of you on this forum than from my own doctor. He couldn’t explain to me what the 14.6 kPA meant. I also asked about what 18% meant. I asked if that was the total liver damage or the percentage of the liver not damaged. He didn’t know the answer. The only information he gave me was that he thinks that I might have autoimmune hepatitis and that is causing the cirrhosis I’m really confused since I tested negative for hepatitis. The good thing is he said that he will schedule me for a biopsy to determine if that’s the case. I have no confidence in him, and I’m so glad I have open enrollment next month so I will be changing my health insurance and hopefully I can end up with a doctor that knows about the liver. I’m now worried that it will take longer to get the answers I need. Thank you all for sharing your knowledge.
Autoimmune Hepatitis? Advance cirrhosis - Living with Fatty...
Autoimmune Hepatitis? Advance cirrhosis
Hi Roxanne
It is good that you got a test and it sounds like switching docs is a good idea. To clarify a couple of things for you, hepatitis just means your liver is inflamed. It could have been a virus which you were apparently tested negative for. Another type can be autoimmune, where your immune system over reacts like arthritis. For people with NASH it is called steaohepatitis meaning the cause was too much fat in the liver. Most of us have that version. You kPa of 14.6 is generally considered as the point between stage 3 and stage 4 so a serious concern and I'm glad you are following up with more testing. The 18% you asked about was probably the IQR of the test. It is a measure of how consistent each of the 10 readings they took was. Generally anything under 20% is considered acceptable. Over 20% the test should be done again.
Good luck, Wayne
Hi Roxanne9, definitely agree with you to switch doctors and see a good Hepatologist who can help answer all your questions and care about your health.
I am in the middle of doing that myself. Not because my Hepatologist is not good. On the contrary, one of the best in the country, just doesn’t have the time to get back to me after tests or answer questions. Always do what is best for you.
In today’s age and technology, my feeling is that biopsy’s should not be done to determine liver health. That has always been the gold standard but is so invasive and the margin for error is very high.
I personally think MRE(Magnetic Resonance Elastography) is best because it looks at your whole liver, not just one small section. You get a much better overall picture of liver stiffness and fat.
That is my opinion, please always do what you think is best for you. Best wishes and good health ahead. 🙏.
Thank you. At least with my new insurance I’ll have the ability to get 2nd opinion. The one I have now I don’t have the option. I would like to have a doctor with experience. I’m going to as about the MRE. The doctor told me that the only way to know for sure if I had the Autoimmune Hepatitis was with the biopsy. Since I’ve never had any of the hepatitis, or risky lifestyle, other than a history of fatty liver. I’m hoping to end up with a doctor with more knowledge.
Sounds good. Please make sure you get all the needed blood work to point you in the direction of Autoimmune Hepatitis particularly…Antinuclear antibodies, SMA, and anti-LKM1 characterize most patients with autoimmune hepatitis, and they should be assessed in all candidates for the diagnosis . This is from NIH National Library of Medicine. Best of luck.
Once you change your insurance or just your dr. You should bout scheduling a hepitoligist (a liver dr) if this dr doesn't know those measurements, I 'll look at my sheet and let you know more!!!!
Thank you.
I do believe you should for a new dr and if this is your primary dr, I believe you should also look for liver specialist. Glad Wayne gave you your answers.
This was the Gastroenterologist. He is very young.
I know from personal experience a G.I. dr isn't always have training in a liver to the extent that we need to get the most wide training. Seek Clinical HepatologyDigestive & Liver Disorders. That's what I have done, feel very confident that they are wide versed in all liver disorders, I know & have already answered many questions I have had.
Hi Roxanne9. Just wanted to step in on the biopsy. I'm very glad I had it done AND it wasn't as bad as I expected or read. The worst was the first numbing shot and having to spend the next three hours lying in bed, 1 hour on your right and the rest sitting up. You can get up to go to the bathroom. I had the biopsy because all test said something different. My hepotoligist doesn't request the fiberscan, too many things can cause false readings. The gastroligist was willing to rely on that test alone, so the diagnosis was stage 4 cirrhosis with advanced fatty liver. Biopsy indicated stage 1 fibrosis in zone 3 with mild fatty liver. Find a good doctor that has the same beliefs you do, read up so you know what he is stating and so you can ask intelligent and pertinent questions. Both my doctors said I asked way more questions than most patients. Read everything Wayne offers and in return take his surveys, thanks. Good luck. Deb
Thank you. I’m very appreciative of any advice you guys can give me. I just hope that soon I can provide advice and guidance and hope to new members like myself. Between the time I read my Fibroscan results on my medical APP and joined the forum, I was literally planning my funeral. Making notes for husband regarding our financial accounts and my wishes. I’m so grateful to you all giving me hope and for people that share their diagnosis, symptoms, test results has given me a better idea as to what stage the disease is. Even though, the hospital or doctors have not.
Good morning Roxanne9. I just want to mention that autoimmune hepatitis (AIH) is an Autoimmune disease NOT a hepatitis that you would have tested for. I think it is a stupid name for it. When you mention hepatitis to people (even many medical staff) many don't understand that it is an autoimmune issue not like a needle sharing issue. We now tell people that we have an autoimmune liver disease and don't bother with saying hepatitis.
Also, from what I've been told, biopsy is the way to determine if it is AIH.
Thank you.
Hi Roxanne, it is very frustrating indeed. I’m reading a book called The Autoimmune Answer by Dr. John Bartemus. He breaks down the root causes of autoimmune disease and I think you may find answers there. He will send you the audio book free from his website.
I just had the biopsy on the 31st. I’m now waiting on the results. I’m praying they can have answers for me. I’ve heard that sometimes it’s difficult to diagnose Autoimmune disease. I just ordered the book from Amazon. I just find the answers I need. Thank you.
Update!
I had a telephone appointment with my Gastroenterologist this morning regarding my liver biopsy. The biopsy indicates that I am Stage 3 Fibrosis not stage 4 as the Fibroscan indicated. They also did not find Autoimmune Hepatitis. Although my SMA is 1:320 and positive for ANA they are telling me that sometimes with fibrosis it shows up on the SMA. Has anyone heard of this?
I have lost over 40 lbs in 5 months with intermittent fasting and following the diet I got from this forum. I have never been able to lose this much weight in the past. For that I’m very grateful to you all. I know that I have a long road ahead of me but at least I see that now. Thinking back when I first posted on this forum I was devasted and didn’t think I would live past that week. I will continue working on reducing the fatty liver and hopefully I can reverse most of the fibrosis. Thank you all for your kind word of encouragement and wealth of knowledge.
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