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Looking for causes for elevated liver enzymes

Posted by caroljeans @caroljeans, Oct 28, 2024

I didn’t see a topic about liver enzymes. For the past two months my liver enzymes are sky high. May of this year they were normal. Doctors can’t seem to find an answer.
But I have Billy Rubin, I am so tired and my urine is very dark

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caroljeans | @caroljeans | Jul 21, 2025
In reply to @joewu "I have exactly same issues as yours and my doctor has no answer for me. I..." + (show)
Profile picture for joewu @joewu

I have exactly same issues as yours and my doctor has no answer for me. I have been dealing with this issue at least 5 years.

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Please asked to go to a specialist and one that only deals with liver. I went to a Gastro and she did a liver biopsy and referred me to her colleague as that’s all he does is liver issues. Unfortunately there aren’t very many around. We seem to think that it has something to do with hereditary as now two of my seven sisters also have it.
My specialist said you could only get answers if you have a liver biopsy. I am on a steroid and another medicine but as soon as my numbers go to normal, and they’re almost there, I can get off my steroid.
I do feel your pain as it took me over a year to get answers.
I live in Iowa but go to Omaha for a specialist. There are two who go to Des Moines, IA also.
Good luck

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caroljeans | @caroljeans | Jul 21, 2025
In reply to @reppil63 "I’m looking for advice on what testing should be done next. I just had an episode..." + (show)
Profile picture for reppil63 @reppil63

I’m looking for advice on what testing should be done next. I just had an episode that started with severe right upper quadrant pain. I do not have a gallbladder and I don’t drink any alcohol. I’ve had this pain before but always subsided within an hour. This time it was over 12 hours till I was able to get relief at hospital. My alt was over 1600 and ast over 1100 and high ferritin level. Within one week they were back to normal with no medical intervention other then pain control. I still have pain but not as bad. I’ve had all sorts of testing done. So far mild fatty liver and positive Ana. I do have an autoimmune disease already. I’m waiting for a fibroscan to be done. Things that were mentioned were either lupus or autoimmune hepatitis. My doctors don’t have any clue other than something acute that happened to my liver. I am stressed out having no answers. Anyone have a similar situation and any testing that could be done to figure out my issue. I’m concerned if I continue to have these episodes it will do damage to my liver.

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Liver biopsy as soon as possible.
My doctor messed around for a year and now I am in stage 2 auto immune hepatitis.

Good luck.

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caroljeans | @caroljeans | Jul 21, 2025
In reply to @reppil63 "I had my fibroscan done. Only shows mild fatty liver. Still no idea why my liver..." + (show)
Profile picture for reppil63 @reppil63

I had my fibroscan done. Only shows mild fatty liver. Still no idea why my liver enzymes went so high. Had more bloodwork done tests done for autoimmune issues. I’m positive antinuclear Ana Crithidia hep 2 Ana and rp11 antibody. No idea if this could be a cause of the liver enzymes. Rheumatologist is no help pcp or gastro have no idea. So I’ve basically decided to just deal with whatever happens.

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No….dont give up. Where are you located. It would be worth to go to my specialist or one of his specialty colleagues.

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reppil63 | @reppil63 | Jul 21, 2025
In reply to @caroljeans "No….dont give up. Where are you located. It would be worth to go to my specialist..." + (show)
Profile picture for caroljeans @caroljeans

No….dont give up. Where are you located. It would be worth to go to my specialist or one of his specialty colleagues.

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I am in Florida. About 1 1/2 hr from Mayo. That will probably be next. Did your numbers go back to normal in their own. Mine were back to normal in about a week with no medication. They were still down with last blood work but I have blood work due this week

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joewu | @joewu | Jul 21, 2025
In reply to @caroljeans "Please asked to go to a specialist and one that only deals with liver. I went..." + (show)
Profile picture for caroljeans @caroljeans

Please asked to go to a specialist and one that only deals with liver. I went to a Gastro and she did a liver biopsy and referred me to her colleague as that’s all he does is liver issues. Unfortunately there aren’t very many around. We seem to think that it has something to do with hereditary as now two of my seven sisters also have it.
My specialist said you could only get answers if you have a liver biopsy. I am on a steroid and another medicine but as soon as my numbers go to normal, and they’re almost there, I can get off my steroid.
I do feel your pain as it took me over a year to get answers.
I live in Iowa but go to Omaha for a specialist. There are two who go to Des Moines, IA also.
Good luck

Jump to this post

⸻

Thank you so much for sharing your experience—it really means a lot. I’m so glad you were finally able to get some answers, even though it took over a year. That gives me hope. I’ve been considering seeing a specialist too, especially one who focuses solely on liver issues. It’s helpful to know that a biopsy gave you real answers—that might be something I need to pursue as well.

It’s interesting (and a little concerning) that it might be hereditary in your case. I really appreciate you mentioning that too, because I’ve been wondering the same for myself.

Wishing you continued healing and that you’ll be off the steroid soon. Thank you again for your kind message and support!

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joewu | @joewu | Jul 21, 2025
In reply to @caroljeans "Please asked to go to a specialist and one that only deals with liver. I went..." + (show)
Profile picture for caroljeans @caroljeans

Please asked to go to a specialist and one that only deals with liver. I went to a Gastro and she did a liver biopsy and referred me to her colleague as that’s all he does is liver issues. Unfortunately there aren’t very many around. We seem to think that it has something to do with hereditary as now two of my seven sisters also have it.
My specialist said you could only get answers if you have a liver biopsy. I am on a steroid and another medicine but as soon as my numbers go to normal, and they’re almost there, I can get off my steroid.
I do feel your pain as it took me over a year to get answers.
I live in Iowa but go to Omaha for a specialist. There are two who go to Des Moines, IA also.
Good luck

Jump to this post

I’ve actually been seeing a liver specialist for a year or two now as well. I have ultrasounds and bloodwork done every 3 to 6 months. My liver enzymes went back to normal around January this year, but unfortunately, they started going up again in April, and my most recent bloodwork from two weeks ago showed even higher numbers.

My iron has been high too, which I know can sometimes be related. It’s definitely frustrating not having clear answers yet.

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ferrer2024 | @ferrer2024 | Jan 7 2:50pm
In reply to @caroljeans "Try to go to a specialist and do a liver biopsy. I have autoimmune hepatitis stage..." + (show)
Profile picture for caroljeans @caroljeans

Try to go to a specialist and do a liver biopsy. I have autoimmune hepatitis stage two. I’m on two medicines and my numbers have drastically been reduced. Also, check your electrolytes as mine were way wacky, and I am now supplementing every day.
Good luck and reach out anytime

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@caroljeans hi Carol. What is your treatment for autoimmune hepatitis? I was diagnosed with that to

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roughanne | @roughanne | Feb 22 5:14pm
In reply to @suerte "High liver enzymes is a sign of PSC. There are tests/procedures to determine if you have..." + (show)
Profile picture for suerte @suerte

High liver enzymes is a sign of PSC. There are tests/procedures to determine if you have PSC. A competent GI doctor should be able to do the required tests.

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@suerte hi I also have been diagnosed with elevated liver enzymes also have NAFL can I ask what do you mean by PSC and its relevance to liver enzymes

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suerte | @suerte | Feb 22 7:28pm
In reply to @roughanne "@suerte hi I also have been diagnosed with elevated liver enzymes also have NAFL can I..." + (show)
Profile picture for roughanne @roughanne

@suerte hi I also have been diagnosed with elevated liver enzymes also have NAFL can I ask what do you mean by PSC and its relevance to liver enzymes

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@roughanne PSC is Primary Sclerosing Cholangitis. With PSC your liver enzyme levels will be elevated. The enzymes are alkaline phosphatase (ALP) and gamma-glutamyl transferase (GGT).
Here is the link to information from Mayo.
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797

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tisme | @tisme | Feb 23 4:08am

Cut out sugars as much as possible, watch your carb intake, up the amount of water , use a detox diet. I did and brought my liver issues under control and lost 30 kg , (didnt happen overnight but it did happen )

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