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High Bilirubin/Normal AST/ALT

Hello.  Looking for anyone who has any answers or who has gone through the same thing.  I am 36 diagnosed w/Auto Hepatitis in March.  I am on 12.5 mg of prednisone and 200 mg of imuran/day.  Anyone on that high a dose of imuran?  Well, finally my numbers for the liver have all gotten to almost normal.  Maybe 5 pts to high, but my bilirubin is 4.0.  Way, way to high.  Dr. thinking it could be due to toxicity being created from imuran.  They are doing blood tests in the middle of Nov.  He doesn't seem to be "overly" concerned, and that drives me crazy.  My bilirubin was normal, and in the last 3 months has been creeping up.  Anyway, anyone been battling autoimmune for a long time.  Any helpful tips??  Any diet tips?  My Dr. seems to think the meds are working just fine, I don't need to be overly concerned w/diet, etc.  I diagree!  Just no alcohol, no smoking, no fried foods he says!!!
39 Responses
Avatar universal
Is your skin turning yellow? Bilirubin is pretty much bile under your skin. You can break it down by sunlight. That is a good and fast way for the bili to go down. As long as your liver functions are maintaining, I would not be too worried about the bilirubin being elevated.
Avatar universal
Thank you for your comments.  I don't feel like my skin is turning yellow, but my skin is a olive/yellow sort of color.  If that makes sense.  So it may be, and I just can't tell.  The whites of my eyes are yellow though.  That drives me nuts.  I find myself constantly looking at them to see if its getting better.  Trying to be my own Dr.  Any idea why the liver function tests would be good, but bili going up?
Avatar universal
I was recently told by a liver specialist that the skin is very hard to judge as far as color goes.  You must go by the whites of your eyes. If they are yellow that is something to be concerened about. As far as liver function if your talking alt ast. Mine were always normal for soo many years . Did't find out I had liver damage till they did a GGT. Then persued with biopsy. The bili is really an imortant factor as well as the creatine level.
Avatar universal
Thank you so much for your input.  My Dr. did do a liver biopsy in March.  I know that there has been some liver damage.  I get blood work done every month, and I went through my papers and did not fine any test for GGT.  I'll have to ask about that.  My creatine level is tested every month, and that is still good.  My next test date is Nov 16th.  Do you have auto hepatitis?  Thanks again for your input!
Avatar universal
I have autoimmune hemolytic anemia.  Have had 7 blood transfusions since March of 07.  Have been on Prednisone since the beginning.  60mg per day is horrible!  Now I am undergoing Rituximab IV treatments and dosing down on my prednisone to 20mg per day.  Hemoglobin number is finally at 12 and billirubin is finally under control.  My billirubin was so high for so long.  My eyes were yellow and still have some yellow.   Point is, get checked for autoimmune hemolytic anemia.  I was checked for hepatitis, came back negative.  What is your hemoglobin number?
Avatar universal
No I don't have hepatits of anykind. I am getting the Hep B vaccine. Had hepatis A as a child. You can check your own MELD score which you can do on the internet . That will tell you how bad off your liver is. Just use you billirubin,creatine,and NRI number. And you will get a result of 6-29 ..     6 being low 29 high. I have cryptogenic liver desiese and am currently udergoing an eveluation for transplant. With all the Dr.s I have been to you think they would have figure it out by now. But as I may have mentioned before my LFT were always normal . By the time I found out I had the desiese it was to late. I never had any symptoms . Well when I was little  I remember being deathly ill for about 2 months and in quartine. Last year I got brain fog thats when the snow ball started to roll, all down hill. I still don't feel sick (not that I want to) But a year ago my eyes did turn yellow  but could't tell by my skin color because I must have skin color like yours. Anyway Wishing you The Best Of Luck because I would't wish this past year on anyone. Eat right and stay healty.

cat33     P.S. I am now looking for a Dr. to check for autoimmuine desieses. Hope I haven't confuse you to much (now that's a symptom).            
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