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!!!

[dtippett]

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.

[9743km]

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?

[cat33]

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.

[9743km]

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!

[tamkat]

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?

[cat33]

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).            

[cat33]

forgot to answer your question about diet. I have to limit my intake of liquids and salt. Minimal amount of any type of food that comes from an animal . Very little pork, beef, chicken, fried foods. Mainly vegetables prefreably raw, Fruit  and Supper whole grain bread. No cheese yougart no frozen dinners, or any type of processed food. I've been good about the diet. Can"t afford to loose weight. Have managed to keep it the same. IN spite of the same ol food. Hope this helps. Ive already been told by a number of Dr.s that diet is very important.  GOOD LUCK. cat33

[9743km]

Thank you so much for your posting.  I looked at my labs and my hemoglobin is normal.  There are 2 hemoglobins that they check.  Both were well in the normal range.  So I don't think that is it.  I was glad to hear that your bili was high for so long, and you are still alive and well!  Boy, this sickness thing is a "pain in the butt".  Trying to figure out how to be the Dr. too.  Good Luck and I'm glad to hear you are doing better.  I was on 40 mg of prednisone at one time, what a pain.  I'm down to 12.5 mg now, but I want to be at 0!!!!!!  Take Care!!!

[9743km]

Thank you so much for your information!  I did do the MELD calculator.  That was great advice.  The eating thing is tough.  I guess I'm just having a hard time coming up w/good recipes.  Do you have a book?  I pretty much am trying to eat like you.  I seem to not be doing as well as you though.  I notice if I don't eat well, I feel horrible.  So that forces me to do better the next day...Just got a book Raw Juices by Sandra Colbot.  I think you would enjoy eat.  She has a section for the liver.  I've done it once, not to bad!  Thanks for your great advice!  Stay Well!!!!!!!!!!

[cat33]

km;     What did your MELD score turn out to be.  Mine was 10 at home. Then I went for blood work again and bili, cre, and INR were all different but the MELD score didn't change.

      I don't have a book . I just eat when every I'm hungry. I cook for my husband but I only eat the vegetables, beans, rice, and lots of nuts for protein. I've never liked peanutbutter but am trying to get used to it. I suppose I could try almondbutter or other nut butters. I go through phases where I eat only certain things then I get tired of them and move on to something else. Right now at 3:00 a.m. I just had some celery and peanut butter and an apple.

[9743km]

My MELD score was 13.  That was w/my bili so high.  I'm hoping when that gets back to normal it will help my MELD score.  I guess I can check it every couple months...Well, your eating sounds like my eating.  Lots of brown rice and vegetables.  BORING!  The raw vegetables may be something you want to look in to.  They say those are a whole other set of nutrients.  You are supposed to drink 17-34 oz/day.  I stick to the 17.  The almond butter is exactly what I eat.  Trying to at least too.   Just basically changing every habit we have, huh?  Celery and peanut butter at 3 AM.  Sounds yummy?  I have trouble sleeping a lot too.  Though I made it til 6 AM today!

[cat33]

What did they tell you about your biopsy. They  told me that with liver damage and a MELD score of 10    should get eveluated for a liver transpant. Thats what I'm dealing with now I believee I mentioned it before. Sometimes I tend to repeat myself . Could be  my age. Or the desiese. They did tell me my brain function will come back after a transplant . But thankfull I'm not close enough Your already ahead of me on the list. May be your bili. will come down. Mine did but my INR went up . Thats why it still turned out to be10 again. I guess I shoud lower my intake of water I drink way more than 34. I will take a look into raw vegetables. I get contradictory information from the Dr.s.My sister tells me I need to enjoy one day at a time. She has lupus. So she understands me.

[9743km]

My Dr. told me w/the type of disease I have, autoimmune hepatitis, he was fully confident that as soon as he got the disease under control, w/the amt of liver damage I have the liver should come back 100%.  Its just trying to get the disease under control and stabalized.  With auto hepatitis he said your getting the liver damage when the ast and alt are elevated.  So as long as he can keep those low he was confident.  That is why he is not worried so much about the bili.  Now he is going to look into it.  He thinks that the one drug I'm on, imuran, is what is causing the problem.  It starts beating up on the red and white blood cells and when that happens a lot of times you get what I'm experiencing.  When they do the testing on the 15th of Nov. they should be able to tell more.  How do you feel about the liver transplant?  Good and bad days?  And your sister is 100% correct, one day at a time.  Enjoy every one of them!

[cat33]

I am so glad to hear your liver will regenerate. I was told mine was to damaged and it would not. I went to one of the best clinics in the country. I'm still in the middle of all the final work ,was supposed to get examaned every two weeks but since we live so far I have to do some of the stuff from here at home. It  has been difficult finding an endocrinologist in this area. The ones I've called can only give me appointments in Feb. or March. So until then I can't be put on the transplant list. As long as I feel well . Thats fine by me. I believe I may have an autoimmune desiese and thats why they are sending me to that particular dr. but they tell me I'm not allowed to take any medication so I really dont understand why another Dr.  I'm not allowed other  medications only the ones I take  for blood pressure and my vitiamins. Not even a Tylenol or Ibuprofen. And I am in alot of artheritis pain. Of course tylenol and ibupofen abuse was probably why my liver went so bad. I'm just so happy you will recover just with a healthy diet and whatever they give you to help along. TAKE CARE - cat33

[9743km]

Well, my Dr. thought mine could, but lately w/my bili going up and things like that, I'm not sure.  I do know someone who has the same auto hepatitis disease as I and she has had a liver transplant.  Actually, she has had 2.  One in her 20's and one in her 30's.  So there are definitely those possibilities.  My Dr. told me a couple months ago that he is surprised how aggressive my disease really is, so that kind of bums me out!  Are they still not sure what you have?  They should be able to find an autoimmune disease quite easily.  I think auto hepatitis is the only auto disease that goes after the liver.  I don't take any medication either.  Little bit of tylenol if I have a splitting headache.  But that is it!!!  You take care!!!

[tumbleweed1999]

Have been reading  your comments and may I suggest another place to get answers on Autoimmune Hepatitis ?? It sounds like that site will be just what you need.  Don't get me wrong, this is a good place to be, also.
  You do understand, don't you, that the "hepatitis" in Autoimmune Hepatitis has nothing to do with the Viral Hepatitis A,B,C,   AIH is not-viral and non-contagious.  It's like our immune system has become cannilbalistic - it turns on itself and starts destroying the good cells.  

As for finding a disease quite easily, that is not the case.  There are too many that resemble each other.  Some don't find the real culprit for years - go thru a lot of mis-diagnosises.  Sorry, but that's the way it is some times.  It took several years before they finally figured mine out this past Aug.
I have AIH with Primary Biliary Cirrohsis Overlap Syndrome, was started on 40mg/Predinsone, am now down to 20mg and waiting to see if I can take the Azathiprine.  I'm also on Ursodial.

So with all that said - (?) check out (and I will spell it out) autoimmunehepatitis dot co dot uk.  Awesome people where some have been living with Autoimmune for years (20 - 30+).  Also has a great article by the "owner" who has had 2 transplants  and is not yet 30.  So o o between the 2 of these maybe you can get ALL the answers that you need.  Good luck, both of you!!
Tmblwd

[9743km]

Thank you for your wonderful comments and for the new website.  Oh yes, I definitely understand what AIH is.  Wish I didn't but I do.  What a bummer it took so long for them to diagnose you.  As soon as I got w/a liver Dr it only took him 1 month.  My total time was 2 months to diagnose.  So Dr's did work fast w/me.  What is ursodial?  I am on the prednisone and imuran.  The imuran (Azathiprine) same thing has worked great for me.  I know a lot of people get sick, etc but it hasn't bothered me much at all.  Well you take care and I hope you are doing well also!  Again, thanks for the website info, I'll be looking at that today!

[tumbleweed1999]

"Urosdiol (aka Actigall) is used to prevent and treat the formation of certain types of  gallstones or liver disease (biliary cirrhosis).  Ursodiol is a bile acid, a substance naturally produced by the body that is stored in the gallbladder." (re: MedlinePlus)

I do a lot of googleing when I need an answer and I trust Mayo, and usually Medicinenet.com.  I expect that once AIHers know that this forum is here we will get more answers and comments on this site.

Glad that you are going to check out the "Brits" -:)  Really good board, as I hope this one will eventually be.

Take care
tmblwd

[cat33]

It took the doctors where I live a year before they finally did a bioposy and found out it was cryptogenic liver desiese  Which they now tell me took years to develope into cirrhosis. So I did my research and decided to go to Mayo Clinic for my first eveluation. It was grueling. An entire week of getting up at 4:30 am to be at different clinics by 5:00 am . Then staying all day going from one appointment  to another ,with hardly time' to breath ,between giving blood,urinating in a cup,  and appointments  till 5:00p.m. I have never seen so many doctors in my life. (and I have white coat syndrome). Any way they were extremely thorough and I found out alot about my health besides  my liver. As I mentioned beforeI have to have another mamogram (mammogram) because they saw something suspicios. Have to get blood work regularly and see and endocyenoloist, She deals with glandular problems diabetis and osteoporosis. Which can all be in the area of autoimmune. But it has been really difficult to get all these things done here. This is not like a second oppinion I"m having this done because they don't do liver transplants here (not that I'd let them try) They just seem like oh well you already had blood done you can waite another 3 months for a mammogram!!!!!!!  And I believe Mayo is trying to save me a few trips.I just wish these people would take this seriously. Maybe I can't waite three months for more blood work. On the other hand I want to be on the list as soon as possible. That way if I really do get seriously ill I can stand a chance.


Let me know anything new: cat33    
                                                                                                                                the list and  thats not going to help with these three or four more step.

[9743km]

Yes, I will let you know if anything knew comes up.  I wish you the best.  The mayo clinic is definitely a good place to be.  You know your getting the best there.  I guess I should feel Blessed that I have a good hospital near me, and Dr's moved so quickly.  The hospital near me is only 1 of 2 in the state that handle liver transplants, so that helps!  You take care and I'll talk to you soon!

[cat33]

Well I went for more blood work today. Ordered by Mayo to a lab here in town. No one here at the lab would tell me what it was for but I asked them to send me result s, after all I am paying. Right. I also wrote the informationion down and came home to the Net. Turns out they were again checking on my liver and kidney functions. Then I went across the street and talked to  my GYN'S nurse practioner about the mammo. She gave me paper work and called in for an appointment next week but asked me to return for a follow up . Follow up for what ? This was a request from Mayo. The GYN  had already checked me Mayo had checked me. What do they want besides money.???  Please excuse my mistakes it's 2:00 am.  Thanks for listening. cat33

[9743km]

Is there someone at the Mayo Clinic, a Dr you were working with, etc that you can call?  And ask them what they are requesting this for?  I will tell you this, they have your best interst at heart so definitely do the test...How are you?

[cat33]

Yes there is the liver transplant coordinator who is assigned to my case. I can call her any time. And believe me I do. They did tell me before I left they do testing every two weeks for various things. So this is routine.They will be keeping track of me through my Dr.s here.And lab work .I believe they said I would have to go in about every 6 months to be seen by them. I also have a case worker (Nurse) assigned to me by my insurance company .I can call her any time as well. She's been very helpfull. And of course my husband who has been there for me at all times. Because when my ammonia level goes up (if I forget to take my medication) I get encepalopathy and my memmory is't worth a hoot. I try not to forget it but sometimes if were traveling I cant take it because it gives me the runs. So when I get back I have to double up to clear my mind. So he's there for me incase I forget to dot an i or cross a t. Just kidding. I'm am doing just fine anytime I tell anyone they can't believe it.

I'm sure the liver test is to make sure it is still functioning to their standards. And kidneys tend to go bad when you have liver broblems and I have had kidney problems in the past.    Let me know how you are. cat33                    

[9743km]

Everything you said, makes complete sense.  I was tested every 2 weeks for various things as well.  Now it has moved to once/month.  So that is all there doing.  That is just part of our everyday life.  Blood tests.  I am doing okay.  I guess I'm just a little concerned about this bilirubin issue, but in a week they'll test me again, and go from there.  I'm just wondering if something more is going wrong.  I guess the waiting is the worst!  I hate that it was going great, and now it has gone the other way.  Frustrating!!!

[cat33]

Have they suggested an eveluation for transplant. Because that would get you listed even if you don't need one for years. It just depends on the progression of the disease and the symptoms. So far mine are minimal symptoms , compared to other people. I just have the encephlepathy if I forget my medication, and some water retention. Which I take a pill for. They just told me to keep my weight at the same level. If there are changes in either direction that could be a problem. That has been hard for me to do since the diet is so bland. I can have some protein on occation. I had a hamburger today it was so good. Tomorrow back to celery ,tomatoes ect................. I know how frustrating it is not to know what's going on . Don't have a clue what the endocrenologist will say .I was told to prepare to visit with her for about 2 hours. And all she has to go on is about 25 pages of labs from the Mayo Clinic you would't believe the mountain of paper work I have from just this past 4 months. How are your eyes looking. any comments  from Dr. about that. Do you have a gallbladder? Your billirubin really goes up when there's a problem with that and some people don't have symptoms other than billirubin going high. Oh well that's life for some of us. Take care. cat33

[9743km]

How are you feeling?  Hope you are doing okay.

[cat33]

I feel great right now. How about you ?

[9743km]

I feel good.  Tomorrow are all my tests.  Not as excited about having it done as I usually am.  I just feel like my numbers and some stuff are not going to be the best.  Which makes me wonder what is going to happen or what is happening?  I guess it is the nature of the beast, huh?

[cat33]

How did your tests go? Of course you wont have answers for a week or so. I got my copy and the kidney part was elevated, Mayo called and said it was fine but they still wanted the mammo results. I told them I had returned the films a week before I went in for the mammo and they couldn't find them. They wanted me to go in for another one. Why? if they can't find the films . I don't know about this lab over here. Went to the endocrinologist on Wednesday got some bad news . I have osteoarthritis, degenerative arthritis and now osteoperosis.She said she had never seen anyone my age with such bone density damage. So now we must proceed with aggressive therepy ,such as intravenous Medications. She was going to find out if my insurance will cover it ,Mayo will approve of it and if they do that type of therepy locally. Otherwise I'll have to travel to mayo and their therepy is once a week. So I'd have to move to Pheonix? Where as the endocrinologist is suggesting an infusion once a year. They do have oral medications but she said they were tough on the stomach and since I had a previous ulser she didn't want to go that way. My bones must be built up before I have surgery because the antirejection such as prednasone break down the bone. I still cant take anything for pain just ice packs. Looking for a spark at the end of this very long tunnel. cat33

[9743km]

Hi there.  Unfortunately, I received news like you.  My bilirubin has not gotton any better.  In fact, it really sky rocketed.  So I have an ultra sound and more blood work on monday.  And then i am meeting w/my Dr on Wednesday.  He should have all the results of blood and ultra sound by then.  He'll go over everything w/me at that time.  I'm Praying its something minor, but I have to be a realist as well.  I felt that at the beginning of this process God would heal me/take care of me, and I'm still believing that He will.  This is the first time in my life I've had to really put my faith to the test, and I won't give up now!!
Sorry to hear about your results.  This is just one long tunnel that seems to not end.  We know there is a light somewhere, it is just getting there...I do know that osteoporosis is a major side effect of prednisone, but what a bummer yours is so agressive.  Intravenous meds, huh?  They say that seems to be the best.  Your insurance has just gotta pay for it.  Let me know what happens.  You take care of yourself and have a great weekend!!!  Next week sounds like we'll both have much news to come!

[cat33]

Your right . We have to hope and pray for positive things to come. I  had a bone density test about 2 or 3 years ago, and it was fine then. The endocrinologist suggested another one , but again at Mayo since the machines are  probably calibrated differently.  I'll be thinking positive thoughts for you on Monday and Wednesdy Keep in touch. cat33

[9743km]

Thanks...I'll update you next week!  You take care!

[9743km]

Well I survived the week!  It has been a long grooling day, but I'm alive.  Anyway, everything went great.  My Dr is 99% sure the imuran is toxifying my liver.  I stopped the medication immediately and have another blood test on monday.  As long as my bilirubin has gone down he is going to find another med for me to begin.  So I will be on prednisone and one another.  He told me the other drug works just as well, but it is more expensive, and you don't take it once a day, you take it twice/day.  So it'll be more of a pain, but I'm alive!!!!!!!!!!!!
Happy Thanksgiving...

[cat33]

Glad your tests went well. Just buy youself a twice daily pill dispenser. They work for me, since one of my meds is taken twice a day, and two others are seperate, one morning one evening. Then I seperate my vitamins and minerals into morning and evening. Not a big deal right now. But if I do get a transplant I will need more dispensers. Canceled my appointment with GYN since it was an unnecessary follow up. Then the morning of my canceled appointment. I got a call from them asking me when I was going to make an appointment for my endomitrosis biopsy. I said "what "no one ever told me I had that and I just got back from Scottsdale where they did a complete physical on me. She said she'd call back . Then she never did. All that time I'm in the middle of a panic  attack. I finally called around closing time. And she said I made a mistake it was someone with the same name. Do you believe that. Then my husband said he had read in the obituaries some woman with my name had passed away. I said she probably never got a call telling her she needed a biopsy because they were to busy calling the wrong people. I think its time to change GYN's.

[9743km]

It definitely sounds like you need a new GYN!!  Oh my gosh, that is funny what your husband said about the lady in the obituaries.  Hilarious!!!!
I hope you had a good thanksgiving.  Have you done any shopping?  How are you feeling?
Since I've been off the imuran I feel like a million bucks...I Pray the imuran has been my problem.  I literally feel fantastic.  I go for blood tests on Monday, and that will tell me if my bilirubin has come down.  My Dr. will decide then on the next step.  I Pray that all I need is a new medication and hopefully it will work even better!

[cat33]

My Thaksgiving was great..My husband and I ate alone . I thought my son and his family would be at her moms place so I did't invite them. My son later called and told me they had'nt gone to her houe till 6: 00 so they could have eaten here. Just Said sorry you know your always welcome here and I almost always haver something cooking. Actually these days two meal diet for my husband one different one for me. Then Saturday we went to my mother-in laws for a family gathering. It was very nice . Since my brother was in the hospital for a rupturet ulcer I was able to visit him. He lost alot of blood and looked very pale but he was ready to go home.

Did some reading on imuran sounds like it has alot of side effects. What will they give you know. Hope your doing well . It sounds like it. I 'm fine too.  Keep in touch. cat33

[9743km]

Glad to hear you had a nice relaxing Holiday w/your husband.  Sometimes just eating alone and being w/each other out of the hustle and bustle is enjoyable!!!  

I go for my blood tests tomorrow AM to see if being off the imuran for a couple of days has helped my bilirubin decrease.  If so, then they will start me on a new medication!  My Dr. told me to call my nurse in the afternoon and he will have the low down for me...If not, I have to have a liver biopsy sometime in the week!

I'll keep you posted....Enjoy your week.

[cat33]

Let me know how the blood work turns out. Hope it's fine. Then you won't have to have another biopsy. You did say you had one before. Right? They really set them up fast I had to waite about 2 months for my first one then after they messed up and wanted to to go back . My husband insisted on another Dr. and to have it done using an ultra sound. Which they were able to do in 1 week. Although the waiting time for results seemed like like forever. Hope you don't need another one. Talk to you later. cat33

[9743km]

Hey there.  All of my test results came back.  They all point to imuran toxifying my body.  They actually think I was having a severe, severe allergic reaction.  Since I've been off of it for a couple days my bilirubin has come down 9 pts.  I am almost to normal level agains.  Thank you Lord.  They are starting me on a new med friday, and hopefully it'll go well.
How are you doing?  I hope well!  Talk to you later!