Liver Issues 10x's normal Bilirubin levels

My then 15 year old daughter started complaining of upset stomach back September 08  and it continued for a few weeks. After the upset stomach about two weeks later she started vomitting in the middle of the night for almost 2 weeks straight. This eventually cleared up but in October 08 she became ill, we thought it was the flu but no one else was sick and she is never ever sick herself. She had right upper quad pain, upset stomach, vomitting, very dark urine and then a rash appeared on her abdomen, arms and legs. I took her in to the doctor and found her bilirubin levels were 10x's the norm. We had teased her previously in September because she seemed to gain weight overnight especially her abdomen. At the height of her being sick the symptoms were: Weight Gain, Head pain, rash, sinus issues, loss of appetite, vomitting, nausea, extreme fatigue, leg swelling, jaundice (whites of eyes) and severe itching, lastly she lost her menstrual cycle. By December her levels of bilirubin were normal and medication was never given and only blood tests had been run on her for treatment. The doctor assumed that it was a virus since her body healed itself but the RUQ pain, fatigue, head pain, loss of menstrual cycle still remained. Her physician suggested she see her pediatrician for  RUQ, Allergist for head pain and Gyno for menstrual. I took her for a second opinion..last week they did an abdomen/pelvic ultrasound and tested for antitrypsin all tests were normal. This week her urine is dark again, the RUQ there, loss of menstrual, head pain and the rash has reappeared on her leg only also her fatigue has greatly increased.  I am at a loss and the doctors keep asking me why I think it is liver issues since the tests are normal!

[Kevin Pho, MD]

I agree with the testing done thus far.

An elevated bilirubin level can be caused by a blockage in the biliary ducts.  I agree with an ultrasound, which can measure any dilation a blockage can cause.

Another test to consider would be an MRCP, which can image the ducts.  

With the association of itching, you can consider primary biliary cirrhosis, which can be associated with autoimmune disorders.  If this is suspected, a liver biopsy would be the next step to be discussed.

I would consult the services of a pediatric gastroenterologist to discuss these possibilities and diagnostic options.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin Pho, M.D.
www.kevinmd.com
www.twitter.com/kevinmd

[lucbre8]

FYI - the urine is getting lighter in color today..so 3 days it was very dark again and 4th day lighter...I took her in for blood tests this morning...hoping her levels are elevated so the Doctor can see I am not crazy.