Since July 1994 I have spent months in Duke, John Hopkins and several other hospitals for pancreatitis and elevated (in the 1000's) liver enzymes. I have had 5-6 ercps and several sphyncterotomis(liver). Since Nov. 97 I have spent 90-95% of the time in the hospital and in extreme pain. Until March (after 4 years of agony)there was no known cause for my illness. In March a gastrologist found that contrary to former test results I now had sludge, silt or something in my liver. Thick bile and a blocked duct. I do not have a gall bladder. It was removed in 95 with a huge growth in it. I am now facing surgery to remove or replace the liver duct and a surgical sphyncterotomy in my liver. About every other hospitalization my amylase and lipase are elevated. My enzymes can fluctuate from normal to well over 3000 in a matter of 24 hours which has stumped the doctors. A doctor who is a close friend of the family was recently looking at some of my lab work and said that something in the labs made him suspicious that I might have hemochromotosis. He mentioned something about transference? He advised me to speak with my doctors about this and asked to be tested. Can you give me any information on this so I can at least ask some intelligent questions of my doctors? Could this cause the duct to become blocked? They have tried to do a balloon procedure to open the duct but it was unsuccessful. Also, can you tell me anything about this surgery. I understand it is not done very often and can be dangerous. I'm concerned about the success of this type of surgery and what the pros and cons are. Thanks.
Hemochromatosis is an inherited disorder in which excessive iron is absorbed from the gastrointestinal tract leading to iron deposition into a number of organs including liver, pancreas, heart, joints and central nervous system. The iron will cause tissue damage and scarring of the organs leading to abnormal organ function. For example, excessive iron in the liver will cause elevated liver tests, jaundice and if untreated will eventually lead to cirrhosis. Iron deposition in the pancreas will cause diabetes mellitus (sugar diabetes). I performed a literature search and was unable to find any reports of hemochromatosis causing the problems that you describe.
I am not certain what data lead to the suspicion of hemochromatosis, but I would like to speculate. The liver is a site of iron storage in all people, even those who do not have hemochromatosis. If liver cells are damaged (in your case as a sequela of a blocked duct), then iron and iron storage protein (ferritin) are released into the blood. If a blood test showed an increased serum ferritin, then a physician might suspect hemochromatosis.
To investigate the possibility of hemochromatosis, physicians order serum iron and transferrin levewls. Transferrin is the protein that binds iron in the blood. IF the transferrin level is normal and the serum iron is high (meaning that almost all the binding sites for iron are filled), then hemochromatosis is suggested. It is necessary, however, yo perform a liver biopsy to confirm the diagnosis.
This information is presented for educational purposes only. Always consult your personal physician for specific medical questions.
If you want, we would be happy to see you in the Division of Gastroenterology at Henry Ford Hospital, in order to review your records and investigate your symptoms. You can arrange an appointment with Dr. Fogel, one of our experts in the treatment of gastrointestinal disease. He can be reached by calling the Henry Ford Physician Referral Line at (800) 653-6568.
*keywords: cholangitis, hemochromatosis