I have elevated total bilirubin since Oct 2012. (3.3, 3.9, 4.2, 2.9, 5.0) My last blood test showed the total bilirubin to be 5. I had two biopsy done. The first biopsy was done in August 2011 and was read by differently by two pathologist with different results. The first pathologist reading showed grade 1 inflammation stage 0 fibrosis. The second pathologist reading who viewed those same slides stated that grade 2 of 4, stage 2 of 4 with positive autoimmune markers. My blood work ANA marker came back positive and the rest of the markers came back negative. I had a second biopsy done in Dec 2012 which stated moderate activity grade 3 of 4, stage 2-3 of 4 with no autoimmune features detected. My hepatologist said that bilirubin does not fluctuate with HCV and want me to do another biopsy. She believe there is an autoimmune condition. I do take cholestyramine when the itching becomes serve. I asked her if cholestyramine can lower bilirubin she said no and on another visit said yes. I do not believe I have autoimmune hepatitis as the blood work and biopsy did not show it and refused to do a third biopsy. I also had a ct and mri scan which ruled out any gallstones or billary obstruction. I believe it is just hcv causing the elevation in bilirubin. Does anyone have a similar experience? I am thinking of changing my hepatologist. I live in nyc, does anyone have any recommendations?
Dr. Ira Jacobson has treated some on the forum and comes highly recommended. If I was you, I would get an appointment with him ASAP.
Phone (646) 962-4040
1305 York Avenue
New York, NY 10021
Ira Jacobson, M.D. is Chief of the Division of Gastroenterology and Hepatology, Vincent Astor Distinguished Professor of Medicine, The Joan Sanford I. Weill Medical College of Cornell University, & Attending Physician, NewYork-PresbyterianHospitalCornell Campus. Dr. Jacobson is board certified in internal medicine and gastroenterology, and is a world-renowned expert in Hepatology and Liver Disease. He is the Medical Director for the Center for the Study of Hepatitis C, and is a principal investigator on many important trials involving antiviral therapy for both hepatitis B and C. He has published two textbooks: ERCP and Its Applications, Lippencott and Raven, 1998, and ERCP Diagnostic and Therapeutic Applications, Elsevier,1989. His special interests include hepatology, and endoscopy.
Sorry no one is responding to this. The lab value you indicate does seem rather high. All I can really say is that if you are seeing the same Hepatologist who suggested treatment with Boceprevir after treating for three months and stopping with Telaprevir than I would seek a second opinion. Sometimes it takes a fresh pair of eyes to evaluate a condition and how best to proceed.
Best of luck
Your hepatologist is correct bilirubin does NOT fluctuate with HCV. If that were the case, there wouldn't need antibody or viral load testing of hepatitis C and the millions that are infected would be aware that they are infected.
Do you have other abnormal blood levels?
High Total Bilirubin is a sign of an underlying medical condition.
You didn't mention your direct and indirect bilirubin numbers. It is those numbers that tell the doctor whether your high bilirubin level is liver related or not. There are many causes of high bilirubin levels and you were tested for some.... gallstones or billary obstruction and anemia.
Seek another opinion. You are in a city that has great hepatologists.
Why not post your question to Dr. Schaino (hepatologist) on the Liver Transplant community. He works at The Mount Sinai Medical Center?
"Levels of bilirubin in the blood go up and down in patients with hepatitis C."
I have not had indirect and direct bilirubin tested.
In Oct of 2012, I had abnormal AFP tumor, GGTP, Lipase Serum, HDL Cholesterol, Triglycerides and VLDL elevated. I have not have these test back since.
Currently based on the results of my last lab Total Bilirubin, Alk. Phosphatase, Ast, and Alt are abnormal since October. (Alk Phos. became abnormal since Dec.)
"Levels of bilirubin in the blood go up and down in patients with hepatitis C."
The comment here is related to the Acute Phase of HCV Infection within the first 6 months of being infected when a small percentage of people have symptoms such as nausea, jaundice (high bilirubin) and vomiting. NOT when a person is chronically infected.
'The diagnosis of acute hepatitis C virus (HCV) infection is infrequently made, primarily because more than 70% of patients do not have symptoms associated with the acute infection. Overall, approximately 25% of all patients with acute HCV present with jaundice, and 10 to 20% develop gastrointestinal symptoms (nausea, vomiting, or abdominal pain). As would be expected, among those persons with clinically recognized acute HCV, the reported rates of symptoms are much higher and typically include jaundice, fatigue, flu-like symptoms, and dark urine. On average, when symptoms do occur, they typically manifest 6-8 weeks after exposure (range 5 to 12 weeks) and last for 2 to 12 weeks. In many cases, laboratory abnormalities may provide the initial clue to suggest a diagnosis of acute HCV infection. Rising alanine aminotransferase (ALT) levels are typically observed approximately 40-50 days after infection, although, in one series, the period between post-transfusion HCV infection and ALT elevation had a wide range (6 to 112 days). In large case series involving primarily symptomatic patients, mean peak ALT values have tended to range between 400-1000 IU/L. Overall, ALT levels exceed 1000 U/L in only about 20% of cases of acute hepatitis C. Serum bilirubin levels may also be elevated, but they do not typically exceed 12 mg/dL. During the initial months of infection, ALT levels usually fluctuate, whereas bilirubin levels trend toward normal. Occasionally acute hepatitis C can manifest as a severe illness, but no cases of acute liver failure have been reported in the United States.'
'In patients with chronic hepatitis C, bilirubin levels tend to go up and down. A consistent rise in bilirubin over time for a patient with chronic hepatitis C usually indicates severe liver dysfunction and possibly cirrhosis, or scarring of the liver.'
This is when a person has decompensated cirrhosis and is in need of a liver transplant to continue living. Not in the typical patient with lesser liver disease such as those with stage 0-3.
'The two most common forms of autoimmune liver disease are autoimmune chronic hepatitis and primary biliary cirrhosis. Ninety percent of those with each disorder are women. Autoimmune chronic hepatitis is characterized by very high serum aminotransferase (ALT and AST) levels, whereas primary biliary cirrhosis is associated with predominant elevations of the alkaline phosphatase level, a cholestatic disorder'.
'Alk. Phosphatase, Ast, and Alt are abnormal since October'
This usually means a person is having injury to their liver caused by anything. It could be autoimmune liver disease, hep B, hep C or a dozen other causes of liver disease.
The numbers tell if liver or biliary track/cholestatic liver disease.
It is not unusual for our liver function values to revert to pre-treatment levels or appear in/out of the reference intervals the more time lapses after treatment.
However since you are interested in other possibilities that could be contributing to one value in particular, why not see if there is a decent Gastro that will accept your Medicaid?
As frustrating as this is to say unless you are interested into getting in a trial your treatment options for HCV are temporarily limited given you are a Geno 1a and did not clear the virus with Triple last year. I am not discouraging you from finding a Hepa but I am thinking there has to be a semi-decent Gastro in New York that might be able to make sense of all this in the mean time.
You posted values for Total Bilirubin and indicated you have not had indirect and direct bilirubin tested."
I am reluctant to say this since I have rarely ever seen much come out of analyzing one liver function value not in context with the rest .....but here goes: If you are going to go down this path then knowing Total Bilirubin *and* Direct Bilirubin could be important
Here is the last few paragraphs on a link about how Bilirubin works (the first section gives the mechanics, as it were, which you can read on your own)
".....It is then important to understand the difference between total bilirubin, which has undergone conjugation (that is hepatic cell metabolism), and that portion of bilirubin which has not been metabolized. These two components are called total bilirubin and direct bilirubin.
The direct bilirubin fraction is that portion of bilirubin that has undergone metabolism by the liver. When this fraction is elevated, the cause of elevated bilirubin (hyperbilirubinemia) is usually outside the liver. These types of causes are typically gallstones. This type of abnormality is usually treated with surgery (such as a gallbladder removal or choleycystectomy).
If the direct bilirubin is low, while the total bilirubin is high, this reflects liver cell damage or bile duct damage within the liver itself.
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