Hi! I am new to this forum. About a month ago, I went for my annual executive check-up. All the results were normal except for a slightly elevated bilirubin and an ultrasound that said I had a borderline to slightly enlarged liver. I went to a Gastro/Hepa to get more tests. He said my liver was not enlarged and that I just may have Gilbert's syndrome (my bilirubin goes up when I am fasted). He said we can do a simple blood test to check if I do have that or do a whole myriad of tests. I chose the latter. I did all the immune tests (which came out negative), IGG4 incl subset (which also came out negative), HIV and Hepa (all negative as well) and did another LFT (bilirubin was now within normal range because I wasn't fasted when they took the test). My ALP, GGT, etc were all within normal range. However, when the MRI/MRCP came back, they same some narrowing and some cholangitis in multiple ducts. The MRI/MRCP says it may be PSC but the blood tests say otherwise. I have been to several doctors and they all say to monitor every 3 to 6 months. One doc says it is PSC but the other says its not an absolute finding since all my bloodwork came out normal. I have no symptoms whatsoever. The doctors say people normally do bloodwork first then if the results come back abnormal then they go the next step. Since I did all the tests at the same time, they saw this. Has anyone had this experience before?
Hi,
I have had a diagnosis since 1993 of PSC based on ERCP, cholangiogram, biopsy and MRCP; however, all my liver function tests are normal. At one point I had to have a dilatation and temporary stent placed in the Common Bile Duct for a stricture. That corrected the problem and so far it has not returned. I do have trouble with upper right quadrant discomfort/pain and itching even though my liver tests are normal. So yes, my blood work is normal but I have PSC. Under the circumstances, I am considered stable and "lucky" to not have progressed further into the disease. My liver doctor told me that you don't have to have abnormal liver tests to have PSC. Are you seeing a hepatologist? If not, you might want to see one.
Although I do not know for sure, I think the liver/bile ducts can be damaged but not show on all the lab indicators.
Hi Dakota,
Your LFTs have always been normal? Mine fluctuate - sometimes a little high, sometimes completely normal. Do you take any medications that might make them normalize? Has your disease progressed much since diagnosis?
Crewmom
Hi Crewmom,
My LFTs are always normal. I have been taking urso, Pentasa (Crohns) and Bentyl for many years. Now because of the itching I take cholestryamine. My PSC disease has not progressed much in more than 20 years since diagnosis. I have had minimal changes in intrahepatic biliary ducts through the years, and I am beginning to have some varices in the lower third of the esophagus.
When were you diagnosed with PSC?
Dakota
Thanks Dakota.
I was recently diagnosed - about two months ago. Although looking back, my LFTs have been up and down for several years.
What dosage of URSO are you on? And without URSO would your LFTs still be normal? Thanks:)
Crewmom
I take 2 -300 mg capsules twice a day so I take 1200 a day. I have no way of knowing what the effect of Urso is on my LFTs because I have never gone off it since I started taking it. Before I took it, my LFTs were normal.
Dakota
Crewmom said:
Thanks Dakota.
I was recently diagnosed - about two months ago. Although looking back, my LFTs have been up and down for several years.
What dosage of URSO are you on? And without URSO would your LFTs still be normal? Thanks:)
Crewmom
Hi Dakota,
I see. Yes, I am seeing a Hepatologist. Were your LFTs including bilirubin always normal even without medication? Does URSO work for you?
Eliza
Dakota said:
Hi,
I have had a diagnosis since 1993 of PSC based on ERCP, cholangiogram, biopsy and MRCP; however, all my liver function tests are normal. At one point I had to have a dilatation and temporary stent placed in the Common Bile Duct for a stricture. That corrected the problem and so far it has not returned. I do have trouble with upper right quadrant discomfort/pain and itching even though my liver tests are normal. So yes, my blood work is normal but I have PSC. Under the circumstances, I am considered stable and "lucky" to not have progressed further into the disease. My liver doctor told me that you don't have to have abnormal liver tests to have PSC. Are you seeing a hepatologist? If not, you might want to see one.
My Hep and GI MDs explained for me that there is no specific blood test to diagnose PSC. And, elevated Alk Phos in blood is often found in PSC, The way it was put is, part of diagnosing it is to rule out everything else with the blood, and other, tests. MRCP scan can show small, and large duct narrowing, and dilated areas. This may be described as beaded appearance in MRCP indicating scar tissue caused narrowing where strictures can slow, or block, bile flow out of liver. Bile backs up, and damages liver. liver function can be compromised enough to show changes in liver function blood tests. Drainage of bile can be slowed, or completely blocked, at different locations causing bile pooling leading to infection, and damage. Blockages, and bile back up can can also happen due to stones, and cancer. Sometimes large ducts can be dilated with balloon, or stent during ERCP procedure. ERCP is avoided if possible due to risks of infection, and procedure injury. The decreased, or blocked bile drainage cause bile toxins to back up into tissue causing the itch. Liver biopsies are avoided due to infection, and bleeding risks, and could miss sites of damage. Also, cause is unknown, so there isn’t a test for it. Therefore, there the Hep Md is evaluating multiple factors of an individual’s clinical picture to reach diagnosis. This is why the progression is slow, and there are multiple factors that can cause levels can go up, and down. For example if you stop certain drugs, or eating fat, you stop challenging the compromised hepatic system with metabolizing, and excreting,those things. It’s complex, so reading many resources, including learning about the structure, and function, helped me make sense of PSC, what can happen, why I feel sicker gradually, and sometimes better. It also helps me with managing symptoms, and adjusting my lifestyle. We may not know what causes it, or have a cure, but I feel the like understanding more about hepatic function gives me more life control of what challenges my body, and what might make me more comfortable, and planning for the sicker times. Every time I try to write about this, I’m humbled by the complexity, and how much my life has changed over the years to adapt the gradual progression without realizing the control I had. I’ve tried to explain to my children, if this is genetic, you must start now for yourselves, and my grandchildren. Start thinking about avoiding anything that could be an autoimmune trigger, or anything that could be toxic to your GI system, including managing stress.