Last edited Thu Sep 13, 2012, 02:04 AM - Edit history (1)
PSC is Primary Sclerosing Cholangitis. It is a rare companion disease to inflammatory bowel disease (crohns and ulcerative colitis) - probably an autoimmune disorder. The bile ducts scar making the walls thicker and destroying the liver in concentric tubes around the ducts. Only about 29,000 cases in the US - but almost all in people with ulcerative colitis or crohns. So - chances are small that you have it - but large enough that I would want to raise the question with the doc so it is actively on his list of possible problems.
AST (sometimes called SGOT) and ALT (sometimes called SGPT) are usually mildly elevated (in the range of 50-200) - but are low enough that most doctors will explain them away as nothing serious. (Illness, recent drinking, and a whole host of things can make these numbers go up this much.) These numbers can run into the thousands for "Normal" serious liver illnesses like hepatitis - so gastro docs with run of the mill practices are used to not being alarmed until the numbers stay up for a long time, or are really high.
I knew my daughter had something serious wrong with her because of the symptoms underlined below - but her doctor was sure it was nothing. I did enough research to have a good clue about what I thought it was and pushed him to run a GGT. It isn't a specific test (and is often misused as a test for alcoholism), but when bile slows (narrowing of the bile ducts causes a slow down) this test goes up & the test was enough to convince her doctor.
Other symptoms are really non-specific and associated with any disease that effects the liver (and they vary a lot from person to person with this disease): right upper quadrant pain (imagine a big plus sign across your torso the top right square is the upper right quadrant), itching (particularly the feet and ankles and hands -my daughter describes it as feeling like she is allergic to her blood - and many people with liver disease do the twist barefoot on carpet to scratch the itch), sleep inversion (sleeping during the day, staying awake at night) or just plain insomnia, fatigue (an exhaustion that you can't get rid of no matter how much you sleep), jaundice (yellow/orange/green skin - later stages), irregular periods, brain "fog" (in the later stages it is a form of dementia, in the earlier stages it may have a different cause - but forgetfulness, decreased ability to reason things out), headaches, gall bladder issues.
If you were my daughter, I would have the ultrasound (my daughter has that every year as a cancer screening tool). An ultrasound is a cheap and a good tool to pick out things it sounds like your doctor is (and should be) looking for. I would be more cautious about biopsies - some cancers spread more easily when punctured. Before I would consent to a biopsy, I would want to discuss what the doc is looking for, and whether the biopsy could make the problem worse. If you haven't had recent liver function tests (or they were elevated even slightly last time) I would ask him to think about running them again, with a GGT - as I said, it isn't a specific test, but it is relatively cheap and can provide some clues about PSC that the normal liver panel (AST, ALT, ALP, and bilirubin) doesn't give. During the diagnostic phase, my daughter had LFTs drawn every other week.
Here's an organization with a lot of information. http://pscpartners.org/ If you are trolling the internet, don't even open anything with a date more than 8 years old. The older stuff is just too scary - they don't really know much more about how to fix it, but the way they talk about prognosis is dramatically different in the more recent articles.
(I'm not a doctor - but I unfortunately have a lot of experience with this disease, and because there are so few patients we (patients and caregivers) tend to be almost as well informed as the doctors...and if you want to ask questions with details you don't necessarily want splashed about here, feel free to DUmail me. I know of a handful of others here with UC/Crohns, so it doesn't hurt to have this general info out there.)
= new reply since forum marked as read
