I am of the understanding that the itching is from stuff not getting filtered out of your blood. I am hoping someone can go into more detail about specifics regarding it. Thanks
The itching is the build up of bile salts in your skin due to the inability of the bile to properly drain from your bile ducts due to strictures. If the itching gets too intense it’s a good sign your bilirubin is high and you need an ERCP intervention to clear the blockage. The more advanced the disease gets the more difficult it will be for the strictures to be cleared. Some doctors prefer to put stents in temporarily, but keep in mind that this introduces the strong possibility for infection as these stents will also eventually clog and not drain. I would avoid stents unless absolutely needed.
Mark
Is there blood work that can be done to check for that stuff? What do they look for if so?
As I said, the itching is the build up of bile salts in your skin. That will give you a good indication of increased bilirubin levels. If you doctors do an LFT blood screening the bilirubin will be included and will give a good indication of what’s going on.
You’ve been on this forum for a while now. Are you not under the care of a hepatologist yet and have these questions not been addressed by the doctor? I do hope you are getting the care you need for your PSC. You can’t just ignore it for it will not just go away. Please make sure you are getting regular labs and checkups by your hepatologist.
Happy Resurrection Sunday!
Mark
We actually don’t know exactly what causes cholestatic pruritus. Mark laid out our best guess. For normal people, waste in the blood gets brought to the liver, is altered or conjugated, then travels down the biliary and gastrointestinal tracts to be excreted. With PSC and a plugged up biliary tract, all this stuff has a hard time flowing in the correct direction, so more than normal amounts of conjugated waste and bile salts flow backwards into the blood stream. Some part or parts of this liver conjugated mixture is likely responsible for the itching, we just aren’t exactly sure what. Itching is often but not always correlated with higher levels of bilirubin. The itching isn’t necessarily caused by this bilirubin; rather, this is an indicator that things aren’t flowing through the biliary tract.
The blood test will measure indirect and direct bilirubin. Indirect bilirubin are broken down blood cells that haven’t yet made it to the liver. When this bilirubin makes it to the liver, it gets conjugated and becomes direct bilirubin. High direct bilirubin in the blood can indicate cholestasis, aka bile duct blockage.
Mark, I have not been diagnosed with PSC. I have suspected it since around the time I joined here. I am suspecting it even more this last week to week and a half. That’s about how long I have been itching. I started having symptoms of asictes for around a month. I had lost about 45 lbs. I have gained around 10 lbs in the last month. I am feel full, bloated, and mild pain in my stomach most of the time. I hope I don’t have PSC. Thanks symptoms I have just line up so much. Also very similar to other people on this site. I don’t have a hepatologist. I see a GI Dr at the VA here in SLC Utah. He doesn’t think I need a hepatologist. I will get some more feedback from him this week. I can’t afford to see any other Dr outside of the VA. I am a disabled veteran. Spent a total of 4 years in Afghanistan. I am on a fixed income. Just makes seeing Drs difficult if they are not at the VA.
Tsohg,
First of all, thank you for your service to our Country. I highly respect each of our men and women who have so valiently fought for our freedoms. You certainly deserve to get the highest quality of care. You might take a look at the VA Choice program as well if you can’t get to see a hepatologist within the VA system. I’d certainly ask to speak with another GI if you feel you need to pursue this. Here’s the link to the choice program https://www.va.gov/COMMUNITYCARE/programs/veterans/VCP/index.asp
The GI doc you are currently seeing, has he drawn liver labs recently? If so, what is your bilirubin, INR, creatinine, etc? This will give a good indication of where things stand with your liver. I’m sorry you are having all this itching. That is certainly a good reason plus the bloating to have your liver function labs tested.
I certainly understand what you mean about the fixed income. I hope they will be able to help you get the referral’s you need when the time comes.
Mark
JTB, that seems to be the current explanation re cholestatic pruritis. Quite true about itching not always correlating to elevated bilirubin, that’s sure how it’s been for me. I had 5 horrific months of deadly itching last year while my bilirubin (total and conjugated) were continually normal. The other LFTs were up, but not that much. I’ve had very high LFTs and little or no itching. Go figure…
Mark, I did just have blood work done. He said everything was fine. The itching hasn’t stopped. It is tolerable at the moment. My GI has shot down just about everything I have talked to him about. He looks at my blood work and says that my symptoms must not be related to PSC. He has dismissed the pain, weight loss (at first), weight gain (now that I am having symptoms of ascites), yellowing of eyes in the past cause currently normal bilirubin count, bowel problems including pale chalky color and dark green, head fog, joint pain, fever, chills, and I am sure I am forgetting things. He didn’t dismiss the itching. He just doesn’t know why it’s there. He did other tests on that to rule out other causes. In his words a liver biopsy is not worth the risk of most likely no new info. He doesn’t think we should do an MRCP. He is waiting for me to have another acute attack. Not sure what to do. Does this sound like PSC or I am just off base?
I read somewhere in here about throat pain when you swallow. I can’t find the post. Any thoughts on that. When I read it, I didn’t pay much attention cause I didn’t think it was a symptom. Now I am not sure. I can’t really find anything on that. Yes, my throat is starting to hurt when I swallow. I haven’t talked to a Dr about it. It just started and I don’t want them to think I am just making stuff up.
Tsohg,
If you are only seeing a GI and not a Hepatologist tied directly with a transplant center you are seeing the wrong doctor in my opinion. The symptoms you are describing are associated with liver disease. I think you need a second opinion by a hepatologist. I do agree that you may not need a liver biopsy at this point. If you have large duct PSC especially the biopsy has very little value. It’s a bit different with small duct PSC. The hepatologist will know exactly what route you need to take. Seek one out today.
University of Utah Health has a liver transplant center. They are close to you. Why not call and get an appointment there for a good second opinion. Here’s the link to their transplant department.
https://healthcare.utah.edu/transplant/liver/
Mark
K, thanks