I’m in Thailand and I’m trying to get a confirmed diagnosis. I know the three best ways to get a diagnosis are MRCP, Endoscopy, and a liver biopsy. I attempted the MRCP but freaked out after a lack of sleep and no knowledge of what they were like. I have not as yet had the other two. My next MRCP is scheduled for April 29.
I got a CT scan yesterday and they found 10 cysts but no bile duct dilation. They do not suspect PSC, which is contrary to the ultrasound Doc, who said she suspected it.
My question: If it’s not PSC, why am I itching and fatigued? I can’t find any information on the relationship between benign liver cysts and itching and fatigue.
I will be going to Los Angeles in late March and will consult a doctor but any experience with this would be greatly appreciated.
William,
What is your current bilirubin level? It sounds like you have elevated bilirubin indicating a blockage in the bile duct. You probably need an ERCP to clear that.
My current Bilirubin level is 1.0. It was 1.8 four months ago and the CT shows no dilation. I know I need other procedures but I have to wait two months for a MRCP and I have as yet no ERCP scheduled. Frustrating. Thanks for you suggestion, Mark.
Hi William, I’m sorry you are going through this. Im not sure why an endoscopy is needed for a diagnosis, but yes to the MRCP and biopsy. My daughter had a cyst on her liver too but it turned out to be a swollen lymph node so that might be a clue about your cyst. The worst part of the MRCP is putting the IV in…the proceedure is really like a long xray. Nothing to fear. It is to show dialation to your bile ducts. If it turns out to be normal, and the biopsy confirms you have PSC, then you will probably be diagnosed with small duct PSC which seems ot have a better prognosis. I would also look into oral vancomycin. We live in Los Angeles and no doctor will prescribe it (we go to a doctor in New York when my daughter goes to college), but it has been a life saver for my daughter. You will surely be given a lot of advice, and you should research everything, but I hope you research this medication as well. A good starting place is Dr. Kenneth Cox’s article called, “The Case of the Disappearing Liver Disease”. But first you need to be diagnosed! Good luck with all of your procedures and keep us updated.
Thanks for your reply Joki. I have read that article and it gives us all hope. I can get Vanco here in Thailand but I’m not sure at what dose they would prescribe. I haven’t asked for it yet. I’m just a little frustrated with the process here. I did miss my chance on the MRCP due to my own psychological reaction to the procedure, which I found very unsettling to say the least. Now I wait. I have all normal blood work but a radiologist who says PSC based on one ultrasound and a CAT Scan that says no PSC problems.
The only symptom that has remained steady is diffuse itching, or pricking like sensations. I don’t know if that is in my head or if it is real. With stellar blood numbers, I question my sanity. Every blood marker is in normal range!!!
Maybe it’s my head marker that needs some adjusting as I scratch, scratch, scratch.
Well, I took an AMA blood test and will get those results tomorrow. Maybe this itch is due to PBC.
I got the CT Scan on CD and can take it to a doctor in the US for a review.
The report said “Neither intra nor extra hepatic bile duct dilation is found.” They only found, “Several well-defined non-enhancing hypodense lesions scattered at both hepatic lobes, measuring up to 1.1 cm; liver cysts are the most likely diagnosis.”
William,
It sounds like you got some good news at least as far as PSC is concerned. We wish you the very best. Hopefully things will get better soon with treatment.
Thanks Mark! I was investigating the drug you took for itching as mine is becoming more persistent and pronounced and found it has some severe side effects, especially with the liver. It indicates use for TB and other bacterial infections. I am wondering if this drug had any negative impact on your liver even though it solved your itching problem. I did read one study that it was effectively used for pruritus.
William,
The Rifampin was reviewed and suggested by two of my hepatologists at Duke. When you are about to scratch yourself to death due to liver disease and have a disease that has no cure but transplant, whatever effect it had on the liver was irrelevant to me. It really returned a quality of life that I was lacking. I was on it for 4 years from diagnosis to transplant and the only side effect I had was staining the toilet seat orange You have to do what’s best for you, but I stand by my position on the matter. You must do what you believe is in your best interest William. We are here for you.
P.S. I was on 300 mg of Rifampin twice a day.
You’re the man! Thanks so much for your reply. I’m still gathering data on my condition but some real symptoms are here. I will take this to my Thai doctor and go from there. USA here I come!
I’m thinking about signing up for ACA during my visit. I may not have to until the annual sign up in November/December. I’m going with a PPO, which is offered in California. NOT Kaiser as I heard they are not so supportive in sending you to a specialist. PPOs give you the power to go without asking permission. More expensive though. Thank god for some government support healthcare!
You have to do what’s best for you, but I stand by my position on the matter. You must do what you believe is in your best interest William. We are here for you.