Hi to everybody,
I am Ozgun from Turkey. It is great to have such a communication tool for everybody. Let me try to explain my case.
While I was getting medical control for military exams on 2006, It was seen that my ALT and AST was little higher than the upper limit which was considered OK at that time. Anyhow, I didn’t continue my application to army, I choosed engineering education instead I was 18 at that time). But we tried to understand why was my liver enzymes test was higher. I remember, they first checed hepatit markers which was found ok. The only thing they found abnormal was ALT AST, total and direct bilirubin (lower than 2 times higher approx.) and ALFA-1 antitripsin was low. They first though it is Wilson, they checked copper in 24 hours Urine test which found I remember 2 times higher than it shall be which was not strong enough to go further for them I think. Meanwhile, you can sure they checked everything since It is a fully fledged university research hospital. I has liver biopsy on 2006 which gave us only result with ‘fatty liver’.
Since this researches became a back and forth goings to hospital, I bored to continue since I didn’t have a sufficiant diagnosis. They lastly said It can be NASH. But I followed it 10 years regular base. In that time, We didn’t record a meaningful change on liver enzymes. For a while, I used Ursofalk which helped to decrease my enzymes to normal. But afterwards, doctors said me to give up since UDCA doesn’t create a permenant solution.
In 2015 October, I experienced first time an obstructive jaundice, all ALT, AST, ALP, GGT levels were about 250-400 and so on while bilirubin levels were about 4 If I am not wrong. Within a week, I became normal without any medical or surgical intervention. My doctor warned me to go emergency if I have a cholangitis atack ( fever and chills basicly) which I didn’t. After a week, enzymes were back to 2-3 times higher level. Afterwards. My doctor did me ERCP intending to put a stend on my bile duct by considering me as a PSC patient. I wasn’t of course aware of what PSC is at that time, but my doctor failed or decided not to put stend due to inflamation on bile ducts. But in ERCP report, It doesn’t state a supportive findings for ERCP. I had a MRCP after ERCP with below statements (I hope I translate well)
Focal dilatation spaces in peripherie intrahepatic bile ducts (for the petient who is being followed with PSC diagnosis, outcomes are supporting the diagnosis). Date: April, 2016.
The thing is here I wasn’t diagnosis with PSC at my ERCP but MRCP is kind of referring another diagnosis which I didn’t understand at that time.
Note: Meanwhile, First thing they did after ERCP inflammation detection was colonoscopy which found only a polip, no IBD findings such as UC or Crohn on February, 2017. Due to Colon CA history of my father, I repleced a colonoscopy after a year with normal findings.
He said me to use UDCA repeat the MRCP after 1 year. I repeated it with below result comment:
Minimal disorders in Intrahepatic bile ducts (focal dilatation spaces seen on last MRCP was nor observed in current one. While finding is non-specific, typic outcomes were not observed. Even though typic outcomes were not observed, If PSK is diagnosed to mentioned petient, outcomes can be considered to support the diagnosis)
Dated April, 2017
This last report is totally confusing me and my doctors. Meanwhile, my blood results became normal or sligthly higher than limit after UDCA. My doctor is confuced since he said PSC normally doesn’t show us better results, it is a progressive disease. They all say continue to use UDCA and repeat MRCP yearly.
This uncertinaty is really making me sad. It would be appreciated to see your comments since I am really obsessed with it, I feel that I am trying to create a supportive symptoms of PSC which is not good.
I hope I am OK with my English to explain my story.
Thanks in advance for your comments.