This is my first post on this excellent & helpful forum, even though I keep on reading it for years
I am from Greece ( so please accept my apologies for my poor English) and back in 2010 (28 years old at that time) I started a journey trying to identify my Liver problem since I had elevated AST, GGT and ALT (3-5 times the limits) .
After a trip to India, I felt fatigue and I had routine blood tests which showed the above values. I was admitted to hospital since my GI was afraid of some Hepatitis virus where I stayed for a full week so that all major diseases could be ruled out.
After a week I was sent home with “a unidentified Liver problem”, even though my Liver values lowered ( close to normal) without any treatment . After close monitoring (blood tests, MRCPs, Ultra Scans, Elastography etc) all tests were negative but those liver enzymes stabilised at 1.5 x times of the normal levels. ALP etc were all normal
The doctors indicated that I should have biannual tests ,a practice which I followed and my liver enzymes where 1.5x to normal with no major alterations.
In 2012 an hepatologist (one of the best in the country) told me that I suffer from PSC since all other diseases have been phased out and started prescribing Ursofalk (250mg pills , 4 per day)
My liver enzymes came to normal. All tests were still negative and the annual MRCP showed no signs of PSC or anything. I arranged appointments with the doctor every six months where he had specialised blood tests, MRCP, elastography and utralsound with a pattern (some every six months while some others every year)
However, last year I met another doctor, a Professor in Hepatology, at a social event who offered to check my condition since he suggested that PSC is rare, but you cannot identify it by simply eliminating other diseases.
Anyway, after having another series of tests the new doctor thinks that I am not a PSC patient because every test is negative and the MRCP doesn’t show abnormalities or even signs of them. I am seriously considering stoping my visits to both of them (the normal one and the new one) since I am puzzled and probably lost.
It has been 7 years of agony, testing, reading, contacting doctors, affecting my family (wife, daughter , parents etc) and I don’t really know what to do. I am considering visiting Mayo Clinic in the USA to get another- better educated opinion - a choice that can be really costly due to the fact that my Insurance doesn’t cover international treatments and by any means such a trip is very expensive. Therefore I need to plan ahead so I would deeply appreciate if anyone knows an approximate price for Mayo Clinic (on their site I don’t seem to find any price indication for PSC tests) .
of course any other advice would be more than welcome.