Wanted to reply to this message because it’s actually quite similar to my situation: I had normal LFTs but elevated bilirubin during a specific blood test. This lead to MRCP which showed somewhat narrow bile ducts according to the first radiologist and he mentioned early stage PSC. However, they referred me to the hospital where specialists re-reviewed my case and they agreed that the size of the bile ducts was well within the margin of error of the MRI/MRCP and therefore not conclusive for PSC. They ordered several other blood tests to be sure, such as ANA/AMA (checking for other conditions most likely) and a new round of LFTs. Those came normal (even the bilirubin was back to low) and they then diagnosed Gilbert’s.
The only thing funky about it is that my direct bilirubin stayed high (and still is a year later, but didnt change) but indirect went back to normal.
For your specific case, the fact that neither GGT nor ALP (or even any of the transaminases) were ever elevated AND that the MRI shows only a small caliber narrowing within the liver (intrahepatic ducts) are quite telling imho.
I’ll quote here the guidelines of the EASL (European Association for the Study of the Liver):
Cholangiography: A detailed cholangiographic assessment of the biliary tree is essential in making a diagnosis of PSC . Efforts should be made to adequately visualize also the intrahepatic ducts to avoid false-negative results by overlooking subtle changes. The characteristic cholangiographic findings of PSC include mural irregularities and diffusely distributed multifocal, short, annular strictures alternating with normal or slightly dilated segments producing a “beaded” pattern . Sometimes outpouchings have a diverticular appearance . With more advanced disease, long, confluent strictures may be seen . In the majority of cases, both the intra- and extrahepatic bile ducts are involved. A variable proportion of patients (<25%) is described to have isolated intrahepatic disease, whereas lesions confined to the extrahepatic ducts are rarely observed (usually <5%) and should only be diagnosed in the presence of adequate filling of the intrahepatic ducts. Since intrahepatic bile duct abnormalities can also be seen in other chronic liver diseases, one must be cautious when diagnosing PSC in the presence of intrahepatic changes only. The gallbladder and cystic duct are involved in some cases, and abnormalities of the pancreatic duct resembling those of chronic pancreatitis have been noted in a variable number of PSC patients .
From the description you gave, the MRI doesn’t show any of the characteristic findings for PSC. Also: “Since intrahepatic bile duct abnormalities can also be seen in other chronic liver diseases, one must be cautious when diagnosing PSC in the presence of intrahepatic changes only.” is also quite relevant to your case, though your hepatologist has most likely thought about it and maybe ordered some AMA/ANA tests?
To finish, I’d quote one more thing from the guidelines:
(While speaking about MRCP) The method can also reveal changes within the bile duct walls and pathologies in the liver parenchyma as well as in other organs. However, cases with mild PSC changes without bile duct dilatation may be missed by MRCP and one should therefore be cautious to exclude early PSC on the basis of a normal MRCP.
This is most likely why your doctors went on the side of caution and are looking regularly to see if there is any progression. However since it’s been 5 years, maybe I’d ask them about the GS mis-diagnosis by starting for example with asking whether they would have mentioned PSC if you didn’t have a history of UC. If your hepatologist really wants to stick with PSC, maybe you can ask to have the MRI less frequently since there is no changes at all?