I had my semi annual visit w/ my liver doc and when we were discussing my alk, ggt, alt, etc. test results he said these readings really don’t matter and I wanted to hear your thoughts on this?
His point is that these numbers don’t affect the progression, or lack thereof, of the disease but only make it appear to look better.
He bases progress off of the four readings that go into calculating your MELD score(creatinine, sodium, bilirubin, and NNR(clotting time)) as well as results from MRCP, ultrasound and fibroscan tests.
It came across as a little jarring to me at first, but the more I thought about it the more it made sense to me and I’m curious as to what you all think.
Comparing imaging over time is likely the best measure of early disease progression and is useful as a cancer screening tool. The MELD factors aren’t likely to budge until the disease is advanced.
ALK and GGT are useful predictors of outcome. A plethora of studies have found that patients with near normal ALK (and GGT for pediatrics) are significantly less likely to reach clinical end points compared to those with higher values. The mechanism of normalization, whether spontaneous, UDCA, oral vanco, etc. doesn’t appear to matter.
The blood work seems counter-intuitive, and takes some getting used to.
The only numbers my doc really was concerned about were my MELD score and my bilirubin.
We talked about my other scores-ALK, ALP…none got much interest from him at all.
Your doc is correct about our numbers don’t necessarily reflect progression, which is pretty confounding in our linear minds. But it goes with PSC that the MELD score often does not reflect how sick we really are.