Hi! My name is Michelle and I’m confused. My doctor is either being cautious, or doesn’t really know what my diagnosis is. I had a biopsy a couple of weeks ago, there was mention of something with the bile duct. Then a MRIAC the results show mild beading on the biliary tree, most pronounced on the right side. There are measurements, which mean nothing to me. My liver panels fluctuate from normal to 200, then 300, to 400, and then have gone back dow, over and over, for the last 10 years. I was so exhausted this last time, I missed a lot of work. When I asked the doctor about the severity, he said we just track the numbers, which I’m not sure what that means since my levels are down right now.
Anyone else have panels that fluctuate like mine?
I’m not sure what to do, or what to think, or what to do next.
Hi Michelle! My name is MarLena and yes, it sounds very familiar. I was diagnosed in October last year after having a Cholangitis attack and severe infection. My understanding is if beading is seen, then its most definitely PSC. My platelets were high and my liver enzymes fluctuated for about 10 years prior to my Cholangitis and I was referred to a hemotologist who kept telling me that they were worried about pre-cancer. Now, that I have a diagnosis of PSC, she says most definitely the platelets and liver enzymes are reactive to the PSC. So far, my levels have stayed down since my attack and then having my gallbladder removed in December. Of course, I haven’t had new labs since March, so who knows. If I don’t have any problems, I won’t have labs again until August. Watching the numbers seems to be the best way to gauge if an ERCP might be necessary to check for a blockage. Hope this helps!
Michelle,
I was just reading your post and am wondering. Are you under the care of a Transplant Hepatologist? After all this time and your physician has not explained in detail about your lab numbers, MELD scores, etc. you need to get his attention and if he’s not a hepatologist I would encourage you to find one and leave this doctor. If you do have PSC, it needs to be under the management of a hepatologist who at the right time can refer you immediately over for transplant evaluation. PSC moves slowly for many years sometimes, but then again it can rear its ugly head and bite quick and you need that hepatologist to monitor everything, make sure you ask the right questions and understand fully what’s going on with your body. If you are too worn out to always understand all the doctor is saying, take a family member or close friend who can help you remember to ask all the hard questions, take notes for you etc.
We are here for you to help in any way. One way to get a start for us to know more about how you are presently is to run your MELD score. Go to this online calculator, get a copy of your most recent labs and fill in the numbers. Let us know back what your current MELD score is. I look forward to hearing from you soon.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Mark
PSC 2011 / Liver Transplant 2015
Yes. That helps! I had my gallbladder out in 2010, it was only 7% functional.
Thanks for the info. I guess the hard part for now will be learning to live everyday with this diagnosis.
Thanks. I’m not sure if he’s a transplant nephrologist, but he is a nephrologist. I looked at the MELD calculator yesterday, but I don’t think I have all of those numbers. I’ll have to ask for those labs, I guess.
My MELD score is only a 6! Whew, that’s good, right? I don’t need to rush off to John’s Hopkins yet, right?
If your MELD is only a 6 then you are doing good I would say as far as urgency to rush off to John’s Hopkins, but if you do have a TRUE diagnosis of PSC you need to be under the care of a hepatologist to manage your disease moving forward, not your local GI doctor. Hopefully things will continue to move slowly but you need that care so when things ramp up the hepatologist can get you on the transplant list quickly. Take care and stay well!
Mark
I think most of us here wish our MELD was a 6!