It’s been a while since I’ve posted on here… Hopefully someone has some insight.
Last week I had an ultrasound and blood work. My ultrasound came back ok but my bilirubin is high (1.3). Its steadily increased over the past year. Is this something to be tremendously concerned with? Is it the beginning of the end?
I’m currently searching for a new doctor … Hopefully someone here can speak from experience.
I thought 1.3 bili was in the range of normal. I hear you about its increasing. I've never been jaundiced or had a really elevated bilirubin, and have had PSC for 7 years now. So don't know what to say about that? Why do you want a new doctor?
I have had PSC for 5 years. The highest my bilirubin level has been is 13 and the lowest is 1.0. Provided yours is only 1.3, I would not be too concerned.
One thing I have noticed with bilirubin levels is they will fluctuate. Unless you are jaundiced or having pain, I would just continue with my daily activities and keep your appointments with your doctors.
When my symptoms occurred prior to diagnosis, my level was 17.9. The highest the MD had ever seen (Not sure if I should be proud of that or not :).
I wouldn't be too concerned, how long has it been since your last ERCP? My level is now in the .7 range. My understanding is that things tend to be OK if you're in the high zero's to the low one's.
That said, seek professional help and advice which it appears you're already doing.
Thanks for your feedback. I met with a new doctor at the hospital where I work and he's actually not concerned about my bilirubin -- but my enzymes have been steadily going up for the past three years and he thinks I may have more duct damage than I realize. He believes there may be a blockage of some sort in my duct(s) so I'm getting an MRI / MRCP on Tuesday to see what's happening. I had an ultrasound this week and that came back normal -- so he's hoping an MRI will show more detail.
Danabee: I was going to the Liver Center in Pittsburgh, PA. I met a new doctor there who was very thorough and very patient-oriented. However, it's a two hour drive from my house so I'd have to take off work an entire day to go -- then I would get there and it took FOREVER to get in for my appointment. Then they'd tell me there was nothing they can do for me and I'd get blood work done and go back six months later. It was just a hassle and now that I work at a competing hospital, I needed an out of area exception renewal each year for insurance and just not worth it for them to tell me they can't do anything. So now I just want someone who can monitor my blood work and tests to tell me when I need to go see a specialist more regularly. I'm looking into Hershey Medical Center for a hepatologist.
Thanks all for your help! :) I'll let you know how my tests go...
I can see why you'd want to change hospitals and doctors. Plus that thing with having to wait forever doesn't cut it with me. And I don't get treated like that at Univ. of Colorado Hospital Transplant Center. Most of all, I trust that I'm getting good care. We all have to feel that way. I moved to Florida for a couple years because I'd heard from supposedly good sources that the wait for a transplant was shorter there. Well, I ended up really hating the hospital and doctors and their prissy-assed nurse who "didn't have time to call" me back. While I was in Florida, I was followed by a very good internist who did an excellent job with my care. And I continued to be on the transplant list at UCH, so I would go see my hepatologist in Denver once a year. Once I was also diagnosed with breast cancer, I just moved back to Denver so I could get coordinated care. The Breast Center has worked really well with my hepatologist so it was a good (though costly and hard) move. We do what we have to do, right??? My goal is always to get not just the best hepatologist but the best care team. And I have that now. So I'm happy - not that I want PSC in my life, though!!!
Best of luck to you, Stacy.
1.3???? Bilirubin is high??
that's new to me, wish mine was that, mine is finally going down slowly but it's still high. I meet with my liver specialist on the 17th in hopes that it goes down even more. But I don't think 1.3 is high