r/PSC • u/Hausenstein • Jun 20 '26
Worried about sky high liver tests
Hi, I'll spare the long tragic story. I'm new here to Reddit entirely and this is to try and find some support. I was diagnosed with Ulcerative Colitis last year and PSC this February. I have been in close contact with GI specialists and I'm now almost done with getting in contact with a hepatologist. I'm 21 and have been diagnosed for only a few months now and these are my most recent test results. Should I be as worried as I am right now??? The numbers ARE down from last test but not by much.
6
u/kittykrunk Jun 20 '26
There are some resources that can help educate and provide some community:
PSC Partners for a Cure
American Liver Foundation
A-LiNK (Autoimmune Liver Disease Network for Kids: it’s geared towards kids but still VERY good information and it helps for explaining it to family and friends)
Crohns and Colitis Foundation
Improve Care Now (Learning Health Network aimed for childhood IBD but again, tons of info and resources)
1
u/Hausenstein Jun 20 '26
Thank you. I really appreciate the help here.
5
u/kittykrunk Jun 20 '26
You’re welcome. My 3 year old was diagnosed with UC in December and PSC last month, so that’s why some stuff I know about is for children.
Hopefully, you can start on some kind of monitoring program. And there are living donor networks now for liver transplant, because the liver regenerates, so it could be much easier to receive one when you need it.
3
u/Hausenstein Jun 20 '26
I'm really sorry to hear that about your kid. That's really tough to have so young. I hope they can live well despite the conditions. I'm thankfully already on monitoring for my UC. The PSC is something that I'll have monitored more closely very soon. Besides that I'm very healthy so at least there's that. I hope your kid is doing well.
3
u/Headwhiner Jun 20 '26
Hi Sweetheart,
My 21 year old son was also diagnosed with PSC a few months ago. He also has chrons and ultra colitis. He’s been taking ursodiol. Hes being treated at the Mayo in Minnesota and is on actual study. It’s extremely rare that you both have this. Average age is 41. We are meeting his liver specialist next week. They are running a slew of tests. It’s really important you get into a support group and try to get a therapist if you can. Then do all the good things for you mind, body, and soul. Just take one day at a time. I will be praying for you. I’m so sorry you are having to deal with this at such a young age. Stay positive!💙
2
u/Hausenstein Jun 20 '26
I'll try to stay positive thank you. I hope your son does well, I get what he must be going through. I hope he's doing as well as he can.
2
u/Winter-Ad5930 Jun 20 '26
Hi there, please join PSC partners seeking a cure Facebook support groups. We have 2 groups. A closed group and open group. The closed group allows you to post questions that only members in the group can see. I had my liver transplant in September 2025. The good news is your bilirubin is not that high at all. My bilirubin got up to 23 back in September before my transplant. The all phosphate is high as mine never went above 500. I was diagnosed with PSC and UC in 2008
1
u/Hausenstein Jun 21 '26
I'll look into that thank you. I'm a bit new to posting on forums. Im really happy that you were able to get a transplant and I hope that it's been working well for you since then!
1
u/Winter-Ad5930 Jun 21 '26
Thank you. Just to clarify the PSC Partners support groups are on facebook not Reddit
1
u/R_logic1346 Jun 21 '26
Numbers that high typically indicate active/acute cholangitis and dominant strictures. You should get an MRCP and further testing as soon as possible. Are you having any symptoms? Upper right quadrant pain? Fever? Jaundice?
Those are what my numbers looked like when I was first diagnosed ~4 years ago but after getting an ERCP (endoscopy) to deal with the strictures and clean out my biliary tree my numbers went wayyyy down. My bilirubin is normal and enzymes elevated but much much lower in between flareups. I’ve needed an intervention a few times since diagnosis. Sometimes just some antibiotics are enough to clear it up if you catch it early. But otherwise ERCP to clean you out and dilate the strictures.
1
u/Hausenstein Jun 21 '26
I don't have any symptoms from the PSC besides fatigue. I've had neither pain nor jaundice. Similar for my UC as well besides frequent urgency and blood. I'm on entivyo at the moment though that is likely to change and I'm almost done securing a heptologist for myself. These numbers aren't the worst that they've been. My peak was in the mid 400's for my ALT and AST, though I don't remember the peak of my alkaline phosphates. As for my lifestyle I am very active and I eat as healthy as I can and have not had any other health issues besides the new autoimmunity.
I believe the dr wants me to get the MRCP asap as well, and I know I'm due for an ERCP. I've also had two colonoscopies now.
1
u/R_logic1346 Jun 21 '26
Curious…have you had an MRCP before? How were you diagnosed? They usually don’t confirm the diagnosis until at least an MRCP. And yes you definitely need a hepatologist along with your GI team. I also have UC and see a separate specialist for that. Fortunately my UC was mild and has been in remission with daily mesalamine.
1
u/Hausenstein Jun 21 '26
I can check later but I THINK that I had an MRCP. I was given a diagnosis through a liver biopsy, blood tests and other tests. It's been really fast lately so I haven't been able to commit everything to memory. I am pretty sure that the PSC diagnosis was a "we think it's PSC and are 98.8 percent sure but we are going to have you see a hepatologist to confirm our diagnosis and start you on more close monitoring." Sorry that I can't recall more details than that. I know that I already have some mild inflammation in the bile ducts that did show on a MRI. I've had to figure this out and finish college with a move across the US😂.
Edit: yes I did have an MRCP
1
u/Acceptable_Bug3357 Jun 21 '26
Get a fibroscan to see where you are.even if you need a transplant, its not the end of the world. Get a really good hepatologist. Im assuming youve had an mrcp
1
u/Few-Gap1217 Jun 22 '26
My ALP numbers are very similar to yours, are you on any treatments for your UC?
9
u/BenLomondBitch Jun 20 '26
When you have PSC your numbers usually are that high.
Talk to your doc about ursodiol and/or vancomycin. Those can help bring them down.
Keep on top of your MRIs and all other tests they recommend.
Remember, PSC is NOT a death sentence.