New member, new story

Symptoms & Treatment
1

Hello everyone, I’m new here, thank you for letting me join,

Doctors have suspected I have psc, but it has not been confirmed. Here is my story.

I have had consistently elevated liver enzymes for at least 5 years, first time they were elevated was 24 years ago, at that time I was very young and I honestly can’t remember eating, drinking or doing anything that might have triggered high liver enzymes at that time. Initially (not sure if it’s connected or just a coincidence), I felt very, very tired, had trouble sleeping and felt like my brain was foggy, but I didn’t have any physical pain. Exams and blood tests didn’t point to any disease, there were just elevated enzymes. The “fogginess” disappeared after about 3 months, I felt fine and I just wanted to move on with my life, so no further tests were made until 5 years ago when elevated enzymes popped up on a blood test again. My guess is that they have been elevated since 24 years ago, I just didn’t know.

These are the most recent numbers: ALP: 192 U/L, ALT: 120 U/L, AST: 72 U/L, GT: 264 U/L. GT is always highest, followed by ALP then ALT and last (lowest) AST. All other liver values are within normal limits. So the pattern is always the same, but the numbers go up and down a bit.

Tons of blood tests have ruled out all sorts of viral infections, AMA, ANA, ceruloplasmin, all come back normal, only my ferritin level has been below normal. Cholesterol is normal. Blood test for Celiak disease also came back normal.

Several ultrasounds, 2 mrcp’s and fibroscan have shown nothing wrong, no fatty liver, nothing.

My BMI is normal, never been really overweight, according to my scale visceral fat is very low. I don’t drink (used to drink at weekends and parties when I was younger, but never daily, and never exceeded the maximum units per week recommendation threashold), no supplements (just occasional multivitamin and iron), no illegal drugs (not even once in my life), no regular medications that might explain it. Knowing that I have liver issues, I try to live a very healthy life, I feel no pain or discomfort.

Doctors now want to do a biopsy. I am wondering, has anyone here had a biopsy showing psc or small duct psc after so many years of no symptoms just high lft’s and several normal mrcp/ultrasound results? Has anyone here had anything significant turn up on biopsy that every other test had missed?

Can psc progress so slowly?

Of course there are other diseases but they usually show up in blood tests, like positive AMA or ANA, ceruloplasmin or atitrypsin, but these all came back normal for me. Most diseases progress and cause pain, itching or something..

I don’t think I have Crohns or UC since I don’t have symptoms, but I haven’t been tested for those.

I’m scared of the biopsy. I feel like the risks of a biopsy outweigh the benefits, I have small kids and I don’t want to bleed to death after a biopsy, a man died just 2 years ago at the same hospital I’m going to, so that adds to my fear.

Or maybe I am wrong and it is worth the risks? Is there a good chance biopsy picks up small duct psc, some other disease, or major scarring/cirrhosis that everything else misses?

Thank you for reading, sorry about the long text, but I have no one to talk to, I haven’t even met a liver specialist in person, here in Sweden they just call you on the phone and send you off for testing….. I am just so tired and scared after so many years of tests and worrying.

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Ateragram,

Hello and welcome to Ben’s Friends PSC Community. We are glad that you found us. To immediately answer one of your questions, yes PSC normally moves very slowly over many years. You can have it and not even know it until something shows up in blood work. I was diagnosed in 2011 but progress went slowly until 2015 and I had a liver transplant in July of that year. Everyone’s progress will run at a different rate. Some go an entire life and do not need a transplant, while others move at a more rapid rate requiring that life-saving transplant. It’s not anything you eat or drink that gave you this disease. Research continues to search for a cure but none has been found yet. There are things that you can do if you get a confirmed diagnosis to slow the progression.

One thing I would immediately encourage you to do though is to contact the liver transplant department at a major university hospital or center that does liver transplants and go in for an evaluation. You need to be under the care of a hepatologist. This is a doctor that specializes in the diagnosis and treatment of liver diseases. Your local GI doc is not sufficient in most cases.

I do think getting a liver biopsy may be a good next step. I had several per-transplant. The gold standard though would be to get an ERCP. This is where they go in endoscopic and enter into your common bile ducts to see the actual condition of your bile ducts. If they find the “Beading” in the ducts then most likely it is PSC. Some folks have small duct PSC which resides inside the liver itself. I will caution though, please make sure whoever does the ERCP does these procedures everyday, not your usual GI. This is an invasive but necessary procedure in the identification and treatment of PSC symptoms.

I am sure you will have more questions, just know that we are here to support you. I would encourage you to make sure you are sharing your health journey with family or close friends. You will need an advocate to go with you to appointments if you do have PSC as sometimes we can not be thinking the clearest.

One final question, you didn’t mention what your bilirubin levels are. If you’ll share that that would be helpful. Also go to this link and enter your most recent lab levels. Let us know what your MELD score is. https://optn.transplant.hrsa.gov/data/allocation-calculators/meld-calculator/

Wishing you the very best.

Mark Wilson

PSC 2011 / Transplant 2015

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Welcome to the group.

i will tell you in my experience only:

i was diagnosed with PSC 7 years ago, but have always has slightly elevated bilirubin nearly all my life. I never have had symptoms and previous docs just assumed it was Gilberts disease. the only reason i know i have psc is because it was caught on a lung scan. more than likely I have had psc a very long time.

in the beginning of diagnosing i had liver biopsies (needle and ercp). the needle was uneventful, but the ercp did go a little sideways and made my pancreas angry. i did go to the hospital a couple days.

I do also have UC, which i never knew nor do i have any real symptoms. aside from that i do get annual MRIs, coloscopy’s and blood tests. blood work only shows mild increase in bili at 2.5ish, but little to no progression in my PSC and UC.

i would follow Mark Wilson suggestion (our moderator) and make sure your ERCP doctor is an expert!

i live a healthy lifestyle with occasional alcohol, but live a completely normal life pretty much symptom free. Lord willing my liver outlives me. regardless, this board has been very helpful and will likely be a wonderful asset for you as well…

Above all else stay positive!

Mark R

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Hello!

Thank you for writing! My bilirubin is 8 μmol/L so within normal range. It hasn’t been above normal range during these last 5 years at least. I will check out the link for the MELD score.

I will definitely include family members more in the future. I’ve noticed that it’s difficult for people around me to understand my situation because I don’t look sick and I’m not in any pain. Well at least not yet.

Thank you again,

Wishing you the best too,

/Margareta

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Hi,

Good to hear that you never have had symptoms, I hope it stays that way!

It’s interesting how symptoms and progression varies from one person to another. Has it always just been bilirubin out of range? Nothing else showing up in blood work?

Wish you the best,

Margareta

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Yes, just the bili. But definitely evidence of the disease shown on the annual MRI.

Mark R

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7

While reading the beginning of your story, I thought I was reading about myself.

I am going through so much of what you’re dealing with and very much appreciate everyone’s response.
I have always been told I had Crohn’s dx, however, it went into “remission” about 7 years ago and slowly my liver enzymes started elevating. Like you, I am high (189 ALP) with fluctuations on AST, etc, low iron with iron infusions. This is simply a very brief medical background, yet I also have a dilated intra/extra hepatic biliary tree at 14mm. Now I’m told I do not have Crohn’s dx?
They did a fibroscan-negative for PSC. No ERCP because of my high risk towards pancreattis. Where I’m left is I’m told when I hit 200 on my ALP maybe they will start Urso. I’m told I do not look as if I have PSC by one hepatology Dr but other thinks so.?I do not drink, etc. I am left frustrated, like you.

I would weigh the pros and cons of a liver biopsy. i think it’s worth it to find out what’s going on. I do understand your fear, for sure.
I’m kinda rambling here but wanted to mention something.. I reached out to this group and the liver foundation for support. I met people like me. We started a small liver group on zoom that has been going for 3 years now. Come to find out 5 of the 7 in our group live in my state. It’s been so helpful! Having people that know and understand has been essential for me. I think it could truly help.
I hope you find answers, keep us posted!