Greetings, I am so happy to have found this site! My 18 year old son was hospitalized after seeing PC for abdominal and back pain. Labs indicated elevated AP (795), ALT (475) & AST (315). Total bilirubin was 1.1. They diagnosed acute pancreatitis but also observed obstructed bile duct in imaging tests. ERCP was done and biopsies of pancreas were taken. Stent was placed in bile duct. Biopsies were negative for CA. Negative tests for autoimmune pancreatitis. No hx of UC or IBD. Levels have continued to rise, even after stent placement: AP (807), ALT (689), AST (593), total bilirubin (4.5).
He was discharged from the hospital with those levels. Pain is manageable with occasional Norco, some nausea but he is eating some. Itching is increasing but seems manageable at present. Upon discharge, they referred to liver specialist at a research hospital and mentioned the possibility of a rare autoimmune disease, and specified PSC. We are waiting for an appointment. Of course, the wait is excruciating!
Does this story, these labs, at all sound familiar to those of you who’ve already been diagnosed. Are there questions we should be asking and/or things we should be watching for?
The diagnosis at discharge was “acute, pancreatitis, unspecified complication status, unspecified pancreatitis type” It seems that they do not know what caused it, and in searching for the answer, the liver issues were discovered
I should add that they noted strictures on or around bile duct. I wish I was listening better to what they said at the time–I have a context for it now that I didn’t have then.
Be mindful that those stents will clog up at some point if he has PSC so the hepatologist will want to go in and check them from time to time. Some doctors prefer not to stent if that is feasible and do the ERCP’s as needed. In my experience there is less opportunity for infection with no stents. Just keep an eye on that and if he develops a high-fever, etc. they will want to go in and remove that stent most likely in addition to the antibiotic regimens.
Glad you found this site. We are here for you in any way. As for your question about his labs, that is pretty typical for PSC patients. That 4.5 bilirubin is a tell tale sign of a bile duct blockage. Usually when I would start itching pretty bad and other pains in my abdomen and lower right back it let me know it was time for another ERCP. Take care and keep in touch with the group.
Thanks, Mark. The stent was just placed five days ago. When I asked about the rising levels post stent placement, they initially seemed concerned, then decided it was not uncommon to see this as a result of the dye used during the ERCP.
He will have more labs done tomorrow. Also has initial appointment at Walter Payton Liver Center in Chicago in early August. This is all new to me and scary stuff with no real answers right now. I am grateful for your input and support.
That’s true that post ERCP the levels can go up. Hopefully when the next labs are done things will have settled down. I know we mention this a lot on this forum, but I can’t emphasize it enough to make sure if you do have a confirmed diagnosis of PSC that you have his complete liver care under a transplant hepatologist. This is not your local GI doctor or PCP, but a specialist in the diagnosis and treatment of liver disease. Do not settle for less, make sure you go with him to EVERY appointment, take notes, ask hard questions, etc. etc.
Amidst all this though encourage him to live his life normally, make plans for College and his future, etc. PSC will tell him when to rest, when he needs to have interventions like ERCP done, etc. Just tell him to listen to his body, etc. In many cases especially younger patients, the disease progression is slower but there’s not exact science on this illness so you just have to be prepared to go with the flow. Encourage him to stay active, exercise and practice a healthy life style. I’d get labs at least every 6 months at this point, then if he does have PSC and when it progresses they will want to increase the frequency of labs and office visits. They will probably want annual MRCP’s done, etc. Keep a good notebook of all his labs, MRI’s, etc. ask for disks, keep everything in a well organized file so you will have what you need when anything arises. This is a disease that really needs a lot of family interaction. It will be hard for folks to understand why he doesn’t feel well at times and the more you educate them and talk freely of his condition without wearying your son of hearing so much the more support you will get. As I got especially further along and my condition worsened we set up an email list that I could blast out updates to everyone at once to communicate how things stood. I didn’t have the energy to repeat it constantly to those who were concerned so the emails helped a lot.
Sometimes you will have to educate the medical community that not everyone who has liver disease drinks alcohol. PSC is a non-alcoholic liver disease. Don’t be intimidated by peoples remarks, but in a nice way set them in their place if need be. Well I’ve said enough for now. Just let us know if you need anything. I’m here in North Carolina and had my treatment and transplant done at Duke Medical Center. Take care.
Thank you, Mark. Your response was just what I needed to hear and really helped me to feel at ease with his potential diagnosis. We have an appointment with a physician who works under a transplant hepatologist at a large research hospital next week. In the meantime, new labs were drawn and bilirubin is now within the normal range and ALT, AST and AP each have dropped a little bit.
Thank you for taking the time to reply, share your insights and some of your story. It’s invaluable!
Strictures around the bile ducts are a good clue of psc. The bilirubin at 1.1 is just a hair out of the normal range, and I would not worry about that. I am glad his latest test showed normal.
If it is psc, keep in mind that it normally progresses very slowly. That is about the only thing good about it. I’m glad he was referred to a hepatologist.That is where you want to be, not a GP or GI doc.
Keep researching and asking questions, for knowledge is power.
Hello Everyone, My name is Terry and I just had a MRCP and the heptologist diagnosed PSC and has referred me to Georgetown liver expert who I have to wait to call me and don’t know who it is yet. My history: 52 now. Started having marital problems in 2012 and started drinking heavy.
Was diagnosed with UC/Crohns at 32 years old and it stayed under control and I barely took any meds to keep it under control but drinking a lot changed that and I was taking reg meds to control it. then in Dec 2014 my blood came back with ALP 231 and ALT/AST at 40(upper limit) Doc said stop drinking. I didn’t. Also in 2012 I got a rash that was severe and I have had skin issues ever since with itching etc. but I’m not sure it is from PSC as my bilirubin is normal at .7 so I’m at a loss as that has been my primary noticeable symptom only. Then Oct 2015 ALP 184 ALT/AST 34. I noticed Jaundice and dark urine recently so I scheduled to se a heptologist out of concern. Blood came back ALP 364 ALT 276 AST 155 CRP 6.9 Bilrubin .7 (ok)
Did Ultrasound came back normal as I did it in 2015 also. Then MRCP and he said there is scarring on the bile ducts!!! I feel the stress of the divorce and business issues and excessive drinking has caused this and I had stopped exercising and eating right too. To make matters worse in Jan due to the divorce I got temp ins and the cheapest I could find(huge mistake). What can I expect going forward and any advice on the insurance issue as I have not gotten the bills yet but a lousy urine sample and blood test doc vist in Jan has cost me 700 so far so I’m sure it will suck when I get the bills. I was going to call today to see if I can go back on the plan I had before at 2400/mo for my family. Thx and apprec any advice on condition and what to expect and ins advice.
Peace
Terry
Hi Terry and welcome to this PSC community. Just looking at your labwork, things have not got out of control yet. Bilirubin just outside of normal so you probably don’t have a big blockage yet if you do have PSC. When you see the hepatologist at Georgetown ask him about doing a ERCP to definitely confirm a PSC diagnosis. Unless you have small-duct PSC they should be able to positively confirm the PSC with this procedure. An MRCP while very good is not for sure. It’s the scope right down in the bile duct looking around that will give the for-sure answer from my experience. Going forward, you do need to have good insurance in place for dealing with PSC. There are going to be regular MRCP’s done at least annually, then the ERCP’s will be done as needed when you have blockages that need clearing. $700 is just a drop in the bucket for what’s down the road. One thing for sure you have got to never go back to drinking again if you expect to have a long life. The only cure for PSC down the road is going to be a transplant. And you will have to prove your sobriety before they ever think about considering you for transplant listing. So it’s important now while you are in fairly good health to stay sober, get into a good exercise regimen so that your body will stay strong for the day when that transplant is needed. You are going to need a good support system in place. If there is someone in your family that you trust with your medical needs, take them with you to every appointment. You need an advocate that’s willing to ask the hard questions, that will be able to remember what the doctor says when you aren’t feeling well and will be there for when times are rough. You’ll need folks to be there for you after transplant when that time comes as well. We are here for you to answer all the questions that may come up. We are not here to judge your past actions, but we will give you plain hard facts for you to think about and consider for if you have PSC your life truly depends on the things we will tell you.
Once again a very warm welcome to you. Chime in anytime and we will do our best to help.
Mark,
Thanks so much for your reply. My Bilrubin is .7 and normal is up to 1.2 so it should be in the normal range still please confirm. I stopped drinking 2 months ago and feel like the heavy drinking caused toxins that brought on this possible PSC. The heptologist said he saw scarring on the mrcp so would you say that I definitely have psp or its still a maybe…as that will give me something to pray for if its not a definite in your opinion? I asked him and he said its highly likely but referred to Liver experts at Georgetown who I have yet to speak with. I cannot get back on the insurance until Jan 1 per the ACA rules with carefirst. Ifeel fine other than dark urine which he does not think is from bilirubin as he said for bilirubin to be in your blood and the jaundice that I have self diagnosed he said it must show up as over normal in the blood so he did not even order a urine sample. Lastly you speak of a transplant as if its a definite is that 100% or could that be 25 years later or never?
Thanks again,
Terry
Mark,
I love the hoep that my diagnosis is not conclusive as my heptologist offered no additional info other than he is referring me to a specialist at Georgetown and there was definitely scarring on the bile ducts!
More details of my history to help as you are giving me more info and hope than the doctor.
Blood Work:
01-2012 ALP=134 Everything else normal except CRP at like 3 due to my inflammation from Colitis doc presumed
10-2013 ALP 97 ALT 17 AST 16 Bilrubin .3 Well within range but ALP close to limit
12-2014 ALP231 ALT 39 dAST 42 GGT 555 (x10 normal) Bilrubin .6
10-2015 ALP184 ALT32 AST 36 GGT 382 Bilrubin .3 CRP 2.2
Now This
07-2017 ALP 364 ALT 276 AST 155 GGT? Bilrubin .7 CRP (6.9 Normal Max is 4.9)
Prior to 2012 I only drank a few times a year then started drinking wine 6 out of 7 days heavy.
In last 2 years moved up to Vodka much stronger so I think it was hard on the inflammation of colon and toxic but you have far more exp than I and quite frankly are telling me way more than the doctor. Blows my mind how doctors can be so obtuse and don’t realize that they need to give patients as much info as they can rather than act so uninterested as to not even offer additional information to their patients.
Wow you were not diagnosed until 2011 and needed a transplant that fast??? Scary as heck to me. Thanks for all help.
Terry
2012 when it came in at 134 then Oct 2013 was 97 then Dec 2014 went to 231 and others approached upper limits then Oct 2015 lowered to 184 and ALT/AST at 35 range. Then BAM! Jul 6, 2017 ALP
Terry, no one knows what causes psc. It is an auto-immune disease that is not alcohol-related. That said, alcohol has its effects on the liver, like cirrhosis.
I’ve read the the average amount of time once diagnosed with psc before a transplant is done is 12 years. I lasted just over 4 years.
As you can tell, your blood work will vary each time you have it done. What really helped me was to see how the blood work looked over the last X period of time.
To help our members understand their bloodworm, I posted this chart some time ago. While it is geared to psc, it can apply to other liver function tests.
Thanks Jeff,
Well he did an MRCP and they included a dye in the test also.
My ALT is at 276 while ALP is 364 so ALT is not higher but boy is it up there.
It seems totally mind boggling that someone such as yourself and Mark could get a diagnosis and four short years later need a transplant so I’m assuming you deteriorated rapidly and were in poor health before transplant in order to get one and I am also assuming that your health was not too bad when diagnosed as PSC is usually diagnosed asymptomatic or very close. That is super scary to me brutha. SUPER! Sorry that it went that way and hope you are doing well now. I’m still in shock about it all.
Thanks a mil for your responses!!!
Terry
Terry,
Regarding bilirubin normal ranges, you are right. I was remembering off the top of my head. Sorry about that. I was just now trying to figure your MELD score based on what you provided on your labs but I don’t have enough information. I doubt it’s very high with what you have given us, but when you have a chance go to this link and run your score. This is a way to track the progression of your disease. It’s not a perfect way because PSC patients don’t always move the MELD barometer up as soon as they would like it to, but it gives you an idea at least. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
With PSC, I think for most of us we have had it for a number of years before the symptoms begin to show. Mine first showed with weight loss and itching, that got my attention and then we started down the trail of meeting with surgeons, specialists, labs, MRI’s, ERCP’s, etc. until we finally got that final diagnosis. It stayed relatively calm for the first year or so after diagnosis when they did my first ERCP and I was on medication for the itching plus URSO to thin the bile. But then as I got worse, more ERCP interventions were needed until finally it got bad enough to be listed for transplant.
Not trying to scare you but here’s a photo of my liver after they took it out at transplant. Keep in mind, I have never touched alcohol in my life, but this disease destroyed my liver. I was in my last days, had made my funeral arrangements, etc. when I got that wonderful call, 2 years ago this Sunday the 23rd. “Mr. Wilson, we have you a liver!”. Take care. hopefully yours is not PSC and you are going to be better soon since quitting the alcohol.
I’d say with a score of 6 you are doing really well as far as MELD scores go, BUT you still need to see the liver specialist like you are planning to do and let him check it all out. I can’t remember when I was first diagnosed in 2011 what my MELD score was, but when I was listed for transplant in January, 2015 my MELD was 12. It went to 19 in April and then the third week in July shot up to 36. I was transplanted 2 days later. MELD scores can rapidly change depending on sick that liver is. And you can see by that photo mine was on borrowed time when I went in for my transplant. I was fortunate though through all of this to never get an infection that would have really set me back and potentially causing me to miss that transplant and dying. The Lord was merciful to me for sure.
I did a quick search on one of the liver sites and this site says that “the scores range from 6 in a healthy person to 40. A person with a MELD score of 40 might very well be quite ill and in a hospital intensive care unit.”
Mark thanks so much…I am reading that the average time after diagnosis is 21.3 years before needing a transplant or death…what do you think of that based on what happened to you and Jeff which is scaring the daylights out of me… could I hope for a normal life with a slow or remission etc.? I also read that MRCP is very accurate form of diagnosis but you seem to think there is hope that I don’t have it? which is encouraging!!! He used a dye in the process of the MRCP also.
I too believe in the Lord and while I erred during the depression of my marital decline(bad move) God has protected me and my family all the days of my life and I am hoping and believing he will in this too. My earthly father was a Church Pastor for 30 years before he went on.
Mark,
I would have to agree that God must have had a plan for you to stay here awhile longer based on what you have shared.
I have itchy skin but no build up of bilirubin which is what causes the itchy skin correct??? My skin is just super dry! I went to see a heptologist for one reason…what appears to be jaundice to me and dark urine. So my symptoms are dark urine cola colored, what appears to be jaundice to me, and itchy skin(very dry), and my liver enzymes. Ultra sound came back normal too.
So I am perplexed about the supposed jaundice and dark urine…and also the itching…could those be from just the drinking etc. but yet I have a heptologist stating that I have scarring on the bile ducts so seems pretty conclusive and scarry to me but I will be praying for sure that it is not.
I’m not trying to monopolize here so if I’m asking too much just lmk and I’ll slow it down…just a really scary time for me.
