Getting a second opinion?


In February of 2016, only a few weeks after turning 18, I was hospitalized overnight with a bad intestinal infection. I got a lot of blood tests then, and my bile levels came back abnormal. This was noticed by my gastroenterologist, who ordered an MRI.

My gastroenterologist had to battle to get an MRI covered by insurance since I'm so young, but eventually I got it. Soon after the MRI I got a call saying my bile ducts where scarred and that it looked like I had PSC.

The majority of the call he seemed to be positive that I had it, while at the end he back peddled and said that he wasn’t really sure.

I had the in person meeting yesterday and he seemed to flip. Instead he seemed to have the attitude that I didn’t have PSC. However, his point was that the MRI might be a false positive! This really rubs me the wrong way, so I asked him about being referred to a hepatologist but was told that he was one too. I was referred to him by my GP and didn’t know he was both.

I asked him what tests we were going to do to make sure and was told that we would just do another MRI in six months to check that, I quote, if it was a fluke.

I really do not want to go six months not knowing whether or not I have a shortened lifespan! For me knowing is much better than being in limbo.

I want to get a second opinion. Insurance, being the horrible jerks they always are will most likely not cover another MRI so soon. However, I am willing to do any other test no matter how invasive. I know a liver biopsy is an option and ECRP is explicitly recommended by the person who wrote my MRI results. I know both are unpleasant but I am willing to do it if I can get my insurance, Oregon Health Plan, to cover it.

When I was a kid my mom had a similar situation that resulted in her dying of cancer. So the inactivity and unknown is driving me mad with anxiety.

I guess I am mostly looking for both a place to vent and reassurance that I should get another opinion. My family either gets sad and one recommends ‘positive thinking’ to ‘cure’ it. So I don’t feel like talking to my family about this too much.

Hi Brendon,

I am sorry to hear you are going through this ordeal. I am your neighbor to the north in Washington. Have you had your blood tests done again? It may help ease your mind. When you say your bile was high, do you mean bilirubin? Because usually it's the ALP that makes them suspicious of PSC. Also, do you have an IBD? Sorry to ask so many questions, just trying to get a sense of what you are dealing with. Also, we have a Pacific NW PSC facebook group and there are a couple of other large FB support groups online in addition to one for young adults.


Don’t feel bad about asking so many questions. It’s helpful.

I do not have any form of IBD. I actually had a colonoscopy yesterday as a follow up to my previous infection so I know that for sure.

I had forgotten, but I actually had another blood test in between the ER blood test and the MRI. It had the same results. What must have actually been bilirubin, not bile sorry, was abnormal. I take some medicine that requires semi-frequent blood tests so they aren’t very memorable to me.

I’m not on Facebook often but I will check them out, thank you.

I think it's probably a good idea to get a second opinion. If nothing else, it may ease your mind. MRCPs are considered just as good at detecting PSC as ERCPs and they have the benefit of being noninvasive. And liver biopsies aren't diagnostic of PSC because PSC can be "spotty" and it can easily be missed with biopsy.

If I were you (and I'm not) I would take a copy of the MRI and all your blood work tests to a new GI or hep and see what they think. If you would like a recommendation to someone in Portland, I am happy to ask around for you.

Good luck to you!

My healthcare system has an online network so I was able to look up my testing in detail. It was in fact bilirubin that was too high and I actually did have a MRCP.

I’m really getting the feeling that my doctor is simply hesitating to diagnose someone so young with something so serious. Its a bit unnerving.

I’m going get a referral to another hepatologist. I really appreciate your offer, but unless you know someone in the providence healthcare system then I can’t be sent to them. My insurance is very strict and will not let me go to a specialist unless I am officially diagnosed and they determine that all doctors within their system are not component enough with the disease.

Thank you so much for your help. I'll email my GP for a referral tomorrow, she should read it first thing on monday.

how is your phosphatase, what exactly does the observation of the magnetic says
The combination of the two make the suspicion and the comorbidity with IBD. I think it is good to have a good doctor who will have the confidence. Many doctors can make a psychological wreck.Now you need patience until the final diagnosis and optimism. It is a process that wants her time. did you check ANA, ASMA, PANCA etc; Besides the fact that the doctor is not sure is something very optimistic. It may be a transient inflammation. I wish you the best news in what you do. if you want let us know with your news

I’m not sure second opinion helps here. Diagnosing PSC is often difficult and it is only an opinion (“well, this looks like scarring so good chance it is PSC so let’s diagnose it so”). I had several docs studying my imaging and they were not sure but concluded that probably PSC but cannot say for sure.


If your liver function labs are decent he is not necessarily going to order an ERCP. There needs to be a compelling reason to do so, such as elevated bilirubin indicating a possible bile duct blockage. You might go for a compromise with him and ask him to repeat the LFT labs in 3 months and see how things look. If the labs are all out of wack perhaps he might consider the ERCP. Don't try and rush PSC along. Let's hope your symptoms are minimal for many years to come. This is not a sickness that you can expect to hurry up and get on to the next step, it may take years before things really start turning for the worse. Live life today to its fullest and take what tomorrow brings when it gets here. I know how you feel and I know the feeling of not knowing what's going to happen with the future but you have to find a rest and peace in all this as well. Keep your family in the loop as well, you need a good support system in place. Take care.


PSC 2011 / Liver Transplant 7-2015