How I accidentally found out I have PSC

Leading up to the announcement of my boss battle with PSC, I had to have a lot of tests. I found out about PSC on accident.

When I was 19 (10 years ago), I was told that I had a fatty liver. I was given pills to take forever and that was that. I didn’t really understand it or like the idea of taking pills forever, so I saw a different doctor. He gave  me supplements to take for 2 months every 6 months instead. They seemed to work so I left it alone. I didn’t really drink often and ate healthy, so it never really made seem to me. Further doctors never mentioned it to me and I stopped taking anything for it.

All the tests and all the doctors

Around July 2016, I began pee’ing what looked like blood on and off. This continued for awhile before I saw a Urologist. I had a CT scan done. First without contrast then I was sent back again for one with contrast. Then they did a cystoscopy (camera up your urethra… ouch!). The CT without contrast turned out to be pretty useless and the cystocopy was fine. The CT with contrast showed an array of things that I was sent to have looked at by other specialist.

I went to the kidney doctor, liver doctor, OBGYN, and a Hematologist.

Kidney doctor: couldn’t figure out the blood in my urine. I tracked it an figure out that it was from my B12 shots. I have been taking B12 shots for about 10 years now, but never did they make this happen, so I didn’t suspect it.

OBGYN: for a cyst (still waiting to have an ultrasound on it. Doctor isn’t worried)

Hematologist: For a cyst on my spleen and a low white blood count a few times. Doctor wasn’t worried about it and said just to monitor both

Now the liver doctor was different. We are going to say that he is a big ally and one of the best docs I have been to so far. When I came to him, he said that because of the consistently high numbers in my blood work and the CT scan, he wanted me to have an MRI. But he said he wasn’t worried about it really being anything.

Well, it showed the same thing as the CT scan w/contrast. It was a blocked duct high in my bilinary tree. So then I had a liver biopsy. I will write more about each procedure later. The biospy confirmed that it is PSC.

Just when I thought I was done with all of the tests….

Colonoscopy: Ordered

Say wha? Isn’t that for old men?! Yeah…no. Insurance doesn’t even like covering it unless you are 49 or order and that is for prevention. It is to see if I have Crohn’sor Ulcerative Colitis as well. It is common one or both of them to accompany PSC.

Results? We will know more on Thursday! Gotta say, I am kinda tired of IVs, giving blood for tests, and going in for procedures. I think this is the last one for a little while. I have to have MRIs every other year, get blood drawn every 6 months, and if I have Crohn’s or UC, I have to have the colonoscopy once a year.

So, all of this was because my B12 shot started not being absorbed as well. That led to the testing. If it weren’t for that, I may not know until it had progressed much further.


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