Liver enzymes

[slwp]

I am having major issues with bile duct blockage. Had an ERCP 6 weeks ago, liver enzymes were OK now had blood work done and all were very high especially ALP. Wondering if this has happened to anyone else.
I am scheduled for another MRI and possibly another ERCP. He is also testing me for primary billary cirrhosis , which is new because of the high ALP.
I am scared to death, I need to stay off the Internet because most has been doom and gloom.

[slwp]

I think you are right I need a hepatologist My doc is a gastro guy and a DO not sure what that is but he is supposed to be the best in the area. Which does not say much since I live in a small town in the desert. My next step is the Mayo clinic in AZ hopefully I will get some help.

Helps to talk, thanks.

[fntn]

Wow, it seems we're both very healthy, active people who've been blindsided by their own body's ... Amazing. Yes, every night is a battle with extreme fatigue driving me into bed and then pain driving me back out shortly after, 3 or 4 times each night is the norm.

It's taken a bit of work but I now have a wonderful team of doctors, both local and regional. I would think that, in your case, going to a hepatologist is the way to go - a GI would be struggling with your complex issues I think. That's what I have going on, a good hep assigned with a transplant team and a great surgeon as well for my liver tumor issues. I also have an assortment of specialists too and my poor but very good PCP who has to try and coordinate all this craziness.

Every day is a battle as you well know. Welcome and hope things fall into place for you with your next visits.

[slwp]

It does seem to come in waves, never been sick in my life. Was diagnosed with Barretts esophagus two years ago, started high dosage of PPI seems that is when all the other problems started. I never thought I would be facing something this serious.
They are also thinking I may have overlap with autoimmune hepatitis. I also have cholangitis, they just removed stones from the bile duct with an ERCP that is when all the Liver enzymes went crazy. Had the blood work 6 weeks after procedure just as a follow up thinking that was the end of it. He did the ANA and AMA blood test that is what I am waiting results for, I tested positive on the AMA in November of last year. My ALP was normal at that time.

Looks like we are in similar situations.

I think the worst part is the sleepless nights I wake up every 15 minutes and all the worst case scenarios come to mind.

I hope you are doing well, do you go to a a gastro doc?  I'm thinking of going to the Mayo clinic in AZ. I am from WI and see you live in MI have you gone to Mayo in Rochester and your thoughts on that?

How do you feel daily?

[fntn]

Lol, well slwp ... I don't want to scary you away from this "comforting" site too! I'm quite a mess actually, with a combination of two overlapping autoimmune diseases. I saw that autoimmune is one of your interests so that seems strangely familiar.

My primary disease is very advanced PSC (primary sclerosing cholangitis) with all it's bells and whistles. Decompensated ESLD with ascites/edema/GI bleeding and a number of "scary" things that like to keep showing up in my MRIs. So basically, my liver's kaput.

I also have an overlapping CTD (autoimmune connective tissue disease) that's intent on making as much extra trouble in my life as possible, most likely MCTD.

You're right, this site has quite a number of very experienced and knowledgeable people. So you're at the right place. Let's hope your new data will shed some light on what's up with you and that it's something simple.

[slwp]

Thanks so much for your reply.
My liver enzymes were elevated before ERCP but not the ALP now that has doubled since the ERCP.
They did the MRI and MRCP yesterday, should hear something today. You are so right about the diagnostic part, it is hell, the waiting and the unknown are unbearable.

What is your disease?

This place is so comforting, I have to stay off the negative sites.

[fntn]

Hi slwp -

You mention that your blood work was previously normal but high now. Is this a pattern in your serum data as well, with fluctuations between normal and elevated. What was the original reason for the ERCP and MRI if the enzymes were ok, pain/jaundice? I assume when you say they are doing another MRI that they will also be doing a MRCP along with it? Sometimes seeing the bile duct system in it's undisturbed (not artificially extended/inflated) state is the key in determining what's wrong.

You're right about the internet and "end of the world, here we come", so try to not to let it get to you. Even if you prove to have something unpleasant, this is simply the diagnostic phase and there are many things possible that are treatable, I guess I'm probably one of those not so nice stories you've come across but I'm still here, battling my particular flavor of bile duct/liver disease. You're in the right place here in this forum with many others like me.

Good luck with your next set of procedures.