Primary Sclerosis Cholangitis Question

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Pooper Bowl Champ
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Date Joined Jan 2008
Total Posts : 68
   Posted 5/12/2008 8:22 AM (GMT -6)   
 Let me TRY to make my long story short. 17 years ago I went for routine blood work. This showed elevated liver functions. Through the years I have had many tests to determine why.
Ultrasound, Cat scans, MRI, MRICP, Upper GI Series, X-Rays and a few I don't even remember. They even checked for Hepatitis. All these test came back negative. No signs of anything abnormal. No blocked Bile ducts etc. As I stated this has now been 17 years. The Doctors just don't know. They basically said we'll consider this your norm.
After reading some posts on this site I found out about PSC. This now has me concerned. How could it be that ALL the Drs. I have seen never considered this? Not even my GI. Or did they and the test run eliminated this dx.
Just an added note I was only dx with UC 4 years ago.
 
Any Ideas? Thanks!
DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
 


quincy
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Date Joined May 2003
Total Posts : 30986
   Posted 5/12/2008 2:06 PM (GMT -6)   
Did you have an ERCP done? ..curious since 17 years ago, that would have been one of the first tests done.

The MRCP should have shown if you have PSC....

What tests exactly are high?

Are you male or female?

Did you have the AMA test..what were the readings?   It could be Primary Biliary Cirrhosis and not PSC.


quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 5/12/2008 3:16 PM (GMT -6)   

Quincy,

 Never had an ERCP.

I am a Male.

The only test that was high was GGT. Normal is 3-70 I am 204. It goes up & down.

All other LFT's (AST, ALT, and others are Normal)

As stated earlier the MRICP report stated no bile duct blockage. this test was done about 2 years ago.


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 5/12/2008 4:44 PM (GMT -6)   
The MRCP would show the characteristic "beaded" appearance of PSC.
It's not one blockage..per se.

 
Check this out for further possibilities.  What meds are you on..UC and other?
Are you taking any other supplements?
 
Have you seen a liver specialist?
 
Have you had other physical symptoms? 


Don't have an ERCP unless you absolutely need it.
 
quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 5/12/2008 3:48:22 PM (GMT-6)


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 5/12/2008 4:47 PM (GMT -6)   

MRCP  Report stated:

   Impression: Normal MR cholangiopancreatogram.

 Thank you for your input. Anything further?


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
 


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 5/12/2008 5:07 PM (GMT -6)   
Forgot to add :
    Never saw a Liver Specialist because Drs. really didn't seem concerned or did they advise me to. Don't have any other physical symptoms that I'm aware of. Taking synthroid for hypothyroid.
DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
 


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 5/12/2008 8:41 PM (GMT -6)   
There is a rarer presentation called small duct psc that doesn't involve the common bile duct like "normal" psc. Harder to dx, but better from an outcomes perspective. Mayo thinks I may have it in early stages... On URSO for last three years... LFT's come close to normal but not perfect....
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 5/13/2008 12:23 AM (GMT -6)   
UC Dude...but small bile duct psc would still show on the MRCP would it not?

Good the URSO is working for you. It is for me as well.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 5/13/2008 12:28 AM (GMT -6)   
Interesting...I was going to ask you if you had any thyroid problems.

Definitely do the homework for GGT readings...and request tests that could show the connection. Does thyroid increase those readings?
It does state that the GGT tests are the most sensitive, but considering yours is high all the time says there's something going on..not necessarily in the liver.

how re you doing UC-wise?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 5/13/2008 5:54 AM (GMT -6)   
When I was last at mayo in 06 they said I could do another liver biopsy to push for a firm dx. I have never had a MRCP or been offered one. Had 3 or 4 ERCP's and a liver biopsy as well as numerous ultrasounds......

From memory... isn't the alk phos # the one that correlates with psc the most?
 


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 5/13/2008 11:01 AM (GMT -6)   

 Just to keep all updated:

    The #1 indicator for PSC (according to my PCP) is your ALT & AST. Since mine have always been normal it did not set off any alarms with my DR. She also explained that my "Hepatic Function Panel" are all in range. My elevated GGT's are to be monitored, but not something to flip out over (YET). Your thyroid CAN have an effect on your LFT's and since I do have a thyroid condition this can be the cause. Your GGT's can be elevated for many many reasons. This is the one that I have elevated. I just had complete blood work done this morning and will get the results next Tues. UC can also elevate your ALK PHOS.

Quincy, As far as my UC I am doing GREAT! Had my initial flare, got it under control and have been symptom free for about 3 years now. Hope I didn't just jinx myself.

Thanks Quincy & UC Dude for your input. You both helped ease my anxiety about this. However, I do agree with you Quincy "Something is going on". I will be watching this carefully.


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
Levothyroxine .137 for Hypothyroidism
Multivitamin


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 5/13/2008 1:06 PM (GMT -6)   
PBC...definitely keep us updated and just do the research on GGT levels, etc. Don't stick with the most frequented information..dig deeper because there can always be ONE bit of information that could be the key.

UC Dude....I wouldn't think that you'd need a firm diagnosis for a disease that is 99% sure....besides, why would you want to assult your liver further. To me..leave well enough alone, unless you're exhibiting symptoms that have you under obvious distress.

But you already know my take on even ERCPs. And, you can refuse them in the future....a doctor doesn't have to suggest a test that you believe will be less invasive....request the MRCP. As well, if you get it...purchase the CD of it..very cool to see what's going on in there yourself, even if you don't understand it all..

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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