LIVER DISORDERS COMMUNITY
Is There A Hepatologist In The House?

Is There A Hepatologist In The House?

I'm looking for a whizz--bang hepatologist - Someone with the brilliance of a Dr. "House" (as in the TV series).

Last summer, I fell profoundly sick. Impossible fatigue, upper right quadrant bloating, bouts of generalised itching that would wax and wane, and the gratuitous pale stools, dark urine, and flatulence - but no noticeable jaundice. Time to see the Doc (and straight away), as I was certain I had one of the "heps".

Dr. appointment scheduled - and symptoms had gradually improved by then - (basically save for the itching and on and off feeling of "hepatomegally). So the hep screens came back neg (a, b, and c), and the labs looked ok save for ALT of about 150. Follow up scheduled. Next labs, looked ok again - save for high ALT (about 96 that time), so more tests ordered: I was tested for many esoteric diseases - autoimmune hep, hemachromatosis, wilson's, etc. - and my ceruloplasmin was 1 point low - so next came the 24hr pee test: it looked ok - and at that point, I scheduled a follow up appt to see what was happenning. ALT was still up, so next an ultrasound scheduled - and the results reviewed and looked ok, so no (apparent) sign of obstruction, primary biliary cirrhosis, or primary sclerosing cholangitis.  Next in my saga, a biopsy was ordered - and with a wilsons dry copper weight test. The biopsy came back showing no marked cirrhosis, it did show a bit of steatosis, and my copper was at appx 60ug per g (but for the last 4 months I had been popping about 400 mg of zinc daily to the point of nausea and avoiding chocolate, shellfish, nuts, and other high copper foods - so I *may* have skewed the result down).

SO, as of today, my energy has largely returned, I also have linked a mild but lingering pre-existing problem to all of this (which I never gave a lot of thought to when it all cropped up about 5 yrs ag) - where I would have bouts of what I thought "gastritis" or maybe gall stones - causing mild upper right quadrant bloat - but it would come and go last a week and be in hibernation for a couple of months, that, and I would occasionally notice a mild itch on my arms - and attributed it to an allergy - but now I think that "whatever I have" these were early warnings/manifestations.  Presently, theres still the lingering on and off itch, and the random "bloat" around my liver/spleen, and the occasional slightly darkened urine. I too have a bit of a gas problem (seems to be independent of what I eat). I have noticed sodium seems to make the itch more pronounced about 90 minutes after consumption. I also have noticed one newer symptom and thats a bit of random and transitory sharp pain from around my liver area (like maybe a stone moving?).

ANY brilliant docs out there that may have a clue? did my ultrasound miss something in my bile ducts??? might I have Hep C (which im told is sometimes hard to find) ? ANY thoughts? Your help would be greatly appreciated

Sincerley,

"Jack"
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Well first off I would say, since I have liver disease of some sort and my so called biopsy never got any liver tissue so I can't say for sure what it is either, that number one, your ultrasound could miss a thousand things, espcially stones that are too small at the time to see on that test.  I had one done and developed gallstones, my gallbladder stopped working entirely and that had to be removed in a scheduled urgent surgery.
  Now that I have liver disease I do have some idea about it, particularly with regard to the itching, which is a common sign of hepatitis.  It is also a common sign of many other things so on its own that symptom can't pinpoint the diagnosis.  Pale stools and dark urine however add to the chance and very strongly that you do have liver disease.  
I am not sure what you mean when you say the biopsy showed steatorrhea.  I know what that word means but not sure how a liver biopsy would demonstrate this--usually the stools do.  
Overall you could have gallbladder disease and/or liver disease I would say from your description.  Personally I think you need to have a random liver biopsy to see what different parts of your liver are doing.  That is the one they supposedly did on me but failed to do. I may also want to request a HIDA Scan to see how your gallbladder is functioning, and finally, since Celiac Disease can underly all of this(as in my case so I admit I am biased here), I would insist upon the antibodies in the blood, but be sure to ingest protein from wheat, rye, or barley or anything made with this offending protein generically referred to as "gluten" prior to that serology being done. Any Gastro worth his head up his butt(or her head up her butt, as the case may be) will also wish to do a colonoscopy.  Don't worry--these days they knock you out for that.  That would be the workup I would insist upon in awwwwwwwwwl its glory and comprehensiveness.
  Good luck.
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Wow! that plain "sux" (going through all the motions only for them not to get a sample - how is that???).

As for my symptoms, well, I had the phone consultation from the head of our hepatology transplant team here at the U (he's a bright bright man - but doesnt see patients other than for biopsies and xplants). He's the one that noted "steatosis" (fat) - but no visible fibrosis or cirrhosis.  - I would like to know if this could be causing my abdominal "bloat" and discomfort - and my itch (more on that below).

I have had the antinuclear antibodies test (i didnt eat wheat that day that i recal though) so I *think* I have been tested for celiac disease, along with autoimmune hep, wilsons, hemachromatosis, etc - and of course the "ABC's " My health has improved since this started (stools are back near dark and urine is more often yellow or clear than like watered diet coke). But damn the upper right quadrant annoying fullness and the itch - and heres the kicker: My total bilirubin is in NORMAL RANGE - ugggh!!!

Well, my next appt with the liver doc is Tuesday - so more to follow - and thanks for the input!

Jack
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