NEWBIE with "liver out of whack" tell me what to ask/do please

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katydid1994
Veteran Member


Date Joined Oct 2004
Total Posts : 504
   Posted 9/3/2007 2:39 PM (GMT -7)   
Hello,
 
I am new to this forum, but not healingwell.  I have crohn's.
 
My GI has been very concerned about swelling in my legs, feet and colon.  I saw one GP who called it just fluid retention, after no relief with lasix, the other GP called it vascular insufficiency.
 
I figured that was that, but with the colon swelling, that she saw during my colonscopy, the GI strongly asked me to see the new internist in town.
 
Nice guy and he ran tests on heart/liver/kidney.  After two weeks, he calls 5pm on friday, right before a weekend and holiday.  He tells me, heart/kidney is fine.  Vitamin D level is undetectable  (oops! I am very lactose intolerant)
 
The liver he says shows inflammation and he thinks it is not synthesizing proteins.  So I am to come in for the hepatitis bloodwork and he is scheduling an ultrasound and calling my GI for a specialist recommendation.
 
My questions are:
 
1) Does it seem hasty to be making a specialist appt now, before the hep test and ultrasound?
 
2) I am going to request a copy of the labs, what could I look for that would be a flag of something serious?
 
3) Does a regular GI normally handle a biopsy if I then need that, which I assume I probably will after reading up on things?
 
4) The availability of hepatologists seems low, I live in a rural area.  The closest seems to be Winston Salem according to a site I found for american liver disease.
 
I really wish they had called earlier friday, I would of went in for the test. asked for results and called my GI myself.
 
Thanks in advance!
Diagnosed with Crohn's August 2006
Age 30
Asthma, Rosacea, Venous Insufficiency, Malabsorption and Excessive Bile production
Questran 1 package per day
Colocort Enema 2 per day
Metamucil
Advair 100, 2 per day
 
 


katydid1994
Veteran Member


Date Joined Oct 2004
Total Posts : 504
   Posted 9/4/2007 7:56 PM (GMT -7)   
UPDATE:

Took test for Viral Hep today, scheduled ultrasound

What is elevated:

AST 55 Range 0-40

ALT 84 Range 0-40

Prothrombin 17.8 Range 8.7-11.5

APTT 72 Range 22-36

Vitamin D <7 Range 32-100

Any thought?

Bilirubin, Albumin, Alkaline phosphatase is okay
Diagnosed with Crohn's August 2006
Age 30
Asthma, Rosacea, Venous Insufficiency, Malabsorption and Excessive Bile production
Questran 1 package per day
Colocort Enema 2 per day
Metamucil
Advair 100, 2 per day
 
 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/4/2007 9:33 PM (GMT -7)   
Hello Katy, Welcome to the hep forum. It's great that the bilirubin,albumin and alk phosphate are normal. After going over some of my husband's lab reports the only other test he had done that you had was the vitamin D. And his was only slightly low. They didn't do any of the others that they did on you, that I could find. And it's better having a specialist called in too early than too late. Hepatologists are alot more knowledgeable about liver disease than GI's. At least my husband's were. Ask your GI to explain everything to you and have him/her answer any of your questions. If he or she doesn't or won't then have your PCP refer you to a Hepatologists. You don't want to take any chances with your liver. Good Luck! Pink Grandma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/5/2007 10:21 AM (GMT -7)   
Katy, I might add that it sometimes takes a wait to get an appt. with a specialist, so referring you now is a good idea.

In answer to your question about biopsy, yes, a regular GI can do it. Also, with your liver enzymes elevated, something is definitely going on. A CT scan might not be a bad idea.

Good luck!
Connie

katydid1994
Veteran Member


Date Joined Oct 2004
Total Posts : 504
   Posted 9/5/2007 5:35 PM (GMT -7)   
Thanks for the help!
Diagnosed with Crohn's August 2006
Age 30
Asthma, Rosacea, Venous Insufficiency, Malabsorption and Excessive Bile production
Questran 1 package per day
Colocort Enema 2 per day
Metamucil
Advair 100, 2 per day
 
 


ryno
Regular Member


Date Joined Sep 2006
Total Posts : 32
   Posted 9/8/2007 11:15 PM (GMT -7)   
The labs that you posted basically say that your liver is unhappy.  I dont really have time to go into great detail...it's 2am.  I noticed that in your sig you have "excessive bile production", maybe related? (hepatocellular stress)? It's not uncommon to see livers become "unhappy" in the presence of CD or UC etc.  As far as hepatologists, they are very smart :)... Chap Hill and Duke are not far from W-S
 
Hope all is well
MDchronie


katydid1994
Veteran Member


Date Joined Oct 2004
Total Posts : 504
   Posted 9/12/2007 8:57 AM (GMT -7)   
Thanks!

UPDATE:

Ultrasound shows liver at normal size with no lesions, ducts look fine in size and flow.
Appears to be fat infiltration or hepatocellular disease.

Gallbladder looked fine, except for sludge in it's neck.

So, I have an appt with the Internist monday and the GI in a couple weeks.

What gets my goat, is I got a copy of the results from the hospital. Neither dr's office has yet to tell me anything about the results, just that I need to come in. Well, I would be panicky if I hadn't gotten the paper and read it myself.
Diagnosed with Crohn's August 2006
Age 30
Asthma, Rosacea, Venous Insufficiency, Malabsorption and Excessive Bile production
Questran 1 package per day
Colocort Enema 2 per day
Metamucil
Advair 100, 2 per day
 
 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/13/2007 7:51 PM (GMT -7)   
Hello Katydid1994, I don't think doctors call the patients as often anymore about test results. They don't always have the time. You may need to call him. My husbands GI didn't even call us when my husbands CT scan showed a tumor. We found out a couple of months later from his primary care physician. That taught us a big lesson.......Don't wait for the doctors . That's when I started having all my husband's bloodwork faxed to me. I had the results in hand when I would call the doctor to discuss what the next plan of action would be. When you have a life threatening disease you have to be proactive in your or your loved one's healthcare. Leaving it up to someone else.... may prove to be deadly. Hope you are feeling okay. Have a good evening :-) Pink Grandma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/13/2007 9:09 PM (GMT -7)   
Katy, Pink Grandma is right on all counts. I believe the last time I was called with test results was in '93 when my GI called to confirm that my liver biopsy showed my hep C to be chronic active.

It's a good idea to start requesting lab results and MRI/CT findings, etc. You will also find that there are errors in the transcribed visits. For example, I just got my liver surgery records and the P.A. stated I was a 53-year-old woman...I'm 64. There were also a couple of omissions of the Rxs I take.

Connie
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