question about high ammonia levels

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1323
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 1/20/2009 7:41 PM (GMT -7)   
I am a HCV survivor with 8 1/2 years of SVR. I also consider my self to be fairly well educated on HCV and have facilitated a support group for 7 years. My question is: I have a brother who is incarcerated. He also has HCV. He has been on lactulose for high ammonia for over a year. My understanding is that high ammonia levels are a symptom of decompensating cirrhosis. However, he recently had a biopsy and the results were a stage 2 (can't remember grade) with no cirrhosis. While I'm glad the biopsy did not find cirrhosis, I'm having trouble understanding how he could be having high ammonia levels and needs lactulose.
Can anyone explain how this is possible or could it be an error? He said they took two needle samples of tissue.
Thank you,
Cindy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/20/2009 8:09 PM (GMT -7)   
Hi, Cindy.  I am sorry I cannot answer your question, but just wanted to welcome you to the forum.  Hopefully, someone who has dealt with encephalopathy can answer your question.  You might also want to read the thread on Encephalopathy for possible info.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/20/2009 8:53 PM (GMT -7)   
Hi Cindy and welcome to HealingWell.

It's my understanding also that it is the decompensating liver that doesn't filter out the toxins as it should, that causes the ammonia levels to rise. Why he would have high ammonia levels with no cirrhosis is a mystery to me. Did he have a CT scan or MRI also?

I do know that infections can also play a role in encephalopathy.

Hopefully someone with more knowledge will come online and can answer your question.

Take care.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


1323
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 1/20/2009 8:59 PM (GMT -7)   
Thank you both for answering. No, he has not had a CT scan or MRI. In prison, they are lucky to get their basic medical needs met.
I was wondering if the biopsy missed cirrhotic tissue since they only took two samples. It just doesn't make a whole lot of sense to me.
Thanks again,
Cindy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/20/2009 10:12 PM (GMT -7)   
Your right Cindy. The health care in the prison systems is substandard.
You got me thinking Cindy......... about doing a biopses without doing some kind of test before hand to find any suspicious areas to test. If they are only testing 1 or 2 different little areas of the liver how can they be sure that there is not cirrohosis or even cancer in a different part of the liver that was not biopsied? Can the healthy part of the liver show that there is damage in another part of the liver by testing the biopsied sample? I wish I knew more about it.

Take care.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/21/2009 11:47 AM (GMT -7)   
The first biopsy I had, shortly after HCV diagnosis in '93, showed no cirrhosis.  Subsequent CT scans and MRIs with contrast over the years, did not show cirrhosis, either.  It was only when the left lobe was biopsied at the time of my rt. liver lobectomy in '07, that I was found to have cirrhosis.  So it doesn't always show up on scans, although cancer will.  I think with the first biopsy, I had not yet developed the cirrhosis.  Whether cirrhosis can be in one part of the liver and not another is something I'm not sure of.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 1/21/2009 7:42 PM (GMT -7)   
Just read the above. That's the kind of exchange that makes me keep come back and learning. Joan
Joan
 
Best friend is in ESLD, has HepC and cirrhosis. 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/21/2009 8:32 PM (GMT -7)   
Cindy, I forgot to ask:  What is SVR?
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/21/2009 9:13 PM (GMT -7)   
Welcome to the forum Cindy. I believe that cirrhosis can be missed on biopsy. When my husband was diagnosed with cirrhosis the biopsy was done approximately 2 years after another one that had shown no cirrhosis. We asked why the cirrhosis was so advanced when the former biopsy had shown no cirrhosis. The doctor said that it could be possible that they got a piece of the liver that was healthy. I find it very strange that your brother suffers from encephalopathy but doesn't have cirrhosis. Although, I don't have alot of knowledge with causes of high ammonia levels.

I'll be praying for you and your brother.
Butterflythree
 
There is always hope!


1323
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 1/23/2009 4:26 PM (GMT -7)   
Hi Hep 93, SVR means sustained virological response, the term for an undetectable viral load 6 months post treatment (the closest thing we have to a cure!).
Butterflythree, Thanks for the welcome. I, also, find it strange, that's why I'm asking around. I wondered, too, if they biopsied a healthier part of the liver. I have concerns that there are other lobes that are cirrhotic. Actually, I received a copy of the biopsy today in the mail, and the stage is only 1, with a grade of 2 for the inflammation.
I'm still searching around for this to make sense.
Thanks to everyone who answered,
Cindy

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/23/2009 4:32 PM (GMT -7)   
Cindy, Good luck with your search for answers. I'll continue to pray for you and your brother.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/23/2009 9:26 PM (GMT -7)   

Cindy, thanks for answering my question...and congratulations on the long period of HCV remission (I don't think the word "cure" is used yet.)  I attempted treatment right after I was diagnosed with hep C.  At the time, all they had was Interferon, and it turned out that I couldn't tolerate it.  The combo that they have today still has Interferon in it, so I am unsure if I could handle it.  I have not wanted to try treatment again as I know how sick it makes the patient...and I am finally to the point of feeling decent after all my major surgeries (7 in 5 yrs.)  I keep hoping they will come up with something that has less side effects and is not the poison  skull   that current treatments are.   shakehead  

I was just watching a program on PBS last night about a new cancer drug where the molecules are so large that they doesn't seep into veins and out to other organs.  However, it won't be widely available for another 5-7 yrs. and is not a treatment for hepatitis.  eyes


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 1/23/2009 9:31:34 PM (GMT-7)


1323
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 1/23/2009 9:55 PM (GMT -7)   
Treatment has changed a lot since the days of monotherapy. We've had several people in our support group who have had no side effects at all, but typically, the majority of people experience some sides, but most are able to manage them. Management of side effects gives people a better chance of adhering to the treatment, and adherence increases the chances of the medication being able to do it's job. When I did tx in 2000, it wasn't the pegylated interferon we have now; the side effects were worse. My wonderful support group helped me to get through it. Of course, we continue to be hopeful that current research will produce the magic, side-effect-free pill during our lifetime. Best wishes to you for a continued recovery (7 surgeries in 5 years! Yikes!).
Cindy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/23/2009 10:53 PM (GMT -7)   
Cindy, thanks.  My hepatologist also told me that they have drugs now to handle the side effects.  I will be getting scanned again in March and seeing her afterwards.  Will discuss treatment more with her then.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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