Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.

Hepatitis B Community

This forum is an un-mediated, patient-to-patient forum for questions and support regarding Hepatitis B. Topics in this forum include but are not limited to, Causes, Diagnosis, Family and Relationships, Living With Hepatitis B, Research Updates, Treatment, Success Stories, Support, Symptoms.
 | 

HR: In Response to Your Question

by zellyf, Apr 23, 2008 12:05PM
*****How did your GI justify not to try to determine where you stand with your liver disease?

He was really insistent that with such a low viral load the chances of finding significant fibrosis were low and not worth the risk associated with biopsy.  He really hit the risks of biopsy hard and I feel he even overstated them as I understand them.  He said that even if we found significant fibrosis what would we do? Drive my already low viral load down lower and then maybe not even then see a decrease in ALT?  Again, not worth the risk associated with biopsy.  

Well, ok, I wasn't sure I agreed but I allowed that to stand for the moment and then asked about fibroscan.  I didn't even ask if *he* would order one.  I asked, given that I thought Dr. Gish might have one available in our area, if I should pursue it...leaving open  the idea that I would pursue it on my own out of pocket.  That was when he said, "This wasn't tested on people like you."  That was when I said, "But if it just measures elasticity then why would the source of damage matter."  We know how he replied.

At this point I think I will have to pursue fibroscan on my own or switch doctors.  I do not understand his reluctance to look at my liver.  He was very willing to do a follow-up on my MRI for suspected hemangioma with another MRI when I thought ultrasound was more standard and cheaper. He agreed to more frequent LFTs.  

Forgot to mention that I asked about a "smoldering" hepatitis and my doctor was really dismissive.  He said, "There is no such thing as smoldering hepatitis.  That is some layman's term and not a medical term.  There is active hepatitis and inactive hepatitis and your's is inactive."

Sidebar if you've time- I borrowed my anti-fibrotic regimen from your advice to the Hep C board.  Is there any reason why this would not be suitable for my situation?

And I knew I should have paid more attention in my Far East politics class.

My doctor seemed slightly annoyed with me and said, "I know you really like all of these studies..."  
Member Comments (24)

by zellyf, Apr 23, 2008 12:32PM
Additionally: do my ALT levels make it any more likely that the liver lesion/s seen on ultrasound (saw 2) and MRI (only saw one 5mm lesion) are HCC rather than hemangioma.  Both techniques had the lesion/s has highly likely to be hemangioma.

by Hepatitis Researcher, Apr 23, 2008 01:19PM
To: zellyf
MRI is quite capable to distinguish between HCC and hemangiomas, better than US. The ALTs give no clue.

There are dozens shades of gray between "active'  and inactive hepatitis. There are plenty of patients with near normal ALTs, which nevertheless have progression of fibrosis.  The progression of fibrosis has its own, independent factors from the "activity" of the hepatitis, albeit they are linked in a rough sense.
The dangers of a biopsy are very small compared with the dangers of an unappreciated progressed state of liver fibrosis.
While the VL is very low, it could still be lowered by 3 or more logs - unknown into the depth of current "UND" limits and the ALTs - if caused by chronic HBV - are likely to normalize.

If your Gi would have listened to the emphatic presentation by Dr. Lai regarding Asians with a "low' VL and their unrecognized risk in quite a few cases, he would possibly think differently. Lai challenged the common simplified thinking and pointed to the now existing ability to prevent further progression using the potent antivirals and to the need to look into the true state of affairs using a biopsy in order not to miss the cases that can be helped. This was 2 years ago at the Boston AASLD.

The antifibrotic regimen is good for any form of fibrosis, its major problem lies in its cost.

by Hepatitis Researcher, Apr 23, 2008 01:22PM
BTW, what happened to yesterdays thread?

by zellyf, Apr 23, 2008 01:46PM
To: HR
Thank you, HR, I will look for Dr. Lai's presentation again.  Do you think it behooves me to bring them to his attention or do you think I'm better suited pursuing this line of reasoning with a hepatologist?

I will bump up yesterday's thread.  Steven suggested I consolidate my remarks into this one for you.

Cheers and thank you again!

by Hepatitis Researcher, Apr 23, 2008 06:14PM
To: zellyf
Dr. Lai's presentation was in one of the industry sponsored satellite meetings, so there is no way you can obtain a written representation of what was said, unfortunately. It was not too well received - despite the fact that his data/graphs were quite convincing - , because it went beyond the common simplified algorithms and beliefs. But it is from these meetings and hundreds of papers and dozens of presentation that one has to form an opinion that embraces all the critical variations that exist in hepatitis B.

To clarify, I also lean towards the opinion that your liver damage is rather mild. But it might not be and there is no easy way of knowing other than the methods mentioned.

I think that Dr. Gish has not received his fibroscan machine yet, but I am not sure.

by zellyf, Apr 23, 2008 07:16PM
Well, that would explain why I've been having a devilish hard time trying to find it.

Dr. Gish is an in-network doctor for me.  Whether he has the machine or not, I think I might make an appointment to see him and get his opinion.  

Thanks, HR, your input is truly appreciated.

by CoWriter, Jul 22, 2008 06:11PM
To: zellyf

Here's Dr Lai's presentation from the 2006 Meeting in Boston.  However, there have been some changes in the last couple of years, so you may want to check out the more recent info.....

"Hepatitis B Advanced Certificate Program III.   Bridging Cultural Differences to Improve HBV Treatment."  (includes 19 topics, June 2008)

http://www.projectsinknowledge.com/cp/1802/index.cfm?thspage=curriculum&jn=1802



Dr Lai.  Refining the HBV Treatment Paradigm (see fifth topic) "Duration of Therapy. How long do you treat?"

http://www.projectsinknowledge.com/Init/G/1752/1752_dkp_0607.swf



Part 3..."Spotlight on New and Investigational Agents"
Dr Lai discusses 2-year results from the phase III GLOBE trial comparing telbivudine and lamividine in patients with chronic hepatitis B virus infection.

http://www.newsmakersinmedicine.com/Hepatology/index.cfm



Abstract, Dr Lai.
"Hepatitis B Surface Antigen loss in antiviral treated patients with HBEAG(+) chronis Hepatitis B (CHB) infection:  Observations from antiviral-naive patients treated with Entecavir (ETV) or Lamivudine (LVD)"

http://www.newsmakersinmedicine.com/Hepatology/abstracts/992.pdf



Abstract,  Dr Lai  (Page 2)
"Telbivudine Globe Trial:  Maximal Early HBV Suppression is Predictive of Optimal Two-Year Efficacy i Nucleoside-treated Hepatitis B Patients"

http://www.newsmakersinmedicine.com/Hepatology/abstracts/110.pdf

by zellyf, Jul 22, 2008 07:02PM
Thanks, CoWriter, as HR said I think the discussion that pertains to this case wasn't done in a forum where it was recorded for posterity.  But, interesting stuff nonetheless.

by cajim, Jul 22, 2008 08:58PM
To: zellyf
From my experience with my doctor, I think some doctors have a big ego.  They feel authority threatened when their patients ask too many questions.  My wife repeatedly reminded me to act dump so that the doctor can enjoy his authority and doesn't feel threatened.

Could you have shown so much that you know that your GI doctor felt threatened?

Maybe some of the deplomacy techniques that you learned in your poli sci training could find good use with your GI doctor.

What do you think?

by zellyf, Jul 22, 2008 09:54PM
I really tried to be soft spoken and phrase everything as a question.  Really.  I reminded myself of it before I went in even.  I don't know.  I will certainly keep your good advice in mind for next time.