Post tx metabolism problems

[dointime]

Hello Dr Dietrich,

I am 10 months post tx, pegasys, ribavirin and 12 weeks telaprevir.  I had a breakthrough at 9 months so still have the virus but liver damage mild.  

Now I have all the symptoms of hypothyroidism, although my blood tests show tsh and t4 within normal range.  I have an appointment with an endocrynologist to find out what is wrong.  The symptoms which distress me most are fatigue and sweating/freezing.  My throat also feels tight.  

What tests should I ask the endocrynologist to do to find out what is wrong with me?  What would you suspect as being wrong given that the virus and interferon are both implicated.  I had some fatigue before the tx but not this bad.

Many thanks,
Dointime      

[Douglas Dieterich, MD]

As you know hypothyroidism is quite common among patients who take interferon and is accelerated by it. There are many sophisticated thyroid tests that your endocrinologist can do. I would also ask him to test you for cushing's disease in view of your fatigue. Good questions all.

[dointime]

Hello again Dr Dietrich,

I note your reply to Jim.  Just wondering if you have anything to add to me regarding my question?  

Jim - no problem - you always add value and glad to have your comments.

dointime  

[jmjm530]

Thanks for you prompt response. In an ideal world more resources would be put toward studying the real extent of post treatment symptons and their management, although not sure who would foot the bill.

When you get a chance, please respond to "dointime's" question (above) as he was the one who started this thread, and is probably a bit pissed off at me for taking it over!

-- Jim

[Douglas Dieterich, MD]

A lot of what you say is true. However the people who are fine and have no symptoms are not on this forum so it is a selected sample. I have no doubt about interferon hangover going on for a while after treatment stops and you are correct most hepatologists dont see them. I took interferon for a total of almost 3 years the last time 18 months and definitely had a hangover for at least a year. Everyone repsonds differently and the treatment of those issues have to be personalized. It is very hard to put a finger on the exact nature of these, but they do exist. Good luck with it. DTD

[jmjm530]

Sorry to butt into "dointime's" post but the "quota" was full and I thought my question pertinent and of interest to many here.

As you're probably starting to notice, the majority of questions you're getting  are about post treatment problems. This is not surprising since people have frequently been reporting these issues in our main forum. And while you have stated that most of these issues disappear within a year, that has not been the collective experience here, as I see it.  

Don't expect you to go through all these threads -- and this is only the tip of the iceberg, but I included a  partial list of what I'm talking about at the end of this post.

So my question is this, and I pose it with utmost respect --  both to your reputation as liver specialist and the opportunity you're giving us  here at Med Help -- do you think it's possible that liver specialists as a whole are underestimating the extent of post treatment problems for a number of reasons?

Reasons including the fact that many of us seek help elsewhere (outside of our hepatologists) with these problems after SVR; and the fact that many of us may underplay these issues with our liver specialsts, because frankly what we often hear that we shouldn't be having these long-lasting problems from treatment, but we are. And lastly because human nature might  dictate that someone focused on curing a disease may not focus acutely enough on some of the negative wash churned up by the treatment?

Again, want to thank you not just for your contributions to this forum but for your body of work both in research and treatment.

Following are a just a few of the threads from our main forum that deal with post treatment problems -- and again, many of these problems last well beyond a year post treatment.

-- Jim

PARTIAL LIST OF MED HELP THREADS ON POST TX SIDE EFFECTS

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
http://www.medhelp.org/posts/show/303629