The interferon and ribavirin chemotherapy has been over for
eight months. That seems to be an appropriate amount of time to examine the
long-term side effects of the therapy. In an early post, (which you can get byclicking here), I listed all the side effects of both the polymerase inhibitor test drug RG7128 and the standard interferon and ribavirin chemotherapy. It is
a long list. While some of the side effects are relatively mild, a significant
number of them are potentially very serious.
The one on which I'd like to concentrate today is the effect of the
therapy on the thyroid gland.
In the initial literature handed out at the beginning of the
experimental trial, it was noted that the functioning of the thyroid might be
affected and in some cases the effects might be permanent. The wording of the
literature led one to believe that while thyroid function might be affected
during the trial, there was a good chance that the thyroid would return to
normal after the interferon and ribavirin was stopped. At about the 6-week mark
of the trial my thyroid function numbers began to deviate from normal. The
level of TSH in my blood (which stimulates the thyroid when it’s activity is
low) began to rise. During the next few weeks it tested at 10 iu/ml and then at 25 and 30
and then finally at 55. This level indicates that thyroid gland is
not functioning remotely normally. At this point I was put on levothyroxine and
within about 3 weeks my thyroid level was back to normal. I stayed on the
levothyroxine for the rest of the time I was in the experimental trial and
continued it through the transition to the standard of care interferon and
ribavirin chemotherapy. I was on that program for an additional 13 months and I
stayed on the thyroid medication the entire time.
When the standard chemotherapy ended I talked to the
gastroenterologist at Kaiser who runs their Hep C program about procedure that
I should use to wean myself off the thyroid medication to return to normal
thyroid function without medication. In reply to this question, he replied that
in his experience the standard of care interferon and ribavirin combination
usually burned out the thyroid gland and I would most likely be on thyroid
medication for the rest of my life. Knock me over with a feather. This was not
what I had assumed to be the case nor was it the case that was presented in the
initial discussion of side effects at the beginning of the experimental trial.
I have no idea what my reaction would have been if the potential thyroid
effects had been described in that manner. I may have decided to go through
with the trial anyway and may not have, but I do wish that the information had
been stated in a very clear and concise manner. It leaves one with the feeling
that the research doctors know damn well that the thyroid side effects are
likely permanent, but that it is not to their advantage to say that. If you
tell someone that there is an interferon-based regime that, with the addition
of an experimental drug, will have a 75% chance of curing hepatitis C but will result
in the permanent sacrifice of the thyroid gland, how would they find enough
subjects for their drug trials. Would anyone short of those whose life was
truly in danger because of the effects on the liver of hepatitis C be willing
to go through an interferon-based therapy?
If the choice had been put to me that way, I certainly don’t
know what I would have done. I knew
then that my liver was not in bad shape. My liver functions were abnormal and
my viral load was very high but my liver itself was not badly swollen and did
not exhibit heavy scarring. I might have just said let's wait till newer
therapies become available, though at the time it was not known that any drugs
would be coming through the pipeline soon that did not involve using interferon
and ribavirin as well. I don't know what I would have done but I wish I had
better information when I made the choice.
Not wanting to believe that I was one of the people whose
thyroid was burned out, I decided to wean myself off the levothyroxine and see
what happened. I started out by taking my normal dose (100 mg) for the first
two months after the end of the therapy. At that time I reduced my dose to one
half (50mg) for the next month and then reduced it further to 50mg every other
day for another 6 weeks. I stopped taking the levothyroxine for the final 3
weeks before my six-month viral load test. I asked my doctor to test my thyroid
enzyme levels at that test because I had been attempting to wean myself off the
levothyroxine. He agreed and when the test came back my TSH hormone level was
at 53 indicating that indeed my thyroid was not operating and may never operate
again. So I am back on levothyroxine and probably will be for the rest of my
life. It's an uncomfortable feeling to know that your health will always be
dependent on your ability to secure a supply of a particular drug that provides
an essential ingredient for your survival but it's certainly not unique to me.
People with diabetes have had to deal with this for a very long time, as have
people with AIDS and folks with other diseases that I am no doubt forgetting
about. It's just one of those things.
But it's something to consider if you are in a position of
entering any therapy or drug protocol in a drug trial that uses interferon.
Whatever benefits you are going to be getting from the use of interferon will
most likely come at the cost of your thyroid gland. Weigh it carefully. It may
be the lesser of two evils and you may decide to go-ahead with the therapy but
always remember the costs that will be exacted.
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ReplyDeleteI did not know this about the thyroid gland and Interferon. It's good to know as I am in the midst of making a decision about tx now.
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