I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Wednesday, February 29, 2012

Long-Term Side Effects - The Thyroid Gland


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.

3 comments:

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  2. I 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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