What my Doctor had to say!
Posted August 15, 2009
It’s been two weeks since my last treatment. Unfortunately, I’m already showing signs of relapse. My eyes are drooping more, and it’s getting harder to keep them open when I yawn or smile. On Tuesday, the numbness in my right leg returned—though thankfully, it hasn’t affected my ability to walk.
On Thursday I met with my neurologist for the first time since treatment. She was shocked at how much I’ve improved since she last saw me. She told me that, because of the progress I’ve made and the likelihood that I still have thyroid cancer, what I’m dealing with is probably Paraneoplastic Syndrome—a condition caused by the immune system’s response to cancer elsewhere in the body. In other words, my immune system is producing thyroid antibodies to fight the cancer, but those same antibodies are attacking my nervous system.
I asked if that meant I have Hashimoto’s Encephalopathy. She said that since my immune response has a known trigger (the cancer), it’s technically not HE. Everything about it looks the same, but HE only applies when there’s no underlying cause. So, I’m not one of the roughly 1,000 confirmed HE cases—but I’m still in rare company. Paraneoplastic Syndrome is extremely uncommon, and even rarer in thyroid cancer patients.
I actually take that as good news. There’s no cure for HE, and it tends to relapse, which would mean a lifetime on oral or IV steroids. Considering the long-term side effects, that wouldn’t be easy. But if this is Paraneoplastic Syndrome, and we can eliminate the cancer, the neurological problems could eventually go away.
In the meantime, they plan to start me on monthly IV steroid treatments. The biggest issues with steroids come from daily use—so giving the body a break between doses reduces side effects.
The next big question is the cancer itself. I’ve been in touch with my endocrinologist, who had paused treatment while we focused on the neurological side. Now we’re moving forward again with the Radioactive Iodine therapy, hopefully within the next few weeks.
Thanks to everyone following along—I’ll keep you updated as this next phase begins.
—Odell
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