A note about my Treatment

Posted mid-2009

I wanted to update you on how my treatment is going, but first I should review where things began. In April my health took a major turn for the worse. I developed extreme fatigue and partial paralysis on my right side. I saw both my endocrinologist and my neurologist. The neurologist believed I had advanced brain cancer, while my endocrinologist continued looking for a recurrence of my thyroid cancer.

My thyroid hemoglobin (TG—thyroid autoimmune antibodies) count is elevated, indicating recurrence, but ultrasound, PET scan, and needle biopsy all failed to find it. The Thyroid Tumor Board at OHSU has recommended another round of radioactive iodine in hopes of eliminating it. That recommendation came before neurology’s latest test results were back.

As for brain cancer, I’ve had about ten MRIs in three years, all clear. The spinal tap also showed no sign of cancer. For three years I’ve believed I might have a condition called Hashimoto’s Encephalopathy (HE).

Hashimoto’s Encephalopathy is difficult to diagnose. It can resemble many different neurological disorders or acute hypothyroidism. Diagnosis usually comes only after ruling out other illnesses. It’s often misdiagnosed, but when untreated can lead to irreversible dementia, coma, or death. It isn’t curable, but it is treatable, and with proper therapy the long-term outlook is good.

I believe I developed HE because of how my facial paralysis began three and a half years ago—just hours after a fine needle biopsy. I think the biopsy triggered my immune system into overdrive, creating thyroid antibodies that started attacking my nervous system. In trying to fight cancer, my body began damaging its own nerves.

Before starting treatment, my doctors wanted to completely rule out brain cancer, so I endured three spinal taps in one month. All were negative. That cleared the way for a presumptive diagnosis of HE and the beginning of treatment.

The therapy they chose is called pulse steroid treatment. It involves large doses (1,000 mg) of steroids delivered by IV for three days in a row. The goal is to “reboot” the immune system—when the body detects excessive steroid levels, it temporarily suppresses immune activity.

The treatment carries risk: some people suffer heart attacks or severe side effects, and insomnia is common. On the morning before my first treatment, I took stock of my condition—I needed a cane just to walk, all my limbs were weak, I was sleeping ten to eleven hours a day, and I had very little control over my lips. When I tried to smile, my left eye closed; when I yawned, both eyes squeezed shut so tightly I sometimes had to hold one open while driving. I even took a photo of what “smiling” looked like.

At the infusion center, they started the IV. Within five minutes—after about 250 mg of steroids—I began noticing improvement. I could move my lips. When I smiled or yawned, my eyes stayed open. I was in tears, overjoyed that something was finally working, and sad that Linda hadn’t lived to see it—or for me to kiss her again, which she missed. The only unpleasant surprise was the awful metallic taste that somehow reached my mouth despite being an IV.

After 25 minutes the treatment was done—and I walked out. Truly walked. I didn’t need my cane, and haven’t since. That night I only slept four hours and felt wired, but overall I was doing well. The next two treatments brought no miracles, but they went smoothly.

Now I’m watching to see how I feel once the steroids are out of my system. HE is a remitting condition, not curable, and it comes with a long list of symptoms. I’ve experienced fatigue, coordination problems, headaches, stroke-like episodes, partial paralysis, speech and articulation difficulties, tremors, and issues with concentration and fine motor skills.

I haven’t yet had dementia, seizures, hallucinations, or psychosis—and I hope it stays that way. If remission lasts for months, we can repeat the pulse therapy as needed. If not, other treatments may be tried: daily steroids (which I’d prefer to avoid because of weight gain and long-term effects), intravenous gamma globulin, or plasmapheresis (filtering antibodies from the blood).

Meanwhile, we still need to revisit the thyroid cancer question. Is HE causing the elevated TG, or is it true recurrence? Do I really need another round of radioactive iodine—which would bring my total exposure to about 550 mCi, the equivalent of 800 chest X-rays?

For now, I’m thrilled by this week’s progress and keeping my fingers crossed for what comes next.

—Odell

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