I wanted to post my initial experience with thyroid hormone in case it's helpful to anyone. I posted a couple of weeks ago about my consult with an endocrinologist who trained at Sloan Kettering and had experience with patients on TKI therapy. He ordered labs and an ultrasound of my thyroid. (I was dx in Jan. 2011 and switched from Gleevec to Sprycel in Feb. 2012 in part because I seemed to be having severe side effects in the form of fatigue and myalgia.)
The labs came back with everything in normal range. TSH was 3.05; it had been 4.6 in the late summer and 1.5 in November. The T4 was within normal range but at the very lower end (reference range .8-1.8 and mine was .9). The T3 was on the low side as well, though not as low as T4. I had no antibodies indicating Hashimoto's and the ultrasound was normal.
He recommended I start on 50 mcg of Synthroid. At my visit, he had told me that sometimes patients had normal labs but seemed to have developed some kind of peripheral resistance impeding the activity of thyroid hormone in the body. At first I was a little nervous, given that the labs were normal. But my mom, who is on Synthroid because she had her thyroid removed due to cancer, emphasized that Synthroid is very safe, the dose he had proposed was low, and if I felt bad I could always stop.
I started on Friday and within a day or two I am feeling so much better. My muscle pain and exercise intolerance is about 80% resolved (what's left is probably genuine Sprycel side effects); I actually worked out on Saturday for the first time in months. I am so much less tired and lightheaded. Shortness of breath (I guess the doctors call it "air hunger" not true SOB) is almost gone. My sleep is better, and I am not in a fog whenever I've been up and around for any length of time.
I feel like I have my life back again. I know it's early and the benefits could wane, but it's great not to be dragging myself through the activities of daily living.
Thanks for listening!