I had thyroid cancer in 2000 and had my thyroid removed along with being given 150 mci of radioactive iodine. In April of this year I was diagnosed with CML.
When I first started Sprycel I specifically asked my hematologist/onc how often he would test my TSH given what I have found regarding TKIs messing with thyroid hormones - particularly in those with no thyroid (a pretty small universe). I wanted it tested at least monthly. He refused stating that thyroid hormones move slowly and he would check at six months. I’ve been dealing with thyroid levels for 18 years but I was summarily dismissed.
This is morning I saw a different doctor - a leukemia specialist at the Siteman Cancer Center at Wash U/Barnes in St Louis. I wanted to discuss treatment options and get a second opinion. As part of this I mentioned my concern with thyroid levels. They immediately ordered a TSH test.
Just saw my results. TSH which was 1.27 in Mid April of this year (I am supposed to be at the low end of the range due to the cancer) is now over 8. I am furious - I have been experiencing fatigue and now can’t determine if it is TKI driven directly or indirectly due to the TSH. On top of that, high TSH increases the risk of the thyroid cancer reoccuring.
I am very happy I sought out this new doc and will be firing the other one in the morning. I despise caregivers that refuse to listen to me.
We must all be our own best advocate.