I was on nivo. for about 8 months until progression found on CT, June 30. Since then I've been going through the hoops to get on a Rova-T trial & hope to start within a few weeks.
In the meantime, a blood test found my TSH at .02 (T4 "normal") and I have been feeling the effects of hyperthyroid, with rapid heart beat, some dizziness, tingly feelings, that come with minor exertion. For the past 25 years or so I've been treated for hypothyroid, and normal TSH for me is around 1.5.
The earliest my endocrinologist would see me is one month. Needless to say, this endo does not show an overabundance of concern, so in the meantime I have stopped taking my Armour Thyroid on my own. It has made a great difference, though I'm still having some hypo symptoms.
I have two questions: First, though I've found some general information from Dr. West and a few others, I don't find much that looks at various interations of the nivo/thyroid link, and especially whether there are any new thoughts on treatment possibilities for this side effect.
Second: What is the thinking about starting a new med within a few weeks of starting a clinical trial? I think I know the answer to that, but you folks are so great at looking at all sides of a question that I'd like to hear your response.
Thanks so much!