Members of the C4 team with lived experience of thyroid cancer are working with thyroid cancer specialists to learn about thyroid cancer patient experiences, treatment satisfaction, and opportunities to improve thyroid cancer care for future patients.
This work is the first step in a multi-step program of research, design, and evaluation based on the observation, growing body of academic literature, and insights from thyroid care advocacy groups that have found that the existing simple “one size fits all” solution of Synthroid (levothyroxine) does not actually leave thyroid cancer patients in a position to live their best lives.
Particularly for thyroid cancer, survivors are shamed into believing that this is the “good” cancer, and that it is easy to treat.
What doctors don’t tell these patients is that when their thyroid is removed, they will be treating this cancer for life.
Synthroid contains levothyroxine, the synthetic form of T4, the “storage” form of the thyroid hormone that’s required for metabolism, temperature regulation, and other body functions. T4 gets converted (in the thyroid and in other places in the body) by deiodinases into T3, the “active” form of the hormone.
While this is just one piece of the thyroid hormone story, what’s important here is that not everyone converts T4 to T3 with the same efficiency, and many people are left feeling dumber, slower, getting fatter, and live with low mood. And yet, it’s usually a one size fits all solution of Synthroid that most thyroid cancer patients are offered.
What compounds this situation is that around HALF of the population in North America have genetic variations that encode deiodinase enzymes that leave them susceptible to metabolic syndrome (including type 2 diabetes, obesity, hypertension). Remove the thyroid that’s producing some of a person’s active T3 production, and you’ve essentially handicapped them for life, treating them with a drug that doesn’t meet their needs, and developing any (or all) of these metabolic syndrome illnesses is a situation is the patient’s fault?
Our team members who are working on this project are privileged with access to academic literature and an education that equips them with the knowledge to dig into this. But what about those thyroid patients who are not as connected to the healthcare system, vulnerable, or who are unable to dig into the academic literature to put these pieces together? What quality of life are we leaving them with? What choices do they have?
Patients with thyroid cancer shouldn’t just survive their cancer experience. They should be empowered with all the tools they need to thrive.
We can do better. We are starting with a pair of surveys (one for patients, one for prescribers), and is just the first step in this journey towards creating personalized treatment plans as discussed and agreed to by patients and their doctors, based on the individual’s genetics, values, preferences, and situation.
For more information or to access the patient survey, please visit: https://research.ucalgary.ca/participate/exploring-limitations-current-standard-care-thyroid-hormone-replacement-therapy-thyroid-cancer-hrebacc-23-0125