“Evidence-based medicine.” That term means different things to different people.
It is a worthwhile goal.
However, it’s often a weasel word medical people use to gain power and status over each other and to bully patients into submission. “I’m more evidence-based than you are, so you have to shut up and let me talk now.”
A lot of limiting and harmful aspects of thyroid therapy claim to be “evidence based.”
But nobody can honestly claim to have all the relevant evidence, ever. In fact, medical decisions, policies and research studies are always based on selective evidence.
Also, you may be looking at real, valid evidence, but through what lenses will you interpret it?
Having a medical degree of a certain kind brings valuable knowledge, but knowledge is shaped (and distorted) by a field’s paradigms, priorities, and practices. Humans don’t often seek the evidence that might prove them wrong about something they assume to be true every day.
Medical training is not the only way to obtain medically-relevant knowledge. Learning in classrooms, earning academic degree credit, and holding a job as a health professional are not the only ways to learn.
That’s why medicine always needs to have open dialogue and discussion about evidence.
Thyroid patients need to be part of that dialogue.
This article is not about the science. It’s about what evidence matters, where we as a society get our evidence, and the dialogue we have about the science.
Evidence in thyroid disease and therapy comes in many forms, such as:
- Thyroid-specific laboratory test results, such as Free T3 and T4, TSH, Reverse T3, thyroid antibodies, thyroid ultrasound.
- Clinical scoring scales that cover a wide range of classic thyroid symptoms, rating their quantity and severity: fatigue, cognitive difficulty, mental health and emotional imbalance, exercise intolerance, hair loss, weight gain/loss, breathlessness, sleep disorders, hot and cold temperature sensitivity, cardiovascular symptoms. (However, some scales can be compromised by the fact that some symptoms can be found at both ends of the hypo-hyper continuum).
- Clinically-measurable biomarkers of thyroid hormone activity in tissues, such as heart rate, body temperature, blood pressure, ankle reflex, hand tremor, muscle weakness. These can mean a lot when considered together and in the context of a patient’s clinical history and other health conditions.
- Other laboratory test results that can be strongly influenced by thyroid hormones, such as cortisol, vitamin B12 and iron levels, total cholesterol, creatine kinase, sex hormones, and sex-hormone binding globulin.
- Health outcomes and quality of life in relation to all the above.
SOURCES OF EVIDENCE
Where does one find such evidence?
Not all evidence comes from a laboratory or clinical setting and is published in scientific journals. Any and all of the forms of evidence above can be shared in a wide variety of “sources” (publication types) or “discourses” (discussions). These sources will often include interpretations and proposed applications of that evidence:
- Published scientific research studies of various types (not just clinical trials). These require careful review for their aims, methods, assumptions, conclusions, and proposed applications. A person cannot rely on skimming titles and abstracts alone.
- Doctors’ clinical experience of thyroid disease and therapy accumulated case by case over many years of practice. Forums in which doctors share their professional knowledge, including formal medical education and informal water-cooler chat and conferences.
- Patients’ experience with thyroid disease and therapy, both individually over years, and collectively compared in patient support forums where patients come together to help each other and learn together across all forms of thyroid disease and treatment.
Basically, various types of evidence get discussed in various forums, and each source can be biased and partial evidence.
The doctor’s office is only one place where we discuss relevant data. We can’t expect too much of that dialogue.
Both doctors and patients can learn by dialogue with others like themselves, comparing across many cases.
Peer-based learning and individual study are essential supports for evidence-based thyroid therapy dialogues in the doctor’s office.
Doctors, consider gathering together to learn about individualized thyroid therapy and challenging cases, not just to complain and roll eyes about whiny, googling thyroid patients, not just to learn the latest techniques to efficiently dismiss our symptoms and manipulate our TSH. Consider reading some studies of thyroid therapy by Hoermann, Midgley, Larisch and Dietrich.
Patients, consider learning with your peers today. Join and follow our campaign as one way to keep learning. Join a private, thyroid-patients-only forum. Read others posts and learn from their symptoms, lab results, and their journeys over time. Comment with questions, suggestions and encouragement. Consider planning a thyroid patients’ face to face meet-up in your region.
- Tania S. Smith