Our call:
“Renew the paradigm. Optimize our therapy.”
— Thyroid patients everywhere
But first…
To optimize therapy, we will need a new paradigm for thyroid diagnosis, testing, and treatment.
— Tania Smith, Thyroid Patients Canada
Our vision for the patient-physician relationship
We work toward a world in which physicians and thyroid patients collaborate and engage in dialogue during diagnosis and treatment. Both parties will openly discuss how they hope to achieve their shared goals: 1) minimizing the subjective symptoms and the objective signs of hypo- and/or hyperthyroidism and 2) minimizing health risks.
Ideally, more physicians will earn their patients’ respect by treating patients with respect and compassion. More physicians will consult their patients’ preferences, priorities, and past experiences. The best clinicians will refuse to be shamed by science articles that ridicule them for giving in and listening to thyroid patients’ pleas and suggestions.
In the future we are building together, physicians will no longer stigmatize or stereotype thyroid patients as having “unreasonable expectations,” or being “difficult” or “demanding” when patients seek T3 tests or T3 treatments beyond the traditional TSH-idolizing, LT4-obsessed paradigm. See our series “2019 ATA article engages in patient-blaming and doctor-shaming.”
In the best patient-physician professional relationships, both parties will admit they are not immune to “confirmation bias” — the tendency to seek only the evidence that confirms one’s own beliefs while ignoring or rationalizing evidence that contradicts those beliefs. See our article on true “Evidence-based thyroid therapy.”
We envision a future in which evidence-based patient support groups such as Thyroid Patients Canada will be seen as important partners with physicians and patients.
In this ideal future, evidence-based patient support groups will have the capacity to support patient education by providing links to accurate and complete information, by correcting misinformation with kindness, and by offering cautions, practical tips, and social support through dialogue. Patients will come to medical appointments more equipped with intelligent questions and suggestions that can make their treatment more effective.
Future medical advisors to patient support groups will educate patient leaders to understand the professional limitations and challenges physicians face when diagnosing and treating thyroid conditions. They will explain how and why medical education about thyroid is limited and oversimplified, and how patients can respectfully encourage physicians to expand their knowledge and skills. Advisors will also explain the systemic origins of thyroid patients’ challenges in the doctor’s office, and how patients can handle conflicts productively.
Our Vision for diagnostic testing and healthcare system improvement
We acknowledge that a high or low TSH is a strong red flag of primary thyroid disease in the untreated general population.
However, in our vision of the future, physicians and healthcare administrators will be much better informed that an isolated normal TSH cannot confirm euthyroid status. See our science reviews such as “Can a normal TSH rule out thyroid disease?
We look forward to a science-informed healthcare system in which no patient who is on thyroid treatment for hypo- or hyperthyroidism is stereotyped as being unequivocally “euthyroid” just because their TSH concentrations fall within the reference interval of their local laboratory.
In this ideal future, physicians and patients who find FT3 and FT4 test results valuable will inform their peers and healthcare leaders about how these tests can rationally guide therapy in light of other biomarkers and clinical evidence.
Given the rise of AI applications in health care, laboratories may easily implement tools that enable clinicians to interrogate the TSH response by using FT3 and FT4 data. These tools already part of a free endocrinology research app: See “Analyze thyroid lab results using SPINA-Thyr.”
Once the idolatry of the TSH reference interval is undermined by science and reason, and once clinicians rediscover the usefulness of FT3 and FT4 data, we may see changes to laboratory flowcharts that now overrule clinical judgment and dictate the cancellation of FT3 and FT4 tests whenever TSH is normal.
In our ideal future, healthcare systems will not necessarily be wealthier, but wiser. Their drive to minimize economic costs and inefficiencies will no longer overshadow the importance of accurate thyroid diagnosis and individually-optimized thyroid treatment.
Wise healthcare systems of the future will engage in research on the ways in which thyroid treatment protocol changes and FT3 and FT4 changes during treatment (not merely TSH categories) influence hospitalizations, emergency visits, mortality rates. They will investigate how various thyroid treatment protocols influence health outcomes in thyroid patients with major comorbidities such as diabetes, obesity, heart failure, autoimmune diseases, lung, kidney and liver diseases, and osteoporosis.
By listening to narratives of patient harm caused by superficial and naive TSH-only guidance treatment, healthcare administrators of the future will realize that the long-term costs of institutionalized ignorance can outweigh the short-term savings of population-wide FT3 and FT4 test cancellation policies. As a result, in the ideal future, administrators will relax lab test cancellation flowcharts and permit more exceptions based on patient health outcomes and clinical judgment.
Future healthcare systems will receive funding for research on the prevalence rates of various thyroid disorders across Canada to discover whether regional environmental toxins, socioeconomic disparities, or cultural dietary practices influence thyroid health and thyroid autoimmunity in Canada.
Future healthcare systems will be very cautious when adopting AI solutions for thyroid healthcare, since they may embed false presumptions about thyroid patient perspectives and common thyroid diagnosis and treatment challenges. Administrators will involve thyroid patient advocates and leaders in the development and testing of new computer systems, protocols and AI systems to improve thyroid healthcare.
Our vision for thyroid science
Informed thyroid patients envision a future in which the best thyroid scientists challenge clinicians to question the standard paradigms and the sufficiency of what they learned in medical school.
Too many physicians — and patients — imagine that thyroid diagnosis and treatment is easy. Many have unreasonable expectations about the efficacy of simple step by step processes that guide thyroid healthcare.
A key role of thyroid science is to keep physicians and patients humble and awed by the complexity and power of the thyroid hormone system. The best of scientific work in the future will not just shed light on new discoveries, but also question old paradigms and presumptions.
Including experienced thyroid patient leaders as research co-investigators in clinical studies will be a strong recommendation of research funding in the future, since the patient sees disease and treatment challenges from a different perspective than most clinician-scientists.
In our best future, scientists will expand thyroid knowledge by performing research that questions the presumptions underlying institutionalized practices. Certain areas of thyroid clinical research will no longer be neglected or discouraged because of traditional presumptions about what causes risk or benefit.
Our vision for evidence-based thyroid guidelines
In the better future that we envision, physicians and administrators will humbly acknowledge the collective scientific ignorance and uncertainty that makes all consensus-based recommendations in guidelines limited, tentative, and culturally influenced.
In our ideal future, endocrinologists who write thyroid diagnosis and treatment guidelines will be far more humble about what is still unknown and uncertain about thyroid diseases and their treatment. They will not engage in fallacious and overgeneralized reasoning about the application of clinical trials or observational studies that confirm their biases and strengthen their paradigmatic presumptions. They will actively consult thyroid patient leaders about the blind spots of current thyroid guidelines and practices.
Thyroid treatment guidelines in a better future will not idolize randomized clinical trials or studies that engage in linear regression to estimate risk associations. They will humbly acknowledge the limitations of all clinical trials and observational risk studies. They will acknowledge that consensus is necessary to make tentative recommendations because scientific evidence is subject to bias and is always incomplete.
Guidelines of the future, therefore, should include a disclaimer stating that they are not infallible guides for individual clinical decision-making. Guideline-writers cannot predict whether future studies may contradict their recommendations or reveal flawed presumptions. Guidelines of the future will strongly recommend that patients and clinicians respect future unpublished research, and that they critically assess research not reviewed by guideline-writers.
In our ideal future, guidelines and policies will explicitly encourage physicians and thyroid patients to engage in shared decision-making about treatment protocols. Thyroid patients who have capacity to exercise informed consent will be given the opportunity to choose among treatment options and to give or refuse consent for treatment decisions or treatment adjustments. Guidelines would never cast unfair suspicion on patient preferences, priorities, or symptom reports as fundamentally untrustworthy or irrelevant to the adjustment of treatment.
Instead of dismissing central hypothyroidism and TSH-discordant thyroid status as “rare,” good thyroid guidelines of the future will recommend that whenever the TSH category conflicts with patients’ clinical experience, additional biomarkers should be sought to assess tissue thyroid hormone status. The presence of multiple symptoms, the severity of a single symptom, changes to comorbidities, and changes in FT3, FT4, and thyroid-sensitive tissue biomarkers, will rationally strengthen or weaken a patient’s report that a treatment adjustment has improved or worsened their health.
In our vision for the future, guidelines and consensus statements will always include disclaimers that limit their power to punish thyroid patients and their physicians for a failure to adhere to guidelines (See “2012 ATA thyroid guidelines ask for clinicians’ independent judgment“). Patient testimony will always be sought and included in any case where a clinician is being audited for failure to adhere to thyroid guidelines.
Scientists have been uncovering the complexity and diversity of thyroid disorders. Given this complexity and diversity, a better future involves a healthcare system that stops oversimplifying thyroid diagnosis and adapts treatment to the individual.
Support our vision…
Help us make this future possible. We can’t do much alone, but we can do a lot together.
