Thyroid Patients Canada is a non profit corporation registered with the Government of Canada, within Corporations Canada. Corporation number 1189963-5.
We promote health by providing individuals with thyroid disabilities with access to patient-led peer support communities and science-based public education, and by publicly advocating for improvements to thyroid health care policy and research.
We believe all thyroid patients should be able to obtain an accurate and full diagnosis, complete thyroid hormone testing, as well as individualized adjustments to optimize their thyroid therapy.
Who we are
Our officers, directors, and leaders are dedicated patients who are volunteering to build momentum. Currently our board includes:
- President and founder: Tania S. Smith (author of most of our website content)
- Vice-president: Alexa Mahling Deskin
- Treasurer: Sylvia Fader
- Secretary: Lea A. Davis
- Directors: Tania Pereira (and others TBA).
Beyond our board, we also have patients serving in a board Advisory Group, volunteer Facebook group moderators, and a Lab Test Action Group.
Contact us
Registered Address: 28 Northgate Drive, Bradford ON L3Z 2H5
Use our Contact link (in the header above) or use email canadian.thyroid.patients@gmail.com — We apologize that replies may be delayed because we have limited human resources and we operate mainly on Facebook.
See the links on the right sidebar:
- Join us on Facebook
- Follow us on Twitter
- Subscribe to this website’s Blog
Donate and support
Check out our separate page explaining how to give and where dollars go:
We are a patient-led organization.
To maintain an independent voice and point of view as patients, we choose not to affiliate with any pharmaceutical companies or medical associations.
However, we may consult and liaise with medical doctors, scientists, industries, and associations as needed to gather information and advice on our mission and activities, and to participate in consultation processes.
We are not formally affiliated with other thyroid patient groups in Canada and globally, yet we occasionally consult and learn with each other. We are in contact with some thyroid patient leaders in the UK and New Zealand.
We believe thyroid patients themselves play a key role in moving the best thyroid science into practice. As patients whose health is directly affected by guidelines and policies, we must support each other, educate the public, and hold our health care system accountable to the highest scientific and ethical standards.
What we offer
Patient-led peer support
- We foster a private online community of thyroid patients who share their knowledge, experience, and encouragement with each other (see our Groups page).
- On our blog, we feature examples and patients’ stories that raise awareness of the experiences of thyroid patients as individuals and as a diverse group.
- We build and strengthen a network of Canada-wide and international thyroid patient advocates who share our support, education, and advocacy mission and values.
Science-based public education
- Our blog posts feature and cite the best of published scientific research on all aspects of thyroid diseases and therapies.
- We educate patients, doctors, policymakers and the public about the basics and the lesser-known aspects of thyroid hormone health, thyroid diseases, and all kinds of thyroid therapies.
- We host a public online discussion group to enable dialogue between thyroid patients, health professionals, and the general public regarding the improvement of thyroid health care (see our Groups page).
- We promote critical thinking and careful reading of thyroid scientific literature.
- We point out scientific flaws and moral failures in thyroid research and guidelines, challenging all thyroid researchers to uphold standards of scientific integrity, ethical integrity, and logical argumentation.
- We attempt to dispel unscientific myths about thyroid diseases and therapies. Unfortunately, many thyroid myths and misunderstandings prevail in scientific communities, in medical education, and in patient communities.
Advocacy for improvements to thyroid health care
1. Definitions
We promote holistic, T3-inclusive, evidence-based definitions of euthyroidism that are not limited to the statistical description of thyroid hormone and TSH biochemistry in thyroid-healthy populations.
The advancement of thyroid science and thyroid therapy depends on differentiating between four types of definitions of thyroid status, or “lenses” that enable classification of thyroid status, found in the scientific literature:
- Thyroid disease etiology (cause): Autoimmunity, responses to infections, physical injuries, genetic polymorphisms and epigenetic responses, nonthyroidal illnesses, and nutritional imbalances (such as iodine deficiency and excess) all play important roles in causing thyroid disease or imbalance. Diagnosis of etiology enables understanding of the triggers, mechanisms, and progression of thyroid disease and one’s individual response to treatments.
- Gland health: Thyroid, pituitary, and hypothalamus gland health status can be interpreted by TSH-T4-T3 hormone relationships, ultrasounds, organ scans, and pituitary hormone tests. TSH is insufficient as a guide to gland health because many factors, including TSH-Receptor antibodies, leptin, and glucocorticoids, can directly interfere with TSH concentrations.
- Global thyroid hormone supply: Concentrations of thyroid hormones in blood (FT3 and FT4 ratios and levels) are the most direct and global assessment of the ability of the entire body to transport and metabolize thyroid hormone and maintain T3 sufficiency in receptors.
- Tissue- and organ-specific thyroid hormone status: Each tissue and organ metabolizes thyroid hormones in different ways and at different rates. Prominent tissue-specific thyroid hormone response biomarkers include pituitary TSH, liver ALT and total cholesterol, kidney GFR, heart rate, body temperature and ankle reflex. Symptoms also aid in the interpretation of tissue thyroid hormone status.
Unquestionably, TSH is very useful in screening for primary thyroid failure in untreated, symptomatic persons. However, on its own, it can never define hypo- or hyperthyroid status or gland health in the human body, and it no longer plays the sole regulatory role in thyroid therapy. In persons without any thyroid gland function, TSH is one of many tissue responses to thyroid hormone that does not regulate supply, and it is manipulated by the biochemical distortions of thyroid therapy and by TSH-receptor antibodies.
Definitions of thyroid status must take into account both adaptive and maladaptive distortions in TSH-FT3-FT4 relationships during all types of thyroid therapy, but the integration of FT3, the most powerful thyroid hormone, in this ever-shifting trio is not considered often enough. Complex adaptations in these hormone relationships occur during critical and chronic illnesses (nonthyroidal illness syndrome, NTIS), but the alterations and risks of NTIS have not yet been studied in large and diverse cohorts patients on thyroid therapy: we have been excluded from most NTIS studies. In the absence of thyroid gland function, medication dose and the deiodinases (enzymes that convert thyroid hormones) are the two most powerful influences on thyroid health, and the interactions between these are just beginning to be understood. Genetic influences on thyroid hormone synthesis, conversion, transport and signalling are part of a patient’s individualized response to therapy, and yet a “one size fits all” approach to therapy is being recommended as if it can serve all.
2. Testing policies
We assert that treated thyroid patients must have affordable access to thyroid hormone tests that they and their doctors collaboratively decide are necessary in light of current scientific and clinical evidence. Only the clinical environment has access to enough evidence for decision making about test ordering for an individual patient.
Testing flowcharts and algorithms for monitoring thyroid therapy should be different from those used in screening prior to therapy because thyroid hormone relationships shift substantially during therapy.
The TSH population reference range has never been properly validated as a surrogate endpoint or therapeutic target of thyroid therapy despite the historical and prevailing presumption that it can play this role.
In the context of thyroid therapy, TSH and FT4 cannot reliably predict adequate T4-T3 conversion in tissues beyond the hypothalamus and pituitary. TSH and FT4 cannot assess what is “adequate” FT3 in blood supply for the individual. One cannot expect all organs and tissues to increase their local T4-T3 conversion rate enough to make up for a relative FT3 reduction in bloodstream. One cannot assess whether TSH is “too low” or FT3 is “too high” without interpreting them in context. Therefore, neither TSH nor FT4 separately nor in combination provides enough data to ensure adequate dosing. Without testing FT3 and interpreting it in context of clinical evidence, one cannot verify that the pharmaceutical approach is effective in an individual patient.
Therefore, thyroid test algorithms and cancellation policies by government authorities must not interpret guideline silence on a thyroid test as evidence of its being unnecessary or non-beneficial. Guidelines are not laws but recommendations. The best guideline documents include disclaimers stating that their recommendations are subject to clinician judgment and further scientific evidence. Guidelines are formed by a rigid process of incomplete and selective literature reviews and can be powerfully skewed by historically-ingrained biases and consensus decision-making.
Test cancellations must not be rigidly enforced at the laboratory level alone. All scientifically valid reasons for unreliable TSH and risk of pathological FT4-FT3 relationships must be permitted to prevent test cancellation, not just central hypothyroidism.
Systems must be in place for doctors and patients to appeal test cancellations.
Systems must permit patient self-payment for thyroid testing that is deemed optional or excessive after a properly-handled appeal fails.
The full range of thyroid antibody tests, ultrasounds, thyroid uptake scans, and even troubleshooting tests like Reverse T3 should be available in all provinces so that patients’ diagnosis can be accurate enough to guide their therapy and inform them of all health risks and comorbidities.
3. Therapy policies
We advocate for guidelines and policies that permit flexible adaptation to thyroid patients’ multiple disabilities and the full diversity of response to various thyroid therapies.
We promote thyroid patients’ voluntary choice among all thyroid pharmaceuticals and treatments.
It is both unethical and unscientific to arbitrarily enforce one pharmaceutical and one dose-monitoring system on all patients.
It is unethical for medical systems to disparage any thyroid pharmaceutical on the basis of its synthetic or animal origin or its market price.
It is an act of unethical discrimination when medical systems deny a patient access to a thyroid pharmaceutical, a dosage, or dosage ratio that effectively removes signs and symptoms of tissue hypothyroidism without causing adverse manifestations of thyrotoxicosis.
Doctors should obtain patients’ informed consent for thyroid therapy prescriptions. Both the risks and benefits of each therapy type ought to be objectively explained without any bias in favor of the therapy currently espoused by consensus guidelines. The patient has the right to decide what medications they wish to ingest, and they must be given the freedom to accept long term health risk associations for the sake of obtaining short term therapy effectiveness.
4. Chronic disease status
We seek national status for thyroid disease as a “chronic disease.”
Our disease is equal in its scale and public health impact as diabetes, cardiovascular disease, and cancer. Our disease can have a significant impact on all other chronic diseases.
Federal status as a chronic disease means that our government will finally be responsible for an ongoing research programme that tracks the prevalence and types of thyroid disease, therapy costs, and comorbidities.
Main spokesperson
Our main Campaign researcher and writer is Tania Sona Smith. She is a rare subtype of thyroid patient with severe autoimmune Atrophic Thyroiditis alongside clear evidence of a genetic thyroid hormone metabolism and/or receptor disability. The ignorance of the medical system regarding the many health risks and direct cardiovascular effects of her thyroid hormone concentrations led to a health crisis. It galvanized her study of thyroid science. It drove her to seek and obtain a change in thyroid therapy that enabled her recovery.
Since 2002, she has served as a PhD-holding research professor in communications studies at the University of Calgary. She specializes in the study of rhetoric and argumentation and teaches research methods and professional and technical writing. She uses her advanced non-medical academic education and training to study, analyze, and synthesize thyroid scientific research literature as she writes posts for our website.
Her vision for science-based thyroid advocacy and health care reform inspire us and drive us forward in self-advocacy and group advocacy.
Read more about Tania S. Smith in several posts:
- Meet our campaign’s main writer, Tania Sona Smith
- Part 2: Meet our campaign’s main writer, advocate and researcher
- Part 3: Meet our campaign’s main writer: her hopes
Campaign history
We began in July 2018 with a Facebook campaign and website which was at that time called “Canadian Thyroid Patients Campaign.”
We spearheaded a Canadian federal petition to Health Canada in 2018, which received 5644 verified e-signatures. Our petition was read in Parliament by MP Diane Finley on January 28, 2019.
The experience of supporting an official government petition was a catalyst for us, even though the government response was disappointing and beside the point.
Long after the petition campaign, we have continued to develop our website and promote our campaign with original articles, visual memes, and videos. Our supporters respond, share, and comment on our communications as we build momentum.
We are building, and we need you.
We became a registered Canadian non-profit organization on February 11, 2020, approximately a year and a half after we began our campaign.
Our next steps are to register in Ontario, establish officers and by-laws, obtain a bank account, and move toward charitable status.
Our movement is still gaining momentum and followers.
Do you have skills and energy and inspiration to use them?