Thyroid Patients Canada is a patient-based, science-focused thyroid therapy advocacy and awareness campaign.
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.
Patients themselves play a key role in advancing the best thyroid science and promoting evidence-based thyroid diagnosis and therapy. We can and must foster public dialogue on the challenges that thyroid patients face.
If we as patients do not speak out and take a stand for and against certain thyroid therapy principles, policies and practices, and if we cannot do so by wielding scientific data and evidence-based and ethical arguments, our thyroid therapy systems and guidelines will continue to cause harm to ourselves and future patients.
- Promote public dialogue about the experiences of thyroid patients as individuals and as a diverse group.
- Promote deeper public knowledge of the science of thyroid hormone health and thyroid gland health.
- Challenge contemporary policies and clinical guidelines that limit patients’ access to thyroid hormone tests and thyroid pharmaceuticals.
- Fight against the limitations our doctors face to conform to oversimplified clinical thyroid education, practice guidelines, policies and flowcharts.
- Challenge thyroid pharmaceutical prejudice against any regulated T4- or T3-prescription-based hormone medication available on the market.
- Ask national and provincial governments to acknowledge thyroid disease as a chronic illness. With chronic disease status comes funding for research on prevalence and types of thyroid disease, therapy costs, and comorbidities.
- Challenge thyroid research to uphold the highest standards of scientific integrity, ethical integrity, and logical argumentation to reach conclusions.
- Engage in international collaboration in thyroid patient advocacy.
Who are we?
We are an independent, science-based patient activist community that is currently (2019-2020) in the process of registering as a nonprofit organization.
Our campaign has an Advisory Group consisting mainly of thyroid patient leaders from a Canada-wide private online patient support group.
Our authority to inform the public and advocate for thyroid patients is based on:
- Thyroid scientific literature in published peer-reviewed journals. This is the primary source of all reliable medical information. It is the basis of all sound medical practice, medical education, therapy guidelines, and health policy. We read this literature carefully and cite it frequently. We hold ourselves and all others accountable to using this literature wisely.
- Publicly available information pertinent to thyroid therapy policy, such as clinical guidelines, health care policy statements, news articles, pharmaceutical information, government statistics, and side effects reporting databases.
- Our experiential knowledge of our own thyroid condition and how it has been managed and/or mismanaged by our health care systems.
- Our knowledge of our fellow thyroid patients’ treatments, lab results, symptoms, and reports of their doctors’ statements and decisions, which they share voluntarily on private patient support forums and through private messaging.
We strive to maintain a patient’s voice and perspective as we advocate for policy changes, and as we praise or critique thyroid research, guidelines, and trends in thyroid therapy.
We are not affiliated with any pharmaceutical companies. However, we liaise with them to exchange information on drug shortages, distribution problems and patient reports of adverse effects.
We are not affiliated with the Thyroid Foundation of Canada (TFC). We offer very different services to the public and the patient community. We have different aims and methods.
Our main Campaign researcher and writer is Tania Sona Smith. She is a thyroid patient with atrophic thyroiditis and a thyroid hormone metabolism disability. She also happens to be a PhD-holding research professor in communications studies at a Canadian university. 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 campaign.
When we become an official organization with named public leaders and a board of directors, we will post our organization information and our names and profiles.
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
Who are “thyroid patients”?
If your health is challenged by a thyroid hormone imbalance or a thyroid disease, whether temporary or permanent, mild or severe, we advocate for you.
We often call thyroid patients “thyroid-disabled people” even if the thyroid disability is a thyroid hormone imbalance or deficiency caused or worsened by another disease. Thyroid disease is not yet recognized as a disability that is deserving of formal accommodations. Nevertheless, this terminology is important in raising awareness that thyroid diseases can fundamentally alter thyroid hormone metabolism and can create functional disabilities that manifest in many organs and systems across the human body. It is not just a disorder localized to the thyroid gland or pituitary gland, and it is not just a biochemical condition that can be fully or easily remedied by medicine. When we use the word “people,” we remind all that we are not just “patients” subject to medical authority and management. We are people who happen to have a disability. We are citizens with human rights. We deserve to be protected against unjust discrimination against our disability and our unique vulnerabilities.
There are three general categories of thyroid patients:
1. People with autoimmune thyroid disease (AITD)
Thyroid antibodies participate in progressive and permanent destruction of the thyroid gland itself. They can also cause disorders and symptoms in many other tissues in the body.
- Hashimoto’s thyroiditis, associated with elevated titres of one or both of two anti-thyroid antibodies (Thyroglobulin antibody, TGAb, and Thyroid Peroxidase antibody, TPOAb) that induce thyroid inflammation (goiter), nodules, and ultimately cause gradual follicular cell death and fibrosis over many years or decades. This is the most common form of AITD.
- Graves’ Disease, caused by TSH-receptor stimulating antibodies (TSAb) that overstimulate active thyroid gland tissue to secrete excess thyroid hormone. The antibody can also overstimulate TSH receptors in eyes, bones, and skin, causing diseases in additional organs and systems even after hyperthyroidism is eliminated by therapy.
- Atrophic thyroiditis causes hypothyroidism by means by TSH-receptor “blocking” (TBAb) and “cleavage” antibodies that block TSH stimulation and promote progressive thyroid gland atrophy and fibrosis. The thyroid gland can permanently shrink to a fibrosed flap of tissue only 2mm thick with as little as 0.5 mL volume. This is a hypothyroid variant of Graves’ disease. As in Graves’ disease, the antibodies can affect TSH receptors throughout the body.
Recent research in thyroid autoimmunity is now treating these as manifestations of a single spectrum, rather than as three separate autoimmune diseases. Patients in any disease category can have any or all of the thyroid antibodies. A single person can have both Hashimoto’s and Graves’ disease, or both Hashimoto’s and Atrophic thyroiditis. Antibodies can fluctuate and disappear over months, years or decades, causing thyroid gland destruction over time at an unpredictable rate.
The TSH Receptor antibody can cause inappropriate TSH response by interfering with the TSH ultrashort feedback loop, and this can lead to inappropriate thyroid therapy decisions. The antibody can cause a patient to cycle between hyper- and hypothyroidism and can bring phases of remission from hyper- or hypothyroidism.
2. Patients with other thyroid pathologies
Other gland failures can also result in permanent thyroid hormone imbalances that must be treated. These patients may or may not also have autoimmune thyroid disease in addition to these conditions:
- Thyroid Cancers, before or after a full or partial thyroidectomy or alternative therapies such as ethanol injection and radiotherapy. Thyroid cancer therapy may render a person hypothyroid and dependent on lifelong thyroid hormone therapy.
- Central hypothyroidism due to hypothalamus or pituitary failure or drug effects. These patients cannot secrete enough bioactive TSH to stimulate a thyroid gland. Patients can have both primary and central hypothyroidism at the same time. Therapy for primary hypothyroidism can be complicated by various degrees and types of central hypothyroidism.
- Congenital hypothyroidism, such as birth without a thyroid gland, or defects in thyroid hormone transport or receptors.
3. Patients with a temporary thyroid condition
- Benign growths or nodules on the thyroid gland that may or may not require thyroid surgery or removal without causing permanent hypothyroidism. Nevertheless, benign growths and nodules must be monitored for signs of cancer.
- Pregnancy and post-partum hypothyroidism and hyperthyroidism may be temporary.
- Infectious thyroiditis can cause thyroid pain and temporary hyperthyroidism, but may be temporary.
- Low T3 Syndrome (non-thyroidal illness, NTIS) can cause those who have healthy thyroid glands AND those with diagnosed thyroid disease to experience severe T3 deficiency despite a normalized TSH.
What kinds of thyroid medications do we advocate for?
ALL of the available treatments for goitre, nodules, and thyroid cancer that may benefit a patient.
ALL of the available anti-thyroid medications and treatments for hyperthyroidism of any etiology that may benefit a patient.
ALL of the available thyroid hormone pharmaceuticals that are approved for sale in Canada and other developed nations and are carefully regulated for their quality:
- Synthetic LT4 Levothyroxine, sold by many brands such as Synthroid, Eltroxin, Euthyrox and generic
- Synthetic LT3 Liothyronine, sold in Canada as Cytomel by Pfizer.
- Desiccated Thyroid Extract (DTE / NDT, sold in Canada as ERFA Thyroid), an animal-derived pharmaceutical which contains both T4 and T3 at a standardized 4.2 to 1 ratio.
- Compounded thyroid medications. Powdered forms of T4 and T3 and desiccated thyroid are available at licensed compounding pharmacies across Canada. Both regular and slow-release T3 are also available in powder form from compounding pharmacies.
In hypothyroid therapy, all hormone agents are bioidentical to human-secreted thyroid hormones. There is no biological basis for thyroid hormone pharmaceutical prejudice against any of these preparations. All of these medications can potentially be dosed to safety and effectiveness.
However, each patient’s body will respond differently to a particular type, brand, dosage, and ratio of thyroid hormones. Some patients have sensitivities to the inactive ingredients. Some patients are poor metabolizers of T4 medication. Some patients, especially those with mild to severe adrenal dysfunction, have adverse reactions to fast release T3.
Therefore, patients and doctors require the freedom to choose among all thyroid hormone pharmaceuticals and to combine them as necessary to provide the ratio and dose of T4 and/or T3 hormone in blood that works best for the patient’s body.
What do Canadian thyroid patients struggle with?
So many things! These challenges are not in priority order.
- Medical dismissal and misunderstanding of the body-wide symptoms of thyroid hormone imbalance and its influence on many other health conditions. We are a disease placed in an impossible category. ALL the major symptoms and signs of thyroid hormone imbalance have now been misclassified as “nonspecific” to our disease!
- The tyranny of the TSH test and laboratory reference ranges over our diagnosis and therapy. The TSH does not represent the thyroid status of tissues beyond the hypothalamus and pituitary, and TSH is not just a reflection of negative feedback of thyroid hormones in blood.
- Cost-cutting campaigns that limit our access to thyroid hormone tests Free T3 and Free T4, antibody tests, and thyroid ultrasounds.
- Medical prejudices and myths that limit the range of pharmaceutical options for therapy and force levothyroxine monotherapy on patients without full informed consent of its risks and limitations.
- Official therapy guidelines that are based on a biased and selective review of evidence and research, not a full and objective assessment of evidence.
- The tyranny of thyroid clinical guidelines over the independent clinical judgment of health care practitioners. They are being misused to punish doctors for nonconformity when all guidelines can do is make consensus-based recommendations.
- Lack of awareness of the T3 hormone’s powerful role in human health, and its central role in thyroid disease and optimizing thyroid therapy.
- Price increases, drug shortages, and lack of market diversification for synthetic T3 and desiccated thyroid medication.
- Lack of awareness of thyroid autoimmunity, including the health effects of all thyroid antibodies and the interactions among several autoimmune disorders.
- Lack of research on the effectiveness and safety of long-term thyroid therapy which examines Free T3 and biomarkers of T3 signaling in tissues as key variables, not just TSH and FT4. Studies on the health outcomes of thyroid therapy must differentiate thyroid patients by disease etiology, thyroid gland status, pituitary health, therapy type, and antibodies.
Read our Campaign Statement for more information on our challenges and stance.
We fight to reduce injustices and harms
We speak for thyroid patients who have been harmed, are currently being harmed, and may be harmed in the future by medical mistakes and misunderstandings of thyroid disease and thyroid therapy.
Science and evidence ought to be the basis of thyroid therapy. However, scientific knowledge of thyroid diseases and therapies has been developing at a snail’s pace and only in directions guided by medical trends and fads. A lot of valuable thyroid science has been buried and forgotten or not disseminated well enough. Myths, fears, ignorance, prejudices and paradigms often get in the way of medical understanding. Research on the harms of standard thyroid therapy has not been done, and research on the benefits of T3-based therapies is limited, flawed and biased. Unacknowledged biases have led to the development of inappropriately narrow clinical guidelines.
Thyroid patients’ voices are too often silenced by medical authority based on systemic ignorance of thyroid science.
Thyroid patients have been silenced by their own fatigue, cognitive disability, and illness that comes with unresolved hypothyroidism while on thyroid therapy.
We each have a moral responsibility to speak out against medical beliefs, policies and practices that are prejudiced, unscientific, harmful, unjust and unethical toward thyroid patients.
Our website & blog
We write and speak to a diverse audience of health professionals, doctors, thyroid researchers, thyroid patients, and the general public.
A large variety of people can improve thyroid therapy by deepening their knowledge of thyroid science and patient experiences on thyroid therapy.
Our posts are generally of three types:
- Advocacy (raising awareness; calls to action; articulating our stance; recommendations, policy analysis; news and trends)
- Patient community support (mutual encouragement, self-advocacy tips, patient stories, therapy tips)
- Thyroid science and therapy education (reviews of scientific articles and other relevant publications) which forms the basis of advocacy and patient support.
Some of our posts will be for readers who have interest in developing advanced thyroid scientific knowledge, some posts will target those who create health care policies or develop pharmaceuticals, while other posts will be for readers seeking practical therapy tips or encouragement.
Patient support group (Facebook)
Our core leaders arose out of the private “Canadian Thyroid Support Group” on Facebook, which admits only Canadian thyroid patients. It operates separately from our public pages and group and is moderated by a different set of administrators.
In the support group, patients take the initiative to learn from and with each other by sharing symptoms, lab results, asking for recommendations for good thyroid doctors in their region, and asking questions. We are very aware that we are not doctors and we are not offering official medical advice, but we build knowledge together, often by linking to scientific and medical resources.
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 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.
Our movement is still gaining momentum and followers.
Do you have skills and energy and inspiration to use them? See posts that discuss ways you can help:
See the links on the right sidebar:
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Use our Contact link (in the header above) to email firstname.lastname@example.org