Who are we?
We are a grassroots thyroid patients’ campaign spearheaded by a small group of active members in a support group for Canadian thyroid patients.
Our campaign has an Advisory Group consisting mainly of thyroid patient leaders from a Canadian patient support group.
We are not affiliated with the Thyroid Foundation of Canada or any other thyroid organizations, although we may informally work together or communicate with other thyroid groups from time to time.
Our main Campaign researcher and writer is Tania Sona Smith. She may be willing and able to speak with media.
Read more about Tania 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
Why is most of our leadership group anonymous?
- Some of us do not want the stress and labor of being in the public eye as leaders of the campaign.
- Some are still experiencing hypothyroid symptoms such as fatigue and cognitive difficulty on their journey toward optimal therapy.
- Some among us benefit from T3-based thyroid hormone therapies that are controversial in current practice, and we wish to protect our treasured doctors from the harsh criticism of their peers that could cause harm to their career, and by extension, harm to all their thyroid patients.
We launched our “campaign” in June 2018.
At that time, just as we had finished dealing with one thyroid medication shortage (Thyroid by ERFA Canada), another shortage was announced for Pfizer’s Cytomel. Our patient support group started to have an increasing number of posts and comments about the supply and pricing of T3-based pharmaceuticals.
We were alarmed by the continual shortages and the difficulties of affording the customized care we need.
We felt we had to do something about it. This was the catalyst to get us thinking about doing more than just addressing a drug shortage.
We realized the pharmaceutical market situation was just the tip of the iceberg. We realized we needed to seek to improve thyroid patients’ health in more systematic and more long-lasting ways.
We launched a federal petition in 2018 that was read in parliament in early 2019. See our Petition page for more information. Our campaign goes beyond the petition.
What do Canadian thyroid patients struggle with?
In many ways, our challenges are similar to those of thyroid patients all over the world.
Canadian thyroid patients, however, encounter these challenges in the context of our unique health care systems, culture, climate, geography and economy:
- Lack of awareness of the T3 hormone’s powerful role in human health, and its central role in thyroid disease and optimizing thyroid therapy
- Medical dismissal and misunderstanding of the body-wide symptoms of thyroid hormone imbalance and its influence on many other health conditions
- The tyranny of the TSH test and laboratory reference ranges over our diagnosis and therapy
- Official therapy guidelines that are based on a biased and selective review of evidence and research, not a full and objective assessment of evidence
- Cost-cutting campaigns that limit our access to thyroid hormone tests
- Medical prejudices that limit our range of pharmaceutical options for 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 conducted on thyroid patients maintained on long-term therapy, and lack of studies that include measure and differentiate us by our Free T3 levels, our disease / gland status and our antibodies.
Read our Campaign Overview for more information on our challenges and stance.
What kinds of thyroid patients do we advocate for?
We are including ALL thyroid patients in our campaign. No matter what is the cause of thyroid disease, we struggle with similar challenges in the medical system.
- Hashimoto’s thyroiditis
- Graves’ hyperthyroidism, before or after radioiodine thyroid ablation or thyroidectomy
- Thyroid Cancer, before or after a full or partial thyroidectomy that requires thyroid hormone therapy
- Atrophic thyroiditis (gland atrophy caused by TSH-receptor “blocking” and “cleavage” antibodies)
- Central hypothyroidism due to hypothalamus or pituitary failure or drug effects
- Congenital hypothyroidism
- Those who require thyroid surgery or removal for growths or nodules on the thyroid gland
- Post-partum hypothyroidism and short-term infectious hyper- and hypothyroidism
- Those who have healthy thyroid glands but experience chronic or acute Low T3 Syndrome (non-thyroidal illness), whose health is at risk from this deficiency.
We do not discriminate against patients based on non-medical categories such as gender, age, education, income, ethnic background, skin color, religion, geographic location, concurrent health conditions or disabilities, or dietary needs or preferences.
All thyroid patients should be able to obtain accurate and complete diagnosis and individualized therapy.
Focus on thyroid science and evidence
Our campaign strongly believes in the importance of “evidence-based medicine.” This means researchers, doctors, and patients need to have public, critical dialogue about ALL types of relevant evidence in thyroid disease and therapy, not just the evidence published in scientific journals and the evidence selectively reviewed by thyroid therapy guidelines.
Focus on hypothyroidism
At this time, our thyroid patients campaign is focusing on improvements to lifelong therapy for hypothyroidism.
However, we will from time to time discuss issues in hyperthyroidism, thyroid cancer, and thyroid health in general.
The vast majority of patients with a thyroid disease diagnosis will become hypothyroid, whether due to autoimmune destruction of the thyroid gland, partial or total thyroidectomy, or radioiodine thyroid gland ablation in Graves’ disease. Permanently hypothyroid patients will spend the rest of their lives on thyroid hormone replacement.
What kinds of thyroid medications do we advocate for?
In hypothyroid therapy, we believe each patient should have access to ALL of the thyroid hormone pharmaceuticals and should have the right to explore each of them and decide which therapy modality works best for them:
- Synthetic T4 (Levothyroxine, Synthroid, Euthyrox)
- Synthetic T3 (Liothyronine, sold in Canada as Cytomel by Pfizer, or as a compounded powder, either regular or slow-release)
- Desiccated Thyroid Extract (DTE / NDT, sold in Canada as ERFA Thyroid), which contains both T4 and T3
The hormones ALL these medications provide are completely “bioidentical.”
Therefore, there is no scientific rationale for pharmaceutical prejudice for or against any of these preparations.
However, NONE of these will affect an individual patient in a predictable way:
- Each patient’s body will respond differently to a particular type, brand, dosage, and ratio of thyroid hormones.
- Some thyroid patients convert T4 into T3 very efficiently, and some convert T4 poorly. Some will fare poorly on T4 alone, and others will not require any T3.
- T4 and T3 pharmaceuticals operate in very different ways and must be dosed and optimized differently.
- Contrary to popular belief, there is no single T4:T3 ratio of secretion and no single rate of conversion, even when the thyroid gland is completely healthy.
- Different types of thyroid disease and their progression will influence therapy.
- Genetics, concurrent health conditions, pregnancy, menopause, aging, diet, and nutrient deficiencies can interfere or assist.
- Non-active ingredients and bioavailability (how much hormone can be absorbed) can make even two brands of synthetic T4 unequal.
Therefore, patients and doctors require the freedom to choose among all thyroid hormone pharmaceuticals and to combine them if necessary to provide the ratio and dose of T4 and/or T3 hormone that works best for the patient’s body.
Campaign website & blog
Our website and blog posts engage in three types of communication:
- Advocacy (raising awareness; calls to action; articulating our stance; recommendations, policy analysis, response to policies; news and trends)
- Patient community support (mutual encouragement, self-advocacy tips)
- Thyroid disease and therapy education (reviews of scientific articles and other relevant publications)
Continuing medical education and policy education is important for all involved in thyroid therapy, whether you are a thyroid patient, citizen, or health professional.
Education is offered at all levels, up to the highly advanced and scientific level. Many important aspects of hypothyroid therapy are beyond the knowledge of most of our doctors and even many endocrinologists (few of whom specialize in thyroid disorders beyond thyroid cancer).
Many of our posts are shared on Facebook and Twitter along with images / memes sized for both media.
Please read our full Disclaimer regarding the limitations of our website.
Patient support group (Facebook)
Our support group had been running for several years before our campaign began. In our patients-only “Canadian Thyroid Support Group,” patients take the initiative to learn from each other. We are very aware that we are not doctors and we are not offering official medical advice, but we build knowledge together. Patients face different challenges in different parts of this country. Each person’s thyroid journey is unique, including their response to thyroid medications. We often link or cite resources for each other.
We are building, and we need you.
Our movement is still gaining momentum and followers. We are in the process of becoming an official registered organization.
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.
See the links on the right sidebar:
- Join us on Facebook
- Follow us on Twitter
- Subscribe to this website’s Blog
Use our Contact link (in the header above)