About the campaign

YouTube-Thyroidpatients-campaign

The Canadian Thyroid Patients’ Campaign is a thyroid therapy advocacy and awareness campaign co-led by a grassroots group of Canadian thyroid patients.

We believe all thyroid patients should be able to obtain accurate and complete diagnosis, thorough and relevant thyroid testing, as well as unprejudiced and individualized adjustments to optimize thyroid therapy.

For many people, a thyroid disability is a lifelong chronic disease that profoundly affects all aspects of our physical and mental health, quality of life, and our contributions as citizens.

Our aims

  • Promote public dialogue about the experiences of thyroid patients as individuals and as a diverse group.

  • Promote deeper public knowledge of thyroid hormone health and thyroid gland health.

  • Challenge contemporary policies and clinical guidelines that limit thyroid testing.

  • 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

  • Persuade national and provincial governments to acknowledge thyroid disease as a chronic illness

  • 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.

What is evidence-based thyroid activism

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
  • The tyranny of the TSH test and laboratory reference ranges over our diagnosis and therapy
  • Cost-cutting campaigns that limit our access to thyroid hormone tests
  • Medical prejudices that limit our range of pharmaceutical options for 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
  • 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 conducted on thyroid patients maintained on long-term therapy
  • Lack of studies on the health outcomes of thyroid therapy that differentiate patients by Free T3 levels, disease / gland status, and antibodies.

Read our Campaign Statement for more information on our challenges and stance.

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Whom do we advocate for?

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.

There are three general categories of thyroid patients.

1. Autoimmune thyroid diseases (AITD) patients

These can cause progressive and permanent destruction of the thyroid gland itself and other tissues in the body.

  • Hashimoto’s thyroiditis is caused by thyroid antibodies that induce thyroid inflammation (goiter), nodules, and follicular cell death and fibrosis. Death of too much thyroid tissue can result in various degrees of permanent hypothyroidism, which can cause or worsen multiple chronic diseases such as heart failure and depression. This is the most common form of AITD.
  • Graves’ Disease is caused by TSH-receptor antibodies that overstimulate active thyroid gland tissue to secrete excess thyroid hormone. Chronic hyperthyroidism can result in severe damage to organs such as bones and heart. Likewise, chronic hypothyroidism during mismanaged thyroid therapy (before or after thyroid gland removal or radioactive iodine therapy) can damage any and all tissues and organs in the body and worsen any chronic disease.
  • Atrophic thyroiditis is caused by TSH-receptor “blocking” and “cleavage” antibodies in addition to the antibodies that characterize Hashimoto’s and Graves’ disease. When the blocking and cleavage antibody act together, it causes progressive thyroid gland atrophy and fibrosis, which can lead to severe hypothyroidism. When enough thyroid gland tissue remains, changing antibody activity stimulation can bring about “remission” to euthyroid status, phases of hypothyroidism, and phases of hyperthyroidism over many years.

2. Patients with other thyroid pathologies

These can also result in permanent thyroid hormone imbalances that must be treated. These patients may or may not also have autoimmune thyroid disease:

  • Thyroid Cancer, before or after a full or partial thyroidectomy that requires thyroid hormone therapy.
  • Central or hypothyroidism due to hypothalamus or pituitary failure or drug effects. These patients cannot secrete enough bioactive TSH to stimulate a healthy thyroid gland.
  • Congenital hypothyroidism, such as birth without a thyroid gland, or defects in thyroid hormone transport.

3. Patients with a temporary thyroid condition

  • Benign growths or nodules on the thyroid gland that require thyroid surgery or removal
  • 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) can cause those who have healthy thyroid glands to experience thyroid hormone imbalance and T3 deficiency. Severe and long term T3 deficiency can hasten death and worsen illness. Only in those who survive is it temporary. Survival depends on the reawakening of TSH-stimulated T3 gland stimulation.

Campaign emphasis

At this time, our thyroid patients campaign is focusing on improvements to lifelong therapy for hypothyroidism.

  • The vast majority of patients with a thyroid disease diagnosis will become hypothyroid.
  • While hyperthyroidism and gland disorders are treatable, severe damage to the thyroid gland itself is irreversible.
  • Patients whose treatment for hypothyroidism is mismanaged and misunderstood may suffer chronic symptoms and signs of hypothyroidism in tissues throughout their body regardless of a normalized or even low TSH hormone secretion from the pituitary gland.

However, we will from time to time discuss issues in hyperthyroidism, thyroid cancer, thyroid gland health, Low T3 Syndrome and thyroid hormone sufficiency in general.

Thyroid disease is chronic, not cured

What kinds of thyroid medications do we advocate for?

ALL of the thyroid hormone pharmaceuticals. All patients should have the right to explore each of them and decide which therapy modality works best for them or which combination at any ratio:

  • Synthetic T4 (Levothyroxine, Synthroid, Euthyrox)
  • Synthetic T3 (Liothyronine, sold in Canada as Cytomel by Pfizer). Both regular and slow-release T3 are also available in powder form from compounding pharmacies.
  • Desiccated Thyroid Extract (DTE / NDT, sold in Canada as ERFA Thyroid), which contains both T4 and T3
  • Compounded thyroid medications. Powdered forms of T4 and T3 and desiccated thyroid are available at licensed compounding pharmacies across Canada.

According to science, the hormones ALL these medications provide are completely “bioidentical.” Thyroid pharma: Bioidentical yet harmful?

Therefore, there is no scientific rationale for pharmaceutical prejudice for or against any of these preparations. Pharma prejudice refuses a paradigm shift in thyroid therapy

However, individualized therapy is necessary. Each patient’s body will respond differently to a particular type, brand, dosage, and ratio of thyroid hormones.

T4 and T3 pharmaceuticals operate in very different ways and must be dosed and optimized differently.

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. Non-active ingredients and bioavailability (how much hormone can be absorbed) can make even two brands of synthetic T4 unequal.

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. See The two T4-T3 ratios that confine thyroid therapy

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.

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.

Thyroid hormone pharma-Denies-biology

Anti-discrimination in thyroid therapy

Doctors and medical systems should not limit thyroid testing or care based on non-medical categories such as income level, gender, age, education, ethnic background, skin color, religion, or geographic location.

Likewise it is discriminatory to place _medically unnecessary_ limitations on thyroid patients’ care based on their concurrent health conditions, disabilities, pregnancy status, or even patients’ dietary needs or preferences.

Likewise, a thyroid health policy that enforces T4 monotherapy as the standard of care for all hypothyroid patients is discriminatory against all who are “poor converters” of T4 hormone. Likewise, it is discriminatory against poor converters to force them to endure a limited supply of T3 within T3:T4 combination therapy. Less T3 than they need, especially in the presence of more T4 hormone than they can metabolize properly, can lead to a reduced quality of life and health for the rest of their lives. These patients’ suffering from medical ignorance and discrimination is unnecessary and preventable.

 

Thyroid patients suffer from T4 Monotherapy

TSH monotesting policy is discriminatory toward many types of thyroid patients.

It is discriminatory against patients whose TSH secretion is permanently or temporarily compromised by health factors other than their thyroid hormone supply in blood.

It is discriminatory against patients who experience an elevated TSH but “normal” T4 levels. These patients may suffer unnecessarily from genuine hypothyroidism due to insufficient T3 levels within reference range. Therapy may be withheld until TSH achieves an arbitrary level above reference range and/or until T4 drops below reference.

It is discriminatory against hypothyroid patients on therapy who are poor converters of T4 hormone into T3.

While T4-dominant therapies may maintain pituitary TSH secretion in the normal range, a level of T4 hormone that normalizes TSH cannot protect patients from tissue hypothyroidism beyond the pituitary gland. TSH secretion levels do not adjust to T4-T3 conversion rates throughout the body. TSH will not elevate in response to insufficient T3 levels in bloodstream or tissues beyond the pituitary as long as the pituitary gland alone can convert sufficient T4 into T3 locally and/or obtain enough T3 from bloodstream to meet its local needs.

As for health risks of an isolated low TSH, there is no proof that low TSH alone can directly cause harm to bone or heart without the presence of hyperthyroid levels of T4 and T3 in bloodstream that are evidently causing multiple signs and symptoms of hypermetabolism in tissues. While an isolated low TSH may define a biochemical category of subclinical hyperthyroidism, it cannot either cause or define the pathological state of thyrotoxicosis.

Our website & blog

We 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.

Many of our posts are shared on Facebook and Twitter along with images / memes sized for both media.

Please read our full Terms of use 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.

Campaign history

We began in July 2018 with a Facebook campaign and website. 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.

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.

Government responds to thyroid petition

Who are we?

Our campaign has an Advisory Group consisting mainly of thyroid patient leaders from a Canada-wide private online patient support group.

We are not affiliated with the Thyroid Foundation of Canada.

We are not affiliated with any pharmaceutical companies or medical associations.

We strive to maintain a patient’s perspective as we promote or critique thyroid research, guidelines, and trends in thyroid therapy.

Main spokesperson

Our main Campaign researcher and writer is Tania Sona Smith.

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.

Meet campaign researcher

Read more about Tania Smith in several posts:

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, though it’s a slow process involving volunteers, many of whom still suffer from thyroid disease and the imperfections of thyroid therapy.

Do you have skills and energy and inspiration to use them? Please contact us.

Contact us

See the links on the right sidebar:

  • Join us on Facebook
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  • Subscribe to this website’s Blog

Use our Contact link (in the header above)

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