About our cause

Canadian-Thyroid-Patients-HEART-GREY-5002019: Our petition

On January 28, 2019 our petition will be read in the House of Commons by MP Diane Finley.

Here is the full text of our petition:

https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-1819 

It is also duplicated on this website, on our Petition page.

Here is MP Diane Finley’s website’s announcement for our petition.

Petition process

Between August 27 and December 25, 2018, we collected e-signatures on the Government of Canada’s official website.

Within only two days, we met the minimum number of signatures (500) needed to bring it to the attention of Parliament.

We are currently waiting to hear the government’s response.

What we believe and why

At this time, we are focusing our campaign on improvements to lifelong therapy for hypothyroidism.

We chose hypothyroid therapy because of the suffering many thyroid patients face due to

  • incomplete and poorly interpreted lab tests,
  • poor access to T3-based thyroid hormone medications, and
  • widespread misunderstanding of how to manage hypothyroidism to optimize therapy for the patient’s quality of life (which is not merely by normalizing TSH levels).

Please see our Campaign Statement index page.

What kinds of thyroid patients?

We are including ALL thyroid patients in our campaign because no matter what the cause of thyroid disease, we struggle with similar challenges in the medical system.

Autoimmune thyroid disease

  • Hashimoto’s thyroiditis and Atrophic thyroiditis
  • Graves’ hyperthyroidism after RAI or thyroidectomy

Other thyroid disorders

  • Thyroid Cancer after a thyroidectomy
  • Those who have had surgery for growths or nodules on the thyroid gland
  • Post-partum hypothyroidism and short-term infectious hyper- and hypothyroidism

The vast majority of thyroid patients will eventually become hypothyroid and spend the rest of their lives on thyroid hormone replacement.

When and how we started

This is a grassroots patients’ campaign that was spearheaded by a small group of active members in a support group for Canadian thyroid patients in June, 2018.

Thyroid patient knowledge

First and foremost, we take the initiative to learn from each other.

  • We routinely share our laboratory results and reference ranges, dosages,  medication types, symptoms, and related health conditions.
  • We sometimes share with each other what our doctors have said to us and the decisions and reasons they communicate to us.
  • We often share pharmacy drug pricing, drug availability and insurance coverage information.
  • We share recommendations for good thyroid doctors in various cities and regions of Canada, as well as the pricing and policies of nurse practitioners, prescribing pharmacists, hormone specialists, functional medicine doctors, and naturopaths.

We have learned from this that patients face different challenges in different parts of this country.

We have learned that each person’s thyroid journey is unique, including their response to thyroid medications.

In addition, some of us study thyroid literature to understand the biology behind our disease and the ways in which our medications work:

  • Medical research articles and reviews
  • Medical websites
  • Popular books aimed at patients

Continuing medical education is important for most thyroid patients today.

We have discovered that many important aspects of hypothyroid therapy are beyond the knowledge of most of our doctors and even our endocrinolgists (few of whom specialize in thyroid disorders beyond thyroid cancer). 

Drug shortages: The tip of the iceberg

In 2018, just as we had finished dealing with one thyroid medication shortage (Thyroid by ERFA Canada), another shortage was announced for Pfizer’s Cytomel.

We were alarmed by the continual shortages in T3-based medications and 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 drug shortages were 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 struggle with medical prejudice against T3 hormone, insufficient thyroid testing, poor medical education, doctors’ inability to see beyond TSH and laboratory reference ranges, and cost-cutting campaigns that limit our access to tests and a full range of therapy options.

Who are we?

Many of us desire to remain anonymous at this time.

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.

Our movement is still gaining momentum and followers, not yet ready to be an organization… just a website for now.

If / when we become an official organization with named public leaders, we will post our organization information and our executives’ names and profiles.

We are building, and we need you.

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