World Thyroid Day 2025 patient video

To celebrate World Thyroid Day 2025, our patient-led nonprofit is sharing the documentary “Bye Bye Butterfly” by Canadian thyroid patient, filmmaker, and Thyroid Patients Canada board member, Kristine Thelle.

Below the video, read Kristine’s story about making the video.

Please share the video to spread awareness!

My story

By Kristine Thelle

The reason I got interested in this topic is that I had my thyroid removed in October 2015. It was for me a question of life or death, as my swollen thyroid had become so big it was squeezing my windpipe. I was not really sick before this, all my blood tests were always within normal range, even though I had what is called a multinodular goiter for 18 years.

After my thyroidectomy in 2015, it felt as if I was catapulted into chronic disease. My body hurt, my joints hurt, I put on weight, and my fingers were cold. I had suddenly become hypothyroid, and I had to take warm baths to warm up. My head was a total brain fog. I wasn’t used to being sick. I was like the frog that you put into boiling water, and has the reflexes to jump out. If I had been slowly warming up in lukewarm water for years, I would have gotten used to being so sick, and I don’t think I would have had even the energy to jump out. I decided that this would not be my life for the next 30 years!

So when I didn’t get better on standard synthetic thyroid hormone medication, I started researching other options. I got online, joined Facebook groups and learnt a lot about thyroid issues.

I also learnt that my condition might have been reversed if I had done something in the very beginning of this journey. This made me angry. I was angry at doctors who just said wait and see, but also angry at myself for having listened to them and having been too patient.

My journey as a filmmaker

During this time I had just started taking documentary filmmaking classes, and I quickly understood that here was a story I needed to tell. I started filming my doctor’s appointments, the blood tests, little everyday scenes. I took film production classes and screenwriting classes and was chosen for a mentorship with a producer. I wrote and rewrote the script.

In 2018, I was accepted into a prestigeous film school in Montreal focusing on documentary film production, always with the goal of finishing this film.

I made this film because I think it’s time for a change.

With a background in journalism, I feel I have a voice and should use it for all those who are still sick and don’t have the energy to tell their story — because this is a story that has to be told.

Thyroid diseases in Canada

Canada doesn’t monitor the prevalence of thyroid diseases other than thyroid cancer, and as a result, we don’t have very good statistics for all thyroid diseases in Canada. In 2007-2008, a survey estimated 10% of the Canadian population 45 years and older had hypothyroidism (Domingo et al, 2021). The prevalence increases with age and is much higher in women than in men.

However, thyroid diseases go beyond the most common disorder of hypothyroidism. Thyroid diseases are diverse. They also include hyperthyroidism, goiter, nodules, and thyroid cancer. Thyroid diseases affect all age groups and both sexes.

The true percentage of Canadians with thyroid disease is likely higher than 10% since many people experience delayed diagnosis, or some are misdiagnosed with other illnesses such as depression. Deng (2025) and colleagues say “Currently, in Canada, routine health screening in the primary care setting does not include thyroid abnormalities.”

However, screening by measuring pituitary TSH (thyroid stimulating hormone), the most common method of screening, did not help me, and does not flag all cases. Nobody did anything about my “euthyroid” multinodular goiter for 18 years until it got so large that it interfered with breathing.

Many people who begin with goiter (like me), thyroid cancer, or hyperthyroidism are “treated” with a thyroidectomy or radioiodine ablation, after which they join the larger hypothyroid population and require daily thyroid hormone replacement.

Much like diabetes, when hypothyroidism is “treated,” it is not “cured.” It is just managed, well or poorly.

We need to take more seriously a disease that many patients feel is being neglected, and we need more research to find out what causes our thyroids to malfunction. We need to learn how to prevent, whenever possible, the loss of the thyroid gland. We also need to teach doctors how to manage permanent hypothyroidism more effectively.

The fight for optimal thyroid therapy

When one has a chronic illness, one shouldn’t have to fight to get individually optimized treatment, a fight that many patients endure without energy. Too many doctors don’t realize that effective treatment goes beyond merely normalizing the TSH.

I am not trying to criticize the medical profession. I am the daughter of a medical professor; I have a long line of nurses and doctors in the family. But I want to question the lack of openness toward new ideas within medicine, especially when it comes to thyroid problems.

I have a feeling that since this is mostly a women’s disease, we are being patronized and not listened to.

Why the butterfly?

The reference to the butterfly in the title is because of the shape of the thyroid gland. It looks a bit like a butterfly.

Losing such a vital organ as the thyroid is both physically and emotionally challenging. There is a mourning that we must do as a patient, an acceptance. Many people I’ve spoken with say they miss the person they were before surgery, almost like a loss of identity.

But a butterfly also symbolizes a transformation which can be positive. This film becomes for me the ultimate expression of myself and is part of my healing. I want to show how we can emerge stronger following this transformation that illness imposes on us.

Like the butterfly, we too can emerge from the cocoon with wings.

We can find ways to fight to feel better.

• Kristine Thelle

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What can thyroid patients do?

By Thyroid Patients Canada

Subscribe (in the footer below) to this Thyroid Patients Canada blog to keep up to date with our posts and activities.

Join online patient support groups to connect with patients who can help you understand your condition better and engage in self-advocacy within your healthcare system. We recommend:

• Thyroid Patients Canada Support https://www.facebook.com/groups/thyroidpatientscanada for science-based, evidence-based, well-moderated and friendly peer support.
• For Francophone patients: Thyroid Quebec / Thyroïde Quebec

Donate and support Thyroid Patients Canada. We are trying to build our nonprofit and maintain our website and support group, but it’s not easy as a group of patient volutneers.

What can doctors do?

• Listen to your thyroid patients, not just their TSH.
• Learn more about thyroid diseases and their management by going beyond the guidelines and flowcharts.
  • Consult the thyroid endocrinologist Antonio Bianco’s book, “Rethinking Hypothyroidism” to understand the controversies surrounding hypothyroid treatment.
  • Guidelines do not replace clinical judgment. They do not guide individualized treatment, but rather treatment for the masses, or the “average” thyroid patient. They do not provide the advanced knowledge required to treat cases that do not respond well to TSH-normalized LT4 monotherapy or the common LT3-limited dose ratios seen in LT3/LT4 combination therapy.
  • Historically, all thyroid pharmaceuticals received grandfathered regulatory approval when organizations like the FDA were established. This allowed clinicians the freedom to choose among thyroid pharmaceuticals and combine them. In the mid-1970s LT4 prescriptions surpassed LT3-inclusive desiccated thyroid after it was confirmed that T4 converts to T3 in the human body. LT4 monotherapy was adopted based on medical persuasion without being rigorously tested to ensure treatment with LT4 alone was safe, effective, and “superior” for all patients. Circulating Free T4 is capable of normalizing TSH, but T4 does not always convert to “enough” circulating and intracellular T3 in an individual with little to no thyroid gland function, T3-wasting chronic diseases, and/or genetic handicaps.
  • Despite a normal or low TSH, an estimated 20% of patients on standard levothyroxine (LT4) monotherapy remain symptomatic (Casula et al, 2023). Patients with symptoms often have other measurable signs of poorly controlled hypothyroidism. Signs are diverse and include very low FT3/FT4 ratios and classic tissue responses such as high cholesterol.
  • Many patients who fare poorly on LT4 monotherapy have improved health and quality of life on LT3-inclusive therapy.
    • Patients know this from many years of online patient support group experience. Patient peer support tends to focus on patients whose generalized tissue response to LT4 is discordant with their pituitary TSH.
    • Although many “randomized controlled trials” (RCTs) have been conducted on combination LT4/LT3 therapy and found no difference between it and LT4, this “randomization” of the patient group is not the proper approach to quantify the benefits felt by the subgroup of those who suffer on standard therapy. Nor is an approach that rigidly prescribes the LT4/LT3 combination dose ratio and fails to customize it to the patient — and this rigidity is a common approach in RCTs.
  • However, the use of LT3 requires a physician to develop special expertise beyond the use of LT4. Oral dosing of T3 is not like thyroidal secretion of T3, even if you use a slow-release preparation (see below).
    • Oral LT3 has an early, high FT3 peak, followed by a fast clearance rate. Its properties as an oral pharmaceutical can distort TSH response and can suppress TSH long after FT3 has returned into the normal range (Jonklaas et al, 2015). As a result, TSH alone cannot be used as the target of treatment.
    • Combination therapy guidelines (ETA guidelines by Wiersinga et al, 2013 and International consensus statement by Jonklaas et al, 2021) state that FT3, FT4 and TSH testing is recommended in both clinical trials and individual treatment. However, many insurance companies and Canadian provincial healthcare pinch pennies by cancelling FT3 and FT4 testing whenever TSH is normal by wrongfully declaring these tests “unnecessary” for everyone. Ethically, healthcare systems must allow clinicians a way to bypass this cancellation algorithm if they wish to treat all hypothyroid patients effectively.
    • Combination therapy dose ratios and LT3 dose timing need to be customized to the individual’s thyroid condition, chronic diseases, and genetic metabolic handicaps.
    • Our website provides many science-based resources for physicians, such as our article “Free T3 peaks and valleys in T3 and NDT therapy.”
• Explore the full range of thyroid hormone pharmaceuticals approved by Health Canada. As you do so, avoid “thyroid pharma prejudice,” a bias for or against one more pharmaceutical options that doesn’t consider the most important variable of diverse patient response. Thyroid pharma prejudice harms patients who fare best on a maligned thyroid pharmaceutical. Canadian thyroid hormone options currently include:
  • Two brands of levothyroxine (LT4) — 1) Synthroid and 2) Eltroxin,
  • Two brands of liothyronine (LT3) — 1) Cytomel and 2) TEVA. Note that patients often report that TEVA is not therapeutically bioequivalent to Cytomel at the same dose, despite the bioequivalence study performed on healthy subjects, which is reported in the TEVA monograph).
  • Desiccated thyroid extract (DTE) manufactured in Canada — “Thyroid,” by Searchlight pharma (which recently acquired ERFA Thyroid). See the Health Canada product monograph PDF.
• Be aware that Canadian compounding pharmacies also offer slow-release LT3 preparations (i.e. using hypromellose), customized doses, and customized fillers for patients who are hypersensitive to the tablets available on the market. They can offer all three subclasses of thyroid hormone pharma — 1) levothyroxine (LT4), 2) liothyronine (LT3), and 3) porcine thyroid hormone powder, all by Medisca. Compounded medications are not regulated by Health Canada, but they can be well monitored by full thyroid hormone testing.