On February 11, 2020, Thyroid Patients Canada officially became a nonprofit corporation.
It’s the first step toward becoming an official registered charity.
Three of us patient peer-leaders put together the paperwork — Tania, Mona and Alexa. There’s a team of about 12-16 members on our Advisory Group, but like any organization, not everyone’s capable of being actively involved to the same degree all the time.
Our next steps include:
- Registering in Ontario, where most of our patient leaders reside. We have to be registered in a province as well as federally
- Establishing our bylaws
- Electing officers. It’s likely that Tania S. Smith will be President.
- Getting a bank account set up
- Getting legal advice and some financial advice
I’m so happy we finally came to this stage.
We will move along at a pace we can manage, since we are volunteers and we all have personal and professional lives to manage.
Where we’ve come from
It’s interesting to see that we’ve been doing this “campaign” since July 2018, when we started our federal petition.
I (Tania S. Smith) and another Tania P. set up the framework of this website, and I first wrote up a really big Campaign Statement with 200 references that you can still see posted on this website’s pages.
We got our Facebook pages and groups going, and I started writing posts and creating visual memes like this old Classic.
My values, my approach
From the start, I knew that the T3 hormone was the key to improving thyroid therapy.
I have been avidly reading thyroid science since my own Low T3 health crisis in 2016. Back then, I was deeply inspired by Abdalla and Bianco’s article “Defending plasma T3 is a biological priority.” I didn’t understand all its terminology or concepts yet, but I knew enough to understand that my low Free T3 results should not be dismissed.
My developing scientific knowledge helped me gain confidence in self-advocacy. It paved my path forward while I was struggling with doctors who wondered why I was presenting at Emergency.
I have a very extreme metabolic handicap and so I moved from T4 monotherapy all the way to T3 monotherapy, and as I did so, I recovered from very mysterious and debilitating symptoms. (Here’s a bit of my T3 monotherapy story)
When we gathered together our group and started our blog and our petition, I knew that shifting from a TSH-T4 paradigm to a T3 paradigm is going to be best for everyone.
It’s very democratic, actually. If you have T3, I advocate for you. Even patients without thyroid disorders can suffer loss of T3, in Low T3 Syndrome (a.k.a. Nonthyroidal Illness, NTIS).
T3 hormone goes into every organ and tissue where it does different things. Essential things. It rules Graves hyper, and it rules in Hashi’s, and thyroid cancer patients need it to survive too. We’re all connected if we depend on this hormone, so I should care about your T3 health too.
In fact, the only things mighty T3 can’t do are things that involve health care politics. Free T3 can’t just hop back on the menu of Canada’s Choosing Wisely list of sacred tests to never cut, never forbid, and tests to always ensure are available to treated thyroid patients without having to go through the TSH door first.
I have some interpersonal connections with the UK thyroid activists, and their system is probably one of the worst in the world right now. T3 has been knocked off the list of available and affordable therapies in the United Kingdom.
Isn’t it so ironic that the most powerful thyroid hormone in the human body, a hormone most transporters prefer to carry into cells, a hormone that no cellular receptor would refuse to bond with (except snobby TRA2 receptors) has been relatively disenfranchised and oppressed by endocrinology organizations since the 1990s?
In addition to T3, I knew that science-based advocacy was the way to go, even if it meant that sometimes I wrote stuff over the heads of the average brain-fogged patient. Yes we need practical tips too, and encouragement. But as a professor, I knew I’d have to appeal to doctors, to intellectuals, to policymakers. At the foundations are people who look through microscopes, the researchers. You can’t transform a system at its branches without going down deep to the roots and understanding where all the knowledge comes from, understanding the sap and the bark and the DNA.
In addition to T3 and science-based advocacy, I knew independence and edginess was going to be key.
I mean, there has to be an expression of the valid and powerful emotions that carry me (us) forward — a mixed sense of injustice, frustration, inspiration and hope. Not just brains. VOICES.
I don’t want this to be an organization co-opted by doctors and pharmaceutical companies, as much as we really really and I mean REALLY depend on them and need them for survival. No, we have a right to be a separate voice in this discussion.
We Are Patients and this is OUR disease and OUR bodies and we can tell you, O Researchers and Guideline writers, when you are being ridiculous or patronizing or bullying or promoting fallacies. We will no longer put up with your junk, we will hold you to account. You ought to know better. Do better. (Okay, some of you researchers are absolutely awesome!)
Yes I have a bone to pick with the leaders who made this mess starting in the 1970s with vitriolic and unreasonable anti-desiccated thyroid pharmaceutical prejudice.
We thyroid patients have been neglected and oppressed by those who are supposed to be healing us. You’ve used our medications as pharmaceutical restraints by keeping our T3 low. As a result, for decades we would not have mental energy to stand up for ourselves.
Well, I’m now powered by T3. We all are. I am even more so, on the T3 monotherapy, way out there on a limb, but it’s a form of therapy that actually fits my body for a change, rather than me forcing to fit the medication. I know the difference. Why was I expected to live a diminished life for 13 years, heading for a health disaster with doctors who thought my low T3 was okay?
We all deserve a thyroid medication that is customized to what our bodies need.
It should not be that hard. Here’s the full menu: Take two hormones and find your place on the spectrum between 100% T3 and 100% T4, and then pick your mix of animal derived or synthetic, plus whatever your own gland can still make, and adjust your doses and ratios till you find your sweet spot.
Oh if it were only that easy. We will do what we can to make it easier.
I don’t think our stats are anything to boast of really, but it’s interesting and I like numbers and patterns, so I’ll share some.
Here’s some info about where people are in the world who read this website.
Here are some stats on monthly views of posts since we started in July 2018
So we’re growing! The decline is perhaps just that I’ve slowed down lately in the number of posts per week.
On Facebook we have 2,110 followers on the Page and 1,031 members of our Thyroidpatients.ca Public Group. Our organizaton also arose from among the admins and active members of the Canadian Thyroid Support Group, which currently has 3,205 members.
We have a Twitter account, but I haven’t had time to post our stuff there since last summer, and I guess we need someone else to take it up in our leadership team. Facebook is enough for me to handle.
My personal hopes & plans
In my professional life (Tania Smith speaking here) as a university professor in Communication, I plan to shift some of my research areas to thyroid science rhetoric and thyroid patient advocacy so that I can have more of an overlap between this and my job.
I have a Research & Scholarship Leave (paid break from teaching & admin) coming up for next academic year, for which I’m grateful. It will give me the time to wrap up some loose ends on projects and start some new things.
It’s hard not to stop thinking about thyroid. I might as well make it more of a central Health Communication research area.
I hope to engage in organizing people and planning some patient-led research (since I’m a researcher and I care deeply about research), as well as publishing some rhetorical analyses of thyroid science in journals.
Maybe I’ll also think of putting together some materials from this website (all written by me so far) as a academic/public book.
And now I’ve stayed up late (or early) again, writing my letter to the Alberta Precision Laboratories, and this post!
So I better get some of this… Sleep.
Tania S. Smith