I’ve decided it’s finally time to put a human face and name behind our campaign so that media can contact us and know who to talk to.
Our campaign has experienced significant growth since we started in July 2018. I’ve made 79 blog posts on thyroidpatients.ca and this is my 80th. We also have 25 web pages containing our Campaign statement and its reference list. We now have over 1,000 page likes and many positive reviews.
It’s a scary step for me to put my name out there. As I’ve explained on our website, most of us in the advisory group, including myself, do not enjoy the stress of being in the public spotlight. I hope I will have the energy and wisdom to say the right things at the right time.
Given what has happened to thyroid doctors who don’t conform to narrow views, I fear backlash against my role in our campaign could be aimed at my thyroid doctor. In our climate of medical policing, I encourage you all to keep your doctors’ names out of the public light in our campaign unless they give permission or go public themselves.
Here, I’ll answer a few questions that people might have about me.
Who are you to speak for all thyroid patients?
I am a researcher and writer who defends and raises awareness of the thyroid hormone T3 in the context of overall thyroid hormone health, thyroid gland health, and other health factors.
Does every human being and every organ and tissue need optimal T3 hormone levels for health?
Are people with healthy thyroid glands at high risk of death and continued illness when their T3 levels fall low and stay low during critical illness?
Are all thyroid patients’ T3 hormone levels at risk during thyroid disease and thyroid therapy?
Even if you only take T4 hormone in medication, or if you take no thyroid medication at all, your body still needs to secrete or convert enough of its own T3, and not too much T3, to be healthy.
Patient advocacy is not like a system of political representation. You don’t have to vote me into office for me to have a right to speak on your behalf.
Because I speak out to defend and raise awareness of your need for optimal T3, I do speak, indirectly, on your behalf.
I harp on and on about T3 hormone because I truly believe it is the key to understanding and improving thyroid therapy and everyone’s thyroid hormone health.
The T3 hormone has long been the most underappreciated and misunderstood thyroid hormone, and I believe this is the main reason why our disease and therapy is so misunderstood and poorly treated.
Maybe the fact that T3 hormone was co-discovered by a UK woman and a Canadian man, rather than by a group of American men (in the scientific and social climate of the 1950s), has something to do with the way this important hormone has been treated over the years as a minor byproduct less worthy of measurement.
Within the triad of T3, T4 and TSH hormones, T3 has the most powerful, direct influence on human health in every organ and tissue of our body. T3’s role in this triad shifts and responds in the context of thyroid gland health and thyroid therapy modality. This triad is also affected by other health conditions, medications, diet, lifestyle, and genetics. The triad shifts from fetal life to advanced age, within circadian rhythms, within pregnancy, within a monthly menstrual cycle, and as our body experiences the four seasons.
In the midst of this huge and complex system, if you don’t have a healthy thyroid gland to help you protect your T3 levels within the range that your individual body requires (which is not the same as the statistical reference range), your T3 is at risk of relative excess or deficiency.
Therefore, I believe all thyroid patients can benefit from an advocate like me.
Who are you as a thyroid patient?
I am quite an unusual thyroid patient.
No, I don’t have the most common type of thyroid disease, Hashimoto’s thyroiditis, and I haven’t had thyroid cancer or thyroidectomy.
But I am thyroidless and severely hypothyroid without medication.
I have three rare conditions: 1) autoimmune Atrophic Thyroiditis, 2) the clear pattern of a partial SBP2 deficiency, and 3) the telltale signs of resistance to thyroid hormone (RTH).
I’ll summarize briefly.
As an Atrophic Thyroiditis patient, autoimmune attack by two variants of the Graves’ disease antibody has shrunk my thyroid gland down to a fibrosed flap of flesh about 0.5 mL in volume. I am just like a person after a total thyroidectomy.
Because of my “partial SBP2 deficiency,” I am also among the poorest of poor converters of T4 hormone into T3 hormone.
Due to reduced receptor sensitivity to T3 thyroid hormone, my thyroid hormone levels need to be slightly higher than the statistical average reference range to render me euthyroid.
All three of my conditions caused my TSH test results to fluctuate mostly high above range on T4 monotherapy. My TSH had no logical relationship to my thyroid hormone levels and was a false guide for over a decade on standard therapy.
After up to 13 years of suffering with chronic low T3 syndrome and high-normal Free T4 while on standard thyroid therapy (Synthroid), I developed severe hypothyroid manifestations and an adverse cardiovascular response to T4 medication. I can no longer take T4 medication without body-jolting cardiovascular spasms in my aortic branches and without causing both my thyroid hormone levels to plummet below reference range due to an increased rate of thyroid hormone inactivation.
For the better part of three years now (since Spring 2016) I have been happily maintained on a full thyroid replacement dose of T3 monotherapy.
I am truly “powered by T3” and T3 alone, since I maintain euthyroid status and overall health without any T4 or TSH in my body.
Living on T3 alone is something many people think is impossible or unhealthy, but I’m part of a worldwide network of people who flourish on this therapy by necessity. Taking several doses of T3 every day is challenging. But I’m an adult, and it is under my conscious control. It can be a very effective last-resort therapy when all other thyroid therapy modalities and combinations have failed or cause harm, as they have in my case. I will say more in other posts in future.
How do you know all this?
Thanks to the better thyroid care provided by my current doctors, I have had the mental energy to analyze my laboratory test history, symptom history, and genetic test results in the light of my growing understanding of thyroid science.
I will have to write a separate post that provides the data and cites the scientific research that clearly confirms my diagnosis. I’m sure I’d be an interesting case to many curious thyroid doctors and researchers.
I believe rare cases are more common than they appear to be. After all, my conditions remained undiagnosed for a very long time. People can’t see something until they know what patterns to look for.
In part 2, I will write about the kinds of research I do in the scientific literature on thyroid, how I see thyroid patient advocacy, and my hopes for this campaign’s future.