Not a conspiracy theory: Our campaign tactics

The thyroid patients' campaign is not a conspiracy theory

This weekend, behind the scenes in messages in our advisory group, we had a very interesting dialogue with someone who was concerned about the tactics we use in this campaign, specifically in our most recent post about Dr Matsusaki’s thyroid clinic in Nova Scotia.

Let’s call this “Person X,” to avoid even assigning them a gender.

They felt that our tactics were too “Us versus Them.” And they accused us of not having evidence to back up our claims.

Of course, we listen to people, and their concerns had some fruitful results. It made me immediately add 30 citations to the post that went viral, just in case anyone else is not reading the other posts on our blog that cite the scientific literature we alluded to within it. It also made me double-check with Dr. Matsusaki’s closest supporters to ensure that our post was based on the facts. Yes, it’s fine.

The conversation we had with person X also inspired me and another campaign co-leader to briefly discuss the likely perception out there that we are just spinning conspiracy theories.

Therefore, today I want to make two points clear:

First of all, we aren’t promoting a “conspiracy theory.” The conspiracy is simply too out in the open to be merely a theory.

Secondly, we are not engaging in “us versus them” rhetoric without a good ethical cause to do so, and we’re being very careful about who we identify as “them.”

What are we doing instead?  We are engaging in a fair public debate and patient advocacy based on openly verifiable facts.

If something is very wrong, one should be outraged.

Just as in law courts, there is a defendant and an accuser. We take the case to the public sphere because the doctor’s office is not a space where we can have a hearing or a fair trial. We cite scientific articles on T3 hormone and on thyroid therapy.

As active participants and leaders in a thyroid patient support community, we have had many cumulative years of personal experience with diverse thyroid diseases and therapies, and we have heard many patient stories of suffering and loss that line up with therapies and lab test results, and such evidence is also backed up in the endocrinology literature. That is evidence, just like legal testimony is evidence.

A lot of that testimony occurs in the comments on our posts. Patients have the right to tell their stories publicly and be heard.

Both our collective patient experience and our research proves that our stance is scientific and just, and that’s why our blog at thyroidpatients.ca continually reviews and cites scientific literature.

NOT A CONSPIRACY THEORY

Here is the definition of a conspiracy theory:

“a theory that explains an event or set of circumstances as the result of a secret plot by usually powerful conspirators” (Merriam-Webster).

This definition does not apply to our campaign.

In thyroid therapy, the policy, plan, and various rationales behind limiting patients’ care to one test and one hormone is NOT SECRET. 

These strategies are OPENLY being discussed in scientific literature and websites that you can cite and fact-check. You can go straight to the source of most of them, the ATA Guidelines and related publications. A long history of this planning and policy-making activity is found in the PubMed database online and in university libraries. You can also read the Choosing Wisely Toolkit against T3 and T4 testing.

To conspire openly — is still to conspire.

The dictionaries’ first definition of “to conspire” has a very negative connotation, but the second most common definition of “to conspire” is neutral: “to act in harmony toward a common end.”

What we can see openly is various medical forces and associations actively conspiring … and the effects are often real harm to patients, and systematic blindness to that harm, and dismissal of the evidence of harm.

The limitations and flaws of these policies are not well circulated and seem to be kept a secret. We “conspire” to change that.

WHO ARE “THEY”

Since we do often engage in defensive “us versus them” tactics, who are “they” that we oppose?

Our fight is NOT against the medical profession as a whole, but a faction within it, and a faction among endocrinology researchers, that has closed their minds about thyroid therapy.

But we ARE opposed to medical associations’ stances that limit our therapy and testing options unreasonably and unscientifically, causing suffering and financial cost to patients and harm to doctors’ careers.

Our fight is NOT with T4 monotherapy, because some patients do fare well on this form of therapy. Research shows that patients are more likely to do well if they have residual thyroid gland function and/or they are a very good converter of T4 into T3 hormone. (5)

T4 monotherapy CAN work well for some patients when TSH is kept very low in range, given that the average TSH in healthy people is 1.5-1.6 and rarely goes above 2.5. Some patients can promote their health on this therapy with dietary adjustments and/or self-pay medical care.

Our fight is NOT even with “Big Pharma” per se, because we would suffer or die without thyroid medications made by pharmaceuticals, and “Small Pharma” can be just as cruel when monopolies that sell T3-based thyroid meds drive up prices or create shortages.

However, we ARE wary of guidelines that implicitly establish partnerships between pharmaceuticals and medical professionals by assuming every hypothyroid patient is currently taking levothyroxine or should be. Mass persuasion to prescribe one medication alone has rigged the marketplace and limited choice and awareness of diversity. This system has unfairly established and entrenched T4 monotherapy’s dominance over all thyroid therapy. Patients and society pay with ignorance of T3 therapies among the masses, myths and fearmongering about T3 / T4 hormone sources and ratios, and price hikes and shortages for T3-based therapy.

THE CORE OF OUR DEFENSE

We fight an outdated medical paradigm for thyroid therapy, a closed-minded system now firmly institutionalized like an impersonal machine.

We call it the TSH-T4 paradigm, because it idolizes the TSH test and T4 medication as sufficient for all hypothyroid patients. This paradigm was solidified in the 1970s.

We defend what we call the T3 paradigm, which prioritizes patients’ individual T3 levels and our unique physiological responses to a variety thyroid therapy types, T3:T4 ratios, and doses.

We are not alone in our defense.

Endocrinology researchers have been calling for a paradigm shift in thyroid science and thyroid therapy. The number of calls for change has increased since the 2012 ATA guidelines. (See references 1-7)

We as thyroid patients stand with these more enlightened endocrinology researchers.

We are literally sick of the open conspiracy against humanity’s T3 hormone, and we have the moral imperative and personal urgency to point it out.

Part 2

Our campaign tactics

CONSPIRACY THEORY LABELLING

An interesting article was recently published on The Conversation, an academic news magazine with international branches: “In defence of conspiracy theories (and why the term is a misnomer)” (8) by David Coady, a lecturer in philosophy.

What he says is relevant to anyone who might label us as conspiracy theorists.

“Indeed, the net effect of terms such as ‘conspiracy theory’ and ‘conspiracism’ is to silence people who are the victims of conspiracy, or who (rightly or wrongly) suspect conspiracies may be occurring.”

“These terms serve to herd respectable opinion in ways that suit the interests of the powerful.” …

“although [the definition of “conspiracy theory”] lacks a fixed meaning, it does serve a fixed function. It’s a function similar to that served by the term “heresy” in medieval Europe.”

“In both cases these are terms of propaganda, used to stigmatise and marginalise people who have beliefs that conflict with officially sanctioned or orthodox beliefs of the time and place in question.” …

“If, as I believe, the treatment of those labelled as “conspiracy theorists” in our culture is analogous to the treatment of those labelled as “heretics” in medieval Europe, then the role of psychologists and social scientists in this treatment is analogous to that of the Inquisition.”

“I hope and believe that in the future these terms will be widely recognised for what they are: the products of an irrational and authoritarian outlook.”

This analogy of the Inquisition leads me to consider an unnamed, disconnected type of people who promote and defend the TSH-T4 paradigm as its “zealots.”

We thyroid patients can be full of zeal too, for our own cause.

THE TSH-T4 ZEALOTS

Medical associations tend to be very conservative. As a group they work to defend their existing paradigm when they establish consensus guidelines.

People often forget that guidelines cannot and should not lay down pre-set rules about how every doctor should treat every individual patient.

When a group of doctors become champions of a limited paradigm and continue to actively oppose all others at all costs, what they engage in is not just “evidence-based medicine” but “evidence-selective medicine.”

You can even add the letter “i” and call it “Evidence-bIased medicine.”

As a paradigm gets entrenched as the status quo over many decades, people stop questioning its basis. As cracks appear, defenders whitewash over them. When the controversies are whitewashed and buried, it makes it seem like all thyroid science speaks with a unified voice.

With the appearance of medical consensus backing them up, TSH-T4 thyroid zealots start policing the boundaries as if the guidelines express universal biological laws.

Zealots guard health care policies to ensure that no doctor or patient transgresses them without triggering a defense of the boundaries.

Zealots mount inquisitions against transgressive (innovative) doctors and treat them as if they are unscientific heretics.

Zealots ridicule and demean boundary-crossing patients to their faces in the doctor’s office. They can drive some rebuffed patients to roam from doctor to doctor and seek self-pay medical services or even self-medication out of desperation.

The TSH-T4 paradigm’s zealots are not necessarily bad people at their core. They think they are correct, scientific, and protecting our health. They might be open to reason and evidence, or so we hope. But we are against the actual harm they are doing to thyroid patients, thyroid doctors, thyroid research, our public health care systems, and the thyroid pharmaceutial marketplace.

NEVER DEMONIZE A PERSON

Our campaign has a third ethic, besides our grounding in both science and patient experience.

What we attack in this campaign is not a single person … unless an opponent wants to come out and name themselves by name, then we will be happy to debate your arguments and evidence as an individual. Openly and fairly.

This is why one of our policies in our Facebook forum is not to name any of our good doctors OR bad doctors publicly by name if that doctor has served as your personal physician, unless they give permission to be named.

However, I fear the same ethic won’t be applied by those who oppose us.

If our campaign’s leadership had a face and name, will that person be the focus of ad hominem attacks against that patient’s background, gender, appearance, career, and personal biography? Will their thyroid doctor and all that doctor’s other patients be at risk of inquisition? Will the crux of their attack be that the patient is naive and unscientific, and will the zealots never carefully examine the many articles the patient cites?

WHO DO YOU CONSPIRE WITH?

Given that “to conspire” means “to act in harmony toward a common end,” we all choose to conspire with other people with similar values and goals.

Even if you belong to a community, you can choose to accept, question, or reject their ideologies and paradigms. You can change our mind as you sift through evidence and you can also distribute your alliances across groups.

Do your research on both paradigms. Then take a stand.

Even standing between paradigms is better than being a blind adherent of the standard paradigm.

The T3 paradigm does not neglect TSH or T4 but gives T3 hormone its rightful, prominent place in human health — both within and beyond thyroid therapy.

REFERENCES

(1) Wiersinga, W. M. (2014). Paradigm shifts in thyroid hormone replacement therapies for hypothyroidism. Nature Reviews Endocrinology, 10(3), 164–174. https://doi.org/10.1038/nrendo.2013.258

(2) Abdalla, S. M., & Bianco, A. C. (2014). Defending plasma T3 is a biological priority. Clinical Endocrinology, 81(5), 633–641. https://doi.org/10.1111/cen.12538

(3) Peterson, S. J., McAninch, E. A., & Bianco, A. C. (2016). Is a Normal TSH Synonymous With “Euthyroidism” in Levothyroxine Monotherapy? The Journal of Clinical Endocrinology & Metabolism, 101(12), 4964–4973. https://doi.org/10.1210/jc.2016-2660

(4) See other articles co-published by Antonio Bianco. He has published a lot regarding the deiodinases that convert T4 into T3 or RT3.  In publications with Peterson and Mcaninch he discusses thyroid therapy.

(5) See all articles coauthored by Hoermann, Midgley, Larisch and Dietrich, 2012-2019, many of which are cited in my earlier post that presents my research proposal: Choosing Wisely chooses not to hear thyroid patient’s research presentation

(6) Benhadi, N., Fliers, E., Visser, T. J., Reitsma, J. B., & Wiersinga, W. M. (2010). Pilot study on the assessment of the setpoint of the hypothalamus–pituitary–thyroid axis in healthy volunteers. European Journal of Endocrinology, 162(2), 323–329. https://doi.org/10.1530/EJE-09-0655

(7) Beck, M. (2016, April 12). Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism. Wall Street Journal. Retrieved from https://www.wsj.com/articles/doctors-hear-patients-calls-for-new-approaches-to-hypothyroidism-1460401118

(8) Coady, D. (2018, September 12). In defence of conspiracy theories (and why the term is a misnomer). Retrieved April 22, 2019, from The Conversation website: http://theconversation.com/in-defence-of-conspiracy-theories-and-why-the-term-is-a-misnomer-101678

 

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