Thyroid patient blaming and shaming, part 2: True barriers

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In this Part 2, I continue my rebuttal of a research article that blames thyroid patients for causing harm to themselves by making requests of doctors for tests and therapies.

In this post, I provide a fictional dialogue among three of the authors to illustrate their thought process.

I then illustrate how the “barriers” are really in the minds, attitudes, and guidelines of the doctors and endocrinologists who blame patients and shame doctors.

The paper I’m responding to is titled “Patient Requests for Tests and Treatments Impact Physician Management of Hypothyroidism.

According to this article, patients erect “barriers” to their own appropriate care when they request ways of relieving their suffering while the standard thyroid therapy programme set forth in ATA guidelines declares them biochemically euthyroid.

A fictional dialogue among the authors

Nazanene Esfandiari is the lead author of this item, and colleagues David Reyes-Gastelum, Sarah T. Hawley, Megan R. Haymart, and Maria Papaleontiou are co-authors.

They all hail from Michigan, where they are colleagues in the Department of Internal Medicine.

I imagine one day over lunch they might have discussed their recent experiences with thyroid patients. It must have started with the usual professional venting session that helps them manage their workplace stress. Over time, it somehow evolved into the plan to write this article.

As a researcher who teaches social science research methodologies, I understand the basics of the social science method this article uses. They had to agree on the design of their research, the key variables, the survey questions, and the ways they’d analyze their data.  I’ll condense this complex process so it can be dramatized in a single fictional conversation.

I’ll use italics to include direct quotes from their article, like patient preference and patient symptoms to show that these are actually ideas stated or cited in their article.

They agree with each other, saying “Yeah, I hear these complaints all the time.”

Doctor 1 says, “I think these requests are becoming a barrier to our ease of managing of their thyroid therapy. I mean, it’s really getting annoying. It’s making our professional work burdensome to us, and so many times we can be tempted to give in and just do what they’re asking for.”

Doctor 2 says, “I agree. Why can’t patients learn that their symptoms can’t possibly be their therapy’s fault when their TSH clearly says they’re euthyroid.

A normal TSH clearly proves that their medication is working, because levothyroxine monotherapy maintains an adequate level of serum T4, and the iodothyronine deiodinases provide physiologic regulation of T3 availability. I think the recent article by Gereben et al, 2015 probably confirms that further, but I haven’t read it carefully yet, to be honest.

So if patients feel hypothyroid, they probably just aren’t taking their levothyroxine properly every day in a fasted state. They just need to comply with their therapy.”

Doctor 3 says, “You know what I find really troubling?  Some patients say that they hear of other doctors giving in to these T3 requests from other patients. I really doubt it, but I’m not sure. I can imagine how some of our weaker colleagues might give in to some of them when patients cry or get angry in their offices. Some patients can be really manipulative.”

Doctor 1 says, “What can we do to stop these requests, or at least stop our fellow doctors from giving in to them?”

Doctor 3 says, “Oh I know what to do! Jonklaas and her team currently have in press (2018) an article that reports the results of a physician survey they did in 2017.  They’re analyzing which patients and physicians characteristics cause them not to follow the guidelines. We can do that too. Let’s do some research that amplifies how annoyed we are with these our demanding patients and our weak-willed peers who give in to them.”

Doctor 2 answers, “Yeah that might work! In pharmaceutical sales, when people say that nine out of ten doctors prescribe a drug, it makes doctors and patients think it must be a good drug. If we could prove that the specialists and experts among us don’t give in, that would make the doctors who do give in feel bad.”

“Great idea!” says Doctor 3. “Yeah, it’s only 2018, but it’s very possible that Jonklaas and her two coauthors could even squeeze three publications — THREE — out of a single professional survey with hypothetical questions about imaginary patients! (2018, 2019a, 2019b) What a great way to add a line, or three, to our research publication lists!””

Doctor 2 agrees, “Yeah!  Then let’s do that.  We’re medical doctors. We can make it like we’re writing about the causes of a disease, right?

Doctor 1 says, “Yes, our readers can understand articles about diseases, so maybe treating this like an article about a disease would be a good way of communicating with them about this issue.  What do you suggest?

Doctor 3 explains: “Well first we have to define the disease, or the main problem. I would like to suggest that overall adherence of physicians to evidence-based guidelines is the core sign of health, so its opposite would be the disease, namely physicians’ non-adherence.

With thyroid therapy, you’ve got to admit that it’s really simple. There’s just one drug we use, and one test we use. There’s not much room to make mistakes other than overtreatment and undertreatment.

If you really come down to it, following the guidelines just shows you how dosing LT4 and using the TSH prevents those two extremes. The worst effect of this disease is simply harm to patients.

Doctor 2 chimes in:  I think it’s clear to all of us that two patient requests in particular could potentially cause patient harm (e.g., maintaining TSH below reference range and adjusting thyroid hormone dose to symptoms or to serum T3 levels). 

If we want to persuade readers to comply with the ATA guidelines, we should really stress this harm and make it persuasive.

We have to cite multiple studies that establish “risk” of a low TSH. There are those studies showing Older patients are particularly vulnerable to cardiovascular and skeletal risks from overdose. We really have to stress adverse cardiac events of overtreatment with thyroid hormone like the possibility of  increased risk of atrial fibrillation. And of course, we always have to mention increased risk of osteoporosis particularly among postmenopausal women. 

However, let’s not mention that all these risks were found in studies of standard LT4 therapy. We don’t want readers to get the idea that T3-T4 combination therapy could be safer just because it doesn’t raise the T4 so high at the expense of a far lower T3.

Also, these studies can’t prove causality, but we should still claim that they could potentially cause patient harm.

As for the risks of adjusting dose to serum T3, I’m sure I’m right about this as a risk, but I can’t find any studies proving association with harm. We don’t have to back up all our claims with research.

Doctor 3 says, “That’s great; we’ve defined the “disease” in thyroid therapy practice.  Now the next thing is we have to define what the barriers could be to physician compliance with thyroid guidelines.

What are the variables or conditions that we perceive as getting in the way of our peers getting with the program?

Doctor 1 says “Well, that’s obvious. For sure, patient non-adherence to their therapy regime, such as skipped doses, can be a fundamental cause of this disease because it will lead to requests for adjusting thyroid hormone dose based on symptoms when biochemically euthyroid according to TSH.  

Therefore, we have to treat all sorts of patient requests for tests and treatments as if they are multiple causes of this disease.

We’re also likely to collect data that shows physicians who felt pressure from patient requests were more likely to honor them.

Doctor 3 interjects: “But what kind of pressures do doctors feel from patients? — something more must make reasonable people like doctors more likely to give in to those requests”

Doctor 2 says “I think it’s more tempting to give in to a patient’s request if a doctor has too much concern for patient dissatisfaction, so maybe that’s a key variable in the doctor’s psychology.

The idea that doctors’ unawareness of guidelines could more often lead to non-adherence to guidelines goes without saying. But to avoid offending doctors taking the survey, we should ask about that in more positive terms of having read the guidelines.

We should also include obvious variables like clinic visit time constraints, multiple providers managing thyroid hormone medication, and polypharmacy, which is the challenge of managing many prescriptions for a single patient.

Doctor 3 advises: “When it comes to analyzing our survey data, we have to perform some fancy statistical multivariate logistic regression analysis on our data just like Jonklaas and her team did to determine correlates and odds ratios (OR) that express likelihood of two variables being related or associated.

The main challenge with our study is that we can’t prove direct cause and effect, only associations or correlations. We’re working with doctors’ self-reports and doctors’ opinions of their patients and themselves based on a multitude of criteria we can’t predict.  However, there are ways we can get around this challenge.

We could strongly imply that there may be a direct cause and effect between the quantity of patient pressure and the quantity of its influence.

For example, we could imply that patients’ requests caused doctors to disobey guidelines by saying if a physician reported that patients sometimes to almost always request the aforementioned unconventional management practices, then in all but one scenario, the physician reported sometimes to almost always executing this practice 

  • (adjusting thyroid hormone dose based on symptoms when biochemically euthyroid, p=0.014;
  • use of preparations other than synthetic thyroxine, p<0.001;
  • maintaining TSH level below reference range, p<0.001).

As you can see, we could strengthen the persuasiveness of such an association by clarifying the statistical significance of these associations, the very low estimate of error, such as “p<0.001”

We understand your paradigm

Informed patients understand that you are defending your familiar, comfortable beliefs.

You are trying to put an end to this disturbing trend, the rise in patient requests and the epidemic of compassionate and wise doctors who listen to them.

Nothing less than your TSH-T4 paradigm is at stake here.

The “TSH-T4 paradigm” describes a system of therapy for hypothyroidism, rigid and unchanged since the 1990s, of prescribing only levothyroxine (LT4) monotherapy and only titrating its dose to normalize the pituitary TSH concentration, monitored yearly.

The belief is that by normalizing the TSH into the statistical reference range for people with healthy thyroid glands, LT4 therapy will also normalize Free T4, and will usually normalize Free T3 concentrations, and therefore it can fully correct the biochemical disorder of hypothyroidism.

This paradigm is set forth most recently by the American Thyroid Association (ATA) and  American Association of Clinical Endocrinologists (AACE) in their guidelines for therapy for hypothyroidism published in 2012 (Garber et al).

Within two years the ATA felt the need to follow up with further elaborations in another guidelines document (Jonklaas et al, 2014).

Your guidelines, which express this underlying paradigm, are now one with your professional identity.

You will religiously defend your paradigm whenever patients and peers’ behaviors question its authority and appropriateness.

The barriers in your minds

The true barriers to patient care are the psychological barriers experienced by  professionals like you who don’t want to hear or handle thyroid patients’ requests.

You can’t deal with repeated requests to question your guidelines, so you put up a mental barrier in response to our requests.

Your research results prove your mental block is becoming an epidemic.

Your barriers are the disease in the thyroid therapy system.

You found that “Almost half of physicians reported that patient requests for tests and treatments were somewhat to very likely to be a barrier to appropriate management of thyroid hormone therapy (46%). In particular, Endocrinologists were 2.29 times “more likely to report patient requests as a barrier” than a physician.

This just proves that half of all doctors were annoyed by being asked to question and think beyond guidelines, and they preferred to blame patients than acknowledge their own mental barriers.

Endocrinologists had a far higher likelihood of being annoyed by any request that asked them to think beyond their own guidelines, considering it a “barrier” to care.

However, our requests are not barriers.

They are attempts to resolve genuine barriers in our thyroid care that you refuse to acknowledge as such.

The barriers to resolving Endocrinology’s ignorance

I know that the authors of this article are not endocrinologists, but specialists in Internal Medicine. They are taking cues from the thyroid endocrinology experts who coauthor ATA guidelines. They are trusting in endocrinology.

So I must turn to address the guideline-writing endocrinologists who take the historical blame.

Endocrinologists, Too many of your guidelines’ prohibitions are based on ignorance, fear, and prejudice, especially prohibitions against using LT3 or desiccated thyroid in routine therapy.

The barriers to more effective thyroid therapy will never be removed until you resolve your own ignorance.

Endocrinolgists, you say these barriers (prohibitions against T3 in therapy) must remain in place to protect us. For decades you have given yourselves permission to float endlessly in a state of ignorance while we suffer from it. You’ve excused and even glorified your perpetual ignorance with the euphemism “clinical equipoise” (Jonklaas et al, 2014).

However, there is little hope of ignorance being resolved anytime soon. You have a long history of refusing to resolve your own ignorance. If you’re not going to lift a finger to resolve your ignorance, stop making therapy prohibitions based on ignorance.

You have no one to blame for your ignorance but yourselves:

  • Your field has never properly validated the normo-thyroid population’s TSH reference range as the sole surrogate endpoint of all forms of thyroid therapy, yet you require this to be the supreme biomarker that vetos all other biomarkers like FT3.  You trust this frame to such a degree that you apply normo-thyroid reference ranges as a target and/or judge in T3-T4 combination therapy and T3 monotherapy despite the fact that you know T3 dosing is a powerful TSH suppressant.
  • Your medical field has continually refused to engage in meaningful research on the long term health outcomes of LT4 monotherapy that sustains a chronic T3 deficit in patients. You may conduct studies on LT4 monotherapy in general in relation to TSH levels, but you never focus on the cohort that you force to live with low T3 for a long term.
  • You refuse to include us in studies of nonthyroidal illness (NTIS) to analyze how frequently we avoid death from non-recovery of T3 hormone. How can we recover without a thyroid gland while dosing only T4, which is largely converted to Reverse T3 in critical illness?
  • Your field refuses to inquire into the ways that a therapy-induced lower FT3 despite normal TSH may contribute to and cause illness, focusing instead on elevated FT3 and low TSH as a contribution to and cause of illness. (You assume the cause-effect relationship only goes one direction)
  • You have neglected to inquire into conditions that enable TSH suppression and mild T3 elevation to be absent of signs of thyrotoxicosis in patients on T3-dominant therapies that benignly reduce T4 while supplying enough T3. You have also failed to prove that low or absent T4 is a harm to human health during T3-dominant therapy.

We have the moral right to make requests of you. You’re not doing your duty.

Endocrinologists, we, your thyroid patients, request that you start doing the research that justifies your current therapy choices and outlines its many risks within a normalized TSH, not just its benefits. 

We also have the moral right to request and expect all pharmaceutical choices to be placed on the table. Levothyroxine is not “more bioidentical” than Liothyronine or desiccated thyroid. Both are naturally occurring in the human body. There is no thyroid hormone that is more dangerous or more safe than another. There are absolutely no biochemical grounds for pharmaceutical prejudice, there is only a way to safely and effectively dose thyroid hormones, so unlock the door to therapy options while you go do your delayed research.

We are your patients. We are vulnerable to your mistakes and misunderstandings about thyroid therapy. We are the ones who suffer lost years and decades while you withhold and forbid therapies and tests while endlessly refusing to research the harms you think must be lurking around the corner.

It is your responsibility to remove these barriers to your own ignorance about thyroid therapy. 

The barriers to patients’ trust 

Do you want to repair trust or erode it further by adding insult to injury? 

Let’s talk about removing some of the real barriers to communication, mutual respect, and consensus.

How aligned are your goals, values and evidence with ours as patients?

You say in this article you want to

“reduce overtreatment, reduce harm to patients, increase overall adherence of physicians to evidence-based guidelines and reduce undertreatment.”

We may define the word “treatment” and the signs of over- and undertreatment very differently from you.

We live in the bodies you treat, and we really do know what it’s like to be hypothyroid pre-therapy and when we accidentally forget some doses. That’s evidence you will never have the power to deny or veto with TSH numbers.

We often define “harm” differently from you.

You like to imagine future harm that may never occur on therapies you don’t like. We know it’s harmful that you force us to follow a therapy regime that our bodies don’t like. Our evidence is in our painful memory and is still present with us, but your evidence is too often hypothetical and fear-based.

You imply you have “evidence-based guidelines” but they are limited and fallible consensus documents that are dated as soon as they are published.

Respect for evidence is an attitude of continual inquiry and humility. But articles like yours subvert that attitude.

Evidence-based medicine submits itself to correction by science, no matter who does the correction. But articles like these won’t submit to correction, especially not from patients.

Patients have a right to point out the science ignored, science forgotten, science you have refused to gather for decades, science performed poorly, science that is based on fallacious reasoning, and new science discovered since the guidelines were published.

We have the right to point out the degree to which current guidelines are NOT evidence based anymore, and even in 2012 and 2014 they weren’t fully evidence based.

The barriers are crumbling

As much as you want to make your patients’ self-advocacy into the “barrier,” your guideline-worship is the barrier that currently relieves you from being held accountable.

Your guideline-worship is making you lash out to blame patients and shame doctors.

You are shielded, for now.

All you need to do is point to your guideline’s declaration that “biochemically euthyroid” means a normalized TSH, and many of your peers may believe you, for now.

You can point to the barrier of TSH every time a thyroid patient has a low T3, a hypothyroid symptom, a comorbidity, and people might believe you, for now.

But this barrier, your TSH-T4 paradigm “shield,” is rapidly crumbling.

It is a barrier based on ignorance and bias.

More scientific evidence is proving that true euthyroid status in the context of thyroid disability and therapy is not determined by TSH, but T3 nuclear occupancy rate in cells in tissues throughout the patient’s body.  The closest we get to judging occupancy rate during thyroid therapy is the levels of circulating T3 and T4 in bloodstream that enable all tissues’ responses. In contrast, TSH represents only a localized tissue response, and it can be biased low by the hypothalamus’s unique D2 conversion activity. (Bianco et al, 2019)

I still hold hope for the open-minded among you.

I have hope that some endocrinologists will receive the wisdom of the major T3 paradigm-shifters like Bianco and his colleagues and Rudolf Hoermann and his colleagues and will become leaders who can humbly admit these and other flaws of the old TSH-T4 paradigm of therapy.

If you don’t start to question the way you have erected and maintain your own mental, medical and ethical barriers, your barriers will eventually be torn down by others. 

  • Tania S. Smith

ALL SECTIONS & REFERENCE LIST

Links to all 3 parts of my rebuttal:

  1. 2019 ATA article engages in patient-blaming and doctor-shaming
  2. Thyroid patient blaming and shaming, part 2: True barriers
  3. Thyroid patient blaming & shaming, part 3: Advocacy and Science and REFERENCE LIST

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Categories: Doctors, Endocrinologists / CSEM, Research Reviews, Therapy guidelines, Therapy paradigms

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  1. Thyroid patient blaming and shaming, part 3: Advocacy and Science – Thyroid Patients Canada
  2. 2019 ATA article engages in patient-blaming and doctor-shaming – Thyroid Patients Canada

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