2019 ATA article engages in patient-blaming and doctor-shaming

Blaming-Shaming-Part1Some members of the American Thyroid Association (ATA) have achieved a new ethical low.

They have published in their official scientific journal, Thyroid, an article that blames thyroid patients for causing harm to themselves by making requests of doctors for tests and therapies.

They titled their paper “Patient Requests for Tests and Treatments Impact Physician Management of Hypothyroidism.”

Firstly, 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.

The writers of this article attribute the cause of thyroid therapy barriers to be not only patients’ requests but patients’ underlying dissatisfaction and non-adherence to the ATA programme due to lack of patient education.

The patient requests they and their surveyed doctors find most troubling are requests for dose adjustments based on symptoms, prescription of T3-based therapies, adjusting dose to T3 levels, and permitting a TSH below reference.

These they interpret as harmful barriers to care rather than improvements or ways of obtaining relief and health.

Secondly, the article also shames doctors.

They want to make all doctors feel foolish if they listen to patients and take detours away from the ATA-authorized form of thyroid hormone torture.

The article claims that physicians who adhere to patient requests rather than the ATA guidelines are causing harm to patients’ health.  One of the physician characteristics they find most troubling is concern for patient dissatisfaction.

Well, dear authors, all Internal Medicine doctors from Michigan, it seems that you’re tired of dealing with these patient “barriers” in the privacy of your offices, and you want to wag your finger in print at all doctors who have colored outside the guidelines.

You’ve resorted to a public form of medical bullying. It’s veiled in scientific language and odds ratio calculations.

It seems you are just asking for a patient’s public rebuttal of your article.

In fact, you’ve given so much for me to talk about that I’ve had to make this rebuttal into  a three-part series.

In this post, part 1, I annotate the article’s abstract, and I illustrate the serious ethical problems with your attack on thyroid patients and doctors.

The study’s abstract

This is a direct quote, with minor edits: 1) I’ve broken into paragraphs and bullet points. 2) I’ve added [explanations] for terminology. 3) I’ve underlined the words “requests” and “barrier” so you can see how prominent this concept is.

Background: Levothyroxine is one of the most commonly prescribed medications in the United States. Although prior research focused on over- and undertreatment and patient dissatisfaction with thyroid hormone, little is known about physician-reported barriers to managing thyroid hormone therapy. In addition, the impact of patient requests for tests and treatments on hypothyroidism management remains unexplored.

Methods: We randomly surveyed physician members of the Endocrine Society, American Academy of Family Practice and American Geriatrics Society. Respondents were asked to rate barriers to management of thyroid hormone therapy. We conducted multivariable logistic regression analyses to determine correlates with physician report of the most commonly reported barriers, including patient requests.

Results: Response rate was 63% (359/566).

    • Almost half of the physicians reported that patient requests for tests and treatments were somewhat to very likely to being a barrier to appropriate management of thyroid hormone therapy (46%).
    • Endocrinologists (odds ratio [OR] = 2.29 [95% confidence interval, CI 1.03-5.23], compared with primary care physicians) and physicians with more than 25% of patients on thyroid hormone therapy per year (OR = 1.90 [CI 1.05-3.46], compared with those with <25% patients per year) were more likely to report patient requests as a barrier. Physicians with more years in practice were less likely to do so (11-20 years: OR = 0.44 [CI 0.21-0.89]; >20 years: OR = 0.24 [CI 0.12-0.46], compared with ≤10 years).
    • Physician-reported patient requests included requests for
      • [prescriptions for T3-based pharmaceutical] preparations other than synthetic thyroxine [LT4, levothyroxine] (52%),
      • adjusting thyroid hormone dose based on symptoms when biochemically euthyroid [based on a normal TSH] (52%),
      • maintaining thyrotropin [TSH] level below the reference range (32%), and
      • adjusting dose according to serum T3 level (21%).
    • Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them (p < 0.001, p = 0.014, p < 0.001, respectively).

Conclusions: Physicians reported patient requests for tests and treatments as a common barrier to appropriate thyroid hormone management.

    • In some scenarios, physician adherence to patient requests may be a driver for inappropriate care and lead to harm.
    • Understanding physician-reported barriers to thyroid hormone management and factors associated with physician perception that patient requests are a barrier is key to improving patient care.”

Patient-Blaming

Articles like yours show that doctors blame the patients, the victims of a therapy that is not working well, for speaking out and making requests.

Our requests for help are blamed, deflected, ridiculed, denied and called “barriers.”

You take sides against us.

The body of the article takes the side of the doctors who consider our requests a barrier.

You do not remain objective or distant from these physician “perceptions.” No, throughout, you agree with the request-denying physicians.

You openly demonstrate that you presume physician adherence to thyroid therapy guidelines is synonymous with protecting patient safety and delivering appropriate care.

You assume that we’re wrong and the guidelines are always right.

See how twisted and unfounded your logic is.

How dare you presume that safety always increases within the guidelines? Almost all studies that have praised LT4’s health benefits within reference are comparing them on average with thyroid-healthy people on average. There is complete blindness to the individuals who suffer, and those who are the outliers and not the average.

You might as well prescribe us all a shoe size of 7 because size 7 is the statistical average.

How dare you presume that harm always increases outside the guidelines? You cite studies that showed harm to overdosing LT4 meds alone, but mysteriously, harm did not ensue in all patients. Have you ever bothered to ask why some patients are protected from harm, even from what you consider to be an overdose of T4 due to TSH levels? No, for some reason, you don’t want to ask why those people are apparently euthyroid outside of range and not at risk.

You might as well forbid all risky heart surgeries because the statistics show the success rates are slim.

You think we are naive about the cause of our suffering.

When you calculate our risk:benefit ratio, how does our suffering weigh in the scale? Apparently nothing.

The suffering we may endure under your T3-blind management you dismiss as mere “patient dissatisfaction” in your article.

You think we are naive about our own bodies. You think that a person who has experienced hypothyroid symptoms for months or years before diagnosis and treatment has no knowledge of how to distinguish hypothyroidism from daily life stress or the common cold.

Doctors are not granted omniscience about our tissue thyroid hormone status by reading our TSH number, and you should admit it before you blame us.

You think we are naive about what’s dangerous.

You think “lack of patient education” could be the only reason why we’d ever request to maintain a TSH below reference.

No, it is you who need physician education. You are unaware that a low TSH is not necessarily a sign of “overtreatment.” Read Larisch et al, 2018 and Ito et al, 2019. 

Your article shows that many of you are exasperated by our asking for things that you believe are harmful to us. You believe they are harmful to us because your bible, the guidelines, told you so. The guidelines told you so, and therefore you refuse to question them by reading thyroid science that corrects and contradicts the guidelines.

Thyroid therapy guidelines’ opinions on “appropriate” thyroid treatment are far from perfect, and you should admit it before you blame us.

Why shouldn’t we be the ones rightfully exasperated with your naivety?

You think our suffering is from our own disobedience.

If we have symptoms during therapy with a normalized TSH, you think we are guilty of “patient non-adherence” to our daily dose of LT4.

You blame us because you erroneously think that a normal TSH makes our entire body “biochemically euthyroid.” Therefore, you believe true hypothyroid symptoms can’t exist within the TSH range unless we are noncompliant.

We’re innocent: Read Gereben et al, 2015, articles by Ito et al, and articles by Hoermann et al.   

You prefer that we suffer as long as you feel safe.

If we suffer for the rest of our lives from our current therapy guidelines that outlaw any hormone except T4 to be dosed, it is for the sake of our safety?

You have no evidence that we suffer for our own good. You just prefer to believe it.

If we combine T4 with T3 thyroid medication to fix the abnormal FT3:FT4 ratio your medication created, that must never be done, for the sake of our safety?

You have no evidence that we would enjoy relief at the expense of a crisis down the road. You just prefer to believe it.

You also think we would suffer from FT3 testing?

The ultimate absurdity is to say that seeking FT3 testing is forbidden, for the sake of our safety. Blood testing and an increase in knowledge makes nobody sick.

How have you been brainwashed to think it’s safer to practice evidence based medicine with no key evidence at all? Don’t you know that in thyroid therapy, our TSH truly can’t predict our FT3 level? (Larisch et al, 2018)

No, this harmless, useful evidence is being institutionally outlawed for the sake of protecting continuing medical ignorance of the extent of some people’s FT3 loss.

You rally doctors to stand against us.

Your article calls on all doctors to take a stand against us and deny particular requests that disagree with your guidelines because of the risks you fear lie outside of the guildeines.

You use your power to shift doctors’ attitudes away from compassion and openmindness and toward a strong denial.

You try to trick us into thinking you are listening to us.

In your article, you suggest developing patient-targeted and physician-targeted “interventions to optimize thyroid hormone management,” specifically “clinical decision support tools or decision aids” that you imagine could be “tools to facilitate the shared decision-making process” between patients and doctors.

Deceptive language! There is no real “shared decision making process” if a patient’s request is judged by the physician to be a barrier to their own therapy at the very outset.

Your article is suggesting that the patient’s request must be extracted or neutralized from patient-doctor discourse by means of a “support tool.”

You know we are ultimately powerless to twist doctors’ arms when we ask for tests or therapies, and yet you dare blame us for influencing doctors too much merely by making a request. Then you say that you’ll create a fake appearance of mutual decision making only if we do things your way, using a support tool or decision aid that leads us to your desired outcome.

Yeah, we see through it. You want to bully us or coax us into submission to your guidelines and medical authority one way or another.  The only improvement to thyroid therapy, in your opinion, would be to silence our requests with a firm “NO” or a decision aid support tool that will equally lead to a “no,” as long as the end result will imprison us for the rest of our life within your guidelines.

Our requests may be our only hope.

When you get a request from a patient, it means we haven’t given up hope in you yet.

We hope that you might actually listen, think reasonably and scientifically, and show compassion.

In one sense, yes, we admit our requests are barriers. We have to use “requests for tests and treatments” as a barrier to defend our health from people like you, people with scientific ignorance about patients’ highly variable responses to thyroid therapy (Midgley et al, 2015).

We have no barrier but our self-advocacy and speech to protect ourselves from erroneous medical beliefs about TSH and T3 in thyroid therapy.

It is not our requests, but your beliefs that can be “a driver for inappropriate care and lead to harm” in ways you refuse to acknowledge.

Doctor-shaming

Peer pressure among physicians is another major unethical harm from your article’s rhetorical tactics.

In this article, you use implicit psychological peer pressure tactics like “Most endocrinologists don’t give in to patient requests to do XYZ, so you shouldn’t either.” You also imply this, “Look at how worrisome it is that patient requests are successful about half the time by physicians who filled out the survey! Oh no! Safe and appropriate thyroid therapy is being hindered by patient requests because they have a 50% success rate.

Since when was health or scientific fact decided by vote or committee or consensus?

Can you decide who is right about refusing thyroid patients’ requests by looking at the statistical significance of two opinion-based survey results correlated with each other to the degree of p<0.001?

There is no way of proving from a survey like this which doctors were wrong to deny patients’ requests and which ones were justified in doing so. But you default to the stance that the guideline-followers are always right.

Your peer pressure tactic is easily undermined by mass medical ignorance.

There’s a lot of ignorance about the outliers in thyroid disease, even among thyroid endocrinologists.

It’s easy to imagine a survey discovering 95% of endocrinologists are ignorant that the hypothyroid variant of Graves’ disease antibodies cause atrophic thyroiditis that can shrink a thyroid down to the size of two crushed raisins, 0.5 mL. Does their 95% belief in the existence of a patient’s gland make that patient have living thyroid gland tissue? Of course not. The survey result proves most endocrinologists haven’t yet learned the effects of blocking and cleavage TSHR antibodies. That’s what happened to my thyroid sometime between my late 30s and age 46, and I have my ultrasound measurements and research articles that verify that antibodies can do this.

Here’s the core issue: Do they know that Graves’ antibodies of both types, stimulating and blocking, can make the TSH an utter lie? Let’s take a survey to find out whether or not TSH-Receptor thyroid antibodies can directly manipulate my TSH through the ultrashort feedback loop. Is that research tradition in thyroid therapy going to be proven false if Internal Medicine specialists aren’t taught about the ultrashort feedback loop?

Even this short illustration shows the dangers of relying on consensus and conformity in thyroid therapy instead of continual inquiry.

My former request-denying, guideline-obeying doctors guided my thyroid therapy to failure and illness with one of the lowest FT3:FT4 ratios ever seen among thyroidless patients on LT4 therapy, and a TSH that could not be tamed.

My current request-granting doctors are innocent. I’m an outlier. My own well-researched requests and a doctor’s wise and compassionate willingness to grant them saved me from a broken T3-blind thyroid therapy system.

Outliers are rarely discovered because ignorance blinds physicians from the possibility of their existence. How many thyroid patient outliers are suffering in the darkness of guideline-driven ignorance?

Policing physician conformity

Your article is a clear symptom of an encroaching medical intolerance for independent inquiry and its frequent partner, nonconformity.

In this article, you plant and water the seeds of conflict between enlightened, innovative physicians and their conformity-policing peers.

You build up a cult-like desire to enforce adherence to a community’s published guidelines and recommendations, when they should never be so rigidly enforced as laws. 

Read the guidelines’ own disclaimer copied into this post: 2012 ATA thyroid guidelines ask for clinicians’ independent judgment.

Guidelines must be held accountable to individual clinical judgment, medical ethics and ultimately, the ever-developing insights of science.

You are the kind of people who launch accusatory medical association investigations into doctors who go beyond the only form of thyroid care you think should be allowed.

Each accusation and professional trial based on conformity creates a ripple effect of fear and more conformity.

It works in the same way that beheadings are an effective deterrent to displeasing the tyrannical Queen of Hearts. Conform today, or your head will roll.

We can easily suspect that in this climate of fearful conformity, to protect yourselves from your peers, you might need to perform prejudicial derogatory comments about NDT medication or complain about your patients’ T3 test requests at the water cooler.

Hating things that you’re supposed to hate will show your insider status, but it will also demonstrate your closed-mindedness.

It’s truly dangerous to your patients to require complete devotional adherence to the holy bible of imperfect, human-created guidelines that may already be proven incorrect within a month after their publication.

Essentially, you’re cautioning physicians not to inquire or research, but to have blind faith in peer consensus.

But why would anyone outlaw patients from benefiting from physicians’ extensive reading of thyroid science literature that contributes to thyroid therapy improvements and innovations, wise independent clinical judgment, and diversity of care options within thyroid health care systems?

In the desire to root out nonconformity, nobody asks about the harms of conformity to defending guideline-driven tyranny and pharmaceutical monopoly.

  • 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: American Thyroid Association, Doctors, Endocrinologists / CSEM, Our advocacy, Research Reviews, Testing policy, Thyroid pharma

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  1. Thyroid patient blaming and shaming, part 3: Advocacy and Science – Thyroid Patients Canada
  2. Thyroid patient blaming and shaming, part 2: True barriers – Thyroid Patients Canada
  3. Discordance in thyroid symptoms reported by patients and their doctors – Thyroid Patients Canada

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