Evidence-based thyroid advocacy

What is evidence-based thyroid activism

My previous post talked about “evidence-based thyroid therapy.”

Sometimes, thyroid therapy goes terribly wrong, despite the efforts of doctors and patients, and I tell my experience and hopes in this post.

Failures are not just individual. In thyroid therapy, there are systemic failures.

Many factors have led to challenges in thyroid therapy:

  • History and trends in thyroid health care
  • Changes in guidelines and policies
  • Trends in prescribing
  • Laboratory testing challenges
  • Pharmaceutical development and marketing
  • Administrative problems in health care systems
  • Health care economics
  • Medical attitudes, social values, and beliefs about thyroid disease and therapy.

LIMITS ON DOCTORS’ DIALOGUE

In my previous post, I’ve mentioned “doctors’ clinical experience” as a form of evidence.

However, the majority of doctors have little to say that can advance the practice of thyroid therapy because in the current climate, thyroid therapy is too heavily regulated and overcontrolled by guidelines. It would take great courage to do more than parrot the guidelines and reinforce them, and to critique them is dangerous.

There’s too much risk and liability for doctors.

Doctors face the pressure to conform and the threat of being disciplined by their peers, associations and regulatory bodies.

As much as I honor courageous and innovative thyroid doctors, I would not want any good doctor to risk both themselves and their thyroid patients by speaking out in a way that would make them a target for their conformist and envious peers. They can’t easily find a new health region to practice in after their thyroid prescribing license has been taken away. And what will their former patients do? Read on to discover some things we can do.

POWER IN THE DOCTOR’S OFFICE

In a doctor’s office, the doctor and patient are in a power relationship, and their roles can interfere with genuine dialogue.

Little can be done to move thyroid therapy forward by telling patients to “talk to your doctor about it” or telling doctors to “listen to your patients in the office and strive for a good bedside manner.”

Some doctors might put on a good show of listening but really not learn anything or change any of their diagnoses, test ordering patterns, or prescriptions.

We as patients come into the office hoping for a dose increase or dependent on our next refill. There’s also a time constraint.

Many of us come into the office socialized to be submissive, respectful and self-doubting of our knowledge.

Doctors may come into the office socialized to be the only person in the room “capable” of assessing medical evidence, just because they’re the only one “charged” to do this.

This situation is like a prisoner pleading for release, or a servant asking a king for a favor. It’s not the kind of situation that helps two intelligent people have a real 2-way conversation about medical evidence.

When we break out of that “compliant patient” mold, well, meltdowns can occur on both sides of the doctor-patient relationship. We as patients may end up in tears or say something in anger or frustration.

In response to breaking the mold of the ideal thyroid patient, we can get the full range of doctor response, from condescending dismissal to bullying arrogance.

MY EXAMPLE

I’ve had a doctor accuse me of harassing her for bringing in a medical journal article.

It was to support my request for a small dose increase. I wanted to try that to deal with the return of the exact same bizarre depressive symptoms I had before commencing T4 therapy (Synthroid).

She took the medical research papers out of my hands, threw them in the office trash bin and said assertively, “That is what is making you crazy.”

She reminded me of the time I was incorrect about the reason for a rash on my hands.

I was scolded out of the office and told to come back only when I was ready to take antidepressants instead of the T4 dose increase.

If (and when) we patients do something as innocent and intelligent as learn from medical research and we get treated as badly as that, we sometimes end up with a deeper sort of hypothyroid depression after we get home — and a resolution not to try that again if we can avoid it.

However, instead of sulking, I had a good cry in my car and had a mobile phone chat with my supportive husband.

I regained my confidence in what I knew to be the truth. For example, I knew my tears were not true depression because I felt calm and assertive in my mind. I knew the tears were a biochemical response to low thyroid hormone because prior to therapy, with a TSH over 150, I had had similar ridiculous sobbing episodes without the waves of strong emotions that should go along with the sobbing. I also knew that there was a basis in medical research for a person like me to require a higher dose of thyroid hormone than I was taking at the time.

After my eyes were dry enough so I could drive, I went to a walk in clinic.

I found an old Scottish doctor near retirement who was trained to listen to patients and test them to see if they are making up a story to manipulate them.

He let me try a dose increase, and it did actually help for a while.

He and I were both right.

The other arrogant doctor was wrong, both medically wrong and morally wrong, to do what she did.

I didn’t do anything to officially complain about that other doctor because I felt too angry, powerless and traumatized. I didn’t want to enhance my trauma by reporting it or dwelling on it.

Still, I have carried that experience vividly in my mind for about fifteen years now.

It is rather like a person who has been violated sexually. The memory of the wound remains, whether you report it or not, even after it has healed and only leaves a scar.

No, it is absolutely not a form of harassment to bring medical journal articles to a doctor’s office. This is precisely the kind of evidence that a true evidence-based doctor should be open to learning from.  But coming from a patient, this source of evidence is perceived as a threat to a doctor with a fragile ego.

WHERE IS THE SPACE FOR DIALOGUE?

In light of this example, consider how constraining the medical office can be as a place for dialogue about evidence.

Why is it too much for an intelligent doctor to admit that they don’t have time to read medical journal articles that can directly influence how they adjust a patient’s thyroid hormone dosage? Why is it unthinkable to ask the patient to quickly summarize the gist of the article she has obviously read?

No, I was the one being harassed by a doctor too arrogant to listen to both scientific evidence and a patient’s first-hand knowledge of her own hypothyroid symptoms.

As a thyroid patient, I have had three horrible experiences with doctors who were resolved to remain ignorant and arrogant. In the middle of the spectrum, I had one kind, intelligent one who lacked enough knowledge to treat my unusual thyroid condition.

On the positive end of the spectrum, I have had two excellent experiences.

The two excellent experiences were with MDs whose specialized practice fell outside of the standard health care system and involved a user fee. They were not intimidated or dismissive. They were actually interested in learning from and with me. Perhaps their specialized practice gave them the motivation, time, and the financial reward for learning.

But what if I was not able to afford better thyroid care? Simple: I would still be very sick until, wandering from doctor to doctor, I finally found one that listened.

Not every thyroid patient has that luxury in Canada. I often think about the thyroid disabled people who live in Nunavut, or Winnipeg, or Thunder Bay, or Digby, Nova Scotia. These are some locations where it is near impossible to find another doctor capable of enhancing your thyroid hormone health if you are currently not receiving good thyroid care.

GOING PUBLIC

I’ve reflected on my own experience.

I’ve pondered the stories that many other thyroid patients tell on our private support forums and in their public comments on my campaign posts.

I’ve contemplated the risks that doctors face by publicly teaching anything they’ve learned about “non-standard” thyroid therapies and thyroid hormone testing.

Regardless of the risks, I believe that going public with our stories and sharing our insight into the problems with the system is our best option for changing the system.

As thyroid patients, we can provide the type of evidence that laboratory tests and statistics can’t.

We can provide some of the critical thinking that isn’t happening because health care practitioners are running on auto-pilot or they are blinded by unexamined, incorrect assumptions and flowcharts.

We as patients can show the human impact of restrictive policies and beliefs.

The most systemic failure in thyroid therapy is the failure to admit that it is failing many patients and causing significant harm.

Those who want to cover up systemic failure want us NOT to go public with our evidence, knowledge, and critical thinking. They want to deny and dismiss and minimize the failure. They want to cover up the data of suffering and mistaken logic. They’d rather have us discuss the failures privately in an office or boardroom where it can be contained. Damage control.

But we don’t just have complaints about failures.

We patients have success stories to share, too.

Many of us do depend on pharmaceuticals, and some of us were on the wrong mode of thyroid therapy for many years, but we are now on a different mode that actually works.

Some of us have discovered open-minded doctors who have optimized our thyroid hormone levels and who have provided treatments for conditions that affect our thyroid hormones.

Some of us have enhanced our thyroid hormone health without the aid of doctors or medicines, through enhancing other aspects of our health.

However, the knowledge we share, both therapy failures and successes, should not be the secret treasure of only the open-minded, truth-seeking, lifelong learners among the doctors who listen to us.

Just imagine what might be possible.

If doctors with fragile egos can listen to thyroid patients talk in public about their therapy, they might actually hear something that is not likely to be said in the doctor’s office.

They might not get offended or feel personally threatened.

They might be able to listen.

Even thyroid researchers might listen.

Even the health care system administrators might listen.

Even if systemic change takes longer than my own lifetime, I want to be part of helping that change happen. How about you?

That’s what this public campaign is about.

  • Tania S. Smith

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