CSEM attempts to dialogue with thyroid patients, April 8, 2019

CSEM-we-will-listen-We-hopeIn my previous post, I discussed the statement of the Canadian Society of Endocrinology and Metabolism (CSEM) response to thyroid patients’ concerns, dated April 8th, 2019. There, I showed that the minor edit of adding a clause about central hypothyroidism is not really an update to the guidelines, which already acknowledged this exception.

The document makes gestures toward dialogue with the vast majority of thyroid patients, but it is still a one-way dialogue of indoctrination and power that ignores scientific evidence that already exists within the field of endocrinology. Their document is in fact a restatement of their firmly held TSH-centered paradigm and a retrenchment of their power to manage patients rather than listen to patients.

However, while the CSEM firmly closes one door, it gestures toward dialogue and it appears to open the doors of the future. It defers a more meaningful, deeper, more challenging dialogue with thyroid patients to the future, where there is still hope.

GESTURES TOWARD DIALOGUE

Thankfully, the CSEM’s April 2019 letter opens the door for “clinical concern” and physician-patient dialogue:

“Should there still remain a clinical concern, patients may have further testing as appropriate. CSEM’s recommendation supports an evidence-based approach to thyroid disease testing and management. It encourages physicians and patients to discuss and determine when free T4 or T3 testing are appropriate and necessary. The recommendation does not suggest eliminating free T4 or T3 testing when patients and physicians agree it is needed.”

However, such an ideal state “when patients and physicians agree” is predicated on agreement not only each other, but fundamental agreement with the toolkit’s TSH-centric guidelines:

“Recommendations … are meant to foster conversations between physicians and patients and encourage shared-decision making. As each patient situation is unique, physicians and patients are encouraged to use Choosing Wisely Canada materials to support conversations and determine an appropriate treatment plan together.”

We thyroid patients dream of such a mutually supportive relationship with our physicians.  This togetherness is an idealistic image.

However, it is not very realistic given the realities of these guidelines’ controlling power over physicians and patients.

CSEM’s role in regard to thyroid therapy does not truly require genuine dialogue with any thyroid patients. They are not asking for a genuine dialogue if it is limited to the terms of their own guidelines and excludes all other relevant research and evidence that could broaden and critique them.

The assumption throughout most guidelines is that we patients are those whose conditions are managed and that TSH is sufficient management. What kind of dialogue is it if a physician assumes from the outset that they have all the evidence necessary?

A dialogue has to have open minds on both sides. We say our conditions are often poorly managed by means of TSH normalization on levothyroxine. We have evidence on our side, both scientific evidence and our continuing hypothyroid symptoms during TSH-normalized therapy.

It is upsetting and threatening for many physicians to see the medical hierarchy inverted by patients who have knowledge to interpret their own laboratory results and symptoms. This is why most patient-physician dialogue can only happen outside of the doctor’s office and in the public sphere.

Dialogue even among physicians is not very realistic given the medical profession’s innately conservative stance and unwillingness to change paradigms even when evidence mounts to the contrary. Consider how hard it has been lately to change minds on the health danger of dietary fat and cholesterol and about a low-carbohydrate high fat diet being a therapy for diabetes.

Medical power is more than capable of enforcing conformity for a long time after scientific evidence has opened patients’ and researchers’ minds. Powerful people clinging to decades of strongly entrenched beliefs do not want to listen to the scientific debates.

In fact, most thyroid therapy guidelines aim at consensus and suppress the ongoing debate in clinical studies of thyroid hormone therapy that do measure Free T3 and Free T4.

OPENING THE DOORS IN THE FUTURE

One last hope remains. Maybe someday our doctors and the CSEM will listen to patients who can discuss this neglected evidence in endocrinology research.

The final bullet list of the April 8, 2019 statement gives the most hope of all. It says that CSEM is committed to these goals:

  • “Reviewing the full list of recommendations on an annual basis. Choosing Wisely Canada recommendations are reviewed yearly and updated with current evidence.
  • Collecting patient experiences regarding hypothyroidism testing and management, as well as other thyroid issues, and particularly, funding and coverage issues. CSEM is working with the Thyroid Foundation of Canada to advocate for appropriate care for thyroid patients.
  • Fostering opportunities for new research that may help guide these important testing and treatment decisions for patients with thyroid disease.”

I would like to suggest that realistic alternatives to an idealistic three-way agreement between physician, patient, and guidelines.

CHALLENGING DIALOGUES AHEAD

I call on the CSEM to open their minds to potential discord, conflict, debate and DISagreement that is the natural phase in any major paradigm shift in medicine.

It will not be comfortable or easy to go through a shift from a TSH-centric model to a T3-centric model of thyroid therapy, but that is where we must go if we want to optimize thyroid therapy and prevent harm and excessive cost to the medical system as millions of patients, largely women, age with suboptimal Free T3.

A. Imagine that the treating physician has knowledge of clinical research and scientific evidence that is overlooked and dismissed by the Choosing Wisely Canada materials. How is this physician supposed to engage in evidence-based dialogue that critiques and disagrees with the CSEM, her college of physicians and surgeons, and Choosing Wisely Canada without putting her career in jeopardy?

B. Imagine that an intelligent patient has steeped herself in thyroid science and has more evidence-based knowledge of thyroid hormone therapy than her physician. How is she supposed to argue for a Free T3 and Free T4 test when she is there for a 15 minute appointment and depends on her doctor giving her a refill of her T4 medication?

C. What happens when a patient acquires more knowledge of thyroid science from medical literature than is encompassed in Choosing Wisely guidelines and the sadly lacking CADTH literature review, as well as the American Thyroid Association guidelines?** How likely is it that that patient’s more thorough literature review will be acknowledged by Choosing Wisely and the CSEM?

D. What happens when all three parties are oblivious to the patient’s overlooked, unmeasured chronic low Free T3 despite normalized TSH, and this results in medical harm and cost to the health care system?  How will the patient’s chronic low Free T3 ever be implicated in the harm done if it was never tested? How will good thyroid therapy research advance without access to a significant number of patients’ Free T3 data?

E. If Free T3 was tested and medical records showed it was chronically low for years before a patient’s costly health crisis, which was then promptly resolved by T3-based therapy optimized to Free T3 levels, will the system admit its mistake may apply to other patients, or will it merely consider the patient a rare anomaly?

In the future, will documents like the CSEM continue to gesture toward dialogue limited by their own guidelines while deferring genuine dialogue?

I believe that publicly pointing out research on the clinical relevance of Free T3 gives the most hope.

REFERENCES

Canadian Society of Endocrinology and Metabolism. (2019, April 8). CSEM Review and Response: Choosing Wisely Canada Recommendation #3: Testing and Management of Primary Hypothyroidism. Retrieved from http://www.endo-metab.ca/images/stories/pdf/csem-thyroid-testing-and-management-response-2019.pdf

 

One thought on “CSEM attempts to dialogue with thyroid patients, April 8, 2019

  1. Pingback: CSEM’s edit to FT3 and FT4 testing prohibitions, April 8, 2019 – Canadian Thyroid Patients Campaign

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