1. What is the decision or change (e.g., clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?
In 2021 the American Thyroid Association estimated that 12% of the U.S. population would develop a thyroid condition during their lifetime, and that up to 60% would be unaware of their condition. Most of those are hypothyroid patients, who are not identified and diagnosed. An extensive 2018 ATA survey of hypothyroid patients showed the majority voiced "prominent dissatisfaction" with their doctor and their treatment and emphasized the need for new treatments. Undiagnosed or inadequately treated hypothyroidism results in a litany of symptoms that affect quality of life, both physically and mentally. Longer term those patients can develop more serious medical conditions such as high cholesterol, cardiac issues, obesity, joint and muscle pain, gradual hearing lo ss, reproductive system disorders, depression, periodontal problems, carpal tunnel syndrome, sleep issues and diabetes. Since hypothyroidism adversely affects metabolism, one study that adjusted thyroid med dosages to achieve "optimal metabolism" showed remarkable benefit to the immune system, neurology, dermatology, obesity, and ob/gyn issues. Clearly hypothyroidism is causing enormous physical and mental problems for patients not currently being recognized and adequately treated. This also results in enormous unnecessary costs to the health care system due to repetitive visits of hypothyroid patients seeking relief, as well as ineffective treatment when hypothyroidism is not diagnosed, but is treated as a different problem, we need a conclusive study of the true extent of hypothyroidism and the enormous adverse effects of current diagnostic and treatment practices.
2. Why are you struggling with this issue?
Hypothyroid patients continue to struggle with this problem because the very starting point, the definition of hypothyroidism, based on a test for thyroid stimulating hormone (TSH), assumed in the ATA/AACE Guidelines for Hypothyroidism, is ineffective. Not recognized is the comprehensive and more effective definition that hypothyroidism is insufficient T3 genomic effect in tissue throughout the body due to inadequate supply of, or response to, thyroid hormones. Although there is no approved, effective standard of care (SOC), the unwarranted, de facto SOC is primarily based on the ATA/AACE Guidelines for Hypothyroidism. The Guidelines, in turn, are based on three foundational assumptions. These are detailed in the following link. All three have now been refuted by extensive scientific evidence, yet patients continue to be hostage to the TSH test, instead of being diagnosed and treated clinically, based on evaluation for symptoms typical of hypothyroidism, along with tests for the active thyroid hormones, Free T4 and Free T3. In spite of its importance, Free T3 is seldom tested and essentially ignored in both diagnosis and treatment.
https://thyroiduk.org/wp-content/uploads/2022/10/Patients-Guide-Final-V5.pdf (PDF, 82 KB)
3. What do you want to see changed? How will you know that your issue is improving or has been addressed?
In order to effect needed change, there needs to be sufficient documentation of the extent and severity of these problems. This requires recognition of the percentage of patients who exhibit numerous symptoms typical of hypothyroidism. Also, how many of those also were tested for Free T4, Free T3, and TSH. Also, the percentage of those with symptoms who have been previously told they don't have a thyroid problem. Also, the percentage who are told they are subclinical (TSH above range, FT4 within range, or TSH over 10). When diagnosed per the SOC, indicating overt primary hypothyroidism, what percentage are being dosed based on resultant TSH level? What is their medication and daily dosage? Have their symptoms improved significantly? Are they satisfied with how they feel now? What other medical issues do they have?
The issue will only be addressed when sufficient info has been collected to show the full magnitude of the problems related to hypothyroidism, and the ineffectiveness of current diagnostic and treatment practices of the de facto standard of care. These data will force the ATA/AACE to make necessary changes to their Guidelines, that will cause changes to the SOC used almost universally.
4. When do you need the evidence report?
Mon, 02/12/2024
5. What will you do with the evidence report?
Provide it to the ATA and AACE to push for needed change in their Guidelines for Hypothyroidism and associated standard of care used to diagnose and treat hypothyroid patients. This would be of enormous benefit to the huge number of people who have hypothyroidism and associated ailments but are not currently diagnosed and treated effectively. It would also help reduce costs for health care and related medical insurance.
Optional Information About You
What is your role or perspective? Patient
May we contact you if we have questions about your nomination? Yes
