Many patients are finding their path to health with expanded laboratory testing and expanded treatment options thanks to the advocacy within the thyroid community. However, many patients are still suffering due to a lack of diagnosis or inability to access options beyond levothyroxine-only. How can we help to end the global suffering of thyroid patients?
by Michelle Santonastaso
ThyroidChange Guest Writer and Hashimoto's Patient
A transformation is happening in the global thyroid community.
Many individuals are finding their path to personalized thyroid care for optimal wellness, yet too many other patients are still suffering. Regardless of the health system employed, global citizens can find themselves undertreated and still symptomatic or remaining undiagnosed. All the while others are transforming their life with new approaches. Why are so many thyroid patients suffering? How are some thriving? What can we do?
Why Are So Many Patients Suffering?
Currently, the gold standard test for thyroid dysfunction is the TSH lab test followed by treatment with a synthetic T4-containing medication (i.e. Synthroid, levothyroxine). It is believed that most patients do well on this treatment and the protocol is written in the treatment guidelines. This results in doctors being mandated or feeling required to follow these outdated guidelines.
Research demonstrates that this approach is not always the best for the individual patient and may leave them in a hypothyroid state.
The TSH lab test is insufficient in detecting thyroid dysfunction in many patients for various reasons.
For example, since TSH or thyroid stimulating hormone is secreted by the pituitary gland, a patient may have a pituitary dysfunction. Some patients never have elevated TSH and other tests confirm that they do not have enough thyroid hormone. If you are relying solely on the TSH test, you are not getting a picture into what thyroid hormone is available to your cells for proper functioning.
Individuals need the active thyroid hormone T3 to function.
By supplying the body of a hypothyroid patient with T4, you are relying on that person’s body to strip an iodine molecule to create the active T3. Many people for a variety of reasons are unable to do this which keeps the patient hypothyroid at a cellular level. The resulting symptoms will remain persistent and requires a medical professional to prescribe appropriate amounts of T3 or T3-containing medications to the patient.
As stated above, since some doctors have strict adherence to guidelines for most people, too many patients are restricted to T4-only therapies.
How Are Some Thriving?
The voice of thyroid patients and their medical professionals around the world has been persistent and strong: There is a need for change in current thyroid care methods including:
First and foremost, medical professionals are becoming confident that testing beyond the TSH laboratory test is valuable and provides insight into the patient’s thyroid hormone balance not otherwise indicated. Tests such as Free T4, Free T3 and Reverse T3 reveal how much of these hormones are available in the bloodstream. Proper balances are needed for proper physiological functioning. Thyroid antibody tests help a patient determine if an autoimmune condition is behind their thyroid condition. [More info on testing here].
If these tests reveal abnormal values, many medical professionals are prescribing treatments that contain T3, such as liothyronine or natural desiccated thyroid extract, personalizing thyroid treatment based on expanded testing. [More info on treatment options here].
Additionally, many medical professionals and patients are seeking to support their bodies on a path for optimal wellness.
Using complementary treatment modalities, patients are discovering that through proper nutrition, supplementation and other lifestyle choices that they are able to increase T4 to T3 conversion and maximize their overall quality of life. [More info on foundational treatments options here].
Helping patients identify their personal physiological needs such as any allergies and/or sensitivities, dietary concerns, and other health ailments, medical professionals and patients are discovering approaches that can be tailored for the individual patient.
What Can We Do?
Empower and Advocate. Medical professionals and patients need to educate themselves to their best ability regarding all the perspectives of thyroid testing, treatment and overall wellness. An educated patient feels empowered to identify their lingering symptoms which may be attributed to thyroid hormone imbalance, and to ask their medical professional for expanded laboratory testing and T3-containing treatments if needed, while also investigating other ways to support their health.
As medical professionals and patients spread the word of their successes, the empowerment of our community will continue to strengthen
Medical professionals will feel more confident in using expanded testing and treatment options with greater support from the entire community. Patients will tell family, friends and other loved ones about what they have learned. These individuals may be undiagnosed or under-treated thyroid patients who, in turn, will ask their medical professionals for expanded labs and treatment methods.
This will create its own pressure for change and personalized thyroid care creating greater access across the globe.
Unite With ThyroidChange. ThyroidChange began as a grassroots initiative inspired by a petition created by thyroid patients, Denise Roguz and myself. The success of the petition, “Endocrinologists:
Patients With Thyroid Dysfunction Demand Better Care,” inspired thousands of patients to work together to spread the word of how patients are restoring their health with expanded laboratory testing and treatment options beyond levothyroxine-only. We named our united effort ThyroidChange. Our community unites elite medical professionals, organizations, notable individuals and over 100,000 patients worldwide.
In addition to advocating for expanded laboratory testing and treatment options, we seek to educate patients about all areas that can provide thyroid patients with insight into their overall wellness. Unite with us for change.
Join our email list and follow us on:
Use the hashtags #UniteforChange #TransformYourHealth.
Support Other Advocates. As a community, we need to support those who advocate on behalf of thyroid patients worldwide in an effort to keep our voices strong. Thank you to each of them for their efforts. Just to highlight a few:
Hypothyroid Mom
Mary Shomon
Stop The Thyroid Madness
Thyroid Nation
The Invisible Hypothyroidism
Gena Lee Nolin's Thyroid Sexy
The International Hormone Society
ITT Campaign - Improve Thyroid Treatment and Save T3
Canadian Thyroid Patients Campaign
Scottish Thyroid Petition
National Academy of Hypothyroidism
Thyroid Patient Advocacy UK
Thyroid UK
Sköldkörtelföreningen
Hypo2-föreningen Support Group
Thyroidea Norge
Within our community, patients can find so many sources of credible information which may hold many clues to what you need on your path to health. The medical professionals, organizations, and notable individuals on the following lists work diligently to improve the lives of thyroid patients worldwide.
ThyroidChange Supporters
Together, We Can Be the Change!
Many individuals are finding their path to personalized thyroid care for optimal wellness, yet too many other patients are still suffering. Regardless of the health system employed, global citizens can find themselves undertreated and still symptomatic or remaining undiagnosed. All the while others are transforming their life with new approaches. Why are so many thyroid patients suffering? How are some thriving? What can we do?
Why Are So Many Patients Suffering?
Currently, the gold standard test for thyroid dysfunction is the TSH lab test followed by treatment with a synthetic T4-containing medication (i.e. Synthroid, levothyroxine). It is believed that most patients do well on this treatment and the protocol is written in the treatment guidelines. This results in doctors being mandated or feeling required to follow these outdated guidelines.
Research demonstrates that this approach is not always the best for the individual patient and may leave them in a hypothyroid state.
The TSH lab test is insufficient in detecting thyroid dysfunction in many patients for various reasons.
For example, since TSH or thyroid stimulating hormone is secreted by the pituitary gland, a patient may have a pituitary dysfunction. Some patients never have elevated TSH and other tests confirm that they do not have enough thyroid hormone. If you are relying solely on the TSH test, you are not getting a picture into what thyroid hormone is available to your cells for proper functioning.
Individuals need the active thyroid hormone T3 to function.
By supplying the body of a hypothyroid patient with T4, you are relying on that person’s body to strip an iodine molecule to create the active T3. Many people for a variety of reasons are unable to do this which keeps the patient hypothyroid at a cellular level. The resulting symptoms will remain persistent and requires a medical professional to prescribe appropriate amounts of T3 or T3-containing medications to the patient.
As stated above, since some doctors have strict adherence to guidelines for most people, too many patients are restricted to T4-only therapies.
How Are Some Thriving?
The voice of thyroid patients and their medical professionals around the world has been persistent and strong: There is a need for change in current thyroid care methods including:
- Expanded laboratory testing
- Treatment options beyond T4-only
- Complementary support modalities
First and foremost, medical professionals are becoming confident that testing beyond the TSH laboratory test is valuable and provides insight into the patient’s thyroid hormone balance not otherwise indicated. Tests such as Free T4, Free T3 and Reverse T3 reveal how much of these hormones are available in the bloodstream. Proper balances are needed for proper physiological functioning. Thyroid antibody tests help a patient determine if an autoimmune condition is behind their thyroid condition. [More info on testing here].
If these tests reveal abnormal values, many medical professionals are prescribing treatments that contain T3, such as liothyronine or natural desiccated thyroid extract, personalizing thyroid treatment based on expanded testing. [More info on treatment options here].
Additionally, many medical professionals and patients are seeking to support their bodies on a path for optimal wellness.
Using complementary treatment modalities, patients are discovering that through proper nutrition, supplementation and other lifestyle choices that they are able to increase T4 to T3 conversion and maximize their overall quality of life. [More info on foundational treatments options here].
Helping patients identify their personal physiological needs such as any allergies and/or sensitivities, dietary concerns, and other health ailments, medical professionals and patients are discovering approaches that can be tailored for the individual patient.
What Can We Do?
Empower and Advocate. Medical professionals and patients need to educate themselves to their best ability regarding all the perspectives of thyroid testing, treatment and overall wellness. An educated patient feels empowered to identify their lingering symptoms which may be attributed to thyroid hormone imbalance, and to ask their medical professional for expanded laboratory testing and T3-containing treatments if needed, while also investigating other ways to support their health.
As medical professionals and patients spread the word of their successes, the empowerment of our community will continue to strengthen
Medical professionals will feel more confident in using expanded testing and treatment options with greater support from the entire community. Patients will tell family, friends and other loved ones about what they have learned. These individuals may be undiagnosed or under-treated thyroid patients who, in turn, will ask their medical professionals for expanded labs and treatment methods.
This will create its own pressure for change and personalized thyroid care creating greater access across the globe.
Unite With ThyroidChange. ThyroidChange began as a grassroots initiative inspired by a petition created by thyroid patients, Denise Roguz and myself. The success of the petition, “Endocrinologists:
Patients With Thyroid Dysfunction Demand Better Care,” inspired thousands of patients to work together to spread the word of how patients are restoring their health with expanded laboratory testing and treatment options beyond levothyroxine-only. We named our united effort ThyroidChange. Our community unites elite medical professionals, organizations, notable individuals and over 100,000 patients worldwide.
In addition to advocating for expanded laboratory testing and treatment options, we seek to educate patients about all areas that can provide thyroid patients with insight into their overall wellness. Unite with us for change.
Join our email list and follow us on:
Use the hashtags #UniteforChange #TransformYourHealth.
Support Other Advocates. As a community, we need to support those who advocate on behalf of thyroid patients worldwide in an effort to keep our voices strong. Thank you to each of them for their efforts. Just to highlight a few:
Hypothyroid Mom
Mary Shomon
Stop The Thyroid Madness
Thyroid Nation
The Invisible Hypothyroidism
Gena Lee Nolin's Thyroid Sexy
The International Hormone Society
ITT Campaign - Improve Thyroid Treatment and Save T3
Canadian Thyroid Patients Campaign
Scottish Thyroid Petition
National Academy of Hypothyroidism
Thyroid Patient Advocacy UK
Thyroid UK
Sköldkörtelföreningen
Hypo2-föreningen Support Group
Thyroidea Norge
Within our community, patients can find so many sources of credible information which may hold many clues to what you need on your path to health. The medical professionals, organizations, and notable individuals on the following lists work diligently to improve the lives of thyroid patients worldwide.
ThyroidChange Supporters
Together, We Can Be the Change!
About the Author
Michelle Santonastaso is a Hashimoto's patient and was one of the co-founders of ThyroidChange. As an instructor in the field of communication and as a mother, Michelle believes continuing education is the key to improving care for all thyroid patients. With her background in speech, interpersonal communication, and healthcare administration, Michelle harnesses her training with an aim to strengthen the voice of ThyroidChange and to maximize its reach.
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