At 11-years-old, you hardly understand the complexities of life and the implication of any diagnosis.
My doctor told me I had Hashimoto’s Thyroiditis, and that it was insignificant… a pill, every day, and blood tests, every 6 months.Simple. My mother, a pediatric nurse, brought me to the best pediatric endocrinologist in the NYC area. With blind faith, I went about life veiled by ignorance about thyroid disease.
I professed my Hashimoto’s at every medical visit. Yet, it was never considered in any treatments. I was told I was depressed and prescribed anti-depressants. I had irregular periods and was prescribed birth control pills. I had dry hair and told it was from processing and products. My skin was like that of a crocodile.
Must be genetics, as I shared so many similar behavioral, mood and medical similarities to my father. I accepted my genetic fate, but never once made the connection to our shared diagnosis of Hashimoto’s. That is, until the Hashimoto’s emerged and demanded recognition.
My doctors called it postpartum depression. I could not seem to manage my moods and anxiety, but I was not depressed. This was my third child and the baby weight was not coming off. Something was wrong, I could feel it in my soul. I was driven to research my disease. Soon, I realized all of my idiosyncrasies were symptoms of my “insignificant” disease and my hormone imbalance was distorting my reality.
In the 24 years since my diagnosis, the field of Endocrinology has improved the treatments of Hashimoto’s and other thyroid conditions, yet my treatment remained the same. I encountered countless others who also had their lives forever shifted due to these “insignificant” disorders, but I also discovered treatment options that alleviated those symptoms.
My blind faith that my physician knew best dissolved. My doctor transformed into a human with flawed knowledge of a rapidly changing field, and from the once naive patient emerged a woman who refused to accept this was acceptable.
This shared experience with innumerable thyroid dysfunction patients also suffering from symptoms of a disease, yet labeled with minimizing terms such as depressed, mentally unstable and hypochondriacs.
This motivated me to action. If we demonstrate and express our experience, if we grab the ear of our physicians who dedicate their lives to healing us – then I have faith we can change our future and heal the next generation. This new found faith inspired me to craft, “Endocrinologists: Patients with Thyroid Dysfunction Demand Better Treatment.”
This international petition has amassed over 40,000 signatures from over 65 countries. It inspired, Denise Roguz, an amazing woman with a different, yet similar, thyroid journey, to shape and mold my raw petition. Together, this amazing collaboration turned into ThyroidChange, an international health website and advocacy movement to unite the voice of thyroid patients worldwide.
Hormones matter! I have faith that our voices, when strengthened with worldwide support, can change the future of thyroid care. Please join us on our journey.
Originally published on Hormones Matter.
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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