Education and communication
Despite the health challenges we face as patients, many of us try to educate ourselves, our friends, families, and fellow patients about our condition and its treatment. But we need our governments, medical associations, and schools to improve public and professional education and communication about hypothyroidism.
Medical education and ongoing professional education is the most urgent issue. Those who oversee thyroid therapy must understand more deeply the various biological functions of thyroid hormones in the human body and the serious long term health problems that can occur in a state of T3 and/or T4 hormone deficiency even within the statistical normal ranges. Doctors need a more integrative understanding of how thyroid hormone deficiency interacts with and can worsen heart disease, osteoporosis, diabetes, adrenal insufficiency, mental health disorders, and other autoimmune diseases.
Hypothyroidism must be a part of public health education in schools and medical clinics. Public education can help employers and families become more understanding of the physical, mental, and social challenges that patients face on their journey to reach optimal thyroid therapy.
Currently, the symptoms of hypothyroidism are often communicated in a way that minimizes their severity and chronic nature. Symptom lists commonly include short words and phrases like “weight gain” and “constipation,” which make them seem to arise from conditions that almost all people without hypothyroidism experience. As a result, there is a misperception that our symptoms are merely a normal part of aging, or that they are just as temporary and easy to deal with as a headache or a flu virus. Just eat better, sleep better, reduce stress, and exercise more. Thyroid patients often minimize their own symptoms for the same reasons. Therefore, symptom lists should add terms that specify severity and duration.
Even more damaging is the false duality between the symptoms of hypo- and hyperthyroidism. Many symptoms, such as hair loss and weight loss, can be experienced on both ends of the spectrum of thyroid deficiency and excess. For example, long term hypothyroidism often goes hand in hand with adrenal insufficiency, so hypothyroid patients can experience “palpitations” and a “racing heart,” especially when trialing T3-based thyroid therapies which can stimulate adrenals and influence blood sugar. Reports of cardiovascular symptoms in the doctors office has made some doctors assume (without thorough testing and evaluation of all signs and symptoms) that patients are experiencing overdose, and this sometimes leads to reductions in dosage rather than shifting to several smaller doses per day while supporting adrenals. It would therefore be more accurate to say “weight loss caused by…” or “palpitations, caused by…” to educate both the doctors and patients about the physiological causes. It would also be helpful to put next to symptoms the estimated % of patients who experience those symptoms, based on reliable and cited research, and to explain that each individual may experience a different set of symptoms, not all of them.
In medical practice, we often hear our doctors dismiss hypothyroid symptoms as “unspecific,” and when our symptoms contradict their interpretation of our thyroid test numbers, we are often told they simply cannot be symptoms of hypothyroidism. When a rigid interpretation of test results and reference ranges blinds our healers to real individual hypothyroidism within the normal reference range, they are less likely to consider minor adjustments to our dose or medication type that could make a major difference, not only to our day to day well being, but the long-term health of all our organs and bodily systems.
Due to insufficient public education, popular myths and misunderstandings surround the treatments for hypothyroidism. Some people believe that good diet, exercise and a positive attitude are fully able to resolve the symptoms and underlying hormone imbalance. Indeed, dietary changes and certain vitamins and minerals can have a very powerful effect on reducing symptoms of genuine hypothyroidism. However, there is no dietary substitute for thyroid hormones, unless one wishes to ingest another animal’s thyroid tissue (which was a common treatment in the nineteenth century). It is not widely known that calorie restriction and protein restriction can disrupt the HPT axis. [46, 47] Hypothyroid patients, who commonly struggle with weight gain, may resort to such diets. Another damaging popular myth that some autoimmune thyroid patients hear is that because thyroid hormone replacement is artificial, it can cause harm by making the thyroid gland even more lazy, and that one should seek to wean oneself off of thyroid hormones. For people with a severely damaged thyroid gland, the health consequences of stopping one’s medication can be severe.
In spite of the shortcomings of public education on hypothyroidism, many thyroid patients have taken the initiative to educate themselves about their disease and its treatment. Some patients even have the passion, advanced education and intelligence to study medical research articles in their search for understanding. However, according to accounts we thyroid patients hear from one another, sometimes doctors dismiss even valid, evidence-based knowledge of hypothyroidism simply because it is being communicated by a patient. Patient knowledge may indeed come “from the Internet,” but it may originate from a reliable medical source, such as research articles on the PubMed Central database. It is almost impossible for a patient to educate or question his or her doctor’s reasoning without offending them and causing distress and conflict. Even if we truly know more than our doctors do about hypothyroidism, we are forced to maintain an attitude of compliance and submission in the doctor’s office to maintain the constant supply of hormones that our life depends upon.
Understandably, many doctors feel threatened or offended by thyroid patients who question their expertise in diagnosis and treatment, and especially by patients who request additional tests and different thyroid hormone therapies. Some are genuinely fearful of being disciplined by their professional bodies for testing and treating a patient outside of the dogmatic flowcharts and policies that tie their hands.
Doctors are hard pressed on all sides, not only by patients but by their policies and peers, but too often, conformity and policy harms the doctor-patient relationship. Miscommunication and confrontational exchanges in the doctor’s office has destroyed patient-doctor relationships. More importantly, a doctor’s inappropriate attitudes and words have power to significantly damage the fragile mental health of many thyroid patients. Even subtle degrees of thyroid hormone deficiency within the reference range can cause depression, emotional imbalance and anxiety.  After a difficult doctor’s visit, in a search for sympathy, thyroid patients sometimes log into patient forums in social media to deal with their distress.
It is easy to imagine doctors likewise commiserating with one another over their difficult and demanding thyroid patients. Patients’ lives are at stake, and doctors’ careers are at stake. The stakes are very high for each party primarily because the medical policies and tools are extremely rigid and limited, and because there is limited professional education about the complexity and sensitivity needed in effective treatment of hypothyroidism.
In conclusion, thyroid hormone deficiency must no longer be seen as a problem that our society has fully resolved, nor a phenomenon isolated to one bodily organ or system. The challenges of testing and long-term therapy in hypothyroidism are far more complex than they appear in guidelines documents, medical websites for the public. We must bring thyroid hormone therapy out of the era of narrowly TSH-focused thought and more in line with research on the biological importance of T3 hormone and the effectiveness of T3-based therapies. It is time to acknowledge this lifelong condition as worthy of more careful testing, therapy, research and education.
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