I have reported on this issue in prior blogs, but the formal publication of the data obtained from the 2017 online survey of 12,146 hypothyroid respondents was finally published this June in the journal Thyroid by Sarah Peterson et al. Of the 11,166 respondents that made the final cohort 6,949 reported being on levothyroxine alone, 978 were on levothyroxine + liothyronine (cytomel), and 3239 were on desiccated thyroid (Armour thyroid or Nature-Throid). The patients were further subdivided into 4 groups as to whether or not they had any or all 3 of self reported depression, major stressors, medical conditions.
The main source of dissatisfaction among hypothyroid patients were weight management, energy levels and fatigue, mood memory and other problems thinking. Most participants believed that their hypothyroidism was influencing their lack of well being and that new thyroid therapies beyond the ones we have are needed. Interestingly people on desiccated thyroid hormone felt better, and felt more satisfied with their treatment and physicians that those on levothyroxine alone. Further they were less likely to complaint of typical sources of dissatisfaction in hypothyroid patients. Of note 14% of those on desiccated thyroid were not satisfied with their treatment in contrast to 20% of those on levothyroxine or levothyroxine with liothyronine. Factors identified to be associated with a greater degree of dissatisfaction were being female, having weight, mood and cognitive issues, depression, switching physicians and trying alternative treatments. In contrast more satisfied patients tended to be 60 or older, had radioactive iodine or surgical thyroidectomy, and were taking either desiccated thyroid hormone or a combination of levothyroxine and liothyronine.
While there is power in so many people answering the survey problems remain in terms of the interpretation. For one dissatisfied patients are more like to gravitate toward completing surveys than satisfied patients. In addition to the fact that thyroid replacement inadequacies may be responsible for part of the dissatisfaction, two thirds of respondents believed that stress or other physical co-morbidities could account for at least of their symptoms. The medical community still lacks good studies looking at symptomatic people and specifically evaluating multiple therapies. This study does push the envelope in forcing the endocrine community to see that we have a big gap to fill if we are to make our patients whole after they become hypothyroid by autoimmune causes or if we render them hypothyroid in the process of helping them.
This is a very complicated issue that needs a lot thought and of good research. There is so much we do not know. We do not that thyroid replacement is an imperfect science. This makes us physicians be very mindful of if and when we recommend thyroid surgery in patients with well regulated thyroid axis.
In the mean time not too many endocrinologist or internists feel comfortable giving patients desiccated thyroid hormone trials. I for one do, but my experiences echoes those found in this survey. I have had patients who feel well with levothyroxine alone and others that only feel well on desiccated thyroid. While desiccated thyroid or liothyronine can help they must be taken twice or thrice daily to avoid hyperthyroid periods. This is hard to do. Sadly, I have a small number of patients in whom no combination of thyroid helps relieve their lack of wellness and dissatisfaction. These patients need more support, more evaluations, assessment for other co-morbid conditions that lead to similar complaints, more interventions with exercise, diet, stress reduction, and other complementary therapy treatments. Above all these patients must not be disregarded or dismissed just because we do not fully understand how to \”fix\” them or because they don\’t fit into our expectations of how patient should respond to established evidence-based treatments. The practice of medicine is about feeling comfortable with uncertainty in the midst of great knowledge
Reference: Peterson SJ, et al. An Online Survey of hypothyroid patients demonstrates prominent dissatisfaction. Thyroid. Volume 26(6)2018:707-721.