Patients are more than Pathologies - Thyroid Edition

The thyroid is both literally and figuratively near and dear to my heart.

I grew up watching a close family member be written off, “monitored” for years, and told that her problems were “just hormones”. I watched this person gain weight which, regardless of diet and exercise wouldn’t come off. I watched this person’s beautiful, thick, black locks of hair turn thin, and I watched their condition progress over the years, while doctors claimed that she was doing great and her “numbers were normal”.

She felt far from normal.

It wasn’t until I started to see my own patients that I figured out that she was not alone, and that this was a common issue in the medical world. In fact, Synthroid was the most commonly dispensed drug in Canada in 2021 (so you can imagine how common this issue actually is).

I watched people, mostly women, get gaslit by their doctors when they voiced their concerns. I watched them become dismissed and they all, after some time, began to feel like they were going a little crazy. Was it all in their heads? Thyroid disorders occur when the thyroid gland produces too much or too little hormone, leading to a range of symptoms that can affect a person's quality of life. Symptoms of an underactive thyroid (hypothyroidism) include fatigue, weight gain, dry skin, and constipation, while symptoms of an overactive thyroid (hyperthyroidism) include weight loss, anxiety, and sweating. These lists are far from exhaustive, but are some of the most commonly seen symptoms. These conditions can be debilitating, and I write this post as a gentle reminder that when we have a patient in front of us with a thyroid condition, we should make every effort to see them wholly, entirely, with effort to understand their reality. The most common medical approach to treating thyroid conditions is prescribing a hormone replacement therapy that brings thyroid numbers back into "normal" ranges. The word normal was written in quotations on purpose. This approach is problematic for several reasons. First, let's consider the fact that thyroid hormones vary within a circadian cycle. In other words, throughout a 24 hour cycle, thyroid hormones are changing and responding to their internal and external environments. The thyroid is a sensitive structure, and can be affected by many factors including, but not limited to the following:

• Iodine intake

• Medications

• Stress and anxiety

• Sleep quantity and quality

• Smoking

• Age

• Sex and sex hormones

• Weight

Secondly, we must be mindful of the variations in what is considered "normal". A study published in the Journal of Clinical Endocrinology and Metabolism found that the upper limit of the normal range for TSH (a hormone produced by the pituitary gland that regulates thyroid hormone production) varied between 2.5 and 5.0 mIU/L depending on the laboratory, despite the reference range being 0.4 to 4.0 mIU/L. This means that a person with a TSH level of 3.5 mIU/L may be considered "normal" in one laboratory but "abnormal" in another, leading to confusion and inconsistencies in treatment. The variations in thyroid hormones and their reference ranges brings to light the idea that treating thyroid disorders based solely on bloodwork ignores the fact that patients with thyroid conditions may require higher or lower doses of thyroid medication to feel their best. It is important that we consider not only the amount of "free" hormones (the levels in the blood), but also how these hormones are interacting with body tissues. Just because the hormone is present at normal levels, doesn't mean it is behaving optimally.

It can be difficult to understand how a hormone can "behave" in certain ways, and it is easy to think that if the hormone is present, then it should just work. Let's think about diabetes for a second. There is something called "insulin resistance", which means that the body is producing enough insulin, but the body is not reacting with it the way it should. In a similar way, one can have "enough" of something in their body, without being able to use it, and therefore will have symptoms. While I am no endocrinologist or thyroid expert, I have had my fair share of thyroid patients in the physio department express distress regarding the approach their physicians are taking to manage their conditions, and I have seen setbacks, plateaus, and barriers to recovery and progression that can, to some extent, be attributed to their thyroid condition being sub-optimally managed. Let’s look at some brief examples: Marla Ahlgrimm, a pharmacist and women’s health advocate, was diagnosed with hypothyroidism in 1980. Despite being prescribed medication based on her bloodwork results, Marla continued to experience symptoms such as weight gain, hair loss, and fatigue. It wasn't until she found a doctor who was willing to listen to her symptoms and adjust her medication accordingly that she was able to feel her best. __________________________________________________________________________________ Dana Trentini was diagnosed with hypothyroidism in 2006. Despite being prescribed medication based on her bloodwork results, Dana continued to experience symptoms such as fatigue and weight gain. It wasn't until she sought a second opinion from an endocrinologist who listened to her symptoms and adjusted her medication that she began to feel better. __________________________________________________________________________________ John Doe (name changed for confidentiality) came to an outpatient practice I spent time at as a student physiotherapist. He was in his mid 30s and was otherwise healthy. He initially complained of “global joint pain”, which had started a number of months prior. I entered the room after the assessment had started and assumed all bases had been covered. The supervising therapist and I cleared every possible red flag, every orthopedic test, every neuro scan, every screen and cluster for arthritis, and his bloodwork was negative for rheumatic disease. His strength was excellent, he was a very active person, and we had run out of ideas. The perfectionist and problem-solver in me went back to his subjective assessment, and I noticed that “thyroid condition” was documented under health history but nothing more was written. I shyly asked the therapist and patient if I could pry a little. “Hypo or hyper?” I asked him. “Hypo”, he replied. “Synthroid, I assume?” I followed. “Yes, I think my dose is way too high though" “Can you elaborate?” “I was never fat but lost a ton of weight since I started it, and I don’t sleep well anymore, and my pains only started a couple months after starting that new dose. My doctor says my numbers are normal, so he won’t change it”. “I’m just a student, and perhaps my supervisor has a different opinion, but I don’t think physio is the answer for you. I think your doctor needs to listen to you”. A few hours of time and a carefully crafted note to his doctor resulted in a dose adjustment. We did a follow up toward the end of my placement and his pain was gone. __________________________________________________________________________________ Jane Doe (name changed for confidentiality) is a lovely woman who I have just recently finished treating, since she is moving away. She was referred for arthritis-related knee pain which we worked on and found some improvement. During our sessions, the topic of her thyroid kept coming up. She had a thyroidectomy years prior, and has since never felt normal. Her hair has been thinning, her eyes and skin are dry, and she’s put on weight. She told me that her doctor won’t change her dose of Synthroid because her numbers are “normal”. “I don’t feel normal, and I’m not being heard”, she said as tears swell up in her eyes. She went to see a specialist and was excited for a second opinion, and asked if I knew anything about thyroid medications. “A little”, I replied. “I’m not a doctor and so I can’t recommend or prescribe medications, but I can suggest that you speak to this specialist about both synthetic and biologic hormone replacements. Desiccated thyroid may be an option, but again, I can’t prescribe or recommend, so speak to the experts and see what they say”. Upon her return for her next appointment, she was almost in tears, again. “What happened at the appointment?” I asked as we reviewed her exercises. “They told me that if I’m interested in a biologic then I am no longer welcome as their patient. They totally went off on me and I didn’t even have the chance to ask any questions. I was holding back tears the whole time”. I hate to generalize, but this isn’t the first time I’ve had a patient make statements like this. Is this how we are treating people with genuine concerns about their health? Biologic thyroid is a controversial topic, despite the fact that all doses have DINs (drug identification numbers) and are regulated by Health Canada. However, given that I am no expert, I am not here to start a debate about it. What I am wanting to point out is that this population is being treated like a number on a piece of paper, rather than the unique and complex beings that they are. Patients are people, not TSH. They aren’t merely T4 or T3. They are people who wear hats to cover their thinning hair. They are people whose eyes are so dry they don’t even cry at funerals. They are people who can’t fit into any of their clothes anymore. They are adults who nap more than their grandchildren. They don’t feel normal, and their suffering should not be normalized.

These stories highlight the importance of treating thyroid conditions based on both bloodwork results and how the patient feels. It is important as healthcare providers to listen to our patients' symptoms and evaluate all treatment options, regardless of our internal biases, and ultimately make the best decision for each individual. It would be unethical to refuse birth control to a young woman because one doesn't believe in sex before marriage. In the same manner, biases for or against certain thyroid treatment options should not be at the forefront of a consultation. Let's not forget about the biopsychosocial model of care. People are complex and diverse, and what they really want is to thrive in their respective environments. It is important that we make care decisions based on all facets of a person's life, not just one reference number. This approach can lead to better therapeutic relationships, better patient outcomes, reductions in conditions such as osteoporosis, cardiac disease, and muscle wasting, and significant improvements in quality of life.

References:

1. American Thyroid Association. (2021). General Information/Press Room. https://www.thyroid.org/media-main/about-hypothyroidism/ 2. Hollowell, J. G., Staehling, N. W., Flanders, W. D., Hannon, W. H., Gunter, E. W., Spencer, C. A., & Braverman, L. E. (2002). Serum TSH, T4, and thyroid antibodies in the United States population (1988 to 1994): National Health and Nutrition Examination Survey (NHANES III). Journal of Clinical Endocrinology and Metabolism, 87(2), 489–499. https://doi.org/10.1210/jcem.87.2.8182 3. Garber, J. R., Cobin, R. H., Gharib, H., Hennessey, J. V., Klein, I. L., Mechanick, J. I., Pessah-Pollack, R., Singer, P. A., & Woeber, K. A. (2012). Clinical practice guidelines for hypothyroidism in adults: Cosponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association. Endocrine Practice, 18(6), 988–1028. https://doi.org/10.4158/EP12280.GL 4. Stagnaro-Green, A., Abalovich, M., Alexander, E., Azizi, F., Mestman, J., Negro, R., Nixon, A., Pearce, E. N., Soldin, O. P., & Sullivan, S. (2011). Guidelines of the American Thyroid Association for the diagnosis and management of thyroid disease during pregnancy and postpartum. Thyroid, 21(10), 1081–1125. https://doi.org/10.1089/thy.2011.0087 5.Trentini, D. (2012, May 16). Misdiagnosis of Hypothyroidism: The Thyroid Stimulating Hormone (TSH) Blood Test Is Not Enough. HuffPost. https://www.huffpost.com/entry/misdiagnosis-of-hypothyroidism_b_1495800 6. Ahlgrimm, M. (2015, March 25). How I Was Diagnosed with Hypothyroidism and My Personal Struggle. HuffPost. https://www.huffpost.com/entry/hypothyroidism_b_6927590

7. Biondi B, Cooper DS. The clinical significance of subclinical thyroid dysfunction. Endocr Rev. 2008;29(1):76-131. doi: 10.1210/er.2006-0043

8. García-Mayor RV. Limitations of current thyroid function tests. Endocrinología, Diabetes y Nutrición. 2017 Jun 27;64(7):404-5.

9. Babić Leko M, Gunjača I, Pleić N, Zemunik T. Environmental factors affecting thyroid-stimulating hormone and thyroid hormone levels. International Journal of Molecular Sciences. 2021 Jun 17;22(12):6521.

10. Topliss DJ. What happens when laboratory reference ranges change?. CMAJ. 2020 May 4;192(18):E481-2.

11. https://www.statista.com/statistics/1336225/top-dispensed-drugs-canada/#:~:text=Leading%20dispensed%20drugs%20based%20on%20prescriptions%20Canada%202021&text=In%202021%2C%20prescription%20drug%20Synthroid,more%20than%2020%20million%20prescriptions.