by Ashley Jordan Ferira, PhD, RDN
Once upon a time, I had a thyroid. Three years ago, to be exact. I had to undergo an emergent total thyroidectomy as a result of a severe, complicated case of Graves’ disease, further exacerbated around the time of diagnosis by another debilitating autoimmune condition, chronic urticaria. My family history for autoimmune thyroid dysfunction was significant, but looking back, I believe that my autoimmune disease trajectory may have been malleable. To what extent, I will never know. But I do know, that for years, there were missed clues along the way by healthcare teams and perhaps ways that I could have better advocated for myself as a patient.
Hindsight is 20/20, or maybe 20/40. This blog looks back, describing my clinical story of autoimmune thyroid disease and the challenging journey to find the correct diagnosis and true healthcare partners. Genetic predisposition, missed symptoms, misdiagnosis, and eventual total thyroidectomy, along with insights from a patient’s perspective, are shared in hopes of challenging and inspiring clinicians in primary and specialty care to help their own patients (with autoimmune etiology or otherwise) avoid the deleterious clinical journey and outcome that I experienced.
Symptoms = clues
Early symptoms – I was healthy for the first 30 or so years of my life. The first anomalies occurred 2-3 years before the total thyroidectomy. Transient bouts (for hours or days) of palpitations showed up first; the doctor misattributed my pounding heart to panic attacks, of which I had no previous history. Next, a body composition test revealed that I was “skinny fat” (my words; i.e., thin with low muscle mass), but I wrote off the lack of lean mass as needing to exercise more regularly.
Slight, but persistent hand tremors were the next major clue. A chief neurologist at a hospital in Los Angeles ran physical tests (including electromyography) and labs. I recall him mentioning with surprise that my 25-hydroxyvitamin D level was good (because I took 5,000 IU of vitamin D3 per day), and that my thyroid labs were fine. Only TSH and T4 (I can’t recall if it was total or free T4) were measured. I mentioned my family history of autoimmune thyroid disease, but at the time, I did not know to ask for a full thyroid panel with thyroid antibodies. He confidently diagnosed me with essential tremors, a neurological condition with less-than-appealing drug treatment options. I was young and living in sunny southern California, so I decided that the tremors were tolerable and went back to living.
Intermediate symptoms – Within 1 year of my thyroidectomy, the palpitations continued with irregularity, and the hand tremors were present but did not impact my quality of life. I was sleeping more to counteract fatigue. Then came the fullness of throat. In a matter of days, I developed a tightness in my throat that caused me to cough often and made it feel like I was choking on food and even my own saliva at times. I now know this was probably thyroiditis, but the doctor concluded, following a negative rapid strep test, that I had a virus of some kind that resulted in swollen lymph nodes in my neck.
“It’s-too-late” symptoms – Without any particular warning, an unpredictable, unrelenting array of symptoms entered the scene about 3-4 months before my Graves’ disease diagnosis and total thyroidectomy, which followed less than 1 month later. Looking back, it was like floodgates opening and an uncontrolled flow of autoimmunity having full rein on every organ in my body.
First, the hand tremors became whole body tremors. In a matter of weeks, the tremor severity prevented me from doing basic things like writing, fixing meals, and doing my makeup. Palpitations were traded for full-on tachycardia. I began overheating (having previously been cold-natured) all the time and could not remain standing in one place for more than a few seconds, or I would get clammy and lightheaded. That quickly progressed into daily blackout episodes (vasovagal syncope), in public and private, which resulted in me becoming more reclusive to protect myself. Very light menses; insatiable, painful hunger, regardless of food intake, paired with modest weight gain (yes, a subset of people gain weight with Graves’); and significantly increased bowel movement frequency were also in the mix.
I wrote off a lot of the symptoms because I couldn’t keep track nor see the big picture, and because they didn’t fit with my previous diagnosis of essential tremors. But the severe tremors in combination with the rest of the symptoms scared me enough that I wanted to rule out some other neurological condition like Parkinson’s or MS. I was relatively new to Orange County, CA at the time, and so that meant finding a new doctor, who turned out to be a lifesaver.
After lots of questions and a physical examination, this new neurologist almost immediately questioned the essential tremors diagnosis. I remember her confidently saying that I did not have essential tremors, Parkinson’s, nor MS; my neurological health was excellent. But then she said, “No, something else is causing these symptoms” and promptly ordered bloodwork. A few hours later (after business hours for her office), she called me to say that I had severe hyperthyroidism – probable Graves’ disease.1 My TSH level was undetectable (0.00), and she said my T3 and T4 concentrations were the highest she had ever personally seen. She had already scheduled a next-day appointment for me with an endocrinologist.
At that appointment, the antithyroid drug methimazole was prescribed as the best first option, followed up with a close 2nd, a recommendation for radioactive iodine (RAI) ablation therapy. The potential, but not-well-studied, risks of future thyroid cancer or heart issues following RAI, combined with the isolation requirements following RAI, were concerning to me, so I went with methimazole. Within the first week of treatment and last to the “symptom party,” came whole-body pruritus and dermatographic urticaria when I scratched any particular area. I had no previous history of allergies. When I attempted to link the urticaria to the Graves’ diagnosis, the endocrinologist said that was improbable, even though I shared the PubMed literature that indicated otherwise.2 A week later, my body was covered in agonizing hives, accompanied by angioedema; I was unrecognizable. This commenced 6 months of misery, also known as chronic spontaneous urticaria (CSU).3 CSU was previously known as chronic idiopathic urticaria (CIU); the definition remains the same – continuous hives for 6 weeks or more.4
While the first endocrinologist was overlooking my pruritus and dermatographism, I got a second opinion at Scripps Health. It was worth the drive. The endocrinologist at Scripps quickly gleaned how dire my clinical situation was, which had rapidly morphed into disability (requiring a caregiver), and agreed that expedient relief was needed. My thyroid labs were unaffected by methimazole, and the longer timeframe required for RAI, along with its high failure rates and repeat doses seen with hyperthyroidism treatment,5 made it a poor choice. I brought up total thyroidectomy from my reading of the literature, and the endocrinologist presented all associated surgical risks but concurred that thyroidectomy was a viable treatment option for severe Graves’, particularly given the complicating CSU and rapid deterioration of my quality of life. Also, the risk of thyroid storm was looming the longer we waited. Scripps Health Allergy and Surgery departments collaborated on my case and concurred that thyroidectomy would provide the most immediate and complete relief. My endocrinologist helped me secure a top-notch, high volume surgeon with an otolaryngology specialty. Patient safety outcomes are directly associated with surgery volume for thyroidectomy, a specialized procedure.6
Before surgery, high-dose beta blockers masked the tachycardia to a less debilitating level. Preoperative calcium and vitamin D3 (both of which I was already taking daily) helped combat postoperative hypocalcemia, and potassium iodide reduced blood flow to my thyroid gland. Thanks to my surgeon, the total thyroidectomy at Scripps Green Hospital went smoothly. All 4 of my parathyroid glands were preserved, and my serum calcium remained in the normal range. Beta blockers were able to be quickly weaned. In fact, amazingly all of my Graves’ symptoms resolved within 1 week post-surgery.
But to my dismay and that of my medical team at Scripps, the disabling and ghastly chronic urticaria remained for 5 more months, unresponsive to the standard of care: massive daily doses of 4+ different H1 and H2 antihistamine therapies (e.g., diphenhydramine, fexofenadine, hydroxyzine, loratadine, famotidine), in addition to several short courses of oral corticosteroids and an epinephrine pen on standby. There were a few ER visits mixed in there too, which provided no additional answers nor relief. The potent sedative effects of the collective meds was my only saving grace, because sleep was the only pain relief I experienced.
Misdirected anger: I was mad at my thyroid
Before the total thyroidectomy, my Scripps surgeon was amused when I asked him for my thyroid gland, literally. After pathology was complete, I wanted it as a survival memento and mostly to see this offensive organ face-to-face. I was thinking 9th-grade-biology-class style, a Mason jar with formaldehyde. Alas, hospital safety guidelines prevented my organ souvenir from becoming a reality, but the surgeon did kindly take a picture of my thyroid upon its removal. I felt both anger and awe looking at the bloody, dense organ that had caused me such disability and altered the course of my health and life.
At the time, I was relieved my thyroid was out, but I miss it now. I know now that the acrimony towards my faulty thyroid was wholly misdirected. The real tragedy is that my clinical story may have been avoidable or at least attenuated in some way. The earliest signs and symptoms of my Graves’ disease could have been detected by my healthcare providers. The significant family history (i.e., genetic predisposition) for autoimmune thyroid disease and likely presence of thyroid antibodies (if they had been measured) should have been pieces of my individualized patient puzzle. So what went wrong? The problem was systematic, and that system is broken.
The healthcare system is failing practitioners and patients
The current healthcare infrastructure does not set up clinicians or patients for success. And how does one define success? I’m sure there are myriad metrics, whether financial or statistics related to morbidity and mortality. But let’s be less technical and just get back to the basics. “Healthcare” is defined as “efforts made to maintain or restore physical, mental, or emotional well-being especially by trained and licensed professionals.”7 It is a “field concerned with the maintenance or restoration of the health of the body or mind.”8
So, maintenance and restoration of the body and/or mind are the goal. Through my clinical journey with autoimmune diseases, neither were achieved. Here are system breakdowns I would propose are at play:
- The “what” (signs and symptoms) are being treated, not the “why” (root causes). And in my case, the “what” was even missed. The “why” is the focus of a personalized lifestyle medicine approach,9 which requires a comprehensive knowledge base and time, both of which are lacking.
- Knowledge base: The medical school curriculum and training for most health practitioners is geared towards disease treatment, focusing mainly on utilizing pharmaceuticals, while being deficient in prevention tools. For example, most (71%) of medical schools are failing to provide the recommended minimum 25 hours of nutrition education; only 20% of medical schools are estimated to require a single course in nutrition.10-11 The evidence bases and protocols for lifestyle approaches (e.g., targeted nutritional approaches, exercise, etc.), which are established risk factors for the prevention and treatment of overweight/obesity and many chronic diseases, are virtually nonexistent in healthcare training. Their relative absence does not enable lifestyle medicine to be the front runner in disease prevention and management. Let me be clear: I’m in no way anti-medicine. There are thankfully many useful and life-saving drugs on the market, several of which I currently take for hypothyroidism and CSU. But when there are other (more efficacious) “do-not-harm” options with less side effects that can address root causes, those modalities, in my opinion, should be considered first.
- Time: The current healthcare system is like a factory, attempting to churn out products on an assembly line. It’s rushed, and the patients are not being treated as individuals, much less paying customers for a service. How can they be in 7 minutes flat? Healthcare practitioner burnout has far-reaching consequences, not just on provider wellbeing, but also for the patient and the care they will receive. While I was sharing my symptoms (clues to root causes), many of my doctors were burdened by the thought of the next 30 patients they needed to “fit in” after me. Practitioner burnout is a public health crisis12 that requires swift attention and solutions.
Here are a few additional patient perspectives on the typical healthcare approach that I gleaned during my clinical journey:
- Don’t stereotype thyroid disease (or any disease):
While stereotypes are useful for memorizing and bucketing etiology, symptoms, and treatments for countless diseases in medical school, the actual clinical presentation in humans has nuance. During my PhD studies, I took an endocrinology course. Along with memorizing (which is different than understanding) the HPT axis and feedback loop, I came away with some confident (so I thought) clinical stereotypes for the role of the thyroid in the body (i.e., metabolism, weight control) and for what thyroid disease phenotypes look like. Hypothyroidism = overweight and tired. Hyperthyroidism = very thin and wound up. In addition, there was the classic textbook image of Graves’ disease – an individual with muscle wasting and bulging eyes (i.e., exophthalmos).
That was a gross oversimplification. It turns out that thyroid hormones have pleiotropic effects in the body, impacting most organs. For me, I felt or saw effects on adipose, muscle, bone, heart, reproductive organs, gastrointestinal tract, and towards the end, my brain, with a general sense of just not feeling like myself. Many of my Graves’ disease clues were missed (see green words above). Individual symptoms may seem elusive, but taken together, they tell a story. And symptoms + family history should be particularly compelling. Don’t think of either in silos, and patients will be better off.
- PubMed is awesome, but not everything:
Just because you cannot find it in PubMed.gov, or there’s not a systematic review and meta-analysis on the topic, does not mean that it’s not biologically plausible or clinically documented. In my case, the Graves’-chronic urticaria connection was initially disregarded (even with PubMed literature to point to) simply because the association is not widely known. Maybe that just means that more inquisitive individuals need to publish on their clinical observations and findings.
- Please think outside the TSH “box”:
TSH is not the be-all and end-all of thyroid biomarkers. It does not always tell the full story. It failed me for years leading up to my eventual Graves’ disease diagnosis. Before and after my thyroidectomy, I was met with pushback when I requested labs besides TSH and T4 – like T3 (total and free), reverse T3, and thyroid antibodies. Grading one’s success on managing thyroid levels is in no way guaranteed by getting a patient’s TSH between 0.4-4.9 mIU/L, depending on the range you are using. A more narrow TSH range may be needed, and/or T3 and T4 should be included as targets for optimization too. In other words, a normal TSH does not necessarily mean that the patient’s symptoms are addressed.
The treatment approach should consider how the thyroid patient arrived to your practice (i.e., is the etiology autoimmune, postprocedural [partial or total thyroidectomy], thyroid nodules, thyroid cancer, etc.). Furthermore, not all metrics of clinical success are labs/biomarkers. For example, the tremors’ impact on my quality of life or changes in my fit of clothes, which I shared with numerous healthcare team members, were not heard. Listening ≠ hearing.
- Every person is unique, so personalize care whenever possible:
We learn the basic concept of DNA by middle school or certainly high school in most cases. We are fascinated by our unique genetic fingerprint, spitting in tubes left and right to learn more about our ancestry and other things. But, how much is our genetic uniqueness impacting or guiding clinical decision-making? Quite a lot for genetic disorders, but very little for most everybody else. Asking more intentional questions about family history (even with regards to treatment approaches that proved successful vs. not) can help guide future clinical assessment and treatment. For example, while one thyroid hormone replacement type and dose may work for one person, it may cause hair loss and fatigue in another.
Healthcare is certainly a multifaceted system with intricate challenges, but these are just a few takeaways from my healthcare experience. And, it’s worth nothing that I am a relatively proactive patient. At my appointments, I came prepared with lab history, meds (none before this thyroid ordeal), supplements, a symptom diary, and specific questions. In some cases, I had even had printed out relevant PubMed publications to inquire about. I was strongly advocating for my health and care but still got lost in the “factory” of US medicine.
Look for the “divergents”
But, I am thankful for what I call, the “divergents.” They stand out from the typical patient care approach and churn of US healthcare. Inquisitiveness, thoroughness, care, and courage differentiate these individuals from the pack. I know there are many divergent examples who can (and should) be championed. For me, they include:
- The neurologist in Orange County who was brave enough to question my previous essential tremors diagnosis.
- My talented surgeon and caring collaborative team at Scripps Health, including the allergist who helped put my CSU into remission with a novel biological therapy, a recombinant humanised anti-IgE monoclonal antibody.
- The brilliant, kind (hard combo to find) allergist in SC who provided hands-on, informed care for my long-term fight against CSU. He was also the first doctor to acknowledge the Graves’-CSU autoimmune link that I was sure of. He was research-minded and kind enough to arrange a phone call for me with one of his mentors, Dr. Allen Kaplan (former director of the Allergic Disease section of the NIH and leading researcher in the diagnosis and treatment of allergic skin diseases), whose chronic urticaria publications I had read in detail.13
- And now, my current healthcare partner in WA, an integrative advanced nurse practitioner (ANP) who has infused humanity back into my patient care experience
By observing deficiencies in the US healthcare system firsthand, it was easy for me to recognize and cherish true healthcare partners – they hear you, respect your time (i.e., see you within 10-15 minutes of your appointment time when possible), partner with you to provide comprehensive and personalized assessments and treatments, and are prepared to pivot and refine that care as needed. For example, the treatment for my postprocedural hypothyroidism has been varied, because my ANP practitioner has pivoted the approach based on labs and my feedback (as the patient, who knows their body best) to refine symptom management. LT4 alone (in synthetic and natural forms) and combination therapy (LT4 and LT3) have been tried thus far. Such HCP-patient partnership, nor combo thyroid hormone replacement therapy, are the mainstream approaches. The standard treatment for hypothyroidism is LT4 alone, but the combo T3+T4 has merit and again, depends on the patient’s individual needs.14 My provider recognizes that I have a lifelong dependence on thyroid hormone replacement ahead of me, and she wants to optimize that journey, pivoting with my physiology and needs. Because, while this is tale of a lost thyroid, it is more importantly, a story of a patient journey to find providers of healthcare.
I was debilitated for over 9 months from Graves’ disease and the gruesome, excruciating chronic urticaria. I vividly remember the first time I was finally well enough to get dressed, emerge from my apartment, and walk to the gym. It was probably premature on my part, but I desperately wanted to regain some semblance of independence and normalcy. My thyroidectomy scar was still healing, and I was covered in painful hive lesions on most of my body. And just like many gyms in Orange County, there was an abundance of attractive millennials in their latest athleisure fashions. But, I did not care. You see, an upside of severe illness and/or pain is that you learn to drop the illusion of vanity rather quickly to invest your energy in more important things like 1) survival and then 2) living again.
I stepped onto a treadmill, plugged in my earbuds, took a long swig from my water bottle, and played Sia’s song “I’m Alive.” I walked mostly and intermittently attempted a tremulous jog of sorts (recall, Graves’ disease not only burns up adipose tissue; there are significant muscle and bone losses, too). I had tears of thankfulness pouring down my face as the chorus of the song proclaimed, if not shouted, “You took it all, but I’m still breathing. I’m alive,” over and over. At the time I didn’t recognize the parallels of the lyrics to my health trial and medical journey, but I see it clearly now:
You took it all, but I’m still breathing
I have made every single mistake
That you could ever possibly make
I took and I took and I took what you gave
But you never noticed that I was in pain
I knew what I wanted; I went in and got it
Did all the things that you said that I wouldn’t
I told you that I would never be forgotten
And all in spite of you
And I’m still breathing, I’m still breathing
I’m still breathing, I’m still breathing
You took it all, but I’m still breathing
- NIDDK. Graves’ disease. https://www.niddk.nih.gov/health-information/endocrine-diseases/graves-disease. Accessed February 9, 2019.
- PubMed.gov search. Chronic urticaria and Graves’ disease. https://www.ncbi.nlm.nih.gov/pubmed/?term=chronic+urticaria+AND+graves+disease. Accessed February 9, 2019.
- Saini SS et al. Chronic spontaneous urticaria: the devil’s itch. J Allergy Clin Immunol Pract. 2018;6(4):1097-1106.
- Mayo Clinic. Chronic hives. https://www.mayoclinic.org/diseases-conditions/chronic-hives/symptoms-causes/syc-20352719. Accessed February 11, 2019.
- Schneider DF et al. Failure of radioactive iodine in the treatment of hyperthyroidism. Ann Surg Oncol. 2014;21(13):4174-4180.
- Meltzer C et al. Surgeon volume in thyroid surgery: surgical efficiency, outcomes, and utilization. Laryngoscope. 2016;126(11):2630-2639.
- Merriam-Webster. Healthcare. https://www.merriam-webster.com/dictionary/health%20care. Accessed February 8, 2019.
- Dictionary.com. Healthcare. https://www.dictionary.com/browse/health–care. Accessed February 8, 2019
- Minich DM et al. Personalized lifestyle medicine: relevance for nutrition and lifestyle recommendations. ScientificWorldJournal. 2013;2013:129841.
- Adams KM et al. The state of nutrition education in US medical schools. Journal of Biomedical Education. 2015;357627.
- Harvard T.H. Chan School of Public Health. Nutrition education lacking at most medical schools. https://www.hsph.harvard.edu/news/hsph-in-the-news/nutrition-education-lacking-at-most-medical-schools/. Accessed February 8, 2019.
- Harvard T.H. Chan School of Public Health. Leading health care organizations declare physician burnout as a ‘public health crisis.’ https://www.hsph.harvard.edu/news/press-releases/leading-health-care-organizations-declare-physician-burnout-as-public-health-crisis/?fbclid=IwAR2_mesRnufOkFd60KPwVvxChgtRf5iVHB1lvJeBhmgJZpsvsFjmDFjymSU. Accessed February 8, 2019.
- PubMed.gov search. Kaplan a chronic urticaria. https://www.ncbi.nlm.nih.gov/pubmed/?term=kaplan+a+chronic+urticaria. Accessed February 11, 2019.
- Jonklaas J et al. Physician choice of hypothyroidism therapy: influence of patient characteristics. Thyroid. 2018;28(11):1416-1424.
Ashley Jordan Ferira, PhD, RDN completed her bachelor’s degree at the University of Pennsylvania and PhD in Foods & Nutrition at The University of Georgia, where she researched the role of vitamin D in pediatric cardiometabolic disease risk. Dr. Ferira is a Registered Dietitian Nutritionist (RDN) and has served in leadership roles across local and statewide dietetics, academic, industry, and nonprofit sectors.