Chapter 1: The Initial Diagnosis

In October 2019, a routine check-up with my gynecologist revealed abnormal thyroid levels, leading to a referral to an endocrinologist. I had been feeling unusually fatigued and mentally foggy, which I attributed to menopause and hormonal changes. At 52, I considered myself generally healthy, with no significant medical issues.

However, my thyroid tests showed I was hyperthyroid—my thyroid was overactive, producing excess hormones. This condition typically manifests as symptoms like a rapid heartbeat, anxiety, or weight loss, but I experienced the opposite: low heart rate and blood pressure. My endocrinologist was puzzled, prompting further investigations.

What ensued were a series of invasive tests that raised alarms about a potentially malignant thyroid. Numerous scans, two biopsies, and an isotope imaging session painted a concerning picture of a severely compromised thyroid. Naturally, this caused significant anxiety.

Ultimately, the only solution presented was the removal of my thyroid gland, with surgery scheduled for January 2020. At that time, the world was just beginning to learn about the virus in Wuhan, but hospitals were still operational, and my surgery went ahead as planned. Just a few months later, the world would face unprecedented chaos.

On January 17, 2020, my thyroid was surgically removed. The surgeon noted its unusual hardness, likening it to wood, and suggested it appeared more fibrotic than cancerous—a claim later confirmed by pathology results. The good news was that there was no cancer in my thyroid or lymph nodes, but the bad news was that I had a rare inflammatory condition known as Riedel’s Thyroiditis, which replaces healthy thyroid tissue with dense, fibrotic tissue, drastically impairing its function.

Most individuals with Riedel’s develop symptoms of hypothyroidism, but my situation was more complex. My lab results indicated pockets of hyperactivity, leading to the mistaken belief that I had cancer.

Did my thyroid truly need to be removed? This question circulated among my medical team, but for me, it was a case of too little, too late.

The day after the surgery, I began taking thyroid medication (T4 100mcg) since I no longer had a thyroid to produce the vital hormones my body required.

A daunting realization struck me: my life now hinged on a pill.

At my follow-up appointment in March 2020, my lab results showed high fT4 levels and very low TSH (Thyroid Stimulating Hormone). Despite feeling mentally foggy and fatigued, my endocrinologist insisted I was on the path to recovery, deeming my medication dose too high and reducing it to 75mcg.

I questioned the relevance of TSH in my situation, given my lack of a thyroid, but he assured me it remained a reliable indicator of my hormone levels.

Another month passed, and my TSH was still low, but my cholesterol had skyrocketed, alongside irregularities in my kidney and liver function tests. My fT4 levels remained high, but fT3 was nearly nonexistent. This led my endocrinologist to propose further reducing my T4 dosage to 50mcg, despite my protests about it being too low.

As COVID-19 restrictions intensified, I was unable to see my endocrinologist for several months. During this time, on the 50mcg dose of T4, I felt increasingly unwell and developed new physical symptoms. My nails began to separate from their beds, and my left eye started to bulge, leaving me with an unsettling appearance. I struggled to look at myself in the mirror, questioning how I had deteriorated so quickly.

What was meant to be a life-saving thyroidectomy left me feeling worse than before.

Convinced that my T4 medication was the issue, I took matters into my own hands by researching thyroid health online. I discovered valuable resources from experts like Dr. Westin Childs at restartmed.com, Paul Robinson at PaulRobinsonThyroid.com, Tania Smith at ThyroidPatients.ca, and Janine Bowthorpe at Stopthethyroidmadness.com. I encourage anyone facing thyroid challenges to explore these sites and take charge of their health.

Knowledge is empowering, and after understanding my situation, it took another eight months of advocacy before my endocrinologist agreed to prescribe T3 medication in addition to T4. In the meantime, I experimented with natural desiccated thyroid (NDT), but it left me feeling severely hypothyroid.

During this period, I not only battled physical ailments but also faced mental health struggles. I was under the care of multiple specialists for my eye condition, nails, and kidney issues, leading to an overwhelming number of doctor visits and prescriptions.

Deep down, I believed my physical problems were interconnected, although my various doctors disagreed. I didn’t have Graves’ disease, which typically causes eye issues, so my eye condition didn’t seem to fit. Despite being severely hypothyroid, the T4 medication didn’t alleviate my symptoms. My kidney and liver function tests fluctuated without explanation, leaving us all puzzled.

One doctor even suggested an autoimmune condition, prompting extensive blood tests that yielded no answers.

The more I read on thyroid forums, the more convinced I became that my body struggled to convert T4 into T3, resulting in a severe deficiency of T3 at the cellular level. This deficiency explained the dysfunction in my organs, which were essentially starved of the vital hormone.

Armed with research from the websites I had explored, I approached my next endocrinology appointment with determination. Moved by my plight, my endocrinologist agreed to initiate a combined therapy of T3 and T4.

We even had to search online together for a suitable dosing regimen for my new therapy—his lack of experience in this area was evident. The hospital pharmacy had limited T3 medication on hand, as it was rarely prescribed; they needed to source it from another facility across town.

After a month on the T4/T3 combination, my blood tests revealed remarkable improvements. My markers were mostly normal, with TSH still low but understandable. Cholesterol levels dropped to a healthy range, and my liver and kidneys returned to normal function. My endocrinologist was astonished, suggesting there must have been a lab mix-up.

Six weeks later, my eye issues vanished, and it took a few more months for my nails to regain their health. Today, I am content on a T4/T3 combination therapy, making occasional adjustments to find the right balance for my body.

Most importantly, I have developed a newfound appreciation for my body and its complex processes. I have learned to be cautious about blindly trusting medical professionals, as many endocrinologists lack a comprehensive understanding of thyroid hormone dynamics and their interrelationships.

This lack of knowledge is concerning, especially considering how many people rely on these professionals to manage their health.

As for Riedel’s Thyroiditis, the condition that turned my thyroid into stone, there is always a lingering concern that it might affect other organs. However, I choose to live in the present and enjoy my health as it stands today.

Tomorrow is uncertain, and I refuse to let fear dictate my life.

Chapter 2: The Road to Recovery

This video explores the dangers of thyroid disorders, shedding light on the potential risks associated with untreated conditions and the importance of early diagnosis.

Chapter 3: Moving Forward with Confidence

In this video, patients share their experiences of life after thyroid surgery, emphasizing the adjustments they’ve made and the importance of ongoing support.