The Day My Thyroid Changed Everything
How one diagnosis flipped my world upside down, and what I wish I had known sooner. A raw intro into why I’m here writing to you. Part one of my personal story.
I thought I was having a stroke…
Turns out it was Graves Disease.
It was December 2022 when I got the call that changed everything. The words “Graves’ disease” didn’t feel real, it sounded like a death sentence. Graves. It didn’t sound like something you live with, it sounded like something that would bury me. RIP to me.
I was now one of those autoimmune people… I couldn’t believe it.
The irony is that I had been asking doctors for years to pay attention to my thyroid. At every annual checkup, I’d ask for labs because I felt off: low energy, freezing all of the time, chronic constipation, hormonal chaos, stubborn acne, mood swings. My Free T3 and Free T4 always sat at the low end of “normal.” I had tiny thyroid nodules that came and went. “Follow up again in one year” was what they told me everytime. I knew something wasn’t right, but my concerns were brushed off. I was told everything looked fine. Even though I was staring at my own lab results with a dangerously low ferritin level… I was still told everything was “fine.”
By the fall of 2022, I decided to take matters into my own hands and started over-the-counter thyroid support supplements. That decision triggered the beginning of a storm. My hands shook. I felt jittery. My heart raced at 130–140 beats per minute just lying in bed. Walking and talking at the same time left me breathless. And then one day, during a call with a potential business coach, the left side of my face went numb. For a terrifying moment, I thought I was having a stroke. That was what finally sent me to urgent care.
The labs came back clear: TSH almost nonexistent, Free T3 and Free T4 sky high, and antibodies screaming autoimmune activity, specifically TSI and TRAb. Graves disease. The prescription came immediately after, methimazole, 5 mg daily.
To my surprise, the medication worked almost instantly. Within a week, I felt more like myself again. The tremors, elevated heart rate, constant panic in my chest quieted. My energy began to steady. For the first four or five months, aside from some heat intolerance and fatigue, I felt ok again. Almost normal.
And then April 2023 arrived, and my eyes began to water nonstop. At first I thought it was allergies. Until one day at dinner with my parents and my boyfriend, my inner left eye wouldn’t stop itching, and when I turned to him, he asked, “are you ok? You should go look in the mirror.” Scared of what I might see, the inner corner of my left eye was extremely red and swollen, it looked like it was going to burst out of my eye. Soon after in the following weeks I noticed that my eyes started bulging. The left more than the right. Pain with simple eye movements (up, down, left, right). Migraines. Facial pain. Blurry vision, and occasionally double vision at certain angles. Eventually, after some magnetic imaging (MRI) scans, the diagnosis was official: Thyroid Eye Disease.
That was when the reality of this illness sank in. Suddenly my face was changing in ways I couldn’t control. Looking in the mirror became painful. I started avoiding photos or hiding my left eye with my hair. Friends told me it wasn’t noticeable, that I was still beautiful. But all I could see was the disfigurement. It was devastating. I was drowning in fear of it getting worse. All I could do is isolate myself. I became depressed. What did I do to deserve this? Is it because I spent years destroying my body with stress, work, nightlife, etc? Will I ever feel normal again? I spent all of my free time googling and reading about other peoples experiences on forums. I felt like a shell of a human.
Meanwhile, my labs were “normal” again… at least according to the ranges my doctors cared about. But I felt awful. Sluggish. Cold in the middle of summer. Gaining weight. My body screamed hypothyroid, but because the numbers fell in range, they dismissed me. They saw data points, not a human. That was the moment I realized: I couldn’t leave my healing entirely in their hands.
So I began my own search. I leaned on my background as a pharmacist. I dug through PubMed papers. I had already knew the power of functional medicine after reversing my PCOS, but dug even deeper about functional medicine for the thyroid, about how the immune system, NOT the thyroid itself, was the real problem. I experimented with nutrition, functional lab testing, targeted supplements, herbs, yoga, mindfulness. I tested my boundaries, both physically, emotionally, and socially, and began to say no when I used to say yes. Slowly, I started to piece together a functional approach that was about more than managing labs in the conventional ranges. It was about supporting my whole self.
It was alot of trial and error. Months of guessing what supplements might help me, and trying them all. I got better, my eyes started to even out, my thyroid hormones were more stable and less fluctuating. But then I got sick again. Double whammy, a cold/flu/covid? and a stomach bug, while traveling. I took prescription meds, I felt better for a few days, but then it got bad again. I endured the side effects for little reward. What I was doing wasn’t enough. I had to go deeper. I had to shell out the money for the labs and the supplements. Commit to the diet & supplement regimen. But finally, something worked.
That’s why I’m here, writing to you now. Because what I needed back then was someone to say: you’re not alone. This isn’t your fault. There is more to healing than prescriptions or surgeries. There’s a way to live with this disease without letting it define you. There’s a way to heal at the root.
This is the space I wish I had when I first got my diagnosis… a place for truth-telling, curiosity, connection, and compassion. I’ll be sharing my story piece by piece, the highs and lows, the gaslighting, the breakthroughs, and the lessons that turned my despair into resilience.
If you’re reading this, maybe your world has also been flipped upside down by a diagnosis. Maybe you’re searching for the missing pieces, for someone who sees you as more than numbers on a chart.
This is just the beginning of my Graves story, and the beginning of this space. Thank you for being here.
Please say hi, I’d love to meet you!!
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