15/11/2025
My graves experience
Hello all,
Long-time lurker and occasional commenter here.
I want to start off by saying that while this disease may look different for everyone, most of us suffer silently in very similar ways.
I was diagnosed with Graves’ Disease in March 2025. Leading up to that, I spent over a year bouncing between doctor’s appointments with countless symptoms—extreme anxiety and depression, heat intolerance, unexplained rage, weight loss, and eventually, hand tremors. Every time I went to my GP, I was dismissed and told it was “just side effects” of my anxiety, which I was already diagnosed with. I truly thought I was going crazy.
I remember thinking, “Will I ever feel better? Is this how I’m going to live for the rest of my life?” Most days, it was a struggle to even get out of bed.
Eventually, my GP referred me to a neurologist for my shaking hands. But before I could even make that appointment, I was hospitalized—thanks to my Apple Watch alerting me that I was in AFib. My heart had been acting up for months, but I blamed it on my ni****ne v**e habit.
When I got to the ER, things escalated fast. They rushed me in, asked if I was on drugs because my heart rate was so high… and then drew blood. That’s when they found out I was in a thyroid storm. My heart rate would spike to 180–200 just from trying to stand up.
That’s when I finally got tested for thyroid issues—and got my diagnosis.
I’m a 32-year-old woman who had always considered herself healthy, but for so long I felt like absolute garbage. My mental health was so bad that I genuinely wondered if I could keep going feeling that way. In a strange way, the hospital visit was a blessing—because finally, I wasn’t crazy. I had an answer.
I was prescribed 60mg of Methimazole, heart meds, and blood thinners. I stayed in AFib for six weeks and was out of work for a month. My levels were so high it took forever for things to stabilize. It completely knocked me off my feet—especially since I had planned to start a family this year. Being told I couldn’t because of the medication was soul-crushing.
My endocrinologist went over the usual options—medication, RAI, or surgery—and each one made my head spin. I’d leave each appointment thinking, “What’s the right path? Am I doing enough?”
I started spending time on this page. Some posts gave me hope; others sent me spiraling with panic.
After eight months of weighing my options, I decided on a total thyroidectomy (TT). My endocrinologist was conservative and preferred I stay on medication, but when I asked, “If I stay on meds, will I stay in remission?” and she replied, “It’s not if you’ll relapse, it’s when,”—that’s when I knew.
I’d already experienced the trauma of a thyroid storm once, and I never wanted to go back. Methimazole was rough on my body, RAI didn’t feel right for me, and surgery terrified me—but I followed my gut. Even as I lay on the surgical table last Tuesday, I was still asking myself, “Am I doing the right thing?”
And the answer is yes.
It’s been a week, and I feel a calmness I haven’t felt in years—and no, I’m not on pain meds. I have new energy, new hope, new strength.
This isn’t me saying everyone should get a TT. It’s me saying: give yourself grace. Autoimmune diseases are complex and personal, and there’s no one-size-fits-all solution. My biggest advice is to trust your intuition.
I know I’ll have new challenges without a thyroid, but I’ll take them—because I never want to feel as hopeless as I did before.
When you read posts here, remember: we’re not all the same. But we’re all fighting something real.
Sending love and appreciation to everyone in this community.
You will get through this.
Keep fighting—even when others don’t understand why.