Warrior Stories

"It's one in a million. There's no way you have it."

A surgeon told me the name of the tumour was not worth saying out loud. It took two more endocrinologists, a test I had to arrange myself, and a set of results I carried back in my own hands before anyone would look.

By Emily Hartstone

Three chances to let it go

I was running through Atlanta airport on an ordinary Tuesday when my heart started pounding out of my chest. It felt like a heart attack, and it came from nowhere.

I had an hour before my flight, so I sat down in a restaurant and talked myself out of it. If this were really a heart attack, surely it would be worse than this. I called home. My mom said get on the plane. So I got on the plane.

Back home I saw my doctor. I was planning events all over the country then and was due to fly out again within days, so this needed sorting.

I went back to my office and got on with it, and it got worse. A few hours later I was frightened enough to call again. I was about to board another plane with something wrong with my heart. The person who answered the phone said:

I need to be clear about who I was then. I knew nothing about medicine. I had no vocabulary for pushing back and no reason to believe a doctor could simply be wrong. Everything I know now, I learned after this.

I went to Patty anyway.

She asked a lot of questions, carefully, like she was already working toward something. She sent me for stat bloodwork and said she would call within a couple of hours to tell me whether I could fly. I went home and started packing anyway. At 5:30 that evening there was a voicemail I had missed.

I had never heard of Graves disease. I looked it up, the way everyone does, and learned it was an overactive autoimmune thyroid disorder.

The correction that nearly finished me

I went to an endocrinologist, which is what you do. She put me on a thyroid suppressant, and the dose was too high.

I crashed into severe hypothyroidism. My mother had to slide her arm behind my back to help me sit up in bed. That is the detail I always come back to, because I was a woman who ran through airports and planned events across the country, and I could not lift my own body off a mattress.

The closest I have come to describing it: someone reached in and pulled my soul out. The walking dead. It is the worst I have ever felt, and I have since had cancer.

When I told her what had happened, she said she was not upset about it — she would rather this than overactive and a thyroid storm.

I had a thyroid storm anyway.

Around the same time I asked her about diet. Was there anything I should eat, anything I should avoid? I was trying to do something, anything, with my own hands. She told me not to go on an all-kale diet.

That was the entire answer. I know considerably more now about how thyroid disease and nutrition interact, and what I mostly notice looking back is that the question was a reasonable one and it was treated as a joke.

Surgery, and two good days

Eventually I had a thyroidectomy. I woke up feeling better than I had in a very long time.

It lasted two days. Then most of the symptoms came back.

I went to the surgeon, who was not the endocrinologist. He was certain, and he was right: this was not a thyroid problem. He had scraped deep to be sure he got every bit of tissue, because I had been such a severe case. Whatever was still happening to me was not coming from a thyroid I no longer had.

He gave me two possibilities. Either a rare heart condition on top of the thyroid disease, in which case cardiology. Or an endocrine tumour so rare that he would not tell me its name.

I want to sit with that for a second, because it is the most ordinary moment in this whole story and the most revealing. He was not careless. He was a good surgeon who had done a difficult operation well. He simply could not see a reason to say a word out loud to a patient who statistically could not be the person it applied to.

Somebody has to be the one in a million. There is no rule saying she also gets to be told what to Google.

The test nobody would run

My endocrinologist would not test me for it.

I found a second one. He ran the test.

It came back positive. Pheochromocytoma.

He was straightforward in a way I have come to value enormously: he had been glad to help to that point, and now it was over his head. He sent me to Cleveland Clinic Florida.

The best resume in the room

The endocrinologist I saw there had credentials that stopped you in your tracks. Harvard. Cleveland Clinic. Graduated with honours. I remember feeling relieved before I even sat down.

Her practice was diabetes and Hashimoto's. Graves and pheochromocytoma were not her territory, and it showed quickly.

Her proposal was to cut my Synthroid dose in half, down to 50 micrograms, to see whether it helped my heart rate.

My thyroid levels were perfect. I do not have a thyroid. The medication is not optional and it is not a lever; it is the only reason my body has any thyroid hormone at all. Halving it would not have addressed a tumour secreting adrenaline, and it would have put me back toward the state where my mother had to help me sit up.

I did not take the advice. I could not have explained the endocrinology of it then. I had simply learned, by that point, to notice when something did not add up — and to stop assuming the credential in the room was doing the thinking.

That is the lesson I would hand to anyone reading this. A brilliant clinician who does not treat your condition is not a resource for your condition. Prestige is not a specialty. The question is never how good is this doctor, it is how many people with my exact problem has this doctor treated.

The day everything changed

I took my results — the ones from the test she had declined to run — back to my original endocrinologist.

I told her I had gone elsewhere to get it done, because I could not get an appointment with her to do it. And then I asked her what she suggested I do now.

Something shifted. I think she understood, in that moment, that I was not messing around about my own life.

Everything in my journey changed that day, and I want to be precise about what changed, because it was not her.

It was that I walked in holding evidence instead of symptoms. Symptoms are a story you tell and someone else decides whether to believe. A positive result is not a story. It sits on the desk between you and it does not need anyone's permission to be true.

I do not think she was a bad doctor. I think she was a doctor who had been given a young woman with a racing heart, reached a conclusion early, and then had it disproven by the patient. To her real credit, when that happened she said the six words that matter most in medicine: this is out of my scope.

Mayo

I went home and read everything I could find. That was the day I learned there had been Mayo brothers — two of them, actual people. I found the film about them and watched it, and something in me changed gear. For the first time in a very long time I had hope that was attached to something real.

They helped me. They still do.

I cannot fully explain the difference in how it feels to be there. Something structural is different in a place built around the patient rather than around throughput, and you feel it before anyone has told you anything.

One fact I did find, and it has stayed with me: Mayo physicians are salaried. For more than forty years there has been no bonus pay and no compensation tied to how many patients you see or how many procedures you perform. The stated reason is to remove any financial incentive to do more than is necessary, or less than the patient needs.

I am not going to claim that one policy explains everything I felt there, because other large systems use similar models. But I had spent years being moved through appointments quickly by people who were not looking at me, and then I sat in front of people who had nowhere else to be. The contrast is not something I will ever forget.

What I do with it now

I did not set out to build anything. I searched the #thyroid hashtag on Instagram because I wanted to read, not to post, and I found an entire community of people already there. When I finally did start telling my story, what came back was not sympathy. It was recognition. Message after message from people who had lived some version of the same thing and had never seen it written down.

That is when it stopped being about me.

Count the moments in this story where it could have ended badly. The restaurant, where I decided it was probably nothing. The doctor who said I was young. The receptionist who was sure I was fine. The surgeon who would not say the word. The endocrinologist who would not run the test. The specialist who would have halved the medication keeping me functional.

Six chances to stop. I only had to say yes to one of them.

I did not have special knowledge. I had a mother who helped me sit up, a stubbornness I did not know was useful, and just enough fear to make one more phone call. That is a terrible system for keeping people alive.

EmPOWERthePATIENTS exists to put something better in its place — the words, the process, the sense that a normal result rules out one thing rather than everything. Until pushing back stops being necessary, no one should have to work out how to do it alone.

This is one person's account of her own care. It is not medical advice and no part of it should be applied to your situation without your own clinicians. Thyroid hormone replacement in particular must never be changed on the basis of someone else's experience.