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  • Writer's pictureDawn Neufeld

I Don't Want to Die

Back in late August I was enjoying a week-long stay in Tulum when I had a familiar feeling. A heart palpitation. I hadn't had one in a while... I'd been managing the symptoms of hyperthyroidism with medication. But with that extra thu-THUNK of a heart beat I knew it was time for another check up with my endocrinologist.

I have Grave's Disease which is an autoimmune disease that causes hyperthyroidism. My thyroid is overactive. My symptoms are textbook - heart palpitations, heat intolerance, exhaustion, insomnia, tremors, eyesight changes, hair loss, etc. I've experienced every single one of these and in concert, they've been debilitating on and off for the last four years.

This time felt different. I'd been taking my meds yet the symptoms felt worse than before. After a quick blood test, it was confirmed once again that my thyroid was acting up and it was time to work our way towards some resolution.

The first step was to do a scan and then hopefully kill off my thyroid slowly after taking a pill of radioactive iodine. Yes, I would've been radioactive for a couple of days and would've been a danger to small babies. But the scan and ablation didn't happen that day in mid-November. The incompetent group at Baylor Plano sent me home because they said they didn't have an authorization from the insurance company. Note: they did. So I left that morning absolutely bawling and inconsolable (anxiety is a symptom of the disease). We were leaving the next week to go out of town so any other scans would have to wait until after Thanksgiving.

By that time the authorization had expired. So for about a month there was a lot of going back and forth between my doctor, Baylor Dallas, my insurance company to get this damn thing authorized. There was a denial even though it had previously been approved, so we had to go through numerous unnecessary steps to get the authorization. Mind you, during this time I'm not taking my meds because I was waiting for this any-day-soon scan. It never happened.

I'd finally gotten my authorization in hand for a scheduled scan and ablation. A couple days before everything came to a screeching halt. Based on my lab work and some shortness of breath I was experiencing, my doctor sent me to the ER to make sure I wasn't in a thyroid storm (which is really, really bad). My appointment for the scan that I fought so hard for was cancelled. I was basically too sick to get the treatment.

At my next appointment my doctor was looking at all of my paperwork and starts talking about how it's a good thing I didn't go through with the scan that following week. If I had, my already critically high levels would have spiked and I could have died. Period. But God...

I see my endo every two weeks now and I have an appointment scheduled with the surgeon who will hopefully remove my thyroid. I say it with hesitation because he's out of network and needs to get authorization from my insurance company. And well, we know how that's gone.

Fast forward to today and I'm scrolling through Twitter while eating my dinner. Page Six tweeted about a young contestant on the Bachelor who died. So I clicked on the link and just about started hyperventilating while I was reading this article (anxiety - symptom). The official cause of death for the 38 year old was hyperthyroidism and an enlarged heart. Holy f*ck. People shouldn't die from this. I don't know her situation - had she been diagnosed? Was she receiving treatment before she died? But the article shook me because it validated me. Let me explain.

About a month into my insurance authorization debacle, I told my husband one day that I felt like I was dying. Most nights I prayed to God that I would not die from this - I have been so scared I would. And I tweeted shortly before Christmas that I was afraid I was going to die because I couldn't get access to a medicine I needed. I thought there was a real possibility I might die because of this. And I'm scared.

I will say this - I have the best cardiologist and just saw him a couple of weeks ago. My heart is fine. I know what symptoms to look for that should make me drop everything and get to an ER really quick. And hopefully I will soon have my thyroid surgically removed. But knowing that what I'm dealing with could kill me (I already knew it but this story validated it for me) was enough to have me all shook up.

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