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After Months of Headaches and Fatigue, I Finally Got the Right Diagnosis

It took over a year to get the answer—and treatment—that would change my life.

emily goldman type 1 diabetes
Matt Zuzolo

Have you ever suddenly had to pee so badly that all of the hair on your arms stood up and goosebumps overtook your skin, like there was an electric current humming through your body? For me, towards the end of 2013, these sudden and intense urges to run to the bathroom had me wondering if I was going to make it in time. At 19 years old, that just seemed…wrong. And it would strike at any moment: As I sat down to listen to a three-hour college lecture, halfway through my elliptical routine, at all hours of the night, the urge to urinate would become all-consuming.

But that’s just because I was drinking so much water, right? Surely I was only drinking so much water because I was so thirsty, and I was so thirsty because the food in the dining hall must’ve been extra salty lately. I had a reason for everything. But, no matter how much I reasoned away my symptoms, I couldn’t ignore the truth: Something was wrong.

But no matter how much I reasoned away my symptoms, I couldn’t ignore the truth: Something was wrong

Most days I felt like I couldn’t get out of bed, but I had to, or I was going to be late for class. It felt like my mouth was full of cotton balls and like my arms and legs suddenly weighed an actual ton. My head throbbed, but that was likely from the stress of college, right? Everyone got headaches and felt drained, especially before finals. My courses were hard, my family was far away, and I was trying to make time to eat right and exercise, so it was totally normal to feel spent all of the time, right?

This is how I reasoned with myself, at least once a week, for over a year. I spent most of the better part of 14 months figuring out how to survive—without letting people know that I was just barely getting by.

My first diagnosis—and a prescription I didn’t need

About 10 months before my serious symptoms began, I experienced some mild signs that something was up. Headaches, nausea, and exhaustion crept up like a dark cloud rolling in. But that’s easy for me to say looking back. When I aged out of my pediatrician, I started seeing a general practitioner in my hometown (where I also had an endocrinologist, since I have Hashimoto’s Disease, an autoimmune disease that affects the thyroid). But after my very first appointment, I got news—and a prescription—that freaked me out.

I was told that because my fasting blood sugar was 300, I needed to start taking Metformin, a drug that helps manage how your body absorbs glucose—for prediabetes. Plus I’d have to adjust my diet and exercise. “Otherwise, everything looks good!” the doctor told me.

Hold up. It was like a record scratch. First of all, fasting? No one told me I needed to fast! I’d had a bowl of cereal before getting that bloodwork done, so the numbers must be off, I said. She explained that the number was high regardless, and I was still processing the “prediabetes.” I was 19 years old, maybe about 15 pounds overweight, but otherwise healthy—she had just said so herself! I have no family history of diabetes, but she sent me home with a prescription for Metformin and a recommendation to follow up with my endocrinologist. She agreed with the doctor, so despite my shock and worry, I went ahead and started taking the Metformin.

How I knew something was wrong

After a few days of taking the medication, I couldn’t believe it was the right choice for me. My stomach cramped on and off, and I spent a lot of time in the bathroom, as anything I ate would go right through me. This left me exhausted, spending even more time in bed. I decided to stop the medication and follow up with my specialist, the endocrinologist.

She ordered another A1C test (a test that measures your average blood glucose over the course of two to three months, from a single drop of blood). My A1C came back elevated, but not enough to warrant too much concern, according to her. But I was within the prediabetes range, so she sent me to a nutritionist. The nutritionist and I came to the conclusion that my diet wasn’t a problem (I was probably one of the few freshmen at Boston University who regularly hit up the salad bar and made sure I got my veggies in). But, what was causing the spike in my blood sugar? And these beyond uncomfortable symptoms?

A few months later, in the early days of 2014, my endocrinologist ordered another round of tests, this time looking for a slew of things that might cause elevated glucose levels in my blood. Three of these tests were for various antibodies, which if positive, could indicate a diagnosis of type 1 diabetes. One of these tests came back positive, but my doctor felt that was extremely unlikely. “That usually happens in kids, and you’re 20 years old and your numbers aren’t that high—you’re just prediabetic.”

How was I prediabetic, though? My doctors didn’t seem to hear me when I asked. I felt like I was shouting into a void, because nothing about this diagnosis made sense to me. Prediabetes usually coincides with other comorbidities and family history—neither of which applied to me.

Despite my questions, my doctor sent me home with a blood glucose meter (glucometer) and directions to test my blood sugar two hours after I ate, once a week. I was to call her office and update them with any elevated numbers (numbers above 180 two hours after eating). She also advised me to cut out carbohydrates completely (yup, no fruit or bread for me that year!), which I did—because I wanted to do just about anything to avoid developing type 2 diabetes. I loaded up on salad and protein, but I still found myself calling her office in Florida, from my dorm room in Massachusetts, just about every week for the better part of three months. It wasn’t until my blood sugars started topping 300 mg/dL consistently that I really started to worry.

Finally getting the right diagnosis

A few months later, I was home in Florida for a few days, before heading up to New York for a dream internship. I was driving my sister to the beach when I got a call from my endocrinologist’s office. I had been calling for months with various high blood sugar readings, only to be rushed off the phone by different nurses telling me to drink more water. Finally, someone was calling me.

emily goldman type 1 diabetes
Cara DiFabio

I’ll never forget that phone call. When I close my eyes I can still remember getting off of I-295 that sunny day, with the radio on and my older sister sitting next to me. I answered the phone, and the nurse said there had been a misunderstanding. That the doctor thought I was anxious about a single high blood sugar number, and hadn’t realized I’d been calling about consistently high numbers. I needed to get to a hospital immediately, as I was likely going into diabetic ketoacidosis (DKA), which happens when your body produces high levels of blood acids, called ketones—because it isn’t producing enough insulin. This can ultimately lead to coma and death if it goes untreated. I asked if I could just drive to her office instead since I was in town for a few more days. She told me to come in right away.

I met my mother at the doctor’s office and was led into an exam room straightaway where a nurse performed yet another A1C test. This time, the results showed I was well over the normal range—and way into the official diabetes range.

“You have type 1 diabetes,” the doctor told me. “This means you’ll need insulin for the rest of your life.”

I just stared at her, shocked, scared, sad—but most of all, relieved. Finally, someone was taking this seriously. I turned to my mom, who was crying, and I realized that I was, too. Both of us knew what this meant: I would have a lifelong battle ahead of me, full of needles, expensive medications and medical supplies, and so much stress.

The doctor also told me I couldn’t leave the office that day until I gave myself a shot. I stared at the syringe for what felt like an eternity, but I did it, the first in a long, long line of shots I’ve since given myself. The doctor sent me home with some pamphlets and prescriptions for insulin and needles, and I was on my way to New York City a few days later. Luckily, I was able to get into the Naomi Berrie Diabetes Center at Columbia University, where the doctors taught me how to care for myself and the disease, how to dose insulin, when to check my blood sugar, and show me that this was not, in fact, a death sentence.

Now I’m chronically...hopeful

I’ve always felt strongly that knowledge is power, so I did what I do best: I dug into learning. I researched type 1 diabetes, and ultimately found a robust online community (thanks, Instagram!). Having no family history (which is actually quite common for type 1 diabetics), I felt so alone, even though I was starting to connect with people online. I made one diabetic friend in college, Christie, but otherwise, I knew virtually no one with the disease. So Christie and I began a podcast, Pancreas Pals, in 2016, when I graduated college and moved to New York, so others who felt lonely living life with type 1 knew that someone else was out there and had experienced what they were going through. And the podcast took off.

I finally feel equipped with all of the right tools and support to help me succeed.

Then I joined the Juvenile Diabetes Research Foundation’s Young Leadership Committee, where I met fellow type 1 diabetics who were truly living their best lives. It was a whole new world for me, and provided a whole new outlook on life with the disease. I could be successful in my career, relationships, healthy, and have type 1 diabetes. These things could coexist.

Every day is a new battle, but now I finally feel equipped with all of the right tools and support systems in place to help me succeed. As the years go by, no matter how burnt out I get managing this chronic illness (because trust me, it is a full-time job keeping myself alive), I remember how far I’ve come. From begging doctors to call me back, to helping a new generation of type 1 diabetics find their footing through my podcast, I’ve come full circle.

Signs and symptoms of type 1 diabetes

It’s still a mystery as to what causes type 1 diabetes, but according to the CDC, it is thought to be caused by an autoimmune reaction (the body attacks itself by mistake) that destroys the cells in the pancreas that make insulin, called beta cells. This process can go on for months or years before any symptoms appear.

Common symptoms of type 1 diabetes:

  • Increased thirst
  • Frequent urination
  • Bed-wetting in children who previously didn't wet the bed during the night
  • Extreme hunger
  • Unintended weight loss
  • Irritability and other mood changes
  • Fatigue and weakness
  • Blurred vision
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