Finding the Right Diagnosis Took More Than a Year

Have you ever felt such an intense urge to urinate that your skin broke out in goosebumps and all the hair on your arms rose up, as if an electric current were humming through your body? Towards the end of 2013, I experienced unexpected, strong impulses to use the restroom, and I began to worry that I wouldn’t have time. That just seemed…wrong to me at 19 years old. The urge to urinate would become overwhelming at any time: midway during my elliptical workout, at all hours of the night, when I sat down to listen to a three-hour college lecture.

But perhaps that was only a result of my excessive water consumption? I had to be drinking so much water because I was so thirsty, and the recent saltiness of the meal in the dining hall must have contributed to my extreme thirst. Everything I did was for a cause. No matter how hard I tried to rationalize away my symptoms, the reality remained: Something was wrong.

The most of the time, I didn’t want to get out of bed, but I had to otherwise I would be late for class. My tongue felt like it was full with cotton balls, and my limbs and legs felt like they suddenly weighed a ton. My head hurt, but surely it was just the strain of college? Everyone had headaches and fatigue, especially prior to finals. It was quite normal to feel exhausted all the time because my classes were challenging, my family was spread out, and I was also trying to find time to eat healthily and exercise.

For more than a year, I had this conversation with myself at least once a week. I spent the most of the last 14 months finding out how to get by—without letting anyone know that I was struggling.

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

I started having some moderate symptoms about ten months before my significant problems started. The feeling of nausea, fatigue, and headaches came on slowly, like a black cloud. But looking back, it’s simple for me to say that. I began visiting a general practitioner in my hometown when I outgrew my pediatrician, and I also saw an endocrinologist there since I had Hashimoto’s Disease, an autoimmune condition that affects the thyroid. But following my initial checkup, I received news—and a prescription—that alarmed me.

I was informed that I needed to begin taking Metformin, a medication to help control how your body absorbs glucose, for prediabetes because my fasting blood sugar was 300. I would also need to change my activity and diet. Otherwise, everything appears to be fine, the doctor exclaimed.

Hold on. Like a scratch on a record, it was. What about fasting first? I never received any advice to fast. The bloodwork was done before I had eaten a bowl of cereal, so the results must be inaccurate, I reasoned. She stated that even with the high score, “prediabetes” was still being processed by my body. Had just admitted it herself, but I was 19 years old, possibly 15 pounds overweight, and otherwise healthy. She sent me home with a prescription for Metformin and a recommendation to follow up with my endocrinologist despite the fact that I have no family history of diabetes. I went ahead and started taking the Metformin despite my shock and anxiety because she agreed with the doctor.

How I realized there was a problem?

After taking the prescription for a few days, I was unable to accept that it was the best option for me. I occasionally experienced stomach pain, and I frequently used the restroom because anything I ate would pass right through me.Was so worn out after that that I had to spend more time in bed. I made the decision to stop taking the medicine and follow up with my endocrinologist.

She requested a second A1C test (a test that measures your average blood glucose over the course of two to three months, from a single drop of blood). She said that although my A1C was higher, it wasn’t too high to cause her too much anxiety. But because I had prediabetes, she recommended I see a dietitian. Together with the dietitian, I determined that there was nothing wrong with my diet (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 why was my blood sugar level rising so quickly? And these symptoms go beyond being uncomfortable?

A few months later, in the beginning of 2014, my endocrinologist placed another set of test orders, this time searching for a variety of potential causes of my blood’s abnormal glucose levels. Three of these tests were for different antibodies, and a positive result could suggest a type 1 diabetes diagnosis. One of these tests yielded a positive result, but my doctor thought it was highly improbable. You’re 20 years old, your statistics aren’t too high—you’re only prediabetic—and that normally happens in kids.

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How did I have prediabetes?

When I asked, my doctors didn’t appear to pay attention. Nothing about this diagnosis made sense to me, so I felt like I was yelling into space. The typical comorbidities and family history associated with prediabetes didn’t apply to me.

Despite my concerns, my doctor prescribed a blood glucose meter (glucometer) and instructed me to check my blood sugar once a week, two hours after eating. Any increased values (those over 180 two hours after eating) were to be reported to her office by phone. She also suggested that I entirely take up carbohydrates, which I did (yup, no fruit or bread for me that year!) because I was willing to try anything to prevent getting type 2 diabetes. I ate a lot of lettuce and protein, but even after that, I found myself contacting her Florida office from my Massachusetts dorm room pretty much every week for the better part of three months. I didn’t really start to worry until my blood sugar constantly exceeded 300 mg/dL.

Finally getting the right diagnosis

A few months later, I spent a brief period of time at home in Florida before departing for my dream internship in New York. My endocrinologist’s office called when I was driving my sister to the beach. I had been calling with various high blood sugar readings for months, but each time, the nurses would rush me off the phone and advise me to drink more water. Finally, I received a call.

I’ll always remember that phone call. When I close my eyes, I can vividly picture getting off I-295 on that bright day, listening to the radio and sitting next to my older sister. When I picked up the phone, the nurse explained that there had been a miscommunication. That the doctor assumed I was concerned only about one high blood sugar reading and was unaware that I had been contacting about routinely high readings. I needed to get to the hospital right away since I was probably about to enter diabetic ketoacidosis (DKA), which occurs when your body creates excessive amounts of the blood acids ketone because it isn’t producing enough insulin. If left untreated, this may eventually result in coma and death. Since I planned to stay in town for a few more days, I asked if I might just drive to her office instead. She instructed me to enter immediately away.

My mother and I arrived at the doctor’s office together, and I was immediately ushered into an examination room where a nurse conducted yet another A1C test. This time, the results showed that I was much above the normal range and well within the recognized range for diabetes.

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

I simply stared at her, feeling astonished, afraid, sad, but mostly relieved. Someone was at last paying attention to this. When I turned to look at my mother, I saw that I was also in tears. We both understood what this meant: I would face a lifelong battle involving several needles, pricey meds and medical supplies, as well as a great deal of stress.

The doctor also instructed me to administer an injection to myself before leaving the office that day. After what seemed like an eternity of staring at the syringe, I finally gave myself the first of many shots I would later administer to myself. I was soon on my way to New York City after the doctor sent me home with some leaflets, prescriptions for insulin, and needles. Fortunately, I was able to enroll in the Naomi Berrie Diabetes Center at Columbia University. There, the medical professionals taught me how to take care of the condition and myself, showed me how to administer insulin, when to check my blood sugar, and convinced me that this was not a death sentence.

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Now I’m chronically…hopeful

Since I’ve always believed that information is power, I did what I do best and started studying. After doing some research on type 1 diabetes, I discovered a vibrant online community (thanks, Instagram!). Even though I was beginning to connect with others online, I felt quite alone because I have no family history (which is actually pretty common for type 1 diabetics). Christie, a diabetic acquaintance I made in college, was the only other person I knew who had the condition. So when I graduated college and relocated to New York in 2016, Christie and I started a podcast called Pancreas Pals to let those who felt alone living with type 1 know that someone else was out there and had gone through what they were going through. The podcast thereafter started to gain popularity.

I finally feel as though I have all the necessary resources and assistance to support my success.

Then I joined the Young Leadership Committee of the Juvenile Diabetes Research Foundation, where I met other type 1 diabetics who were actually living their best lives. It opened up a whole new world to me and gave me a fresh perspective on living with the sickness. I might have type 1 diabetes while also being successful in my relationships, job, and overall health. Both of these things might exist.

Every day is a new challenge, but I finally feel like I have all the necessary resources and assistance in place to help me prevail. As the years pass, I am constantly reminded of how far I’ve come, no matter how exhausted I become from managing this chronic condition (because, believe me, it is a full-time job just to keep myself alive). I’ve come full circle—from pleading with doctors to return my calls to now guiding a new generation of type 1 diabetics through my podcast.

Signs and symptoms of type 1 diabetes

Although the exact etiology of type 1 diabetes is still unknown, the CDC reports that it is believed to be brought on by an autoimmune reaction, in which the body unintentionally targets its own beta cells, which are the cells that produce insulin in the pancreas. Before any symptoms show, this process can continue for months or even years.

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