Once upon a time, I was living my best life. I was a newlywed, and I was finishing grad school while teaching a few sections of college composition. Over my Thanksgiving break, I got a stomach virus. From there, things went drastically downhill. I had repeated sinus infections, quickly dropped several pounds, and experienced a slew of other symptoms.
I saw five medical professionals over the course of over twelve months. No one checked my blood sugar. Instead, I was misdiagnosed with anorexia and hypochondria. I became increasingly depressed because no one believed me. I cried out for help, and instead, I was gaslit.
It wasn’t until a balmy day in March that things took a turn for the better. I couldn’t wake up from a mid-morning nap. My husband rushed me to the emergency room.
There, I was diagnosed with Type 1 Diabetes, an autoimmune disease in which the body ceases to make its own insulin. I was sent to the ICU and hooked up to an insulin drip. Finally, I was validated — and not just validated, but redeemed.
With sick season upon us, it’s important that people of all ages know the symptoms of type 1 diabetes. My doctors mistakenly believed that type 1 diabetes, which used to frequently be referred to as Juvenile Diabetes, wouldn’t happen to someone in their twenties. Therefore, type 1 wasn’t on their radar.
There have been multiple cases where a type 1 diabetic is misdiagnosed with common illnesses like strep, influenza, or, like me, hypochondria. Knowing the symptoms might save your life or the life of someone you love.
Here are 5 obvious signs of type 1 diabetes that my doctors missed:
1. Weight loss
Every time I attended an appointment for yet another sinus infection, the nurse would weigh me. Week after week, I dropped a few pounds. By the time I was diagnosed with type 1 diabetes in the emergency room, I weighed a mere ninety-seven pounds. For reference, I am five feet, eight inches tall. I was obviously emaciated.
According to the NHS, “Without insulin, your body will break down its own fat and muscle, resulting in weight loss.” Interestingly, in my case, I was consuming loads of calories a day, in the form of both juice and food, but I was still losing weight quickly. This is explained in our next symptom: thirst and hunger.
2. Thirst and hunger
I remember wondering how I could consume food, all day, every day, yet still be hungry and losing weight. I also couldn’t drink enough water. Any chance I got, I’d down a bottle of water or stick my face under the sink at home and gulp.
The Mayo Clinic explains, “Being very thirsty and urinating often are common diabetes symptoms.” They continue, “In people who have diabetes, extra sugar — which also is called glucose — builds up in the blood. This forces the kidneys to work overtime to filter and absorb the extra sugar.” The result — frequent urination.
Likewise, an undiagnosed type 1 diabetic might be facing insatiable hunger. The Cleveland Clinic says, “Glucose (sugar) is the main form of energy your body uses from the food you eat. Without enough insulin, your body can’t use glucose for energy.” This results in a type 1 diabetic feeling a “lack of energy” and causes “an increase in hunger.”
When the body is deprived of enough or any insulin, it is bound to be exhausted. Even with sleeping eight or nine (plus) hours a night and napping most days, especially in the last months before my diagnosis, I had to drag myself through my days of teaching, attending grad school classes, doing chores, and social activities.
According to the University of Central Florida Health, “In direct relation to gaining nutrients from food, one with undiagnosed diabetes may feel extremely tired constantly.” They add, “Even after a good night’s sleep if the body cannot pull energy out of food, it simply cannot work efficiently.”
4. Tingly feet
Almost everyone knows the annoying sensation of one of our body parts “falling asleep.” This can feel like ants or static running through that part of our body, and it’s all we can think about until normal sensation is regained. With undiagnosed type 1 diabetes, a person’s feet and sometimes also their hands, feel tingly almost all of the time.
The Mayo Clinic reports, “High blood sugar (glucose) can injure nerves throughout the body.” Nerve damage can affect legs, hands, and feet, but also “the digestive system, urinary tract, blood vessels and heart.” Undiagnosed type 1 diabetics have uncontrolled high blood sugar due to a lack of insulin — which might result in tingling sensations in some of their body parts.
5. Blurry vision
Two months prior to my diagnosis, I had my annual eye exam. I’ve worn glasses or contacts since I was in grade school. My doctor grew frustrated with me when I returned to his clinic multiple times, reporting that my prescription wasn’t correct. My vision was still blurry.
Just like uncontrolled high blood glucose can have an effect on a type 1 diabetic’s feet and hands, it can also cause blurry vision. The eye is full of nerves, and nerves are subject to damage by high blood sugar. According to the NIH, “High glucose can change the fluid levels or cause swelling in the tissues of your eyes” resulting in blurred vision. The good news is that normalized glucose levels — which can result in insulin therapy for type 1 diabetics — can return vision to normal.
These are not all the symptoms an undiagnosed type 1 diabetic might encounter. It’s important to note that the onset of type 1 diabetes is a medical emergency. If left untreated, patients can go into a state called diabetic ketoacidosis, where the body becomes toxic and begins shutting down.
This is what happened in my case. I went undiagnosed for so long that my blood sugar was seven times the norm. Doctors in the ER told me I was very close to death when I arrived. Thankfully, I was diagnosed that day and have now lived with type 1 diabetes for over seventeen years. However, if I (and my doctors) had known the signs, I wouldn’t have come so close to losing my life.
Rachel Garlinghouse is a writer residing in the St. Louis area. She is a two-time breast cancer survivor and type 1 diabetic who has committed much of her time to helping women advocate for their physical and mental health needs. She has nearly one thousand articles to her name, and she’s appeared on CNN, MSNBC, NPR, CBS, and GMA.