Misdiagnosed as a Type 2 Diabetic at 18

March is 14 years that I have been a type 1 diabetic. In that timeframe, I have struggled. I didn’t always talk about the fact I had diabetes. But I didn’t hide it. There were times I did try to ignore it, but that didn’t work out. Then the times I worked hard, it would kick my butt. Also not having any health insurance did not help.

I was misdiagnosed in 2008 at 18 years old as a type 2 diabetic. I experienced extreme thirst, weight loss, urination, and fatigue. This went on for a few months. When I finally went to the urgent care, they asked me questions and did a finger poke to test my blood sugar. Only at that moment, I didn’t connect the dots. My blood sugar was in the 600’s.

I remember the nurse making the comment “Oh. That’s why you feel so sick.” and leaving the room. But no one said anything to me like “ Hey your blood sugar is high, looks like diabetes.” Again I was so very tired and not with it. They hooked me up with what I’m guessing, was an IV of fluids. Shortly after the dr came in and started talking about diet, lifestyle changes, medication, and testing my blood sugar as a type 2 . After that I got moved to a new room.

The next day the dietitian come up to my room and went over diet and carbs. I was told to keep meals under 60 carbs and a list of free foods that I know now, are not free. I spent a few more days in the hospital and was then sent on my way.

At the time I was working for Americorps NCCC, which is a ten-month commitment doing volunteer work across the U.S, where they fed, pay, and housed you. During that time they offered health insurance, but once it was time to go back home to WI I didn’t have any kind of health insurance anymore.

Sometime in 2009, I ended back in the hospital and DKA again. The first time was the year before when I was first diagnosed but we didn’t know it at the time. Diabetic ketoacidosis is when the body starts breaking down fat at a rate that is much too fast. The liver processes the fat into a fuel called ketones, which causes the blood to become acidic. My body was shutting down and was slowly dying.

Almost immediately after I was admitted they told me there was no way I was a type 2 and I was a type 1 diabetic and the first hospital misdiagnosed me. They gave me a slightly better education on diabetes but still gave me the same “free food “ list and to keep meals around 60 carbs and snacks at 15 carbs. They even helped me find a low-income clinic so I could get the insulin that I need to stay alive.

Sometimes the dr would be helpful but I did get a few that were just no help. There were times when my A1c, which is a blood test that measures your average blood sugar over the past 3 months, would be on the higher side and I would get a “lecture” on better blood sugar management but no actual help. Even when I was trying my hardest. Or I was simply burnt out and was not trying as hard. It was very frustrating at times.

I went to this clinic for about 10 years until I got married and my husband had a job that offered health insurance in 2018. During the 10 years that I went to a low-income clinic every month. They gave me everything I needed. Long and short-acting insulin pens, test strips, pen tips, and more. As great as the clinic was, there were too many hands. Paperwork would be missing and sometimes the commutation was not the best. I would also have a different dr every month.

But they did try their best. Every year they would help me apply for state insurance and every time single time I would be denied. But I had no problem getting forward health benefits for family planning, basically, I only qualified for birth control and nothing else.

Then in 2018, my husband qualified for the health insurance offered through his job. I was finally able to establish a primary dr, an endocrinologist, who specializes in the endocrine system and diabetes, and a diabetes educator/nutritionist. I now have a great team to help me manage my diabetes better.

In 2021 I finally moved from insulin pens and finger pokes to an insulin pump and cgm (continuous glucose monitor) which has been a game-changer for me. I did start on the Omnipod dash and Dexcom in March and April but after about 8 months I switched over to the Medtronic 770g System. The Medtronic’s 770g is a closed loop[ system where the guardian sensors talk to the insulin pump and make adjustments as needed. This time last year in march of 2021 my A1c was a 9.8 and right now it is a 6.6.

Since seeing my diabetes educator/nutritionist I have had updated education on diabetes. For example, coffee is NOT a free food. Caffeine can induce an adrenaline rush and can impact the blood sugar and make it rise. Or that fat and protein can also impact blood sugar. Those were a few things I didn’t know but only found out when I started using a CGM.

A lot has happened in the last 14 years for me and I have learned so much. Diabetes is a 24/7 job that you do not get to take a vacation from or get paid. At times it can be a lot and burnout is real. I hope you found this interesting or even helpful.