Two years ago, I was just finishing up my first year of grad school. I was 22 years old and excited about what life had to offer. Being in the Midwest, the late spring weather was a welcome break from the awful winter and gray early spring–it inspired me to do a mini-renovation on my life.
I began exercising by walking the total of two miles to and from school instead of driving, and began eating a lot better. I was amazed at how quickly the pounds dropped off–sixty pounds, and I dropped from a size 14 to a size 8! There was nothing to this exercise thing. One night I was telling my dad about my success, and he asked me if I had been drinking a lot of water. Sure, but I always drank a lot of water. I just liked water. He asked how much I had been going to the bathroom–a lot, but… surely, that’s because of all the water I’d been drinking, and all the water was due to the exercise and the increasingly hot weather!
“Well,” he said, "it doesn’t hurt to get a simple blood test done."
On our road trip home to California that summer, he and I stopped at a minor league baseball game. Feeling nauseous, I thought I had the flu or some similar bug. I chose to have a frozen lemonade and a soft pretzel to soothe my stomach. The rest of the night I was passing in and out of consciousness, sweating, alternately burning up and chilled to the bone. It was the nastiest case of “flu” I had ever experienced, and I was delirious for the bulk of it.
Three weeks later, I was officially diagnosed as a Type 2 diabetic. “Or it could be leukemia,” the doctor said. “We’ll treat you for diabetes with Metformin, and if that doesn’t work, we’ll look into more serious steps.” With that reassuring information, I was sent out into the great unknown. I was placed in a nutrition class which told me to stay away from any processed grains, and I met with a health therapist who asked if I had any friends with diabetes. I said no, and she nodded and concluded our session. I left feeling worse than when I walked in the door.
I dutifully took my half doses, then full doses, then double doses of Metformin. My blood sugars kept climbing as I was restricting myself to meals of 15g carbs apiece. I felt lost, frustrated, and confused. I was doing better than what the doctors wanted. My A1C, once I began controlling, was 5.3! Why, then, was it climbing? I was still losing weight, and was down to a size 2 or 4 at this point.
I mentioned the infamous “honeymoon phase” to doctor after doctor, only to be dismissed. “No,” I heard repeatedly, “you’re definitely Type 2. Just up your Metformin.” My GP agreed to put me on insulin for tighter control, but attributed my BS levels to stress–grad school and multiple health conditions, after all, are no walk in the park. Finally, my GP referred me to an endocrinologist. The endo took a blood test, saw my GAD antibodies result, and immediately re-diagnosed me: I was now a Type 1.
This happened within the last couple of months. I’m now on an insulin pump, and dealing with all the new information that comes with that change. I’ve only changed my infusion site once, and was terrified the entire time. Some carb counting is still a guess. I have the flu right now and my BS levels are all unsettled–highs and lows all over the place.
I just don’t know what to do some days, and other days, I have moments where I forget I’m a diabetic. I’m so glad to have found this site–to get answers, to commiserate, to discuss, and to share.
Thanks for sharing your story! You have come to the right place for support - Tudiabetes.org has been extremely helpful to me and I’m sure it will be for you, too.
Yes, thank you for sharing your story…! Your story, is yet, another reminder of why we so strongly need to be our own advocates, research and learn as much as we can about ourselves and our conditions, and stand up for proper care. I am so glad you came to our community.
Your story makes me grateful for the way my doctor tested me for type 1 and after diagnosis, he sent me right to an endocrinologist. When I read other people’s struggles I realize how lucky I was.
I’m new to Tudiabetes.org myself but am already finding it so helpful! I, like you, was originally diagnosed wrong with Type 2 by my GP. But luckily, they sent me directly to an endocrinologist, and she told me no, you are Type 1. This was a shock because I had researched Type 2 and was as prepared as I could be to deal with that. Type 1 is a whole different thing. But the pump, and CGMS, are wonderful and have made diabetes much more manageable for me. I got on the pump less than a year after being diagnosed. Don’t let the fear of the infusion site needle get to you…it gets easier each time you do it until you won’t even flinch or notice it much anymore. I say this from 8 years experience using the pump. I’m sorry it took so long for them to figure out you were Type 1, but now you can move forward with proper treatment. And ask any questions you have here. The very friendly community will give you lots of insight from their experience. All the best to you!
Your story is just shocking! I am glad you are finally being treated “correctly”.
I am just amazed and angered at the sheer number of T1 folks on this and other forums who were mis-diagnosed as T2 and had to fight their doctors for a correct diagnosis.
Fair Winds,
Mike
Wow, thank God for that endo. Thanks for sharing your story.
I’m so glad you got on the pump. Christi is right-- you’ll get used to changing the infusion sets. It’s not fun, but it’s a lot easier than it used to be-- the needles are a lot smaller. What I do is take a few deep breaths and then insert the set while I’m exhaling, if that makes sense. Exhaling seems to ensure that my stomach muscles are relaxed, so I don’t feel anything.
welcome to TuD!!
Katie
What a familiar story! Welcome to TuDiabetes, lit.
Terry
“We’ll treat you for diabetes with Metformin, and if that doesn’t work…” So classic. Sheer #s of T2 drowns out the infrequent T1 and docs play dumb.
Welcome!
I know being new to diabetes can be kinda… scary, sometimes at least. I’m here if you have any questions or concerns 
I had the same thing happen to me…my dr. kept increasing my Metformin and it made me nauseous. Finally I was referred to an endo and YES, I am type 1 and now on the pump…all very scary but I am doing well on the pump. It just takes time to get used to it…
Thank you so much for all of your kind comments and warm welcomes. I’m busy as can be lately, but I’m trying to get back to everyone!