Starting Over

For almost 10 years, I've been told different things about my diabetes. I was diagnosed as a type 2, despite my young age, "normal" BMI, very high A1c, and no family history of type 2.

I was put on oral meds (metformin), which did nothing except make me incredibly sick. I vomited almost everyday while taking it, and my blood sugar remained high. This pattern continued for six months, with a few ER trips for DKA-type episodes in between. I changed doctors twice, but neither thought to test me for type 1. In fact, one even said that such testing would be stupid because if I was a type 1 and not taking insulin, I would be dead within a few days.

Like a good little patient, I believed them. I went to the required CDE classes, learning all about how my poor eating habits and lack of exercise caused my diabetes. I was the youngest and smallest person in the group.

After one year of taking metformin and losing 40 pounds (yes, 40!), I made an appointment with a new endo practice. I was immediately placed on insulin, which was an entirely new experience for a reformed needle-phobe. My doctor told me that I probably had type 1.5, but she did no testing to confirm. Since my treatment would be insulin, it didn't really matter what type I had (or so I thought).

After many years of MDIs, I decided to make the transition to insulin pump therapy. My endo at that time was a proponent of Minimed, so I went with their Paradigm 722pump. Eventually, I decided to ditch my doctor (she treated me like a child - threatening to withhold pump supply prescriptions if I changed any pump settings myself), and I found a new endo.

I began seeing Dr. S. about a year and a half ago. Our relationship started off well. He was more interested in my opinions and feedback than any doctor I'd ever met. He encouraged me to adjust my basals and worked with me to get a Minimed CGM.

When the subject of my "type" came up, I told him that I had never received a definitive answer. He ordered a c-peptide test, which came back low. Despite this, he decided to classify me as a type 2. I know why he did this. In the years since I began taking insulin, my weight has crept up to its now "obese" BMI. There are some underlying reasons for the most recent weight gain, but they're not really relevant to this issue.

Flash forward to last month. After using the Minimed CGM for 18 months, I decided that I'd had enough of painful insertions, bleeding, and sensor errors. I called DexCom, requested and completed the materials to get approval, and waited for my new system. I couldn't have imagined what happened next.

When Dr. S. sent the Letter of Medical Necessity, he classified me as a type 2 diabetic. He did this in spite of the evidence to suggest otherwise (lack of insulin resistance, low c-peptide, etc.). He also told the DexCom folks that I expressed concern over the cost of supplies as a type 2. While we did have a hypothetical discussion about the need to know what type I am so that insurance would cover my supplies, it wasn't with the understanding that I was a type 2. His statement insinuated that I was trying to pass myself off as a type 1 so that I could get "stuff."

Naturally, as a type 2, insurance is reluctant to pay for high-ticket items like pumps and CGMs for me. I immediately sent an email to Dr. S. to find out why he'd told DexCom such a thing. His response was that he "really doesn't think I'm a type 2." He ordered antibody testing to be sure, but he felt confident that his diagnosis (type 2) was correct.

I received the following email from Dr. S. last week:

" . . . labs showed a positive GAD antibody. In addition, with a fasting glucose of 146, the c-peptide was low . . . This is consistent with Latent Autoimmune Diabetes of the Adult, a form of Type 1 DM. I was not sure before, but it is clear now that you are a Type 1 diabetic."

To say I feel vindicated is such an understatement. I feel like I had to fight for this diagnosis for one reason: my weight. Doctors really need to step out of the box when diagnosing patients. Yes, fat people do get type 1 diabetes.