LADA Diabetes: My Misdiagnosis Story

This is the first installment of a two-part story about one woman’s experience with diabetes and her eventual diagnosis of LADA. Are you living with LADA? Join our upcoming LADA sessions and connect with other women who truly understand your experience.

When I was pregnant, my OBGYN told me I had gestational diabetes. He explained what that meant, but I was still confused. All I really understood was that I was supposed to eat foods lower in carbs and higher in protein and fiber. I thought, “Okay, I can do that. I should be eating healthier anyway, especially while I’m growing and developing this precious gift inside of me.”

Then I took a realistic look at my eating habits. I was a snacker, grazing all day on crackers, popcorn, and chips – all carbs. I drank a lot of sodas, and I looooved my candy – sour, sweet, fruity – all of it.

This was not going to be as easy as I thought, but I decided it was just the beginning of motherhood and taking care of my baby. My lunches and dinners already typically consisted of protein and veggies, but they were small because I was full from snacking all day. So I changed how I ate, focusing on smaller, more frequent meals built around balanced, whole foods. I started snack prepping, so I always had pre-portioned healthy snacks of veggies, fruits, nuts, etc. And it worked because my doctor told me my blood work looked good. When I gave birth to my daughter on January 15, 2007, my blood glucose levels stabilized. Until my second pregnancy, when I was again diagnosed with gestational diabetes. I didn’t think too much about it, because being pregnant with gestational diabetes was all I knew. I went back to the small, frequent meals and always had my pre-portioned snacks with me. I gave birth to my second daughter on March 5, 2009, and again, my blood glucose levels seemed to be back on track. I was busy living my best life, raising my daughters, and diabetes never crossed my mind again – until it did.

On December 17, 2012, I took the day off from work to make a gingerbread house with my daughter’s class. Afterward, I went to my gynecologist for my annual well-woman exam. When he told me there was a lot of glucose in my urine, I said it was because I had built (and eaten) a gingerbread house that morning. He asked me all these questions. Did I feel tired (yeah, I’m a mom of two toddlers, of course I’m tired), did I often feel thirsty (ALL the time – how did he know), did I need to urinate a lot (of course I did, I was constantly guzzling water) and how my vision was (I was irritated that my new contact prescription was wrong because my vision was still not sharp or crisp).

Then he told me he was admitting me to the hospital because I had diabetes. What?! I did not have time for that. I had work to catch up on, and Christmas was one week away – there wasn’t time to slow down, and certainly not to be in the hospital. And besides, what was he talking about when he said I had diabetes? Did I have gestational diabetes again? Was he trying to tell me I was pregnant? No, he told me my blood glucose was in the 900s, and he was admitting me to the hospital. I protested some more, thinking about all the tasks on my never-ending “to-do” list, where caring for myself was at the bottom. 

He said, “Jen, this is very dangerous. You could slip into a coma or have a seizure and drive off the bridge with your girls in the car”. That registered. I was not going to do anything that would hurt my girls. Even though I didn’t really know what he was talking about, I knew I couldn’t brush this off as something I would eventually get to later, after I was done taking care of everyone and everything else. I had to make myself better so I could continue motherhood.

While in the hospital, my sister, a pediatric oncology nurse, called and asked what type of diabetes I had. I did not know there were different types, so I asked the endocrinologist on rotation. He told me that children were diagnosed with type 1 diabetes, and since I was 39 years old, I had type 2 diabetes. I continued to see that doctor every three months for follow-ups and bloodwork. 

At every appointment, he would tell me my A1C was too high. He asked why I did not eat better, count carbs, and exercise more. My doctor said I was lying and non-compliant and said if I didn’t manage my diabetes, I wouldn’t live to see my daughters grow up. The worst was when he asked why I didn’t think my daughters were worth it, and then he looked at me and told me my daughters deserved a better mother. Those words still haunt me. I think about that appointment and go right back to feeling everything I felt at that moment – the heaviness of the shame, the overwhelming fear, and the defeat. It still makes me cry. But there is a new emotion I have added – anger.

One year after being diagnosed with type 2, I returned to my gynecologist for my annual exam. He asked how my blood glucose had been, and  I told him that my A1C was still close to 12. I crumbled under the feelings of shame and confusion, and was sobbing, telling him how alone I felt trying to navigate this. No matter how hard I tried, I just could not get it right.

Then he asked me about my insulin dosage. What insulin dosage? He said I should be on insulin since I have type 1 diabetes. He knew I had type 1 a year ago and did not understand why the endocrinologist would tell me I had type 2. Looking back now, I understand there was more to my diagnosis than anyone had realized – I actually had Latent Autoimmune Diabetes in Adults (LADA).

He immediately called my endocrinologist and told him to run the antibody test on me ASAP. With the test results, I was diagnosed with type 1 diabetes. The endocrinologist told me he hadn’t run the test because of my age at diagnosis, and there was no way I could have had type 1 since I was an adult. I asked him about the effects of taking Metformin for the past year, instead of insulin. He didn’t know. I went back to his words from that previous appointment (they were so easy to remember because I had been replaying them again constantly in my mind). I told him he should be a better endocrinologist, or his patients were not going to be alive for him to continue to see. Then I asked him why he didn’t think his patients were worth it. Right before I left, I looked at him and told him his patients deserved a better endocrinologist. Then I fired him, and it felt good. The best I had ever felt when I was at his office.

That day began a new health journey for me. Read more in my next post.