Latent autoimmune diabetes of adults, or LADA, for short, is a relatively rare form of diabetes. It is often called type 1.5 diabetes.

It can sometimes be misdiagnosed as type 2 diabetes because many people do not require insulin therapy in the short term after diagnosis. It is also only diagnosed in adulthood.

We sat down with Billy Rigby, a 41-year-old living in Pennsylvania who has officially lived with LADA diabetes for the past two years. In 2018, he was told he had type 2 diabetes.

Billy Rigby smiling into the camera

Key Points:

  • Billy Rigby was initially misdiagnosed with type 2 diabetes in 2018, a common mistake due to LADA often not requiring insulin until later stages.
  • After experiencing severe symptoms and a medical emergency, Rigby’s correct diagnosis of LADA was confirmed through genetic testing.
  • Following his diagnosis, he adjusted to more stringent management of his condition, including insulin injections and careful diet monitoring.

This form of diabetes shares characteristics of both type 1 and type 2 diabetes. Between 2 to 12 percent of all cases of diabetes are LADA, many of which are initially misdiagnosed as type 2 diabetes. 

Read more in: LADA Diabetes (Latent Autoimmune Diabetes in Adults).

Table of Contents

What situation led up to the initial diagnosis of type 2?

Rigby was initially diagnosed with type 2 diabetes in 2018. He remembers it this way: 

“Emotionally, I was devastated. At first, I was confused and hurt. I felt like I did everything right, I was losing weight, I ate right, and I also was very active. I blamed myself at first, asking what I did wrong. What did I do to make this happen?” 

He continues,

“After discussing it with my health team I learned it was just genetics, unfortunately, it wasn’t anything I did. Call it genetics, call it bad luck, but it wasn’t my fault. I ended up losing my job because I physically could not do it. With all the muscle and fat my body lost, I just could not do the work anymore. It was definitely hard at first.” 

Were there any warning signs you experienced that something wasn’t right? 

Rigby says that after living with a type 2 diabetes diagnosis for almost four years, he knew something wasn’t right.

“There were so many signs that something was wrong, yet I didn’t know they were signs at first. That was the scary part because I was so active that summer I thought I was just losing weight.” 

“The urination and constant thirst are when I was wondering if something was wrong. And I started craving milk. I am usually not a big milk drinker, but that summer it became something that felt good to drink.” 

He says,

“The weight loss toward the end of summer 2022 started to become concerning. I was also having problems physically. Things that were easily lifted before were now giving me problems. I was getting tired from just standing around. I made an appointment with my PCP but ended up in the ICU before I saw her.” 

“My vision was blurry, I was extremely sick. I couldn’t even hold down Gatorade or water. My glucose was at 792 mg/dL when they admitted me. I don’t remember much of it, other than everything was blurry and the lights were super bright.” 

He continues,

“I woke up a day and a half later. I was told that I was in DKA [diabetic ketoacidosis] and that I [had LADA]. I had no idea where I was, the last thing I remembered was being in Ohio driving to our next job site.”

How did you discover that you had been misdiagnosed?

As time progressed prior to his ICU visit, Rigby’s blood sugars were increasingly unable to be managed with diet and exercise alone. He says,

“Waking up in an out-of-state ICU was pretty much how I discovered it. We took a genetic test, and that’s when it was made official. My insulin-making cells have slowly been taken out by my immune system, making me LADA.” 

In addition to adding insulin injections to his routine, he had to be stricter about carbohydrate counting and measuring what he was eating as someone with LADA. 

According to Rigby, it was a major adjustment. 

What challenges did you encounter in the healthcare system?

Rigby says navigating the healthcare system has been hard.

“A lot more challenges than I ever expected. From getting my insulin pumps and insulin on time, to certain things not being covered in time. There have been times I have gone a day or two without my insulin pump or my insulin because my insurance wouldn’t cover it.” 

He continues,

“Living with LADA and on all of the medications and devices is a lot harder than how I lived with type 2 diabetes, where I just managed it with diet and exercise.” 

Are there differences in management and treatment after getting the correct diagnosis? 

Rigby says,

“I am more aware of the food I am eating, even more so than when I was diagnosed as a type 2. I am counting more carbs, doing certain exercises, and being more particular about what I am willing to waste my insulin on. Meaning, sometimes ice cream isn’t worth it (but sometimes it is!).” 

What would you recommend to others who think they might have been similarly misdiagnosed?

Rigby says that you need to empower yourself if you feel like something is wrong.

“Reach out to your PCP and let them know that you feel like you might have other issues. My PCP (who is fantastic, I love her) didn’t know about the genetic test that can tell you if you are LADA. She knows now, but it wasn’t something in her wheelhouse at the time.”

He continues,

“They say there are only two ways to discover if you are LADA and that’s with the genetic blood test or unfortunately, as in my case, having a medical emergency. You know your body, you know when it’s feeling different. By the time we realized and made an appointment we were too late.”

Do you have any advice for healthcare professionals?

Rigby says,

“Pay attention to the new research that is coming out now, if you have diabetic patients it’s in everyone’s best interests for you to know what can help your patients achieve their best quality of care.”

“And just be understanding. My healthcare team has gone above and beyond to show that they understand what I am going through and also show empathy and care. Take care of your T2D patients and realize that in their 30s and 40s, it might actually be LADA.” 

Finally, he says,

“If you are diagnosed [with] LADA, your life will change, but it will not be over. You can do this. This isn’t going to be easy, but you can do this! We all feel scared at diagnosis. There are resources for you out there and a great online community. We know what you are going through, we have been there and are still there. You are not alone!” 

Final thoughts

Billy Rigby’s journey with LADA highlights a critical aspect of diabetes care — the importance of accurate diagnosis. Misdiagnosis can lead to years of inappropriate treatment and unnecessary complications. 

For people experiencing symptoms unexplained by their current diagnosis, his story underscores the value of self-advocacy. It’s vital to seek further evaluation if something feels off.

With the right diagnosis and treatment plan, people with any type of diabetes can lead a fulfilling life, despite the hurdles they may initially face.