Potential autoimmune diabetes in adults, or LADA, is, in short, a relatively rare diabetes. It is often referred to as type 1.5 diabetes.
Many people may be misdiagnosed as type 2 diabetes because they do not require insulin therapy in the short term after diagnosis. It is also diagnosed only during adulthood.
We sat with 41-year-old Billy Rigby, who lives in Pennsylvania, who has officially lived with Ladha diabetes for the past two years. In 2018 he was told he had type 2 diabetes.
This form of diabetes shares the properties of both type 1 and type 2 diabetes. 2-12% of all cases of diabetes are LADA, many of which are initially misdiagnosed as type 2 diabetes.
read more: Ladha Diabetes (Potential Autoimmune Diabetes in Adults).
What situation led to the initial diagnosis of Type 2?
Rigby was initially diagnosed with type 2 diabetes in 2018. He remembers 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 was very active too. At first I blamed myself for asking myself what I was wrong. What did I do to make this happen?”
He continues,
“After discussing with my health team, I learned that it was just genetics. Unfortunately, it wasn’t what I did. I call it genetics and call it bad luck, but it wasn’t my fault. I couldn’t do it physically, so I ended up losing my job. With all the muscle and fat I lost my body, I couldn’t do it anymore. It was definitely tough at first.”
Were there any warning signs that something was wrong?
Rigby says he knew something was wrong after living with a type 2 diabetes diagnosis for almost four years.
“There were so many signs because something was wrong, but at first I didn’t know it was a sign. It was a scary part because the summer was so active.
“The urination and constant thirst were when I thought something was wrong, and then I began to crave milk. I’m not a normal drinker of milk, but that summer became something I felt was good to drink.”
He says,
“Weight loss began to be concerns towards the end of summer 2022. I was physically having problems too. Something that was easily lifted up before was giving me problems. I was tired of just standing there. I booked with the PCP, but finished in the ICU before I saw her.”
“My vision was blurry. I was very sick. I couldn’t even push Gatorade or water. When they admitted me, my glucose was 792 mg/dl. I don’t remember much. Everything was blurry and the lights were very bright.”
He continues,
“I woke up a day and a half later. I was told I was in DKA (diabetic ketoacidosis) and I was (had a ladder). I had no idea where I was. The last thing I remember was driving to my next job site in Ohio.”
How did you discover that you were misdiagnosed?
As time progressed prior to ICU visits, Rigby’s blood sugar levels could no longer be managed through diet and exercise alone. He says,
“Walking up in an out-of-state ICU was pretty much the same as how I discovered it. We had a genetic test, and when it became official, my insulin-making cells were slowly removed by my immune system and made me a ladder.”
In addition to adding an insulin injection to his routine, he had to count carbohydrate counts and be more strict about measuring what he was eating as someone in the ladha.
According to Rigby, it was a big adjustment.
What challenges have you encountered with the healthcare system?
Rigby says it was difficult to navigate the healthcare system.
“There are far more challenges than I thought. From getting my insulin pump and insulin on time to certain things that aren’t covered in time. Insurance doesn’t cover it, so I’ve been there for a day or two without an insulin pump or insulin.”
He continues,
“Living with LADA and all the medications and devices is much more difficult than the way I lived with Type 2 diabetes, where I managed it with diet and exercise.”
Is there a difference between management and treatment after receiving the correct diagnosis?
Rigby says,
“I know better about the food I eat. I know even more than when I was diagnosed with Type 2. I count more carbs, do certain exercises, and explain more about trying to waste insulin. So, sometimes ice cream isn’t worth it (but sometimes it is!).
What would you recommend to others who you think may have been misdiagnosed as well?
Rigby says that if you feel something is wrong, you need to empower yourself.
“Reach out to the PCP and let me know you feel there are other issues. My PCP (it’s great, I love her) didn’t know about genetic tests that could tell you if you were a ladha or not. She knows now, but that wasn’t something in the wheelhouse at the time.”
He continues,
“They say there are only two ways to discover if you’re a ladha. It’s a genetic blood test or, unfortunately, like in my case, you have a medical emergency. You know your body, you know that it feels different. By the time we made it happen and made an appointment, we were too late.”
Do you have any advice from a medical professional?
Rigby says,
“If you have a diabetic patient, it is in everyone’s best interest to know if it helps them achieve the best care.”
“And just understand. My healthcare team shows that I understand what I’m going through, empathy and care. Take care of T2D patients and realize that in their 30s and 40s it may actually be LADA.”
Finally, he says
“If you are diagnosed with Radha, your life will change, but it won’t end. You can do this. This is not easy, but you can do this! We all feel scared of the diagnosis. We have resources and a great online community for you. We know what you are going through, we are there and still there. You are not alone!”
Final thoughts
Billy Rigby’s journey with Radha highlights the important aspects of diabetes care: the importance of accurate diagnosis. Misdiagnosis can lead to years of inappropriate treatment and unnecessary complications.
For those experiencing symptoms that are not explained in the current diagnosis, his story underscores the value of self-advocacy. If something is felt, it is important to seek further evaluation.
With proper diagnosis and treatment planning, people with diabetes of all kinds can live a fulfilling life despite the hurdles they may face first.
