June 24, 2020
Type 2 diabetes to LADA: story of a diagnosis
Living with one type of diabetes and finding out years later that you have another can take an emotional toll.
By Phyllisa Deroze, Mark Molitch
When we talk about diabetes, we generally refer to the three main types – type 1, type 2, gestational – that account for the majority of the more than 460 million people currently affected by the condition across the world. The reality is much more complex. Many subgroups of diabetes exist and continue to be discovered. Similarities between the different types can make an accurate diagnosis challenging.
In this article, we feature the story of Phyllisa Deroze, a woman who was diagnosed with type 2 diabetes in 2011 and recently discovered that she was living with a less common form of type 1 diabetes – Latent Autoimmune Diabetes in Adults, or LADA. In a commentary, Dr. Mark Molitch, Professor Emeritus at Northwestern University Feinberg School of Medicine, provides his professional insight on LADA and some of the other subgroups of diabetes that we currently know about.
When I was 30 years old, I moved to a new city and started working in my dream job as a university professor. At the time, I felt like my life couldn’t get any better. However, in January 2011, during the second semester of classes, I started feeling fatigued and began drinking large amounts of water to quench the overpowering thirst I had. Naturally, the increase in fluids led to more trips to the toilet. Since I had a routine of working out five days a week, the weight loss didn’t concern me until it increased to 2lbs (1kg) a day for an entire week. That’s when I knew that I needed to see a doctor. I was told that my electrolytes were imbalanced and drinking sports drinks should solve the problem.
On Valentine’s Day, I passed out in my bathtub. I was living alone and terrified. When I went to the emergency room the next day, I was hospitalised for six days. During my stay, I was diagnosed with diabetes, given pamphlets on both type 1 and type 2 diabetes and told that I would receive my lab results after I was discharged. I was instructed to follow up with the assigned Endocrinologist and he diagnosed me with type 2 diabetes. I’ve managed type 2 diabetes since then.
In November 2018, I gave a workshop to a group of physicians from the IDF Middle-East and North-Africa (MENA) region. After sharing my diagnosis story as a part of the lecture, one of the audience members asked if I had been checked for Latent Autoimmune Diabetes in Adults (LADA) because my diagnosis story didn’t sound like that of a person with type 2 diabetes. They proceeded to add that my age, lack of prediabetes, and the fact that I was the only person in my family with diabetes was enough information to run tests to rule out LADA. I replied that I had heard of type 1.5 diabetes but didn’t know much about it and that I felt that at least one of the four endocrinologists who had looked after me over the previous eight years would have told me. During the lunch break, one of the physicians pulled me to one side and told me that I needed to do everything in my power to find out if I had LADA and not to stop until I got an answer.
A week later, I scheduled an appointment with my endocrinologist and asked to be tested for type 1 antibodies. She seemed perplexed and asked why. I explained what happened at the workshop. She reviewed my chart and concluded that there was no need to run any additional tests. For her, it was unnecessary because my HbA1C results revealed that I had type 2 diabetes. At my next visit three months later, I asked if she could check to see if I had ever been tested for antibodies. She scrolled through my files on her computer screen and said that I hadn’t had those tests done. I asked again to have them. She refused. Three months later, I saw a different endocrinologist at the same clinic and asked to be tested for the GAD 65 antibody. He scanned my chart and also concluded that there was no need for me to have the test.
I felt that at least one of the four endocrinologists who had looked after me over the previous eight years would have told me.
During my summer vacation that year, I became very ill and my blood glucose levels remained high. As a person with type 2 diabetes, I only had oral medication and exercise to reduce my blood glucose. Neither were working. I didn’t have insulin, so I restricted my food intake significantly. I lost roughly 20lbs (10kg) in six weeks.
When I returned home from vacation, I scheduled an appointment with my OBGYN and asked if she would run the GAD 65 antibody test. She was hesitant because she said that that wasn’t her speciality, but after I explained the situation, she agreed to run the test. Within ten days, the results came back and I had an extremely high number of antibodies. My OBGYN told me to take the results to my endocrinologist and I did so the next day. After seeing the results, she ran a number of other tests, including c-peptide, which hadn’t been tested either. On September 11, 2019, I was correctly diagnosed with type 1 diabetes after being misdiagnosed with type 2 diabetes.
I’m one of the roughly 25% of adults diagnosed with diabetes to have LADA (also known as type 1.5). Because we don’t require insulin at the onset of our diagnosis, we’re often misdiagnosed with type 2 diabetes. In my case, I was misdiagnosed for eight long years. These past few months have been emotional, but I hope that my story will help bring awareness so that no one else will have to live through the same experience.
Dr. Mark Molitch
We generally think of people with diabetes as having type 1 or type 2 but, in fact, things are more complex than that. Type 1 diabetes accounts for about 5% of people with diabetes and is thought to be an “autoimmune” disorder. The body’s immune system destroys the pancreatic islet cells that produce insulin. Type 2 diabetes accounts for most of the remaining people with diabetes and is thought to be related to both resistance to the action of insulin as well as an inability of the pancreas to overcome that insulin resistance by making more insulin. Therefore, there is a relative insulin insufficiency. However, these two types are really large baskets for many subgroups that continue to be discovered.
Phyllisa was found to have Latent Autoimmune Diabetes in Adults (LADA). People with this condition initially behave as if they have type 2 diabetes but are then found to have high amounts of antibodies in their blood, which indicates that they have, in fact, “autoimmune” type 1 diabetes. LADA is thought to be present in up to 12% of adults with diabetes but this proportion may be as high as 25% of people diagnosed with diabetes under the age of 35, as she indicates. The autoimmune process that destroys the islet cells in the pancreas is much milder than in typical type 1 diabetes. This allows enough insulin to continue to be produced for many years, allowing treatment with the usual oral medications used for type 2 diabetes.
There is also a component of insulin resistance in people with LADA, although not as much as occurs in the typical person with type 2 diabetes. From a prognosis and treatment standpoint, there are no specific differences in current recommendations for LADA compared to type 2 diabetes. Loss of insulin production by the islet cells with a need to add or switch to insulin regimens occurs earlier in people with LADA compared to those with type 2 diabetes. However, people concerned and their care providers are always looking for a worsening of blood glucose control and so such a change to insulin is not really different for people with LADA compared to those with type 2 diabetes.
In LADA, the autoimmune process that destroys the islet cells in the pancreas is much milder than in typical type 1 diabetes.
Another uncommon type of diabetes in adults that can cause confusion is Ketosis-Prone Diabetes (KPD). People with KPD present in diabetic ketoacidosis (DKA), which is common in type 1 diabetes. However, for the rest, people with KPD have what appears to be type 2 diabetes and are usually obese. They have no evidence of autoimmune disorders, as measured by blood antibody tests, such as occurs with type 1 diabetes. When they present, their insulin production is very low but after treatment of the DKA, their insulin production recovers and they can often stop insulin treatment and be treated with diet and oral agents for many years. Most people with KPD that have been described have been African-American but the condition has also been found in other populations. Most have a strong family history of this type of diabetes and it occurs more commonly in men than women. Over time, many will develop a need for insulin treatment, similar to people with more typical type 2 diabetes. Why people with KPD develop DKA is still not known. The important point for such people is to recognize this entity in those who present with DKA, so as to be able to gradually stop insulin treatment if possible. However, careful follow-up is needed so that insulin can be administered again if necessary.
Phyllisa Deroze is a prominent online diabetes advocate and a professor of American Literature with research interests in Drama, Feminism, Disability Studies, and Medical Humanities. She is a member of the IDF Blue Circle Voices network.
Dr. Mark Molitch is Professor Emeritus in the Division of Endocrinology, Metabolism & Molecular Medicine, Department of Medicine, at Northwestern University Feinberg School of Medicine