It can look like type 2 diabetes, but it’s an autoimmune disease that eventually requires insulin.
Receiving a diabetes diagnosis can be bittersweet. You may feel anxious and scared about what lies ahead and relieved knowing you’ll be connected with the right treatment. But what if the diagnosis isn’t spot on and the treatment doesn’t seem to be helping you in the long term? That’s what can happen for people with type 1.5 diabetes—a form of diabetes that’s sometimes overlooked or misidentified.
Clinically known as latent autoimmune diabetes in adults (LADA), this condition often looks a lot like type 2 diabetes, especially in its earlier stages. But in reality, it’s an autoimmune disease that eventually requires insulin, just like type 1 diabetes.
Because LADA usually appears in adulthood and develops gradually, many people with the condition are misdiagnosed with type 2 diabetes, which is a big problem that can delay the right treatment. Oral medications and lifestyle changes like diet and exercise that are typically prescribed to treat type 2 diabetes may not bring the improvements doctors expect to see, all the while the immune system continues to gradually attack cells in the pancreas that produce insulin. As a result, blood sugar isn’t in control and the body undergoes further harm.
Different types of diabetes require different treatment approaches, so getting the right diagnosis matters. Here’s what you should know about this condition, how it impacts the body, and why a proper diagnosis is so important.
To understand LADA, it’s helpful to understand how type 1 and type 2 diabetes work.
Type 1 diabetes is an autoimmune condition where the pancreas either makes very little insulin or no insulin because the immune system attacks important cells in the pancreas that produce insulin. Without insulin, blood sugar builds up in the bloodstream, often causing sharp spikes in blood sugar. People with this form of diabetes have to take insulin each day to survive. It can happen at any age, but typically develops in children or young adults.
“It’s an autoimmune condition where you have antibodies that attack the pancreatic beta cells— the cells that make insulin—and they destroy those cells,” Rozalina McCoy, MD, associate division chief for clinical research, Division of Endocrinology, Diabetes, and Nutrition at the University of Maryland School of Medicine tells SELF. “That is what causes insulin deficiency.”
Type 2 diabetes is a chronic condition where the body still produces insulin, but has trouble using it properly—this is known as insulin resistance and causes high blood sugar. “If your insulin doesn’t work as well, the glucose can’t get from the blood into the cells as efficiently, so blood sugar rises,” Dr. McCoy says. “This pathway is what leads to type 2 diabetes.”
Type 2 is way more common than type 1 diabetes and accounts for between 90% and 95% of people with diabetes. Some of the most common risk factors include having overweight, being physically active fewer than three times per week, being 45 or older, or having an immediate family member with the condition. Type 2 diabetes is usually managed with lifestyle changes and oral medications like Metformin that address the underlying insulin resistance, though some people eventually need insulin.
LADA is sometimes called type 1.5 diabetes because it shares features of both type 1 and type 2 diabetes. Similar to type 1 diabetes, LADA is an autoimmune condition where your immune system mistakenly attacks important cells in the pancreas that produce insulin. But while type 1 diabetes usually appears suddenly in kids or young adults, LADA develops more gradually and is typically diagnosed in people who are 30 or older.
In the early stages, people with LADA are able to make enough insulin to keep their blood sugar levels somewhat close to a normal range. This is where things can get a bit complicated. Because the body is still producing insulin in the early stages of LADA for at least 6 months following diagnosis, people with this condition are often misdiagnosed with type 2 diabetes and prescribed oral medications like metformin and lifestyle changes.
That’s a big problem, because when someone has LADA, their body’s ability to produce insulin declines, and over time, those medications stop working.
“They ultimately, at some point, progress to needing insulin, just like type 1,” Dr. McCoy says. “But it happens in adulthood and it's latent, meaning it's slower.”
If someone with LADA is misdiagnosed with type 2 diabetes, they don’t know they need insulin and are instead left taking medications and trying lifestyle changes that don’t actually address the issues going on in their body. This could result in uncontrolled high blood sugar, which can increase the risk for strokes, heart attacks, ketoacidosis (a life-threatening diabetes complication), and other serious issues, Wilson Sze, MD, an endocrinologist at Houston Methodist, tells SELF.
“If you don’t produce enough insulin yourself, having uncontrolled diabetes and having persistently high blood sugars can really cause a lot of issues,” Dr. Sze says.
Because LADA is an autoimmune condition that requires insulin therapy, many physicians actually view it as a subset of type 1 diabetes rather than as a completely separate type of diabetes. Dr. McCoy is among them, explaining that LADA is simply type 1 diabetes in adults that take longer to develop a need for insulin therapy.
“The more we test for this in adults, the more we understand about the fact that type 1 diabetes is a heterogeneous disease—it's not the same in everybody,” Dr. McCoy says. “Across all ages there's variability in how long the period is from getting antibodies to those antibodies destroying the pancreatic cells and developing diabetes.”
A type 2 diabetes diagnosis when someone actually has LADA can get in the way of proper treatment. Dr. Sze says that when people are in this scenario, they may go to their doctor saying that they’ve been working hard to do everything their doctor suggested to treat type 2 diabetes—like exercising more, eating a more nutritious diet, and taking prescribed oral medications—but they’re just not seeing results. To him, that’s a sign he should consider screening for LADA. “It's very easy for us to screen for type one or LADA,” he says. “It's just a blood test.”
To diagnose the condition, doctors typically start with fasting blood sugar, A1C, and glucose tolerance tests, all of which measure blood sugar levels and help confirm diabetes or prediabetes. Doctors also need to confirm the autoimmune response, which is evident through the presence of those autoantibodies that attack cells in the pancreas that we mentioned earlier.
Your endocrinologist will likely order blood tests that look for diabetes-related autoantibodies and they’ll also measure C-peptide levels, which indicate how much insulin the body is still making. If test results show low C-peptide levels and the presence of antibodies, there’s a good chance someone has LADA, not type 2 diabetes, Dr. Sze says.
“That's an indication that it's time to think outside the box and switch from oral medications or oral hypoglycemics to insulin therapy,” Dr. Sze says.
LADA can be easy to overlook because it develops later than life and often presents with the same signs as type 2 diabetes, including:
Dr. Sze and Dr. McCoy also look for some other telling signs: someone with LADA may have a family history of type 1 diabetes, a BMI that’s a bit lower than typically seen in patients with type 2 diabetes, and they may have uncontrolled blood sugar even though they’re working really hard on diet and lifestyle changes and taking oral medication for type 2 diabetes. These signs let the physician know that someone may have an autoimmune condition where the pancreas simply isn’t making enough insulin, Dr. Sze says.
“If somebody's presentation and history aren't consistent with type two diabetes, they should be checked for type one diabetes or LADA, because the treatments are so different,” Dr. McCoy says.
The exact approach to treating LADA varies depending when someone is diagnosed and how far along they are in the condition’s progression at that point. Your doctor may prescribe oral medication and lifestyle changes like physical activity and healthy eating if the pancreas is still producing insulin. But eventually, as the body’s ability to produce insulin declines, insulin therapy will be needed. The timeline can vary, but sometimes this takes years, Dr. McCoy says.
As the condition progresses, it’s important that your doctor monitors you regularly to determine when treatment with insulin is necessary. “At some point people with LADA will need insulin and we don't want to miss that,” Dr. McCoy adds.
When you’re living with diabetes, self-care takes on a whole new meaning. After all, you’re tending to a part of yourself that needs (and deserves) a great deal of attention. Self-care includes all the things you do to keep your blood sugar levels as balanced as possible, which can play a vital role in your overall health and happiness.
Even just a little mindfulness in your daily routine can help mitigate the stress of living with type 2 diabetes—or what many experts call “diabetes distress,” the Centers for Disease Control and Prevention (CDC) notes. This term refers to the unique challenges and emotions that people with diabetes may experience, from the rigorous treatment regimen, to dealing with a complex medical system, to the daunting financial burden. Feelings of isolation, frustration, discouragement, anxiety, burnout, and anger are all common manifestations of diabetes distress, Diana Licalzi, RD, a certified diabetes educator and the cofounder of Reversing T2D, tells SELF.
Diabetes distress may negatively impact your blood sugar levels, too, because it makes it harder to take good care of yourself, according to Stephanie L. Leung, PhD, the director of psychology at the Fleischer Institute for Diabetes and Metabolism at Montefiore Einstein and an assistant professor of endocrinology at the Albert Einstein College of Medicine in New York City. This can become a vicious cycle: Less-balanced blood sugars leave you feeling crappy, and ultimately even less able to engage in the self-care that supports your diabetes and overall well-being.
You can turn that vicious cycle into a virtuous one by practicing genuine self-care, and witnessing the positive downstream effects on your physical and mental well-being. In this way, “prioritizing self-care allows a person with type 2 diabetes to be in the best place possible for good health outcomes,” Dr. Leung explains. Not to mention, you’ll hopefully experience more peace, joy, and ease in your day-to-day life. Here are seven ways to get started.
If you’re feeling burnt out on the day-to-day of blood sugar management, “remind yourself why it is important to you to take care of your diabetes,” Dr. Leung recommends. It’s more helpful to focus on the positive with this approach: Think about the good stuff you want to enjoy, instead of the potential health complications you want to avoid. “Getting in touch with your values can be a powerful way to reinvigorate motivation,” she says.
She recommends asking yourself: “What do I gain from taking good care of my diabetes?” (Perhaps, as a journaling prompt.) What does feeling energized and being in a good mood allow you to do? Maybe it’s being active with your kids, fully engaging in the work that you love, feeling more confident traveling with friends, imagining being healthy enough to play with your future grandkids, or just feeling more comfortable in your body on a daily basis. Let whatever it is you desire to experience more of in life guide you when you’re feeling disengaged.
We all know regular exercise is an excellent form of self-care—and it provides even more bang for your buck when you have diabetes. “Engaging in physical activity benefits blood sugar, and can lead to better mood, sleep, and quality of life,” Licalzi says.1,2
Keep in mind that you don’t necessarily need to spend an hour in the gym every day to reap the rewards. Find something you enjoy—dancing, biking, yoga—and do a little bit of it as regularly as you can. “Even just a 15-minute walk after meals can have a significant impact on your blood sugar and mood,” Licalzi notes.3
Keeping your stress in check is integral to your mental health, but it also makes a difference in effectively managing your diabetes, because “chronic stress can lead to even higher blood sugar levels,” Dr. Leung explains.4 Activities that help you relax and enjoy yourself “aren’t frivolous,” she adds—they are actually key to living well with diabetes.
It might be something you traditionally associate with stress reduction, like meditation, yoga, or soothing breathwork exercises. Maybe it’s spending time in nature or cuddling up with your pet. It could also be something creative, like playing music or painting. Or maybe it’s a hobby like reading or playing a sport.
Whatever helps you chill out, treat it like an important lifestyle habit—meaning it deserves just as much dedication as eating a balanced breakfast. And, just so your stress-busting habit doesn’t feel, well, stressful, Dr. Leung advises starting small. “Start with just five minutes a few times a week and work your way up until you can establish a routine,” she says.
As with exercise, quality sleep is even more foundational to your well-being when you’re living with diabetes. One of the kindest things you can do for your mind and body is to set yourself up for success the next day by putting sleep first. If you’re well-rested, you’ll likely feel more clear-headed and motivated to take care of yourself during the day by making choices that support your diabetes care, like having the energy to exercise or choosing foods that are better for your blood sugar, according to the CDC.
Not only that, but sleep deprivation—usually defined as regularly getting fewer than seven hours a night for most adults—can impact hormones involved in glucose metabolism, Licalzi explains. For instance, lack of sleep can make your body more resistant to insulin, which means insulin (produced naturally or injected) is less effective, resulting in higher blood sugars.
Whenever you can, do your best to treat your sleep like the necessity it is, not a luxury. Focus on maintaining a consistent sleep schedule (like waking up and dozing off around the same times each day), practicing good sleep hygiene (like setting a cutoff time for scrolling on your phone), and ideally getting seven to nine hours of sleep a night. This, of course, can be easier said than done—especially if you work a shift job or have caregiving responsibilities, for example—but incorporating even a few soothing presleep habits into your routine as consistently as possible can help set the stage for deep rest.
Self-care can sometimes involve the people closest to you too. For instance, you can ask your friends, family, or partner for practical support as you adopt new lifestyle habits and get used to diabetes treatment. If they’re up for it, “enlist your loved ones to help you with diabetes-related tasks, from cooking, to having a gym buddy, to having someone who knows what to do if you have a hypoglycemic event,” Dr. Leung says.
This can also include stating what you don’t need and setting boundaries. “Don’t be afraid to request people not to hound you about your diabetes treatment regimen,” Dr. Leung says. If your spouse keeps getting on your case about, say, what you’re eating, you can gently remind them that it’s something you’re actively discussing with your doctor or dietitian, or explain to them how their comments make you feel and why it’s not helpful—and what could help support you in your journey instead.
Again, you don’t have to do this alone. Diabetes can be isolating and overwhelming—and finding connection with people like you is the antidote. Local and virtual communities for people with diabetes can help you feel seen, understood, and held, which in itself is deeply nourishing. “It can help you feel less alone,” Licalzi says.
Plus, working through your own challenges and toward your own diabetes goals with “support, accountability, and encouragement from others embarking on a similar journey” can even help you with making—and sticking to—lifestyle changes in the long run, Licalzi says. You also get to learn about what works for other people and be inspired by their progress.
You have plenty of options, including free support groups run by health care providers or people with diabetes, paid diabetes education or health coaching programs, and virtual communities on online forums and social media. Ask your doctor’s office about local support groups, check out the nonprofit Beyond Type 2’s virtual community, google for groups in your area, or search the American Diabetes Association’s support directory. The American Association of Diabetes Educators also has a great handout of ways to tap into the online diabetes community.
If you’re being tough on yourself for not exercising regularly or testing your blood sugar enough, try to cut yourself some slack, especially if your day-to-day life has felt stressful or chaotic recently. “Remember you are human,” Dr. Leung says. “If you’re not sticking to all parts of your diabetes self-management regimen 100% of the time, that’s okay. You are normal. Perfection is not realistic.”
Maintaining an unrealistic expectation of yourself is only going to lead you to feel more burnt out by your condition. Sometimes, the best thing you can do to take care of yourself is… allow yourself to not do all the things to take care of yourself all the time. This may look like skipping the gym and letting yourself rest on a day you’re feeling particularly wiped, or making the less blood sugar-friendly snack choice once in a while.
To practice giving yourself some grace, you can try a short self-compassion meditation technique or check out these tips about self-love and acceptance. You can also use Dr. Leung’s words as a mantra or positive affirmation when you catch yourself being tough on yourself: Eyes closed, hand on heart, deep breath, and tell yourself: “Perfection is not realistic.” Or “I’m doing the best I can.”
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