LADA: The Most Misdiagnosed Form of Diabetes
Dr. Steve Edelman and endocrinologist Dr. Schafer Boeder discuss latent autoimmune diabetes in adults—a form of type 1 diabetes that is misdiagnosed about 40% of the time.
Have you or someone you know been diagnosed with type 2 diabetes, only to discover later it was actually type 1? You’re not alone.
In this episode of the TCOYD Podcast, Dr. Steve Edelman is joined by Dr. Schaefer Boeder, endocrinologist, Medical Director of Paradigm Research, Associate Professor at UCSD, for an eye-opening discussion about LADA (Latent Autoimmune Diabetes in Adults)—one of the most commonly misdiagnosed conditions in diabetes. Together, they explain why so many adults are initially misdiagnosed with type 2 diabetes despite the warning signs that should raise suspicion for LADA, and why getting the correct diagnosis can dramatically change treatment and long-term outcomes.
The conversation explores how LADA differs from both classic type 1 and type 2 diabetes, why the autoimmune process develops more slowly, and when antibody testing should be considered. Dr. Edelman and Dr. Boeder also discuss the importance of preserving beta cell function, the role of continuous glucose monitoring, advances in disease-modifying therapies, and why there has never been a more exciting time for research in adults who developed type 1 diabetes later in life. Whether you’ve been diagnosed with LADA, care for someone who has, or simply want to better understand adult-onset autoimmune diabetes, this episode provides practical guidance and hope for more accurate diagnoses in the future.
Latent autoimmune diabetes in adults (LADA) by the numbers
About 40%...
Of people eventually diagnosed with LADA were given a different diabetes diagnosis first (typically type 2 diabetes).
60%...
Of newly diagnosed type 1 diabetes cases occur in people over the age of 20.
About 90%...
Of people with LADA test positive for the glutamic acid decarboxylase (GAD) antibody, though no single test is conclusive on its own.
15 Fold...
Increase in the development of T1D if a family member also has T1D.
~20%...
Of beta cells, the insulin-producing cells in the pancreas, are still working at the moment a type 1 diagnosis is made.
LISTEN TO THE EPISODE
Did this situation happen to you? How long did it take for the doctor to make the correct diagnosis? Let us know in the comments below!
Supported by an unrestricted educational grant from Mannkind Corporation.
I was diagnosed with Type 2 at age 53. I’d been diagnosed with Hashimoto Hypothyroidism for about 9 years prior to that. At time of my type 2 diagnosis, I was also diagnosed with lichens sclerosis which is another autoimmune condition. I did not take any type 2 treatments as I was active, ate healthy and felt like I could manage it. I went 9 years (2010-2019) keeping my A1c’s between 6.3-6.7. In 2019 I went for my annual physical and my FBS was 348 and my A1c was 14.1. I was told I was being non-compliant, had refused meds for my Type 2 treatment and now would need to start taking insulin. I was told to make an appointment for the following week and if I developed any vomiting to go to the ER. At my follow-up appointment (different MD), I was given Basaglar and told to take 10 units every evening and adjust the dose by 2 units depending upon my FBS using a glucometer. I requested antibody testing as I had other autoimmune conditions and was told my insurance would’t cover it as I’d had type 2 for several years. I said I would pay for it if it wasn’t covered. The MD also said I should contact an Endocrinologist since I was so uncontrolled. I was lucky in that I was seen by the Endocrinologist about 2 weeks later. She looked at the labs that she was given and continued discussing my Type 2 treatment plan. I finally asked if she had the results of my antibody testing. She didn’t but she had her staff contact the lab. I waited another 30+ minutes and she came back into the room and said…”This changes everything. You have Type 1 diabetes”. It’s been 7 years since getting the correct diagnosis. I’m still MDI with basal and meal time insulin. My last c-peptide was 0.48 (fasting glucose was 97). A1c’s have been 5.4-5.7 for 6 1/2 years. The only thing my Primary care doctor was right about is that I needed Insulin but not because I was non-compliant.
Thank You for all that TCOYD does for the diabetes community. I’ve learned so much from your videos/resources/website. Someday I hope to make it to the One Conference.
Thank you for sharing your story, and good for you for being persistent! It’s unfortunate that so many doctors to this day are STILL so uninformed about adult-onset type 1 diabetes. Thank goodness you finally got the right diagnosis, and we hope you can come to a ONE conference too!!
Thank you for this excellent podcast. I love your podcasts and posts. I am a fan! Forty years ago I was diagnosed with GDM at 20 weeks gestation in my 3rd pregnancy after glucose was found in my urine during a regular prenatal check. I had been tired and urinating often, but assumed this was related to have 2 young children and being pregnant! I had a random glucose — which was around 200. I then had a 50 gm glucose screen which was 300 after 2 hours. My 2 previous babies were normal weight : 7.5 lb and 6 lb, 4 oz. I had difficulty gaining weight and needed insulin at 30 weeks despite being uber compliant at a time when “no sugar” was allowed! I gave birth to a healthy baby weighing 8 lb 10 oz. Around a year after my 3rd baby was born, I started having some symptoms and recurrent yeast infections. My family doctor ordered blood work, and my glucose was around 15 mmol (270 – I am in Canada and we had just switched to mmol/L!) I was seen by an endocrinologist, who told me that I was too old to need insulin, and that I had “mild T2” He said that I didn’t even need to test my BG. I did so anyway, as I was not convinced, and was a bit obsessive after my experience in pregnancy. I was prescribed a very low dose (5mg) of glyburide, and must have had a honeymoon. After a couple of months, I noticed my BG increasing and I started to have symptoms– thirst, urination…The endocrinologist increased the dose, and after several months of increasing, I was on the max dose of 20mg. I was told to give it another 2 weeks. By now I was losing weight, peeing, drinking and felt terrible. It was my family doctor who insisted that I recontact the endocrinologist – as I had lots of glucose and ketones in my urine. My endocrinologist happened to be away, but thankfully his locum acted quickly and started me on insulin (N & R in those days with brand new 28g syringes!). I remember it was like a miracle when that first dose finally started to work, and I could think again! The original endocrinologist was puzzled, as he still believed that I had T2 and couldn’t explain why I had such a sudden decompensation! It was only when I moved across the country a few months later, and was seen by yet another endocrinologist in my new city, when I was told that I had T1! I developed hashimoto’s a few years later. There is no history of T1D in my family, but there is a history of T2D. I was not really overweight, although I needed to shed a few baby pounds! I am happy to say that after close to 40 years of living with T1D, I have no complications, have been using a pump for 27 years and turned my experience into becoming a diabetes educator – with a focus on insulin pump therapy. Please keep turning out these great podcasts! I hope to attend the One Conference One of these days! Now I am on to your podcast about menopause and diabetes! Thank you for all you do! Evelyne in Canada (which is NOT the 51st state!)
Haha! Thanks Evelyne! What a story…and so cool that you are now helping others learn more about their diabetes and insulin pumps! Hope to see you at a ONE conference soon! 🙂
It wasn’t the 3 endos, 2 we’re department heads, that we stumbled into – hopefully – the right treatment. Using my Dad’s meter, I’ve diagnosed myself with diabetes. My Grandfather, Dad and I, all very athletic, lower side of normal weight, excellent diet, got diabetes around 50 years old. No cholesterol, high blood pressure, no syndromes or any other illnesses. Started on type 2 meds, they “worked” for a while, then they quit! I knew my doctor socially, he knew my life style. We started on Lantus, eventually adding Novolog. Good control for 20+ years. Then the complications started:(
Wish that I lived in San Diego and had both of you as my doctors!
Sounds like you had some detective work to do in the early days, but it’s great that you were able to find a treatment that gave you 20+ years of good control. We’re sorry to hear that complications entered the picture…hope you are able to keep them at bay. Thank you for your comment and the kind words! 😊
I was diagnosed at age 6 with “diabetes” (before type 1 and 2 or even juvenile and adult onset had been labeled as such). This was 1957. Insulin had been discovered the year before my father was born. I was 57 years old when I was invited to take part in a study at Joslin Diabetes Center in Boston called “The 50-year Medalist Study.” That was where it was discovered I was still making a lot more insulin than was supposed to be possible. Upon further study, it was discovered I had a mutation on my INS gene. No autoantibodies, no insulin resistance; in fact, very insulin sensitive. So, not MODY or LADA, but definitely monogenic. Treated as T1D my whole life. Take metformin and insulin now. Took a DPP4 (Januvia) as part of a spinoff study to see if I could stop taking exogenous insulin (got down to 5 units for TDD). Then took an SGLT2 inhibitor (Farxiga) and ended up in DKA with kidney injury. All that to say, I was not who I thought I was for over 50 years, diabetes-wise. Brenda Martinez
There are now over 14 types of monogenic diabetes, and most of the time, people are not diagnosed right away or at all. I’m glad you know now, and I’m glad that you shared your story.
I was going through menopause when I felt lousy and saw my GYN Dr. He said “lets stop the menopause for awhile and put me on birth control pills!!! I started taking them but still felt lousy and vision got blurry even with glasses. I called the Dr. office and they wanted me to take a glucose tolerance test. My husband was a juvenile diabetic and said I’ll just test you on my meter. The meter said HIGH, so he called his endo who put me on insulin over the phone in a small amount. I have been on insulin ever since 1998; except when I tried to take pills instead that didn’t work at all. The endo became my Dr. for diabetes and called me a (1 and 1/2). Now I am called a LADA LADY. 4 years after my diagnosis, our 13 year old son was diagnosed. Both parents must have carried the genetic bent which is still hard for me to accept. I will always remember the Endo Dr. saying to me “It’s not cancer, you can go home and work with this”. My fingers say thank science for CGMs!!!! I wear an Abbott Freestyle Libre3. LADA for the past 28 years, still driving and involved in the community. For exercise, I ride an adult tricycle in the evening and I look forward to the ride around the neighborhood. Go IU Hoosiers!!!!
Thanks so much for sharing your story!
I am a 73-year-old female. Approximately five years ago, I was diagnosed with type two diabetes diabetes.
My situation is a bit different. It was finally determined that I have more hypoglycemic attacks.
For years, I asked about diabetes and was disregarded. I have generalized anxiety and agoraphobia, and everything has always been blamed on those two issues I’ve lived with for all my life, but severely for at least 40 years.
I also have had a ruin why stomach bypass surgery 25 years ago
Fortunately, I’ve been able to maintain my weight for the last 25 years and that Two has made many of the physicians and specials that I’ve seen. Disregard my concerns.
I now have an A1c between 5.4 and 5.8.
My biggest problem is when I eat within the first 45 minutes 45 minutes I’m not safe to drive or focus. Checking my blood sugar within that first 40 12:55 hour. I can spike up into the 2 to 350 range.
At two hours at out, my blood sugar can be down into the 90s.
I have the ability to both fill my blood sugar going up immediately after eating I have severe sweating and off Balance and then as it comes down, I have the sense of normalizing visions better. The sweat has stopped and I just feel “” safe again and I can go about my daily business.
I do snack regularly. I do watch all my carbs and proteins and try to make sure I have snacks available to me several times a day physical exercise definitely affects my highs in my lows. I should say mostly my lows.
I’m often dehydrated that is a constant issue. I deal with and fight myself to drink water throughout the day.
Initially, my GP recommended I go onto insulin. Before I actually started or got the prescription filled. He advised me to try rib Rybelsus. That seems to have helped some. I am on a minimum dosage of just 3 mg and have been for these past 3 1/2 years. I think it is.
I have a new GP, who is very set on having me go off the medication and just deal with my issues through eating an exercise.
I don’t know how familiar you are with patients who have had bypass surgery and mine was my form was a ruined why and whether or not that could be why I have developed this situation.
It’s difficult to look at genetic issues in my family as my father died at 59 from smoking and alcoholism and my mother died at 73 of a stroke
My father happened to be very frail, slim man. My mother happened to be quite obese. My brother also at 60 had a stroke , he was also , and then passed away at 69 from heart failure.
Speaking with my brother‘s family, they say he was never diagnosed with diabetes
If my mom had been diagnosed with diabetes, she never disclosed that information and she was never medicated for it.
With that little information, I’ve provided you do you think that i I am a candidate for LADA testing.
With the Roux-en-Y surgery, as you well know, they have to rearrange the stomach, and problems with glucose fluctuations is not unusual. I can’t tell from your note, but you should be wearing a continuous glucose monitor (if you aren’t already) and have your alerts and alarms set correctly to avoid extreme high and extreme lows. Even if you have to pay for it yourself to use it periodically, it’ll be invaluable. If you end up going on a small dose of basil insulin, it should help your blood sugars, but you will also be eligible for a continuous glucose monitor through insurance. Your family history is unique for sure, and you need to make sure your cardiovascular risk factors are under extremely good control as well. Most important is that you speak with your own healthcare team who know more about your personal medical history. You can always talk to your doctor about being tested for type 1 if that is still a concern.