A Dose of Dr. E: LADA – A Whole Lada Misdiagnoses

LADA (latent autoimmune diabetes in adults) is different than a “traditional” type 1 diabetes diagnosis because the loss of pancreatic beta cells is slower, so many doctors incorrectly diagnose it initially as type 2. Dr. Edelman and Dr. Pettus explain the stages of LADA, what to look out for, what tests can confirm the diagnosis of type 1, and how to adjust to the natural progression of the disease.

 

Video Transcript:

Steve: Hello Nation, I’m here with my good friend and colleague, Jeremy Pettus. Today we’re going to talk about LADA. Not like a melody – la da la da la da – we’re talking latent autoimmune diabetes in adults. It’s basically when you get type 1 diabetes later in life. It presents much differently and I will say this, if there are any caregivers watching, it’s the most missed diagnosis in diabetes. I know many of you who have LADA, when you were diagnosed you were frustrated because when you were diagnosed they just said, “Oh you’re type 2” and it took years before you got the correct diagnosis.

Jeremy: You know, we do these TCOYD conferences around the world and this is one of the most common things that comes up. People say, “I got type 1 diabetes when I was 40, some people say I have LADA, what do I have?”  It’s really just type 1 diabetes as an adult. We give it this fancy name of LADA because it is a little bit different. But some of the important differences are these. I got diabetes when I was 15, Steve got it when he was 15, it comes on like a ton of bricks, you get really sick, you go into DKA, and it’s pretty hard to miss that diagnosis. You’re a young kid and you get diabetes, and you see a pediatrician who’s very used to seeing this presentation, and he or she diagnoses you with type 1 diabetes and you’re on your way.

When you get it when you’re 30, 40, 50…it can kind of smolder along so your blood sugars get elevated but you’re not super sick, and then you go to see an adult physician (not a pediatrician who is used to seeing type 1) and they diagnose you as having type 2 diabetes and maybe start you on metformin or some medications that aren’t going to work because you don’t have type 2 diabetes, and it can take years for people to get the right diagnosis.

Steve: You know, it’s very frustrating for diabetes specialists like ourselves to see this all the time. Adult = type 2 and kid = type 1. These folks don’t look like an individual with type 2. Type 2s do have that propensity to have a lot of abdominal obesity. They have high triglycerides, low HDL, they have a family history of type 2 diabetes. You see people who get diagnosed with LADA and they’re skinny minnie, they don’t have any family history, their cholesterol levels are normal, no high blood pressure and the doctor says, “You better go on a diet” because that’s all they’re used to teaching and it’s very frustrating. As Jeremy said, the loss of the pancreatic beta cells is slower, so you don’t crash and burn like we did when we were 15.

Jeremy: So to make the diagnosis, you have to go in to see your doctor and they might check the GAD antibodies, and that’s a marker that you have some kind of autoimmunity. It can really help to tip the diagnosis that this is type 1 and not type 2. They can also check something called C-peptide which is a measure of how much insulin your body makes. If you have type 1 diabetes, that’s going to be really low.

Another important point I want to make is that sometimes with type 2 diabetes, it’s very common that over time people will go on insulin and they’ll say they “converted” to type 1 diabetes, but that’s not true. It’s just that you’ve had type 2 diabetes for awhile, and you now require insulin. But it’s not that you “got” type 1 diabetes.

Steve: What should people with LADA expect? What’s the progression and how will their therapy typically change over time? In the beginning, sometimes they may just need one shot of basal insulin, and sometimes they stay on oral agents for awhile.

Jeremy: I think the good news is that it does smolder, and you have more time to work your way into it. The bad news is that that can also kind of mess with you. Over time your blood sugars start creeping up and you start thinking, what am I doing wrong, now I have to add mealtime insulin, but that’s just the progression of the disease. It’s very different than when you and I got it and we just had to be on insulin and we knew the gig from the get-go. You LADAs have this advantage that you’re still making insulin, so you might just get away with a basal shot, but eventually those beta cells get killed and eventually you will have to go on a full type 1 therapy. And it does get more difficult over time to control your blood sugars.

Steve: I think that’s important for expectations. You know, it’s really nice to have LADA because you’ve got a couple of years to get used to living with type 1 before you have to go on a pump or a multiple daily injection regimen. What kind of prognosis do these folks have?

Jeremy: Well, it all depends. If you’re a LADA and you don’t take care of yourself and your A1c goes to 15, of course you’re going to have complications. But I tend to think that LADAs tend to do better in general because you got it when you were 35 instead of 5, so that’s 30 extra years where you had normal blood sugar control, so you kind of have that runway. And when you’re diagnosed, you still make insulin and you still have better blood sugars, so people in my experience seem to be less prone to complications.

Steve: In closing, is there any research going on to take people who have pretty good beta cell function and their blood sugars are not too bad at all (though they’re creeping up slowly) to prevent them from progressing?

Jeremy: So for people who are at risk for developing type 1 diabetes, there’s this program called TrialNet that people can enroll in to screen relatives. If you have type 1 diabetes and you want to know if your brother or sister or kids are at risk for developing it, you can reach out to them. But for people who are newly diagnosed, let’s say you’re 30 years old and you just got type 1 diabetes, what can you do to preserve the bets cells you have left? There are a lot of different clinical trials going on, mostly immunotherapies, medications to try to stop it. We don’t have anything to date that’s been proven to be effective, but there are some things in the pipeline that look promising.

Steve: Keep an eye on TrialNet, and JDRF has a good research site as well. Thanks so much for coming on the show Jeremy.

Jeremy: No problem, I enjoyed it.

24 Comments
  1. Avatar

    I am a typical patient of LADA, misdiagnosed at the begining. Noticeable symptoms came on in Nov. of 1997 (age 40); thirst, frequent urination. No real fatigue or hunger. I am 5’7″, at the time 130 lbs. Was a runner, no history of diabetes in any family tree.
    By Feb, 1998 had lost about 9 lbs.
    Had to refuse to leave the doctor’s office (well-woman visit) until she gave me a blood test. Blood sugars were in high 200s. She said it was an “anomaly,” and to come back the next day, fasting. My blood sugars were over 300.
    I was diagnosed type 2. Given metformin. I kept complaining that, even with dietary restrictions and metformin, I was unhappy with the lack of control. She said I was “too anal” about my blood sugar numbers. (excuse me, it’s my kidneys, eyesight and limbs we’re talking about!)
    She finally gave me a referral to an endocrinologist, who diagnosed me with LADA. However, the first shot of insulin she had me give myself that evening was 6 units. It took me three hours, lots of OJ and almost a call to 911 to get my sugars above 70. We discovered I could only tolerate no more than a unit at a time in most cases.
    Twenty-two years later I’m being treated by a diabetes NP (these professionals are a blessing!), I’m on a pump and CGM, time in rage most days is 95-100%, A1c 6.2.
    I appreciate LADA is a little known diagnosis. I’ve “educated” my cousin who is a family practice doctor. I appreciate you all getting the word out.

    • Avatar

      Wow, what a story! You are a shining of example of how to be your own best advocate! Good for you for listening to your body and being diligent about getting the care you knew you needed. And way to go on your TIR and A1c!! Thanks for sharing your story!

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    Great information and love the title
    Thank you!

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    What’s with the bunny?

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      That’s Dr. Edelman’s pet bunny Wilbur. He decided to bring him on to to make a special guest appearance for the cuteness factor!

  4. Avatar

    My Primary Care Physician caught my diabetes at an annual physical, but because I didn’t seem a candidate for Type 2 diabetes she recommended I see an endocrinologist. She theorized I had “Type 1.5”, what we know as LADA. The endocrinologist I saw didn’t believe in LADA! After 15 months of not reacting to oral medicine and becoming 20lbs underweight, he said “I guess we’ll put you on insulin.” That comment inspired me to pick a new endocrinologist. He tested for ALL the possible antibodies,not just the GAD panel, ann he made my correct diagnosis. I went on an insulin pump immediately. I encourage people to tell their stories because you never know who might hear it at the right time to help them with a correct diagnosis AND to fight for your healthcare – I’m glad I found better than, “I guess we’ll put you on insulin.”

    • Your story really makes me angry. That S.O.B was not only ignorant but also stubborn and unwilling to admit he or she screwed up. The discouraging thing is that you were seeing an endo and not a PCP! Glad you made it out in one piece. I bet your old endo learned from your situation whether he admits it or not.

  5. Avatar

    Thanks. I have LADA, diagnosed at age 68! You nailed it, diagnosed with T2 a few years before. We lived in a tiny coastal town at the time, and doctor didn’t even recognize why I was sick, just thought my extreme fatigue, blurry vision, no appetite, etc. was fibromyalgia!!

    • If you read the comments from others, you are not alone and this type of mis and delayed diagnosis of LADA happens right now. This is why we talk about this with our continuing medical education programs for HCPs. Stay well and thanks for the note. We just diagnosed a 94-year old woman with LADA!

  6. Interesting…but where were you guys (or your counterparts) 40 years ago when I, despite presenting nearly a total lack of typical t-2 symptoms, was still promptly dx’d as one! Based not on science or appropriate diagnostics supporting their knee-jerk dx, but evidently simply on the statistical probabilities without having to work at it.
    Sorry, but I’ve never really forgiven my several MDs during those first years for what I consider in retrospect as plain and simple malpractice! In those days, I started knowing zero about diabetes nor even had known anyone with it, plus didn’t have the huge benefits we have today of an internet to self-educate with, so it took me five years of plotting my multiple finger sticks while learning and suffering through a steady rising bg trend through several unproductive med changes before my increasing knowledge became a certainty, convincing even layman me that I was very probably a t-1, and was finally able to convince my endo (no less!) to “please” order a C-peptide test for us both. The super low results of which along with my history were the t-1 convincer without gtt or gad further tests…resulting in an immediate switch to a fast-slow insulin mix regimen (at the time with basal coming later) and a steady 6+ A1c ever since (with CGM now).
    Anyway, thanks for letting me vent a 40 year grudge. One where I’ve always wondered how much if any organ damage may have resulted by five years of excessive bg levels – hopefully little or none…no thanks to the medical profession.

    • You can vent with me anytime. Believe it or not, this same type of misdiagnosis happens to this day. Plain and simple ignorance. This is why we talk about this with our continuing medical education programs for HCPs. Stay well and thanks for the note.

  7. Avatar

    So I think there is another misconception here which is that all adult onset T1D is LADA because I would say from my experience it’s not.

    I got diagnosed at 33 with what my endocrinologist calls
    “atypical” adult onset T1. Because unlike LADA I followed the same trajectory as what you describe for your diagnosis at 15: Very sudden onset, very sick with DKA, no honeymoon period and need for immediate treatment with basal and bolus insulin.

    So I think it is also misleading to state that adult onset T1 is LADA b/c then there are people like me who just get straight up T1 in adulthood…

    • It is interesting that some folks crash and burn and go into DKA at 33 and others behave like a classic LADA. For sure you did not have LADA, you had classic run-of-the-mill type 1 diabetes onset. Age is not the only classifying factor and presentation is also important.

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    I agree with Laura. At 66 years of age, I went from feeling fine to being very sick and lost 30 pounds within 3 months and had to go on Insulin immediately.

  9. Avatar

    Same story. Couple of years telling doctors I was so tired after supper that I would fall asleep watching TV. Finally diagnosed at age 47 with type 2. Was 5’6″, weighed 125 and no risk factors. Saw a local pediatric doctor that dealt with child diabetes. I had researched and felt I had type 1 1/2 or LADA. She had not heard of that. Oral drugs for several years until finally convincing her I wanted/needed to get on insulin to protect any beta cells I might still have. She asked why would I want to do insulin??? Shots for a couple years, then FINALLY an insulin pump. My husband wanted me to change doctors, but we’re in a small town and closest endocrinologist was two hours, so I stayed with her for too long. Finally went to the big city to a wonderful endo that tested my GAD antibodies and I’ve been going to him every three months since, except lately with coronavirus. Thank you for this article.

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      Thank you for sharing your story, Linda, and so glad you found a good endo and got the right diagnosis and treatments. Stay well!

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        My story started well before Jan 1983 and diagnosis. I got very cranky if I did not get food in me on time ; I learned about the 6 meals spaced out .Fast forward to January 1983 …I received chocolates at Christmas 1982 and devoured them ..I did not gain weight and called it “ I have my diet under control “ I worked as a Director of Foodservice in a hospital I started to drink lots of water , eyesight went funky , my Staff even noticed that I was losing weight 3 Days of this and I made an appointment with GP . I told him what had happened and I suggested that I had diabetes. He had me pee in a kidney basin , dipped a stick in it and confirmed I had diabetes.Off to the Lab on Saturday with a result of 300 .I was put on type 2 medication and had to visit the Lab weekly .6 Weeks later the BS had hardly come down , neither did I feel much better .I suggested to GP to put me on insulin , he listened and I was in hospital 5 days to adjust my BS as well as learn how to use a needle with insulin This GP also ordered a Thyroid test in 1995 .I started pumping in 2001 and the Diabetes Specialist ordered a C-Peptide prior to getting the pump …I required insulin I celebrated my 80 th several days ago , no complications other than diagnosed with Osteoporosis in 2006.It was the same Diabetes Specialist who insisted to have a bone density test applied ..A long story from this Canadian type one -er

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          Thank you for sharing your story – a great example of how to be proactive with your own health! And happy 80th!!

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            Thank you TCOYD .

  10. Avatar

    I had the same experience as so many. I saw a endo in Albuquerque who insisted I was a type 2 even though he also recommended I go on a pump after a while. The next person in my new health plan took one look at my numbers and said “you’re a type one.” It was confirmed when I moved back to the east coast, and my first doc here did a c-peptide test.

    It was so upsetting to believe that I did something “wrong” according to the doctor, not getting thinner and losing weight so that I was just going to remain a type two. First I was angry at the doc in NM, then I thought he just doesn’t keep up with the latest information about diabetes.

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      Thanks for sharing your story and glad you were able to find a good doctor who understands LADA and type 1!

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    Great information and thanks for sharing

    Following my C-Peptide levels over the last 10 years. I definitely fit into the LADA category. My C-Pep levels went from .44 in May 2014, .22 August 2017 to almost zero at this point.

    I was diagnosis in December 2011 at 27, 16 months after my 8 year Navy career. I had all classic signs of high blood sugar for a long period of time (weight lost, thirst, frequent urination and my eyes getting blurry). Almost that entire year (2011), I was putting off going to the doctor because I was in school. I would amp up my running and physical activity drink protein then feel “fine” for a few days. Finally after I couldn’t see the classroom board around finals week, my wife convinced to go to a local urgent care. Urgent care doctor said for my high (6’2) and my weight 182lbs, I matched up for a good BMI. I looked like a walking cloths hanger at this point. I had realized at that point I lost 30 lbs between getting out of the military in August 2010 and December 2011. He was going to send me home but he decided to run a blood glucose test instead. Thank god. 466 blood sugar and ketones in my system. He sent me straight to the local Hospital for my 3 day ICU stay. My A1C clocked in at 13.0%. Discharged with insulin, syringes, accuchek and T1D diagnosis, my life was forever changed and filled with anxiety and lots of questions. Fast forward to today, I’m on a Tandem Pump and Dexcom thanks to my saving grace, the VA healthcare system.

    Over the last decade, I have tried to understand how I developed this shortly after my military career. Are there other veterans or active military members with this same dx? Did I have this for a while and I didn’t know it? In my experience with my diabetes, LADA is a term that a lot of doctors either do not like to use or they do not have enough knowledge about. Thanks again for the information!

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    Hello, This is great information and after fighting with my primary Dr. for months to have the Cpeptide test and antibodies test done, he finally did it and confirmed that I have the antibodies but have a good peptide test. I decided to transfer to an endo at this point. I have been controlling my levels with diet and exercise since November and went through the “honeymoon phase” with near perfect levels for the last 7 months. Been prescribed all the Type 2 drugs, but havent taken any as of yet. All of the sudden, I am struggling to control my numbers. No matter what I eat/dont eat. After researching, I asked my endo to prescribe/recommend an insulin treatment to preserve my beta cells. My endo is refusing to offer a RX. I dont know what else to do at this point. I need to find an endo willing to prescribe an insulin treatment for my LADA.

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      Yes you may want to try a different endo..look for one who sees a lot of type 1s. You could try contacting your local JDRF chapter to see if they have a recommendation as well. Good luck –

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