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 Transcription:
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.
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.
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!
Relatable and I agree, having awareness of things looked over is so important!!
When I was diagnosed with LADA, I was especially surprised because I had seen many Endocronologists over the majority of my 42 years!!
I..like you was misdiagnosed. I was seeing an Endo who kept asking me” “Are we cheating”?. as my numbers continued to rise! I finally sought..and found a NEW Endo…when finally asked, ” What are we goubg to do with you”??? New Endo promptly testef me for T1, and I was diagnosed with LADA. as was my 38 year old daughter!!!! I am now a “happy pumper”!!!!!
Wow, good for you for finding a new doc and getting the right diagnosis!! Thank you for sharing! 🙂
Me too! Same story. I ended up leaving my Endo because who could work with a person who just assumes you’re lying!
Great information and love the title
Thank you!
What’s with the bunny?
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!
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.
Please HELP. I am sure from all that I have read that I have LADA. I cannot find a DR. that treats it. Some have not even heard of it. I live in Sussex County NJ. I am willing to travel. I have been considered a type 2 needing insulin since 2004.I have always had trouble keeping readings level, going from 200 down to 65 in the same day.I was told I am brittle diabetic. Lately I’ve been having much trouble, the past 6 months, everything is out of wack. Any info. you can give me will be appreciated. Thanks
Now with COVID you can do a video visit with an endocrinologist who specializes in type 1 diabetes, and there are a lot of them. Go online and look for type 1 specialists in a city that is not too far from you in case a face to face is required, but to determine if LADA is a possibility you do not need to be seen face to face. You will need certain lab work like a GAD antibody test which all labs do, but just get a video visit set up first.
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!
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.
I can really relate to your experiences especially the bitterness of having the misdiagnosed Type 2 and it caused a lot of negative physical and psychological consequences!
Better late then never but I do feel quite bitter and disappointed
I’m doing significantly better with the current diagnosis and today’s tech with my CGM and Pump. The change is 360 on multiple levels and I hope that Endocronologists will receive refresher courses on diagnostics and not only therapies. It’s all important!
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.
Same here, I was 38 years old, lost 30 pounds, hair started to fall out, worst brain fog of my life. No previous h/o diabetes. It was acute onset. I was in DKA. There was no honeymoon for me. C-peptide very low. GAD high. Also have a strong family h/o type 2 diabetes and a strong family h/o autoimmune diseases on my maternal side. I am the only one so far that drew the type 1 straw.
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.
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.
Thank you for sharing your story, Linda, and so glad you found a good endo and got the right diagnosis and treatments. Stay well!
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
Thank you for sharing your story – a great example of how to be proactive with your own health! And happy 80th!!
Thank you TCOYD .
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.
Thanks for sharing your story and glad you were able to find a good doctor who understands LADA and type 1!
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!
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.
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 –
I was 50 when I went for my annual physical. I was irritable, menopause, losing weight, working out, thirsty and had to go to the bathroom a lot, from working out. So my fasting BG was 300 and I was brought back in for an A1c which was 12.9. I was diagnosed with Type 2 diabetes. Not surprised, my whole sedentary obese Italian family had it. I was prescribed metformin. Numbers aren’t going down. Added glipizide. Wound up in the ER with BG of 440. I was told I would have to do shots until my numbers were under control. And they suggested I see an endocrinologist. I did. When he walked in and saw me and read my chart, he told me “I will bet all my money, and I am a rich man, that your are type 1. Very funny man. He did some test and it showed that in fact I was a type 1. So o was taken off all meds and went on an MDI treatment. It was amazing how quickly my numbers came down. I am now 63 and have been on a pump and didn’t like being attached with a tube. But with a CGM and MDI, ny last A1c was 6.3. I did try afrezza and liked it but why numbers weren’t as stable.
Wow, thanks for sharing your story, Sandy, and congrats on your amazing A1c! 🙂
Hi. I inject basal only (once daily), but changed my exercise and diet regime radically from 1 day to the next upon a LADA diagnosis in 2018 at age 60+, although I was always lean and active and ate Mediterranean; can this or other delay further destruction of beta cells and thus postpone the onset of Type 1?
Hi Jacqueline,
Right now we really do not have any means of slowing down beta cell destruction.
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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!
Hi Timothy,
This is super common and there are quite a lot of vets who developed type 1 while serving or once they got out. Hopefully others will see your post and comment on their experiences as well.
So interesting – thank you! My husband is going through diagnosis at the moment. Three years ago (age 31 and 2 weeks before the birth of our first child!) he was diagnosed as a type 1. His GAD antibody was positive however only very mildly positive. Three months later, he was having continuous hypos despite reducing the insulin. He then stopped injecting. He was put on Metformin and the GAD antibodies rerun which were now negative! He was then told he was a Ketone prone type 2. Recently his blood sugar has continued to rise and he had ketones so they have reverted back to insulin. We are so confused by the GAD antibody test and don’t feel we have an accurate diagnosis so very interested to hear other people experiences as we now think it is LADA.
The GAD test is really not that great. There are lots of false negatives. The best thing to do is to use what diabetes meds controls his glucose levels the best. Get a good endo!
Are there any diets that help with LADA? My husband is struggling. He doesn’t want to go on insulin but can’t find a diet that works besides eliminating all carbs. He is unhappy with his weight (he can’t put on any weight). How can we find him a nutritionist that understands LADA? Thank you!
A LADA diagnosis means your husband is a type 1, and he will need insulin 100% at some time. There is no special diet other than a healthy one avoiding a ton of carbs. You need to see the lecture on LADA in our video vault! It is excellent.
https://tcoyd.org/video-vault/
I was never diagnosed with LADA or type two. My symptoms began in my early 50s and would come and go. Because I was “a woman of a certain age”, every doctor I saw said it was normal perimenopausal symptoms. After actual menopause several years later, the diagnoses were that symptoms can last for years after menopause. Meanwhile, what I now know was simmering type one symptoms were becoming more frequent and more severe. It took almost dying from DKA at 59 to finally get a diagnosis of type one. That was in October 2021. I’ve been on MDI since then and all of my “menopause” symptoms have mysteriously cleared up. Sheesh…
Wow, misdiagnosing type 1 as menopause…haven’t heard that one before!
Do antibodies present at time of diagnosis in type 1 or lada continue to show up in blood results many years later??. My endo says they disappear over time. I can’t find any research that discusses this issue.
Thanks in advance.
Your endo needs to get caught up and watch our CME program. There is one marker that stays elevated for years, and that is the anti-GAD antibody. All the other ones disappear.
I was diagnosed eventually with Lada about 21 years ago. I am still using just basal insulin– 3 units currently and watching eating and exercise to monitor my BG levels. I am disappointed with the endocronologists in my area– Boulder- Denver Area,, willing to travel or do televisits, can you recommend the best doctors to help me maintain and educate me more about my LADA diagnosis ongoing.
thanks for any recommendation of Doctors, clinics, etc. that might provide more information on how to best preserve or maintain my current levels ( AIC- 6.4) . Thanks for your help..
Hi Jackie,
Dr. Edelman recommends the Barbara Davis Center for Diabetes. He spoke very highly of the clinic and said they have a lot of great doctors:
https://medschool.cuanschutz.edu/barbara-davis-center-for-diabetes
I had a series of symptoms such as excessive drinking, excessive urination, constant fatigue
I took a blood test
I went to an endocrinologist for 317 fasting sugars and 10.7 a1c,
Metformin was prescribed for me and anti-gad test
The result of the antibody test was positive
But with metformin, the fasting sugar is 80 and the after meal sugar is 130
Do I need to start taking insulin?
If your blood sugar is that good then you don’t need insulin because you’ll get low. But if you do have LADA, and it sounds like you do, you eventually will need insulin, and you want to be the first to know about it. So keep a close eye on your blood sugars, and maybe get a CGM if you can.
Hi, I repeat my tests after three months. and the result is:
anti-gad negative
c peptide 3.7 normal range is .9 – 7
A1c 5.4
fasting blood glucose 92
after meal glucose 101
I am confused. what type am I?
type 1, type 2, Lada, not diabetic.
can I hear your opinion?
Is there a reason why you think you might have diabetes?
https://tcoyd.org/2020/07/a-dose-of-dr-e-lada-a-whole-lada-misdiagnoses/?unapproved=73830&moderation-hash=8d2fe8e6164bd731656a59092800c009#comment-73830
this is my comment
Well it is possible to get a false positive GAD like you did on your prior test. At this point it looks like you do not have type 1 diabetes, but things may change. Keep an eye on things, but the good news is that you’re under really good control.
Im a 35 y o female, diagnosed with T2D in July 2023. Diabetes is very common in my dad’s family – most others are in india and were never classified as type1 or 2. Eventually they all go on insulin and struggle with control. All of them are active people with healthy diets. I’m reasonable active – workout 5-8 hrs a week, love outdoor activities, eat healthy, get good 7-8 hrs of sleep and have tons of energy to do 40 things generally. Since May of this year, I started losing 2-3 lbs a week and had thirst and urination issues – but that was also while I was working outside a lot and there were air quality issues in NE. At regular physical in late June , everything was normal, blood work was done a couple weeks later n came back with high fbg levels- a follow up 2 weeks later confirmed it with a1c at 12.3. My pcp started me on 1000 mg of MF n cholesterol meds and sent me to an endo who doubled MF and added trulicity.
Since starting on medication for t2d, I’ve had a lot of other GI issues, and I stopped taking MF, but still taking trulicity.. I’m eating by the plate method and carb counting prettty well; but blood glucose levels have not dropped much (still over 240 fasting n over 350 after meals)- weight is still dropping at 1.5-2lbs a week. Excessive Thirst and urination have disappeared.
My doctors have been reluctant to diagnose or test me for T1D. I pushed at both pcp and endo visit, and eventually convinced ending to write a script for gad65 antibody testing after 3 months of T2D treatment. I tested after 3 weeks – It came back positive (>250 IU). But my c peptide levels were within range (1.86 after meal). I found out that testing for additional antibodies could help confirm T1D diagnosis and also help with determining what stage of T1D Im in to maybe qualify for TZield – i realize depending on internet for treatment is dangerous, but my doctors haven’t been helpful.
After multiple messages to my endo, he agreed with my internet findings, but just said we can discuss that and other options at my visit 2 months later per his initial advice, until which time, he would like me to continue on the T2D treatment path.
I’m unclear on why my doctors don’t complete testing before starting me on various medications. If the goal is to help me treat faster without waiting for test results, why are they unwilling to pivot faster also?? I have asked for a new endo, but the earliest appointment is another 4 weeks away. I’m anxious about what is happening to my body while I wait and continue on a treatment without confirming the diagnosis.
Can I just ask for the tests I want (antibody) without a doctor’s orders? Any thoughts or tricks on how I can
Get my doctors to respond better to me would be super helpful..
It’s not unusual for people with type 1 to secrete plenty of C-peptide in the beginning. It would be important for you to get the other antibodies tested (you can go to type1tested.com to order a kit to do at home with a drop of blood that will measure all four antibodies). In the meantime you need insulin. I would suggest getting on some basal insulin like Lantus or Tresiba or Toujeo that will work well with Trulicity. Trulicity can cause some GI side effects especially when you first start it. If you have a primary care doctor, starting some basal insulin will help you tremendously. Titrate the dose so your fastings comes down. In my book, there’s a good chapter about starting basal and titrating it. Email Lynne at lynne@tcoyd.org and she can send you a pdf of the book.
Regarding your doctors, my suggestion is to bring a box of chocolates or a bottle of wine to your next appt and start off the meeting by saying, I really appreciate how much you’ve helped me, and then go in for your questions. $10 they’ll go for it.