My diagnosis story

Type 1 and LADA New to Type 1 Diabetes
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So, I don’t know how rare I am to be diagnosed with Type 1 at age 28, but I feel like an oddity. I was diagnosed at the end of June of this year, purely by luck after requesting routine labwork of my NP after a routine visit with her.

Three years ago, based on my fasting blood sugar, I was told I was pre-diabetic and asked to lose weight and have an A1C. I lost some weight and my A1C back then was 5.6, so I was made to believe I would be okay.

I really hadn’t given diabetes much thought since that visit three years ago, but decided in June it was time to be reevaluated. Well, my first fasting bg was over 400, followed by my new A1C level at 11.7, followed by a repeat fasting on a different day in the 200’s. Bam, now I have diabetes.

I was extremely fortunate and swiped a canceled appt with an endocrinologist. Only in retrospect did I have DM symptoms, I was getting up multiple times most nights to urinate or chug liquids, I was sometimes ravenously hungry, and I was always sweating profusely and tired constantly.

At my initial endocrinologist visit, I was put on nightly Lantus and they did a GAD antibody test, being that those are the most common in Type 1. It felt like forever (was really like a week to a week and a half) until my test came back, highly positive for GAD autoantibodies. Normal is 1-5, mine was nearly 800 (although I have been told a high number doesn’t really mean much). So, after that test came back, Humalog got added in a dinnertime, and within a week or so, I started dosing at all meals, but never snacks.

My question is, everything I have read about LADA suggests that it is slow to progress and that people with it don’t need insulin right away, so does that mean that more than likely, I do not have LADA? I know it is just for academic purposes and doesn’t change my treatment, but I am still trying to wrap my head around this diagnosis. Also, I have not had a c-peptide nor other antibody testing and wonder how valuable that information is or has been to any of you? Thanks!

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Many people believe that LADA is just an adult form of slow onset T1. Nothing more. Maybe our adult immune systems are more robust and resilient against the autoimmune attack and the who process is just slower who knows. But some people have a fast onset and others have a slow onset. Some with LADA can go more than a decade before needing insulin. And it isn’t just the autoimmune attack. When your blood sugar gets high (like yours did), the high blood sugar actual kills your beta cells (this is called glucotoxicity). To it isn’t uncommon even for people with T2 to have very high blood sugars and see a sudden onset of diabetes that ends them up in the ER. Some people find that once they normalize their blood sugars their beta cells can perhaps partially heal from the glucotoxicity and if that is the case you may experience a honeymoon.

Maybe, maybe not. And a honeymoon isn’t always fun since it can make you diabetes quite unpredictable.

ps. There is no test for LADA, only a test for T1. If you recover and need less insulin you will see it.

pps. A positive antibody test on any one of the antibodies is sufficient for a T1 diagnosis. You will probably get a c-peptide, but it isn’t like to change your diagnosis or treatment unless you insulin requirements dramatically change.

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gosh @DiabeticDani sorry to welcome you to the club nobody wants to join. I think some LADAs can be rapid onset, like @Melitta here has written about

I don’t think the general public knows very much about how common it is for adults to be diagnosed with type1. Our community was founded by @askmanny who was dx in his 30s, and his doctor was sure he was type2 at first. the most common thing to happen with LADAs is to be originally misdx as a type2, sometimes for years. Maybe it’s a small blessing this didn’t happen to you. Welcome to the community.

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Same age I was when DX’d in 1983, about a month after my 28th bday. Guess I was lucky not to be misdiagnosed like so many others. Except…

YES. For me it came on and became acute over a period of maybe 5-6 weeks, following a really nasty cold that might have been the auto-immune trigger. My PCP told me that was probably the case, and also said that it wasn’t at all unheard of to get “juvenile” diabetes, as they still called it then, at my age. So for decades when I was the only T1 I knew, before encountering others via the DOC, I just thought it was “normal” within the abnormality of getting T1 itself. If anything makes me feel weirdly a-typical it’s all the stories (which I had never encountered before joining TUD) of people struggling for more than a year with an incorrect T2 diagnosis. I’ve finally gotten my head around the idea but my first reaction has always been Huh? why aren’t they dead??? Because I would have been. Dr thought I was within a day of tipping over into DKA.

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LADA is slowly progressive Type 1 diabetes, and is actually the most common form of Type 1 diabetes. DiabeticDani, you don’t have LADA. some of us, myself and DrBB included, have rapid-onset Type 1 in adulthood. It is actually very common, more common than childhood onset Type 1 diabetes.

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I think there are varying degrees of LADAness. The emergence of my Type 1 was not slow as far as the “you have diabetes” part. Five weeks of thirst, peeing and losing 20 pounds. However, I didn’t need mealtime insulin for more than a year, though I went on Lantus immediately.

Despite the suddenness of my onset, there was some foreshadowing. My diabetes nurse, as I was walking into my first appointment, said, “I remember you.” I didn’t have a chance to ask her about what she meant.

Later, when I got home, I looked at my medical records and I had an elevated A1C a year earlier. But it was not a repeatable result. (I still can’t figure THAT one out). I have no memory of them saying ANYTHING to me about it, though, in hindsight, what could I have possible done about it?

Many adults who develop Type 1 have no history of it in their family, which makes it difficult to explain. (That’s not true with me. My brother was diagnosed with Type 1 in 1971 at 13. When I was in the first grade). When you keep in mind that it’s an autoimmune problem, it’s easier to understand that it could happen anytime.

Why did it take so long for our immune systems to be triggered? I don’t know. But we adults may be the key to understanding why it happens to anyone. Why did my brother develop it at 13 and I develop it at 43? If scientists can answer that question, we could be much closer to a cure. (Believe me, a lot of researchers, like Dracula, want my blood).

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If you have T1D in your family I encourage you to participate in TrialNet

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I was just diagnosed with type 1 at age 48. I read the oldest person to be dx’d with type 1 was in his 90’s. All it is is adult onset type 1. I’m not really down with the weird “lada” or “1.5” diagnoses. I think it’s either autoimmune diabetes or it’s not.

Clearly, though, the onset in adulthood is different than that of a child. My son began showing symptoms and was on insulin in 3 short weeks. The honeymoon lasted about 6 months, and then things evened out for him and it was easier to control.

I wonder if you were symptomatic way before you realized you were. This could have been going on unnoticed for a long time, and with an A1C that high, it seems obvious that it was going on for a long time.

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You really can’t ignore being thirsty and needing to pee all the time. That’s how I presented and when I went to the doctor, I told him it had been going on for a little over a month. Even then, I thought it was something else–until my bloodwork came back over the weekend. I got a call from the urgent care on-call doctor that I needed to adjust my meds–my diabetes meds. Which is HOW I found out.

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Holy cow. Wow. I found out because of hypoglycemia, which seems weird. My bg will go up with simple carbs, but I can avoid that. I can’t avoid going low, though, unless I’m constantly eating. When I was nearly unconscious and my bg was 30 (I wouldn’t have even known to check if my son wasn’t type 1), I went to the doctor.

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I live in Seattle and my first Diabetes Team was at Virginia Mason. My internist sent me to see an Endo at Benaroya when we figured out I was Type 1. I was in the Bridge Study at Benaroya Research Institute and gave samples to TrialNet, which led later to the T1Exchange. They realized that it made sense to have an organization that could register T1 patients willing to participate in studies and match them up with researchers looking for T1s with specific characteristics. Which makes me a guinea horse, because the website for T1Exchange is GLU.

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I don’t think your age at diagnosis is odd. I was diagnosed at the age of 30. Looking back, I had symptoms of impaired glucose metabolism in the year before my diagnosis. I remember a skin abrasion from a fall I took skiing that took a long time to heal – a classic sign of elevated blood glucose. I even delayed my hospital admission for several days, yet I never went into diabetic ketoacidosis. My blood sugar was very high and I was drinking a lot of water and urinating frequently.

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I was diagnosed at age 50. All the classic symptoms. No family history. Just life.

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Do you produce glucagon? what antibodies do you have? I found it interesting you discovered it with hypoglycemia.

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Welcome to the most exclusive club in the world that no one wants to be a member of. Glad you know so that you can begin addressing it!

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I have not been diagnosed long (April 2016). I was pre diabetic too and had gestational diabetes. I can tell us that your story is almost exactly like mine. I’m 33 and my whole whole world crashed down on me. I think it took until month 4 for my hair to stop falling out. I had random nerve pains. Went low a few times at night. I started to feel better but it was hard (it still is) but you will find a routine that works for you. I believe I’m still in LADA. I need very little insulin too. Even though my post seems grim (not trying to sugar coat here) getting diagnosed has helped push me. After month two or three we went off the grid on week long camping p. I decided to coach my kid’s sports and find myself challenging myself more. In a weird way…I’m more motivated (and I feel a million times better physically than beforehand . I guess what I’m trying to say is that it will be different…it will frustrate the he’ll it of you…it will get better about feeling odd too (EVERYONE has SOMETHING) and hopefully it will push you in a positive way physically and mentally. Good luck. You are definitely not alone!!! There are a lot of us diagnosed later.

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I was the last of 3 siblings to become a member of this little club. I am also the oldest and thought I had dodged the bullet. My youngest brother was dx at 3 as T1. He had coldlike symptoms that just wouldn’t go away. My other brother at 40 after being misdiagnosed as a T2. He had been sick. I was 57, went into DKA with BG of 1141, had been to the doctor the day before and six days prior to that very frightening day. Both days I was told by different doctors that I had the “bug” that was going around. Glad that bug didn’t hit everyone the way it hit me. I am grateful to God that I am still alive. I am healthier actually now than I was before and definitely stronger.

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wow, what a question. I presented with A1C of 13 and was fine about 18 months before (A1C of 5.2). I actually felt fine except for the last six months prior to Dx. Because of age and weight it has take 3 years to get the LADA tests (I paid out of pocket) and they were all very positive. I think I was lucky at Dx only because the Endo thought that I should have some insulin at the start to bring me down as my BG was so high. I spent a month without any treatment six months after the Dx and then realized that I would always need insulin as none of the oral medications was able to control my sugar levels.

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I was diagnosed Type 1 at age 49. I thought it was weird, but I have since learned that being diagnosed as an adult, even an older adult is quite common. In fact, I read somewhere that the number of children diagnosed T1 in the United States is almost the same as the number of adults. I think the name “LADA” was invented because the fact that Type 1 can often “creep up” on someone as opposed to just appearing suddenly, as was previously though, didn’t jibe with what doctors and researchers had always assumed. So they made up a new name for it. Now research shows that there are often changes and warning signs (like high fasting BG) before Type 1 “suddenly” appears. I think that everyone who is diagnosed with diabetes or “pre-diabetes” should automatically get antibody and c-peptide tests, which can help get an accurate diagnosis.

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We get free health screenings including a1c testing if we pay a bit more. Mine was 5.4 six months prior. I always paid to get it because type II runs in my family. I remember the next six months were horrible. Well…I felt sickly…tired…then it hit a few months prior. My long beautiful hair started to fall out. I STILL didn’t go to the doctor. My PCP made me get on insulin before the tests came through. I’m glad and thankful for that. I hear people fighting to get tested and there I was STILL in denial. I’m almost 5 months in and feel like a human again.

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