I think I posed this question over a year ago, but I’ve noticed more research being done on LADA and other autoimmune diabetes. I wanted to ask if anyone with autoimmune diabetes (whether it’s type 1, LADA, MODY, or anything in between) could share their experiences in the months and years leading up to their diagnosis. Did something seem off in the months and years leading up to it, or did it come on suddenly and completely out of the blue? I’m curious to hear people’s experience.
I’ll try to keep mine concise:
In the hospital for an unrelated issue, my urine test showed no dumping of sugar. Two weeks later, it was there. GTT showed I was a diabetic. Oddly, the local GP, actually a neurosurgeon, treated with Type 2 meds. I moved away for college, and the new endo told me, somewhat hostilely, that “in 6 month or 2 years, you are going on insulin.” That seemed odd, as I wasn’t fighting. Two years later, I had lost 30-40 pounds, down from 175 to 140 pounds. I’m 6’4", so I was just skin and bones. It hurt to sit for more than 5 minutes.
I’ve read of the timeline, and know that Type 1 can take years to develop, and does not become evident until about 75% of pancreatic beta cell function is lost. Preceding and during that hospitalization I was dealing problems with friends as well as social anxieties, and I have read stress triggers, or rather correlates with, onset.
Maybe related, since this seems like my case, in that my diagnosis was few years late for Type 1 - I believe is around 13, maybe earlier - , one of my grandparents had Type 2, my parents had neither, although I would have been considered normal weight. This study points to a unexplained relationship:
I was diagnosed at age 14 in deep DKA (hospitalized for two weeks; in retrospect I had been hyperglycemic for at least 4 weeks before that).
But in the years preceding that, ages 10-13, I would occasionally go through some one or two day stretches where I had to urinate an awful lot.
Thanks so much for sharing! I have also read that diabetic symptoms don’t show until well into disease progression. That’s actually why I’m curious about people’s experiences in the years leading up to diagnosis. Basically what was happening and what they were experiencing symptoms-wise as pancreatic function was progressively failing.
The stress trigger would definitely be consistent with autoimmune diseases. It’s interesting to me that you mention social stress and social anxiety! I usually read more about physical stressors. I hadn’t thought as much about psychological stress.
Autoimmune diabetes seems to be quite complex. It’s almost like there is an autoimmune component, but also since there is a relationship to type 2, there is also a metabolic component that maybe triggers the autoimmune part.
Thanks again for sharing!
I had never been sick in my life. Maybe missed 4-5 days at school during my entire education growing up and have probably taken a total of 15-20 total sick days at work over the past 50+ years of working. But, for one week over 30 years ago I ran a high fever of about 105 degrees for a full week and the following week I started getting really thirsty and drank water like a fish.
Back in those days, everybody was toting around a water bottle and touting the importance of staying hydrated so since it was a warm Summer I thought nothing of it until in the Fall I needed a blood test for a key man insurance policy. My result was showing a BG of close to 400 and was told to go right to the hospital. I felt great, so just made an appointment for the following week or two later where they ran a battery of tests and told me the news.
I grew up with a love of carbohydrates, having white bread, pasta, rice, Pizza in some form every day plus a sweet tooth so lots of chocolate and candies. I would order a large pizza for lunch, eat it and think nothing of it. I was very active so could snack all day and still stay in the 125-135lb range.
That is my story in a nutshell.
Hey Tim, thanks for sharing! That’s really interesting that you only experienced frequent urination occasionally. When you read about symptoms online, it usually makes it sound like it’s a symptom that is ongoing for weeks/months, maybe even years, nonstop before diagnosis.
Although I drank a lot of milk - 1/2 to 1 gallon a day when I was 16, that was only when I ate lunch and dinner, my 2 meals a day After my diagnosis, still, I had no excessive thirst that I remember, but I began hitting the fridge every 30 minutes.
I had a very fast onset of type 1.
A few months prior I was losing weight and I was already thin.
This was the summer after I finished university. I had an upper respiratory virus that I couldn’t shake.
I joined a rec league and played volleyball at the beach while looking for work.
Some days I had a weird feeling in my legs where I almost couldn’t move them. I never ate real well and I now I figure I was having rebound lows. I knew enough to eat something but didn’t go to the doc.
After a few months I started getting sick to my stomach losing more weight. I went to a doctor who diagnosed me as type 2, go home and don’t eat carbs a while.
The next day I felt worse and my vision was blurred.
I went to the ER and I was diagnosed at type 1 and admitted for. DKA. The morning after my first insulin shot I felt so much better I was still sick with the virus that triggered it and the cultured it. Coxsackie B.
I think it was probably 4 months from being fine to being DKA
As far as I know or can remember, I was fine until several weeks before being diagnosed. It was 1959 and I was a very petite 8 yr old. We were on a car trip from Los Angeles to Arkansas and I was miserable with unquenchable thirst and making my parents stop the car frequently so I could pee along the side of the road.
We were gone two weeks and I became sicker and sicker losing 20 lbs and becoming sticks and bones. I don’t remember if my mom took me to the pediatrician before the vacation or not, but I do know that the doctor sent me home twice before he thought to test my urine. In 1959, even in So Calif, you just didn’t hear of diabetes very much. I was dying before the doctor made the diagnoses. I spent only 3 days in the hospital and my parents received very little diabetic education.
The pediatrician offered to resign from his practice, but my parents forgave him for his negligence.
Up to that point, and even after, I would get a cold once a year. Nothing serious. I did have horrible acne, and was given things containing Vitamin A, as well as tetracycline, but nothing else.
Hi CJ, thanks for sharing! I’m especially interested in your comments about your diet. I’ve been reading the past few years about the rise of “skinny type 2”, which results from metabolic dysfunction caused by either yo-yo dieting or even athletes who are lean and eat high carb diets on season and then off season they gain weight. The cause seems to be that every time someone regains lost weight, the type of fat they regain is highly insulin resistant. I wonder how many of these cases are actually autoimmune diabetes.
So what were you diagnosed with? Are you LADA?
Hi Timothy! Thanks for sharing your story! I’m very interested in the connection to getting sick and the diagnosis. It makes so much sense. It reminds me of how most autoimmune thyroid disease is triggered by the Epstein Barr virus.
Also hearing about your diet is interesting. I have heard from others that they had reactive lows for years before diagnosis. It sounds like you only had them for a few weeks before diagnosis, but it was an indicator of metabolic dysfunction. It’s very interesting this seems to be a common symptom before being diagnosed or before full blown diabetic even for autoimmune diabetes.
Oh my gosh! That’s a scary story! I imagine your parents were worried sick watching that unfold.
I’ve talked to quite a few type 1’s diagnosed at a very young age who were near death when they were finally properly treated. It is scary to think that still happens.
Thanks for sharing your story
After 30+ years at Joslin Clinic they are still scratching their heads how to type me as I don’t fit any of their other patient profiles. I don’t fit Type 1, Type 2, LADA or MODY. A few years back they were convinced I was MODY but they could not pay for a MODY test to prove it because of lack of diabetes from grand parents down to grand children. Since I wanted to know once and for all I agreed to pay for the test and the multiple genetic markers they were looking for, not one of them pointed to MODY so it is still a mystery to everyone. I think nobody really cares because my A1C hovers around 5.8 and I am able to flatline my BG using a Dexcom CGM + MDI (Multiple Daily Injections) of fast acting Humalog. I can’t take any Basal Levemir or Lantus as the long acting insulins all cause night time hypoglycemia events, even if I take just a couple of units. So when people ask, all I can say is that I am insulin dependent.
I had a really slow onset I think. Fairly classic type 1 diagnosis at 8 years old with a BG over 1500. I can remember the med students in the hospital gasping about it every time a new rotation came through, but it didn’t mean much to me at the time. I must have developed an insane resistance to the ketones because I didn’t get REALLY sick until they started giving me insulin.
I was diagnosed in October of '89, but in retrospect you can see I started getting sick around three years beforehand. There are ZERO pictures of me between ages 5-8, because I looked awful in them. It crept up slowly enough that nobody noticed the change. I think they just thought I was a tiny hypochondriac or hated school because I went home sick from school nearly day after lunch. And had a “teeny weenie bladder” as they referenced my constant need for the bathroom.
It was my school nurse that finally figured it out. I went to a private school where the nurses were more involved in something along to wellness checks. Height, weight, lice checks, vision, etc… She had noticed that at 32 lbs, I weighed less in 3rd grade than when I started pre-school there. She’s the one that asked me to pee in a cup. I watched her dip the stick, then she told me to go get my coat 'cause we were going to the hospital. Called my mom and told her to meet us there.
It was such a long, slow process that I can’t remember any particular illness before then. Just felt like I was always sick. The only thing I know for sure is that I had chicken pox in kindergarten, age 4 or 5. It was a small school tied to a small group of churches where everyone knew one another, and the parents pretty much decided that when one kid got it, they ALL would get it, to get it done and over with. I haven’t seen any links between chicken pox and Type 1, though. Seems they’re more often tying it to flu-like triggers.
Oh, I see! That’s so perplexing. Especially that even genetics didn’t provide any clarification. It’s great that you’re able to find something that works for treatment though! That seems to be a challenge for a lot of people. Thanks for sharing
My endo told me I had the classic type1 progression.
He also told me my diet had nothing to do with it.
And well all my friends in college ate the same way.
He knew enough to culture my nose because he must have had the knowledge. Coxsackie B has long been known as trigger for Type 1. I was still sick with it in the hospital.
I was never a person who got sick before. Even now I rarely get sick. I had COVID-19 last March and I barely felt sick. I only know because I had antibody testing done.
I always figured I had an overactive immune system, so overactive that it attacked my islet cells. I also have eczema which comes and goes, another autoimmune disease.
But my overall health is quite good. 34 years later I’m still here.
Nasty cold in late October, got over it, then started having weird symptoms in November, symptoms kept getting worse, finally severe, diagnosed “juvenile type” diabetes in December. Symptoms were the usual stuff: peeing a lot, thirsty all the time, feeling like a hangover without having drunk anything—except I didn’t know what it was a sign of or that they were even related to each other. But anyway, prob. about 6 weeks from the first “something feels off” to “get thee to the Dr stat!” This was 1983, I was 28.
Dx conventional juvenile diabetes, age 11. No family Hx (but, likely inherited influence because I’m of Finnish/Danish/Swedish descent). Dx January, 2 week onset after/during (probably) having the seasonal flu. Lost 20 lbs, or maybe 20% of my body weight. Hospitalized 1 week. Barley survived. Possibly some immunocompromise leading up to the event, due to adverse circumstances & being really sick. Drank 2 Liters of 7-Up during class, frequent urination, & vomiting - all the usual symptoms.
This month it is 56 years since T1D diagnosis, when in Kindergarten. Teacher noticed trips to 'potty room" more frequent than normal, but did not mention to my mom. I had 6 siblings, so parents didn’t notice my frequent BR trips at home.
Not sure how long that went on, but likely weeks, not months or years. Mom noticed me being less active/tired, weight loss, AND me eating more at meals. Definitely more trips to BR, but with large family, wasn’t noticed. Eventually Mom called for dr appt, doctor smelled my breath and sent me directly to hospital. Stayed 10 days, sent home with Lente insulin and instructions for one injection/day.
Large extended family, no other Type 1s, but many Type 2s including my Mom (normal/underweight).