Months/Years Leading Up to Autoimmune Diabetes?

I had a pretty slow progression.
At a work wellness exam in 2016 my non-fasting blood sugar was 176. They told me to follow up with my doctor but I ignored it because I didn’t think it was a big deal.
My blood sugar during the 2017 wellness exam was 84.
I took a glucose tolerance test while pregnant in 2018, the result of which was 409. A1c was 9.9 and I was diagnosed with type 1 and have been on insulin ever since.
Looking back, I found bloodwork results from early 2018 that showed an A1c of 6.0 and fasting blood sugar around 180. I had no symptoms whatsoever until about a week or two before the GTT when I became unquenchable and was peeing a lot. But also I was 6 months pregnant so it was very easy to chalk it up to that.
I think things would have continued progressing slowing until pregnancy exacerbated it.

Oh wow! Your story is very interesting, especially that you had a high fasting bg one year and the next it was normal! Most people don’t receive that kind of insight before being diagnosed.

I’m guessing they did additional testing to diagnose you with type 1? Since gestational diabetes is quite different from autoimmune diabetes.

I hate GTTs. I had one like 20 years ago?? I still remember how miserably sick I got during it.

Thanks so much for sharing! :slight_smile:

In October the year before my diagnosis, my fasting blood sugar was 109 and the doctor said we’d keep an eye on it at my next year’s physical. By the following July I couldn’t stop drinking water, had bad leg cramps at night and frequent urination. I went back to the doctor after a paranoid internet diagnosis and my sugar was almost 400. The doctor told me I was type 2 because I was 34 and put me on Metformin. A few months later I went to an endocrinologist and was positive for all the main antibodies so my dx was changed to type 1 and I’ve been on insulin ever since. One weird thing I’ve had since college are red circular patches of dry, itchy skin that come and go. Years ago, I noticed they were worse when I was regularly eating a lot of sweets. This was a constant part of my life for over a decade. Since I started insulin and have been controlling my BG, the patches haven’t come back. I have never heard of these patches being a symptom of type 1, but all the evidence points that direction. So I guess the common symptoms came on quickly, but less common symptoms have been around for years? This is just my observations. Maybe it’s just a coincidence.

LADA diagnosed in my forties after 2 years of symptom development. I didn’t really realize at the time, but after dx I read the chapter in Bernstein’s book about high-bg effects – from thirst, weight loss, digestive pain, leg cramps and everything else – and I pretty much had every single symptom. I was lucky to catch it before hospitalization, I was probably just a few weeks from that.

Diagnosed Type 1 at age 19. I started feeling a little tired about 6 weeks before actual diagnosis but didn’t notice any real symptoms until about 3 weeks later. In those 3 weeks I stopped going to my part time job and school. I got so bad I ended up in the ER. The endo who treated me after I was admitted asked if I had been sick in the last few months but I had not been sick.

So I had no clue, no signs in years or months leading to diagnosis, just weeks.

I was diagnosed at age 62. I came off two months of leading Fall Foliage tours and found that I had a hard time moving firewood to the woodshed. Normally I would do two or three loads (1 cord) a day but I powered out after one truckload. I was dragging behind my dog in the morning walk and would collapse in my chair to rest before getting breakfast. By early December I was constantly thirsty and with urgency to urinate every half hour. I was experiencing unexplained infections and losing weight. By early January I was down to 95 pounds ( from my usual 112) so I went to see my primary care person. My urine tested high in ketones so the next day I went for a fasting BG and it was 314. Dr ordered me on Metformin and ordered more blood tests (my A1c was 12.9) but I told him I was Type 1 not type 2 because I did not fit the profile and asked him to order the GAD 65 and c-peptide tests and the following week he said yes I needed insulin and gave me a levemir pen and told me to test my fasting BG and gradually increase until I was below 150. I felt better the next day. A week later I told him I needed to bolus for my meals and he gave me novolog with bad instructions but I had ordered Using Insulin and figured out my own ratios and demanded a referral to an endo which happened a month later. For me these symptoms seemed to come on in two months although throughout my adult life I would experience hypoglycemic episodes where I would need to eat something immediately because I felt weak. There are no Type 1s or Type 2s in my family. I did have breast cancer when I was 42 (surgery only and lots of alternative therapies), and developed hypothyroidism just after that.

Yeah, since my GTT result was so much higher than is typical for gestational diabetes, they tested GAD antibodies right away and they were slightly positive.

The etiology (causes) of Type 2 are well knows: heredity, age, and weight. The treatments are controversial: read 3 different medical textbooks, get 6 different recommendations for the best treatment.
The essential treatment for Type 1 is well known: insulin (though in some cases, additional medications are necessary). The etiology is unknown, but I personally think viral infections start the autoimmune reaction that destroys the Islets of Langerhans. A friend brought his daughter over and asked me, ‘I know you are a doctor, what is this rash?’ I was 38, had my Doctorate in mathematics, and had no idea, but I very quickly learned it was varicella. Over the next year, I developed polydipsia and polyuria, which I ignored, but then I went for a checkup, and, at 39, my GP found sugar in my urine and diagnosed me as Type 2. Later (for fear of a lawsuit) the Endocrinologist (at the same facility) said I was Type 2, and my body required exactly twice as much insulin as my Islets could produce, so I would have to exactly match the insulin my own body was producing with injections. The treatment worked perfectly, but my C-Peptide was 0.0 nmol/L, so, while the ‘Type 2’ diagnosis was to preclude any lawsuit, the treatment prescribed by the Endocrinologist was optimal (and the GP mistake was understandable: more than 90% of all diabetics are Type 2, so that was the most likely diagnosis, and the only ‘test’ that the GP knew was that Type 1 is Juvenile and Type 2 is Adult, so my age was the definitive diagnostic proving Type 2).
Based on my own experience, I became convinced that the hypothesised etiology of Type 1 being viral infections was correct. And it was about one year between the infection and the development of full-blown Type 1. For most Type 1 diabetics, childhood viral infections are one likely cause; for myself, a childhood viral infection at age 38 was almost certainly the cause.

Diabetes type 2 runs rampant in my paternal family, so for me, diabetes was highly likely. But i developed type 1 at about age 13, not long after having measles (apparently i had a bad batch of vaccine). It happened within months. First sign was a glass of freshly squeezed orange juice had me dizzy within 30 minutes, perhaps less, of drinking it. The following day my dad had me at the family endocrinologist’s office. I walked out with my first bottle of insulin and humongous syringes. My dad, all his brothers/sisters, both paternal grandparents had it, though grandfather was type 1. Of my 11 cousins - all tall & thin - most were eventually diagnosed with type 2.

I also had poor measles vaccine too . When we had a measles outbreak here in California, I had an antibody test and I had no antibodies. I know I was vaccinated as a small child in the 1970s
I was told some of those early vaccines tend to wear off.
So I got the measles vaccine a year ago.

I was diagnosed at Age 24, seemingly out of the blue. But when I look back to high school, I remember occasionally feeling horrible in the afternoons with a feeling that I now know was low blood sugar. Even as a child I was desperate for food in the late afternoons while my brother and sister never cared if dinner was delayed. Was that related? Who knows?

TrialNet research indicates that most of us were dealing with an autoimmune attack for several years before diagnosis. So a virus or traumatic event might have hastened our move to Stage 3 but in most cases, the trigger event was not the cause of our Type 1.

I was diagnosed as T2 at first some twelve years ago, and was prescribed metformin and mixed beta and fast acting insulin. Within the week my urine turned dark brown and my poo was white. Apparently metformin can cause liver failure in some people so I stopped it. A few months later my diabetes nurse switched me to separate fast acting, Novorapid, and the complementary beta insulin. After a few years I was changed to Toujeo and when I came back to Canada to Tresiba. All worked equally well. My diagnosis came at age 52, completely out of the blue. I had been feeling under the weather fir nearly a year but just thought I was working too hard, full time job on my feet all day, then home to do usuals and three nights a week doin Cubs and Scouts. Eventually I felt so dragged out I went to my GP. Fortunately for me the diabetic nurse was doing her clinic and she came out whilst I was at the counter, took one look at me and said I know what’s wrong with you. She checked my sugar level, it was 24, and immediately said I was going on insulin. Blood tests at the hospital clinic showed I had no C-peptide function and the diagnosis was changed to T1 LADA. I have to say that I have vitiligo, an autoimmune condition inherited from my grandmother, she had and eventually developed diabetes, my thyroid failed after the birth of my son in 1994, I also suffered from drug induced lupus due a dose hydralazine because I had preseclampsia, and recently have developed rheumatoid arthritis in my hands, wrists, ankles and feet and shoulder. Can’t wait for the next condition to arrive. I have been in the ICU twice, first when I caught Norovirus whilst at Heathrow for a first aid course and just recently when my blood acids were so high I was in kidney failure, seems it was due accidentally taking too much ibuprofen! Fortunately I’ve managed to avoid Covid so far, touch wood, and am awaiting the call for my group to be vaccinated. Hope this helps you. We all have different stories. The one thing my endocrinologist did say was that my weight, always on the high side was not a factor in my developing the condition, it is genetically based in T1 no matter when you develop it and there are indications it is a factor in T2 as well as the other types they are now naming.

I was misdiagnosed with T2D at 41 y.o. Every 15 months or so, dosage of oral medication was increased or a new one added for nine years. Then I ran out of oral meds and went on to GLP-1 and insulin. At 18 1/2 years, after two years of being asked if I wanted additional tests to maybe qualify for a pump and CGM, I finally went ahead. Was only tested for C-Peptide (low) and GAD65 (off scale).

In addition to the steady progression of medicines, the other telltale sign I might not be T2D was that I was only slightly over weight. My latest endo reran the C-peptide and GAD 65 with the same results, and I also came up high for 2 other auto antibodies.