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If you were diagnosed with T1D as an adult, for how long did you notice symptoms of T1D before getting a proper diagnosis?
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“Other” was my answer since I was originally diagnosed with gestational diabetes, fasting glucose abnormal when only 11 weeks pregnant, on insulin by 16 weeks. My not feeling well symptoms I attributed to 1st trimester of pregnancy. I went back to work 5 weeks after delivering a healthy baby girl. A co-worker RN who was a TID asked me to check my blood sugar, it was over 600, saw my OB the next morning and then an endocrinologist later that day who said I never had gestational diabetes simply T1D.
I remember feeling hypoglycemia for several years prior to any diagnosis, as well as major fatigue which I attributed to burn out (does serious mood swings count?). Blurred vision, horrible thirst, constantly running to the “little boy’s room,” maybe several months before seeing a doc. At my sister’s funeral a brother tested me (newly diagnosed TYPE 1), was well over 300 . I was erroneously diagnosed TYPE 2 a week later, but understandably. Obese, heavy eater, heavy drinker, workaholic. Had to fire a doc to get started on shots,, 3 years later I’m magically a TYPE 1.
I had no symptoms at all but a routine bloodiest showed an A1C of 7.9. Internist told me I had type 2 diabetes and didn’t need to see an endocrinologist, because he treats type 2 all the time. I got sick from the Metformin he prescribed. My brother was type 1, so I grew up in a diabetic household. I got myself to an endocrinologist who tested me and quickly determined I was LADA, type 1. Did not need insulin for 1 1/2 years.
I didn’t see a doctor for the because the whole family was sick with the flu and it lasted for 2 1/2weeks and it always lasted a little longer with me the 4 week I decided to see my doctor and that’s when I was told I was T1D
I have no history of diabetes in my family. I developed pancreatitus two times in three months. I had passed damaging gall stones that ruined my pancreas. The pancreas abscessed and 95% removed in order to save my life. That made me an instant type 1 diabetic. What a shock, being thrown right into the fire and forced to cope with all the difficulties all at once, at 62 years old. I struggled at first but have things under control today. Growing up, I had a childhood best friend who was T1D. Now I have a better grasp of what he went through with different episodes of medical emergencies. My friend died an early death at the age of 29 due to complications. My great thanks to the medical community and researchers that make dealing with this terrible disease better all the time as time passes.
There seem to be broadly two patterns for adult dx’d T1: slow and gradual vs fast and acute. From other forums it seems like the first pattern is assumed to be the norm, many mis-dx’d as T2 and going for as much as a year or more without insulin. For others–true in my case–it was just a couple of weeks and I was very sick when we finally got a clue as to what might be the problem. The other thing this subject brings up is the fact that part of the whole point of changing the designation to “Types” instead of the old “Juvenile” vs “mature onset” was to break the invalid association with age-of-onset as diagnostic for what’s now called Type 1. And yet I hear over and over of patients who were told, BY MEDICAL PROFESSIONALS, “You can’t be type one, you’re too old!” Sheesh. Guess that didn’t work out so great after all.
I was misdiagnosed every where I went because the OB-GYN told me I was going through menopause, the PT told me that it was a good thing my frozen shoulder was not related to diabetes, and I just kept showing more and more symptoms. I was losing weight, exhausted everyday, and when the OB-GYN put me on birth control pills, my vision got blurry. I was not feeling well, not happy, and still a wife and mother of 4. My husband, a juvenile diabetic, said “let me test you on my meter”, and the meter said HIGH. So over the phone, he called his endo specialist, who actually put me on insulin over the phone. That saved the hospitalization or ER, and I was 49 years of age beginning this journey of T1D termed LADA. Our youngest son was diagnosed 4 years after me, so we were up to 3 T1Ds living under the same roof.
Back in ’96 my genius Harvard educated GP kept giving me prednisone for breathing problems even though my lungs were clear. After a week of drinking coke by the 6 pack (not to mention relieving myself accordingly) I self diagnosed from the back pages of a book on asthma. Doc then sends me for a blood test and calls me telling me to have my wife drive me to the ER and to tell them that my BG was 950 ! Good I didnt realize how high that was or i would have had a heart attack. 25 years later, doing fine on a pump and dexcom
I had started the year off right, quit smoking and went on a diet. By June I was down to 170 and very happy with that though my ideal was probably 160. Started eating normally again, but kept losing weight. I thought this was great! Maybe I had kick started my 40 year old metabolism back to a more youthful one. NEVER once did T1 come to mind. No experience with it in my family at all. It was something only kids could get as far as I knew. In October I had a few coworkers pull me aside and tell me I shouldn’t be trying to lose more weight and that I would start looking sick if I did. (I was about 140 by then.) I’m fortunate to be a male, I’m sure our twisted society would have still been complimenting me if I was female for losing more weight. Figured I should talk to my doc, but couldn’t get an an appointment until the start of December. Not unusual to have a long wait, and I had the “well I’ve done something” feeling, so I didn’t push it. Over Thanksgiving EVERYone kept trying to feed me. (I was down to 135) I was drinking gallons of water and would feel “floaty” a lot of the time. Saw Dr. the next week and my A1C was through the roof (15.5) He told me I was Type 2, prescribed metformin and sent me home. Fortunately, he scheduled a follow up the next week to check in on the metformin. I had an angel at that appointment. His nurse practitioner happened to be T1 herself. She took one look at my chart and told me I was Type 1. I could hear her yelling at the doc outside the room after she left the room, telling him to test me. And I heard him pushing back that I was too old for T1. She persevered. He ordered the test and confirmed T1. I got an emergency endo appointment…and was super lucky again. Was the best endo I could have gotten for myself. She GETS me and actually cares what I think about my own treatment plan. Will be forever grateful for that NP. That’s my story…in a very large nutshell.
TD1 for 42 Years. No history in my family but when diagnosed at 8, I did have a pretty severe flu/cold coincide with dropping 20 lbs and being thirsty beyond belief. Interestingly, I have read a lot more type 1 diagnoses since pandemic started. I wonder if there is any connection.
Diagnosed at age 66. Great doc recognized it was a metabolic issue, blood and urine tests confirmed type1. Hospitalized with A1c over 600. Teaching hospital where doc explained my condition to students as anomaly – not typical Type 1 (age) or Type 2 (size,) but quick response to insulin was easy confirmation.
1-3 months. It runs in my family so I was pretty sure what was going on and started watching carbs before going to my appt. so that I would start feeling better.
I was super lucky in that mine was caught by chance before I had any symptoms! I was 20.
Like several others (I said “other”) I was is-Dx’d with T2. 29 years old, recently retired as a ballet dancer (this is important because I didn’t present as a typical (if there is such a thing) T2. I was down to 100 lbs, the thirst and peeing etc. No D of any kind in my family (again something the PCP should have noticed – he had my history) and didn’t know anyone with D so I had no one (no angel?) to suggest T2 was the wrong Dx. Found by a neighbor in a coma from DKA, got the correct Dx. It was about 3 months of symptoms before the initial Dx of T2.
I would actually guess somewhere between 3 and 5 months. I had the always thirsty and have to pee symptoms. I knew those were diabetes symptoms, but I was too old for Type 1 and had no risk factors for Type 2. I didn’t go to the doctor until I had to get up so many times at night for the bathroom that I was exhausted. I went to my primary care guy, A1C was 14, so he put me on Metformin. Metformin did not work. I started out at 106 or so, but to keep my glucose down, I could barely eat anything. By the time I could get an endo appointment, I was down to 94. I’m 5’6″. I looked terrible. My most wonderful endo took one look at me and said she’d bet I wasn’t Type 2. She ran a GADD antibody test and a C-peptide (I think) test. GADD was high, C-peptide was low, so she was right. Took me off Metformin and put me on insulin. I was so happy I could eat again! From what I’ve learned since, I am surprised that with an A1C of 14, I didn’t end up in the hospital before I was diagnosed.
Was hospitalized with dka in icu at 49. This is how found out pancreas stopped working. Felt so tired excessive urination rapid weights loss for 1 to 3 months. Had no idea what was wrong.
6 days after my 24th birthday day in 2005. Really sick feb through aug that year. Inhuman amount of urination, irritable, tired, hungry after smashing double big macs weight was down a bit but im 135 lbs anyways so it was hard to see i had lost a a few pounds, severely dehydrated landed in hospital for 6 days. Had never even seen insulin before and was told i would be taking 4-6 needles a day (2 long acting – 3 fast acting)via an insulin pen for the rest of my life. 16 years later ive been on 3 pumps since 2010 (on my third now, 2010-2020 medtronic mini med, 2020-present tandem tslim and having been using a dexcom for over a year now. Head up be proactive. Be open minded and stay positive.
I was diagnosed at 53 in the hospital with DKA. I had no idea you could be diagnosed as a adult with Type 1. What an education I got!! Shout out to Dr Ian Elliott for being such a kind and helpful educator!!
4-6 months, 42 years old, 20 years ago. I had all the classic symptoms but I could ignore most of them except I dropped from 120 Lbs to 110 5’6” and I could no longer ignore them. I was working on a huge work project and I couldn’t solve problems anymore, something I am good at. A1C at 10. Primary put me on pills. Did nothing. Called 5 Endos before someone didn’t say they weren’t taking new patients. They thought I was anorexic. Told me to eat peanut butter as long as I thought I could stop lol. I can say that the diagnosis was a wake up call and I am really healthier than I’ve ever been because my diet is so much better.
Diagnosed in 1963 when I was 20 years old. While I was in college, I complained to a close friend about my great thirst and frequent urination. He made the immediate connection and “diagnosed” it as Diabetes. He nailed it. I then walked in to the student health service and announced to the staff MD, “I have diabetes. What do I do now?” I grudgingly tested my urine and then my blood. That sent me to the hospital where I started insulin injections. The rest is normal history for a T1D
I was diagnosed at age 72 after 1-1/4 years of symptoms. There were two things that delayed the diagnosis. The first was that my only symptoms for nearly a year were extremely severe leg cramps (10 minutes before I could stand, 30 minutes before I could walk, 2 weeks before all effects were gone), and the second was that I had a normal A1c just a couple months before that started. So diabetes wasn’t even considered as a cause until the last few months before my self-diagnosis. Then I started trying to lose weight, and noticed after a while that it was much too easy. Before my diagnosis, I lost 30 pounds in 12 weeks. During that period, I started have constant drink-pee symptoms, then peripheral edema. Those things caused me to look up diabetes as a cause of cramps, and I contacted my physician the next day. He still didn’t think diabetes was a possible cause of my leg cramps until my A1c came back at 13.7. The cramps stopped two days after the start of insulin therapy.
I was dxd at 39 but had continued fatigue and achy joints since a bout of the flu about 8-12 months earlier. I was given a glucose tolerance test and passed it about 6-8 months before taking another glucose tolerance test at time of diagnosis when I failed miserably. The prior diagnosis was fibromyalgia. For a short period the doc put me on a small dose of steroid which I did not tolerate and promptly went off. I feel quite sure the steroid may have aggravated the situation, but that is just my own assessment. I was teaching many aerobics classes per week when diagnosed. I lost weight and was exhausted but first thought it was because of overdoing. Then it was dramatic and I went in to doc again to discover the problem. In spite of my scrawny body the doc still treated me as type 2 with metformin, which did not help. This went on for 6-12 months, I don’t remember but finally he accepted that I needed insulin. I learned how to inject a lemon from a trainer and test BS and how to count carbs in one session, and that was it. The rest I learned from the library and our local bookstore. That was in the early 90’s. We’ve come a long way:) All these time frames are approximate, how I remember at this time, give or take several months here or there.
As with others, I didn’t recognize the symptoms. About a month or so before diagnoses I kept getting hot flashes. Nothing else. In Jan 2008 I went o Hersey PA for a special event. There the hot plashes intensified and the severe thirst etc commenced. I was sent to Hersey Medical Center with a BG of 920. Clearly DKA. That was when I got the T1D diagnoses. A few years before I had suffered a sever pancreatic infection that nearly did me in. That event started the ball rolling. I was asymptotic between then and diagnoses. My Endo is quite sure that the infection is the direct cause of my T1D.
I was a tweener I was diagnosed at age 17 and for what’s it worth I would say about 2 days. I was at Disney World. #disneygavemediabetes #disneyowesmeavacation
I chose “other” as I did not feel abnormal symptoms, except an increase in seizures that had been lasting for maybe two years. No increased thirst or urination even after incorrectly diagnosed as type 2. I had my annual checkup with my GP and my glucose showed that I was type 2. Taking the new medications did not help my BG and so after a few weeks I was in the hospital beginning insulin therapy.
It’s a little embarrassing to admit, but I am NOT the first sibling in my family to develop Type 1. It’s embarrassing because I didn’t figure it out sooner, but my brother WAS diagnosed when I was five. I was diagnosed thirty-eight years later.
The thurst just kept getting worse. Then fatigue appeared. I was so tired all the time. Sleep for 8, 9, 10 hours and then do it all again after being awake for just 2 hours. Originally diagnosed as T2 bur none of rhe drugs helped. 6 months later I learned how to inject insulin and count carbs. My PCP was amazing. He just kept giving me more and more information. Now I treat with an exceptional endo. We discuss and compare everything. He started me on a pump and then a CGM and I’ve never looked back
Since I was a kid, I would fall asleep after big meals and have problems staying awake almost every day after lunch. I had major problems staying awake when driving long distances. Now I stay awake easily if I maintain my BG. For about 5 years before getting diagnosed, I got recurrent cases of rashes that would respond somewhat to antifungals. Those went away when I started taking insulin. When I was a kid I was skin and bones despite eating constantly, until I started running and playing basketball. I started running 5 – 10 miles a day and began putting on weight. Maybe unrelated, but I wonder if I was producing low levels of insulin and then became much more efficient with that insulin due to the physical activity. A few months before diagnosis, I started getting massive leg cramps in the middle of the night and I remember it felt like marbles were flowing through the veins in my legs.
I had first symptoms of excessive thirst and peeing and blurred vision on Saturday, saw my optometrist on Monday who sent me to my GP on Tuesday who diagnosed me as T2. After 4 years of pills and exercise not keeping my blood sugars low enough and getting down to 104 lbs, I asked to go on insulin. Another year passed and then I asked my new endo whether I was T1 or T2 to which he said I had always been a T1 diabetic. That was when I first heard that I was T1.
The question asks “when I first noticed symptoms of T1D” but in fact I NEVER noticed them — I had them, but I didn’t know the cause and didn’t recognize them as symptoms of diabetes. What got me to the doctor were unusually severe leg cramps (caused, I ultimately deduced, by dehydration), not any of those standard diabetes symptoms. The doctor did a blood sugar test, and the rest is history, although like almost all adult-onset diabetics, I was first misdiagnosed with Type II and it took months to get a correct diagnosis of Type I.
I’ve told this story for other questions before, but it’s particularly relevant here. Technically, I was diagnosed within about a year of my symptoms starting, even if I didn’t know what was causing it, but I wasn’t treated properly until a good 2-3 years had passed. I was ~20 when it started. The excessive thirst was what got me to the dr, but I didn’t have an MD, I had a nurse practitioner. She thought I had an electrolyte imbalance and told me to drink Gatorade every day. Yeah. Needless to say, that didn’t help. I just kept on dealing with it and then I went to the mall with my mom one day and couldn’t tear myself away from the water fountain. She started getting worried after that. Meanwhile, I was going to my GYN constantly because of chronic yeast infections. This was going on for probably more than a year. It used to get so bad I couldn’t sleep and I would just cry because there didn’t seem to be anything I could do about it. Finally, I found myself back at my GYN office, again, and another dr was filling in that day. She looked at my chart and started asking me questions, clearly irritated that this had been allowed to go on for so long. I’d been to the office for the same thing probably twice a month on average. She ordered a bunch of tests and voila! High blood sugar. But the saga continues! She referred me to my nurse practitioner “dr” to take it from there. They didn’t know jack about T1, so they put me on long-acting insulin and nothing else. That put me on a roller coaster for the next 1-1.5 years while I waited to get into the Joslin Diabetes Center. That’s when the fatigue set in. I could barely function. I was in tears when I got to my Joslin appt, telling them that I didn’t know if I could live like this. She calmly said that we were going to make some changes and I’d feel much better. They got me short-acting insulin, got me an appt with a diabetes educator and a nutritionist, who then all worked together to get me a CGM and pump. It’s certainly no picnic, but I’m grateful I don’t have to live like that first year or so.
Took me maybe 2 weeks when I was 27 in 2009. After a couple nights gulping juice and peeing it right away I realized something wasn’t right. Never before I thought a chronic disease would happen to me, and of course had no idea what diabetes was about (and my cousin had it). A few days later, the day before Easter (4-day shutdown in Sydney, AU) I managed to break away early from a big project at work and walked to the GP’s office. He made me pee on a stick and told me to go home, avoid strenuous excise and come back after the break. I didn’t understand what he wrote down, but sure enough I wasn’t going home. It was 4pm though. Thanks to Google I hoped on a bus and rushed to Prince Alfred Hospital, where on my way in I crossed paths with a nurse whom I begged to interpret the results for me. She was on her way out to spend the break with her family. She instead grabbed me by the arm and took me to the ICU. I had nearly 500 mg/dl and was hooked to an IV drip for 6 hours to dilute the blood. I remember my girlfriend being annoyed at me for being stuck at the hospital the day before the holiday break. We’re no longer together. I look back and ignorance was the most dangerous part of the problem -mine, those around me, the GP. Whilst not everyone has the same symptoms, there is a finite list that can be seen in this post. And a simple finger prick will tell you a whole lot. TD1 awareness!
I did not have symptoms, just a urinary tract infection. They tested for diabetes – I did not really understand why. But I did not find out the result until about 3 weeks later, after returning to the university from Christmas break. I was probably OK because I was trying a keto diet at the time.