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For how long did you experience symptoms of T1D before your diagnosis?
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I started feeling tired but not really sick the month before my diagnosis. I was a full time college student with two part time jobs so I didn’t think anything of it. A few weeks later I noticed I was always thirsty and needing to use the bathroom more. Then both of those really increased and I no longer had enough energy to go to work or school. The final week before diagnosis was the worst. In all, probably 6 weeks or so from when I first started feeling off.
The virus that made my immune system go nuts was the mumps. That was in May, 1965. But, it wasn’t until October, 1967 after two years of becoming sicker and sicker that I was hospitalized. My body was skeletal and I was nearing a coma. I think the only reason I held off the diagnosis was because I was a very hyperactive child. Always on the move. Looking back at all the candy I ate, I really don’t know how. Anyway, from my diagnosis in 7th grade until graduating from high school, I slowly gained some weight. At 5’7”, I barely weighed 100 pounds at graduation. Now, not so thin, I still love sweets, but bolusing for them is not good, so it’s a constant battle with my will. 😩
I was diagnosed at the age of 4, so I don’t recall the details of my diagnosis. However, I’ve always been told my parents were quick to notice a change in my behavior, so I’d guess less than 2 weeks.
Age 4 also. How does anybody remember anything from that age? My mom is 98 now. But her dementia precludes the asking — much less answering — any questions. Ahh, ancient history. c’est la vie
When something dramatic/traumatic happens you remember. When I was a baby in a high chair, I discovered how a lever works. Push down on this end and the wooden tray comes up. After doing this gently, cautiously a couple of times and seeing the tray rise, I hit the end of the wooden lever really hard. The tray suddenly hit me in the face! Learning can be painfully traumatic.
Wanacure: I was apparently more adventurous. I rode my tricycle down the basement stairs. 🙁
1977, I think it was about one week. It depends upon how long it took me to get a doctor’s appointment. I knew almost immediately something was wrong. I had to walk upstairs to go to bed at night, and it took every bit of energy that I had to get up the steps. I was also drinking liquids constantly, and could not quench my thirst. I felt exhausted all of the time. I made a doctor’s appointment right away, and was diagnosed when I went in. Tried pills for one week, then went on insulin, permanently.
Having said that, I remember feeling dizzy often before meals, but felt well after I ate. That went on for one or two years before the aforementioned incident.
If you were dizzy before meals, could your beta cells have been producing excessive insulin?
Unfortunately, I will most likely never know. But, I know that something was off. Your hypothesis sounds as good as any.
By the way, I forgot to mention that I was very sick just before the symptoms started.
I was 5 when I was diagnosed and don’t really remember, but my mom has told me that they thought I was hypoglycemic up until the day I ended up in the hospital with a BG over 800.
My whole family got the flu — but it was like my flu never went away. My progression to DKA was rapid. Within 3 weeks, I had lost nearly 10 pounds, my vision was blurry, I was desperately thirsty, peeing all the time, and very lethargic. I saw the symptoms listed on my classmate’s “7th Grade Health Fair” poster and said, “I think I have diabetes!” Everyone dismissed me for another week until I burst into tears and my mom took me to the doctor. Voila! T1D.
Good for you, the first one to have the diagnosis!
I remember being very sick just before I was diagnosed. My story is similar to yours, except for the second part of your story. I had no idea what diabetes was before I got it.
I was diagnosed at the age of 3, (1960) right before my 4th birthday.
All I remember is going to the doctor and the next thing my mom said was we had to go get things from home and go to the hospital. I do remember my mom saying I was a very “cranky” child at that time.
I was diagnosed shortly after I turned 20 (I am almost 50 now) so I remember the symptoms and one was embarrassing: I kept getting yeast infections. I also recall that I had an 8 a.m. computer science class that semester and remember being so annoyed that we weren’t allowed to have drinks in the computer lab because I was soooooo thirsty! This went on all semester and I didn’t go to the doctor until May and was done with college for the year so it was about 4 months of symptoms. When they tested my BG using a finger stick, it was “only” 317 so I was not terribly sick yet.
My story is similar: in my 20’s, at college, suffered with recurring yeast infections for ages, saw multiple doctors. It wasn’t until one specific doctor looked at my chart/family history and saw that my mom and brother were type 1. He ordered blood tests right away and whatdoyouknow, my blood sugar was in the 500s. I wish I knew that was a symptom, or that any of my previous doctors would have looked in my chart or even asked me about my family history.
Wow – Lisa – our stories are very similar! In fact, my father was Type 1 but, fortunately for me, the doctor I saw was my family doctor who was aware of that fact so the conclusion to test my BG came quicker. Sorry to hear you had to go through multiple doctors to get to your diagnosis!
I raised questions at my 18 months old checkup. Every “symptom “ was explained away, or attributed to a viral cold that he had been fighting. Nine days later, he awoke from a nap with very concerning breathing. Even at the ER, they were ruling out pneumonia. After three hours, his BG was tested which resulted in a lights and sirens transfer to a hospital with a Ped Endo unit. We were told he may not make it through the night.
My mom died when I was 7 at the beginning of August. I started wetting my pants in school and “acting strange”. The doc’s put me on antidepressants. My odd behavior was not helped by wonderful church ladies dropping off meals and desserts every day. Then came Halloween. I went walking with my dad in the woods and walked into tree, passing out on Halloween day and ended up in a coma. The last thing I remember was being given a bottle of cough syrup (!!!)(apparently I had developed a cough) as I was being wheeled into an elevator in a wheelchair. I was barely conscious as the cough syrup slipped from my grasp and I was out. The doc’s had no idea what was wrong with me so I remained in a coma for two days. Finally, one young doctor checked my bg and there it was—diabetes. Thank you for saving my life, Dr. Lange! When I woke up, I asked, “May I go trick-or-treating.” Sure, but you can’t eat any of it.
This was in the 60s. Not sure if diabetes goes undiagnosed for so long anymore. I would hope not!
Thank God for Dr. Lange! He saved your life. He will now be part of your family tree (a reference to the movie Enemy Mine). May you and the doctor continue to thrive.
A stressful situation preceding diabetes onset seems to be worth some research. Just one of the paths to diabetes or other maladies?
In April of 1991 both of my daughters came down with chicken pox. In June I had lost 25 pounds and had all the other T1d symptoms. One morning I woke up with what felt like a hangover with out drinking. Went to the Dr’s office and I pegged the BG meter at over 600. He sent me directly to the hospital where they started me on insulin injections. My Mom had died the year before and my father and sisters couldn’t remember if I had chicken pox. After researching T1d I told my GP that it was a reaction from the chicken pox virus and he dismissed it as anecdoteal. Now of course we know different.
Mumps? Chickenpox? Is diabetes caused by a certain virus? Or is it the stress that mumps or chickenpox or the death of a loved one or some other dramatic event that may precipitate diabetes?
Wanacure, I want a cure, too!
No my autoimmune system reacted to the chicken pox virus.
The autoimmune system went to war and the beta cells were collateral damage.
A brother was diagnosed a couple months prior to a sister dying of cancer, while I had symptoms several years I shrugged off it became full blown a week after her death. I think the “autoimmune” was there, the emotional stress watching your sister’s death was a catalyst.
I was having the thirst/pee cycle and I knew that was a diabetes symptom. I was a bit over 50, and I didn’t know older people could develop T1. Since I had no risk factors for T2, I just ignored until I was getting really tired from getting up 3 or 4 times a night. It was at least a month, probably close to two. When I finally gave in and went to the doctor, my A1C was 14. He said T2 and it was another four months for an endo appointment and the correct T1 diagnosis.
I was diagnosed pre finger stick testing, and you went to the doctor if you thought you would die otherwise. So, I was skin and bones by the time I was diagnosed.
It was 50 years ago so I don’t remember exactly, but I know it was an extended period. I was in the USAF on temporary duty in Korea and experience the increased thirst and urination that I now know are hallmarks of T1D but didn’t know at the time and there was no internet to explore!
Just guessing. It was 56 years ago…
It was the last weekend of January, 1976, and I was a college freshman. J-term just ended and I start going though the thirst/drink/pee cycle. I told my friends that I though I had diabetes. (Years earlier, I had read a Readers Digest article about “juvenile diabetes”.) I went to the campus clinic on Tuesday and told the nurse my symptoms. She sent me to the local clinic doctor on Wednesday who made the diagnosis. I was fortunate that from onset of symptoms to diagnosis was less than a week.
My T1D was diagnosed in September 1991 but I was having symptoms since November 1990 and from November 1990 until diagnosed in September 1991, the Doctors never bothered to test my blood glucose and instead prescribed antibiotics or similar medications claiming I was suffering from either a viral or bacterial infection.
My last misdiagnosis Doctor visit was 3 weeks before my Diabetes was finally diagnosed and from that last misdiagnosis visit to my T1D diagnosis, in just those 3 weeks my weight had dropped from 160 down to 112 pounds, my blood sugar was somewhere estimated/guessed to be over 2100 but the Hospital lab could only get readings up to 1600 and it took 3 days in the ICU before my BG dropped low enough that the lab equipment could give them a numeric BG reading.
Doctors said it was a miracle that I survived long enough to get diagnosed because by then my blood acetone level was almost 1/2 (0.5)% higher than what their information said was a “100% fatal blood acetone level” so they said my BG should have had me arriving unconscious and placed on life support, but my blood acetone level alone should have had me going to the morgue instead of the Hospital so they were completely unable to understand how I remained conscious and even able to walk into the ER under my own power.
I’m so glad you survived! You are around for a reason!
Wow!
As someone initially misdiagnosed T2, it’s hard to pinpoint. People complimented and praised me for months on the weight loss, including my Primary. Prior to then, I had been in my proper weight range for my height, most of the time being underweight.
Our society rewards women with anorexia. They become “models.” 🙂
diagnosed as Type 2 approx. 4 years prior to DKA.
After what was then, 1987, the standard test, a five- hour fasting blood test, I had symptoms for about two months. The test ranged 35-350. Yup, definitely diabetic but not diagnosed as T1D until five years later when the Draconian diet stopped working and the annual A1C was over 12.
I was diagnosed at age three. I do not know how long I had symptoms prior.
I knew something was wrong but was totally in denial because our daughter’s overseas wedding was approaching and I wasn’t going to miss it! All the walking and smaller food portions in England probably got me through it okay but a week after arriving home I was in hospital DKA.
I was diagnosed at age 18 month with severe diaper rash
Looking back I have to assume that the frequent hypo experience post meal with activity was my first sign that things were not right. That was months before diagnosis.
Because I was 47 they kept diagnosing me as type 2, I nearly died.
I was 48 when initially misdiagnosed T2. Threw a fit during a T2 meeting (unusual for me) and they tested me for autoimmune antibodies and C-peptide.
I was very thirsty for a few weeks. When I told my parents, a doctor & nurse, my dad said he would get me tested for diabetes. My mom said that it could be diabetes since her grandparents and great-aunt had it, but probably not. A couple of weeks later when dad got me a blood test my BG was over 450 a couple of hours after lunch. He started me on oral medications that day. A couple of months later I needed to take insulin. While injections are not pleasant I am grateful to have insulin and still be alive.
As a teenager I started to have eye difficulties and went to two eye doctors over 18 months trying to discover why. One said I was too tired, the other said I smoked too much pot even though he had no knowledge of my lifestyle. Finally consulted our family Dr who diagnosed diabetes. Was immediately put into the hospital. Late 1960’s
About a year after being sick with some virus and feeling run down after I was dx’d. I am LADA
Ii am guessing that it was about 2 months. It was 1962 and I was 10 years old. The onset of the thirst/pee cycle seemed acute. One evening when my family was shopping for back -to-school stuff and I was consumed with thirst so I filled up at every water fountain available. Before the shopping trip was over, I was needing desperately to pee, and I was still thirsty. From that day on I continued the cycle of never being able to quench my thirst, and visiting the bathroom all day and all night long.
It took weeks for my mother to convince the GP to test me (his solution was to suggest psychiatric counseling for my mother and a lecture to me to stop fooling around.
It was close to Thanksgiving when a compromise was reached whereby the doctor tested a urine sample.
I had been convinced that a body could not go on living the way my body was acting, so I was amazed and pleased that there was an explanation and even a treatment. I had never complained about my symptoms because I had no idea such conditions were known to medicine. Rather, I felt my body was somehow a mistake.
Cynthia, your last sentence echos what I’ve heard LGBTQ teens say on PBS documentaries.
In 1978 when I was 14 I was away at summer camp, and while on an overnight canoeing trip I remember feeling so so weak when we had to portage all our gear and canoes past some rapids. I was criticized by the other girls for slacking off. That night I remember devouring the s’mores. Then the next day I was so thirsty while paddling that I would sneak handfuls of water from the lake, even though we were told not to drink the lake water. I wasn’t diagnosed with TD1 until December that year.
My case is interesting. I was older when I got the MMR shot and it caused severe inflammation. My small capillaries burst under my skin. My stomach and back were the color purple like the girl “Violet” from Charley and Chocolate factory. I developed pancreatic insufficiency which slowly led to overt diabetes. So, I had itchy skin, severe stomach pains and nausea for about 1 or 2 years before the thirst and weight loss set in.
I was dx in 1955 at the age of 8. I don’t clearly remember how long I was experiencing symptoms before dx. I just remember that within 3 months of starting the 3rd grade I had the measles, chicken pox, rubella and bronchitis. Because I had missed so much school my mom waited until a school holiday in April to take me to the pediatrician. Very fortunately the doctor was friends with my grandfather who had been dx. with diabetes as a young adult and used insulin. That was the reason he tested my urine in his office. He had me go directly to the hospital after he saw the test results.
1. Maybe having abnormally erratic high blood sugars (“latent diabetes”) makes us susceptible to chickenpox or mumps? Is what we perceive as one cause of diabetes actually an effect of of diabetes?
2. We “know” it isn’t caused by a single gene. Did you know some rare single-gene caused diseases have already been cured using CRISPR technology? A genetic researcher at Fred Hutchinson told me years ago, “There are too many genetic factors in diabetes. If it was just one faulty gene, yes, CRISPR would theoretically be a cure.”
3. Blurry vision, getting up at night to pee, lethargy, thirst, weight loss, the “fruity” smell (of acetones) in my breath being alarmingly identical to the smell of urinating….but I denied anything was unusual at age 15. Fortunately (for me, not her), my older cousin had been diagnosed a couple of years earlier, so my alert mother was already aware and on the lookout for diabetes symptoms. My diagnosis was prompt. And my mom found the best endocrinologist at the best clinic known in the city for treating diabetes.
NICE AGAIN !!!
I really don’t recall. I was 14. Had the classic symptoms, thirst, frequent urination, weight loss, oddly I was red meat aversive. The clincher was when I had to have the school band bus pull over in the side of a windy road so I could pee. I’d say 1-3 months.
It came on pretty fast, during the summer of 1958. I was losing weight fast, approx 1 -2 lbs a day. Couldn’t sleep thru the night because I had to urinate so much, couldn’t get enough to drink, etc
I marked other because I was diagnosed T2D before T1D.
Lynn, being attracted to sugar and simple carbs, isn’t that something to which most animals are “wired” for? But this nerve-wiring can be manipulated and conditioned by social forces like advertising. According to a recent PBS Nova program what we eat and how much we eat is not a question of willpower. This is relevant also to people judged as too “fat.” They are not guilty of moral failing! (Did you see the recent Dr. Phil show on “fat shaming”?) The recent power struggle between the sugar cane industry and the corn syrup industry and their respective congressional lobbyists is illuminating. There’s immense profit to be made here. Whose sugar product replaced the other in Coca Cola? Why do so many foods like yoghurt have sugar added? What has been the result? A public health crisis of obesity, diabetes, heart disease, etc. Another fallacy exposed by the PBS documentary: exercise alone won’t cause weight loss. Exercise is healthy, but that alone is no single cure for obesity according to research. What you eat and how much you eat is far more important and this can be heavily influenced by psychological/social conditioning found in ads, product design and product location in a store.
NICE !!
I don’t know for a coupla reasons:
1) I was young and it was 51 years ago… memory has faded… and I’ve never been good with timelines.
2) Even when I was REALLY sick, I didn’t know what I was experiencing were “symptoms”… I guess I just felt like life had gotten a bit more bathroom oriented. (And, I expect the first symptoms were subtle enough for my Mom to think, “huh?” but not “crikey! I’ve got to get her to the doctor.”)
What I do know is that the entire family had gotten the flu and I was the only one that didn’t recover.
The flu happened around July/ August/ September. Then, by November my Mom was concerned enough about me not wanting to eat that she let me have TWO donuts one day (because I was excited about eating them.) Then, at the end of November right at or slightly after Thanksgiving is when I really remember what happened. It was traumatic and seared into memory.
My Type 1 Diabetes was caught during a routine pregnancy check. The doctor first assumed it was gestational diabetes.
I went undiagnosed for a year and a quarter while I was having extraordinary leg cramps, both noctural and exercise-induced. To give an idea how bad these were, the exercise version would leave me unable to stand up for 10 minutes after the cramp, unable to walk for 30 minutes, and unable to attempt exercise again for up to two weeks. In the last couple of months before diagnosis, I started experiencing rapid weight loss, which I ignored for a while because I was actively trying to lose weight. Eventually, though, I realized that my weight-loss campaign was succeeding way too well. And about that time, I started having the drink-pee experience. I recognized these last symptoms (we have a T1d son) and self-diagnosed as diabetic. My primary care physician was quite sure I wasn’t diabetic, perhaps because I had had an A1c? (might have just been urine test) just before the cramping symptoms began, and it was negative. But he agreed to test me. My A1c was 13.7. By the third day of insulin therapy, the cramps were gone, though I still get threats of mild cramps from time to time. Unfortunately, the 15 months of undiagnosed T1d left me with some peripheral neuropathy, and that hasn’t gone away. I now have a wonderful Tandem pump and a new primary-care physician. 🙂 BTW, I was diagnosed at age 72, I think.
Rudy
The leg cramps were the worst. My teeth suffered due to how sick I was for a long time. I love to talk to children who have been recently diagnosed to let them know everything will get better.
After being Type 2 for several years once I had a second A1C in the low/mid eight’s I was referred for further evaluation. It was a couple of months before I was confirmed T1D by blood tests.
I was 73 when diagnosed T1D.
I said I do not remember, but according to what I’ve been told by family members it was less than 1 week. My mom recognized the signs and took me to the doctor. I was only 2 years old at the time.
I was 9yrs old so I don’t really remember. I do remember my mom telling me to eat more as I was losing weight (about 15 pounds off of a non-overweight child). I remember telling her I was eating as I was. I also drank quite a bit and had to use the bathroom during the night. I never gave any thought to that since I was just a kid. My third grade teacher asked me if I felt okay as she said I didn’t look well. I actually felt fine and was playing with friends as normal. Not sure how many weeks of losing weight and drinking excessive amounts lasted, but then one day it just hit me. I was so sick that I went to the school nurse and my parents picked me up and took me to the hospital. I lapsed into a coma (for a day I believe) and stayed in the ICU for a few days and then finished out the week in a regular room.
In 1968, there was no T1D designation. I was always thirsty and never passed a bathroom. and was losing weight. My girl friend suggested I visit her doctor who specialized in Diabetes care. He started me on Diabinese which didn’t work. He was associated with the VA, which he got me a visit, I was excepted and went into the VA hospital for a month, and they put me on Insulin (PZI, U-100).
Years, I was 70 lbs in 7th grade. My ribs stuck out. My parents made my sister check on me to make sure I was eating, they thought I was anorexic. I was drinking water like crazy. Played sports but would pass out during practice. Would get dizzy and lethargic and my mom thought I was pretending to get out of housework. It was a very stressful time mentally and physically. My parents finally agreed it must be worms? I thought they were insane and I was dying. They took me to the doctor and was told to go to the hospital. I had every symptom. Education was not good at that time. Vary glad it has gotten better over time!
I don’t recall the time period, but would estimate a couple of months. It was back in the mid-60s and I was in first grade, so the memory has faded. I would guess a couple of months, because doctors initially thought I had leukemia. I remember the symptoms and the testing though….. after 56 years of blood draws, I still can’t watch. LOL!
I was pregnant and just thought it was because of that.