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Before you were diagnosed with type 1 diabetes, did a healthcare provider tell you that you had prediabetes, or inform you that you had elevated blood glucose levels?
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Pre-Diabetes did not exist in the early 70s.
I was diagnosed with pre-diabetes through glucose tolerance tests in 1967 when I was in the 7th grade. I went to the Diabetes Clinic at UAB for 6 years until my Type 1 was officially diagnosed in 1973. They didn’t know how to define me because I didn’t seem have “Juvenile Diabetes”(name for Type 1 in those days) nor did I have “Adult-Onset Diabetes”.
1956, I was 4 yr 7 mos old. My parents didn’t know any Type 1s only T2s. My grandmother first told Mom I should be tested after I kept asking for more water. GP diagnosed. Tried diet first but who knows why. Ended up with Dr. of Internal medicine. Begun immediately on insulin at home. Was not hospitalized.
I was not told this, but in retrospect a CMP 6 months prior to diagnosis, showed a random BG of 180 mg/dL, which is abnormal. This was part of my clinical progression to DM1.
I had gestational diabetes in 1987 and was told it was a precursor to Type 2 and if I kept my weight down, ate healthy and exercised, I could avoid Type 2. Four years later…Type 1. 🤷🏼♀️
I was 6 years old when diagnosed in 1945. My family had never heard of diabetes, my doctor knew almost nothing about it.
I was told they were a little high and to exercise more and eat less. A little over a year later, I was misdiagnosed Type 2 and again told to eat less. My A1C was 13. I realized this was nonsense, threw a public fit, they tested for GAD and C-peptide, and discovered I was actually LADA. This scenario happens to too many adults who are autoimmune and insulin dependent.
Each new medical professional I encounter must be convinced that I really am not Type 2 and that I do need insulin.
I totally get your statement about convincing a new-to-you HCP that yes, indeed I have T1D. Granted I was 30 when I was Dx’d with T1D – within 6 months of a strep throat illness, (I’ve posted before about my initial Dx with T2D cuz I was 30 years 0ld – never mind I had no risk factors for T2D). ANyway, when it happens now, I tell them that 1) people don’t have to be youngsters to get T1D, I read somewhere that 40% of new Dxs of T1D are adult – hence the name change). And 2) even if you get T1D as a child, with access to healthcare etc they get to grow up to be adults with T1D.
I was diagnosed at 57 years old — for a week as T2 until that was found to be wrong and T1 was confirmed. When I saw my OB/GYN a month later, I learned that she had been doing A1Cs for over ten years—and it had been 4.5 the previous October and all other years. That next August, it was 12.75 and my first fingerstick was 568.
I was diagnosed as pre-diabetic in 1967 after glucose tolerance tests. Was not diagnosed as Type 1 and started on insulin until 1973.
Diagnosed in 1977. Felt perfectly healthy prior to diagnosis. Although, I did experience some light headedness for at least a year prior. But never complained to the doctor. Got sick with flu-like symptoms, and immediately afterward started drinking water continuously. It took all my energy to walk up a flight of stairs. Went to doctor, was diagnosed diabetes immediately. Tried oral medication. After a few days, determined it was Juvenile Diabetes, later known as Insulin Dependent Diabetes, now known as Type 1 Diabetes.
I have always thought that “insulin dependent” diabetes should have long ago been renamed “insulin deficient” diabetes because EVERYONE in the human race is insulin dependent whether they have diabetes or not!
At age 66 I was called back after routine blood tests at an annual physical because A1C was 8.2 After retesting with a finger stick, the doctor told me I was type 2 and put me on Metformin. That made me quite sick, though I had been just fine before. Even though my internist called type 2 his “bread and butter” and said he didn’t need to refer me to an endocrinologist, I decided to find one anyway. That doctor suspected type 1 immediately and tests confirmed LADA a couple of days later. Full blown type 1 within 2 1/2 years.
No, it was 1962, I was 11, and it was pretty rapid onset.
No doctor ever mentioned prediabetes. I did have on doctor who was very progressive and I had multiple fasting blood tests and all were normal. He told me keep being vigilant. At that time I was in very good shape, worked out everyday and had 13% body fat.
Never. I was a healthy 27 yr-old in grad school. Had a nasty cold in October, a couple weeks before my 28th b-day. That cleared up, but then I started feeling weird symptoms that kept getting worse. At first just feeling “off,” but increasingly headachy, nauseous, like a hangover only not having drunk anything, and it didn’t go away but kept getting worse. And then I seemed to be having some weird bladder issue because I was peeing all the time and so THIRSTY. By December my wife had become sufficiently concerned to get me to the Dr, who came back from the blood test and said “Well, you’re the proud owner of diabetes,” and added that I was in near-DKA. “Probably your wife wouldn’t have been able to wake you up tomorrow morning.” So altogether a pretty fast progression. My dr described the whole “type” designation and said it was by no means unlikely to get the “juvenile” kind at my age, but the change of terminology hadn’t been instituted yet. So my record reads “acute diabetes mellitus, juvenile-type” as they said back then. Whole progression took just 6 weeks or so.
I was diagnosed in 1963, after two months of increasingly severe symptoms. So, it was obvious at the time. I did not see a physician unless I had symptoms of illness.
Was running 3-5 miles 3 times a week, was at optimum weight, no history in family. Symptoms came on pretty rapidly at age 40. Diagnosed first with type 2, then with LADA, when I, like the other person’s experience, went to an endocrinologist on my own.
In 1954, there was no testing for pre diabetes never mind diabetes! ALL THERE WAS A URINE TEST TO REVEAL IF YOU SPILLED SUGAR IN YOUR URINE!!!
My mother recognized I was constantly drinking water. So, she took me to the doctor!!!
I had a bad flu bug when I was ~14 years old(mid 70’s) lost about 10lbs then was diagnosed with elevated BG.
I was put on a very restrictive diet with no insulin for about a year. Then a second doctor said I definitely had T1D and needed to be hospitalized and put on insulin that day. Amazing that I lasted about one year before starting on insulin. Very strange treatment program and I’m sure this wouldn’t happen now.
Daniel – your experience of the doctor not putting you on insulin right away sounds like you were in the “honeymoon” phase of T1D where surviving beta cells are still cranking out some insulin before they die out completely.
I was doctoring with a painful frozen shoulder and saw a physical therapist, OB-Gyn, massage therapist, a chiropractor, and an orthopedic surgeon. Not one of these specialists ever tested or mentioned diabetes, probably because I was 49 going through menopause and thin. The change of life was huge for me!!!!! My T1D husband is the one who tested me with his meter and diagnosed high sugars. He called his Endo Dr. who put me on insulin over the telephone with an appointment following. The frozen shoulder became history too, until the other shoulder did the same. I had to add insulin before the lunchtime meal and now both shoulders are fully recovered.
I don’t think that diagnosis existed that long ago!
I said N/A because I was diagnosed in 1970, before “prediabetes” was a thing.
I was diagnosed at 9 years old back in 1955. We did not know what diabetes was back then. I had to have a physical for a summer camp and that is how they found my T1D. I was sent down to the Virginia Mason in Seattle two days after diagnosis. Should have been sent immediately. We have learned so much since then.
Other. Dx’d with “juvenile sugar diabetes” in December 1962 after having had the mumps several months earlier. In Nov/Dec that year I was progressively experiencing extreme fatigue, weight loss, and excessive thirst with constant need to pee all the time. I recall my mother being told that blood work showed my blood sugar was extremely elevated and I needed to go into the hospital or I could die. No such thing as “pre-diabetes” or even a distinction between T1 or T2 in those days.
I also had mumps before onset, supporting idea of a connection of diabetes Type 1 and a viral infection. This is the first time I’ve heard another Type 1 mention mumps.
Me too, I had mumps a few months getting the classical T1 symptoms.
I too had mumps several months prior to being diagnosed at age 10
I came down with mumps after I was discharged from the hospital at T1D diagnosis. I had had a flu-type illness earlier.
I didn’t have mumps, but I did have a severe case of chicken pox about 8 months prior to being diagnosed.
I was told I was hypoglycemic (diagnosed in the 1980’s)and instructed to delete all sugar from my diet
There’s no such thing as prediabetes. My husband took me to his doctor, seemed to have the flu. An older somewhat old fashioned physician. He did a blood glucose, not aware that I’d ever had one. It was high. Said anyone can have a high blood glucose from an infection. Come back. I didn’t. Contracted another flu soon after a visit to my gynecologist. Like most young women she was my primary care. Contacted her, she said you have the flu, probably got it from me because I had it. Symptoms became increasingly worse including drinking gallons of water, she referred me to a primary care who diagnosed me.
I was diagnosed in 1976 while in my late 20’s. I had lost 13 pounds (from 120 lbs to 107 lbs) in 2 weeks time and experienced excessive thirst and frequent urination. Since my father had been diagnosed in 1953, I was aware that my symptoms indicated I might have diabetes. My diabetes was confirmed when I saw an endocrinologist and a GTT was done. Within a month of the onset of the symptoms, I was on insulin. Prior to those symptoms, my blood work had shown no abnormal glucose levels.
I was diagnosed at 18y/o after an uneventful physical exam just a couple of months prior. My fasting glucose lab result was 121 mg/dl, which was 1 mg/dl over normal upper limit at that time (1995). (Later discovered from pediatrician records that my fasting BGs before then had been in the mid-high 60s). Two months later, I had some increased thirst/urination, leg cramps, sleepiness after lunch, and had lost 10lbs I couldn’t afford to. My mom suspected diabetes. We picked up urine test strips at the local pharmacy and did a family experiment. Mine was the only one that turned colors. Return to doctor and lab showed a fasting BG in mid-300s. Luckily we caught early before DKA.
My mom had a similar presentation 12 years later, when BG discovered to be in mid-300s at annual checkup.
My onset was very acute. I was 6 and it was more than 40 yrs ago. I remember though that I was diagnosed with metabolic ketosis and I used to be given sugar for that….maybe it was T1D instead.
I was in perfect health 6 months prior to my diagnosis. Unfortunately I am nearly 99% sure that my pancreas began shutting down shortly after receiving a Yellow Fever vaccination in 1997. I am probably one in a million that had an autoimmune response to this vaccine. I was 47 years old at the time and up until that point was very active, perfect weight and did all I could to have good health.
In the 1940’s Dad had LADA T1 so my 4 brothers and I knew it was destined to be at least 1 of us. In 1964 I had been experiencing symptoms, constant thirst, frequent urination, I lost 27 lbs. The only Testing was for Urine Glucose, the TesTape turned black in seconds
Two days before my 40th birthday in1981, I was sent for a five hour fasting glucose test by my GP because I had asked why when I got hungry, I was drenched, ashen, and disoriented. This was something new. I had flu that spring and months later this started.
They stopped the test after three hours when the range was 35-350.
I was put on an 1100 calorie diet and told to lose 25 lbs. I lost 30 lbs, kept it off, stayed on that maintenance diet for five years.
After an annual A1C of 12, I was put on insulin. My search for an endocrinologist, who knew what to do, took me to OHSU. I’m 75, use a CGM, go to the gym four times a week, walk 1-3 miles a day, am seven years older than my brother was when he died of complications from T1D at 67.
My answer was “no”, but I remember during one of my pregnancies having one test result that showed high BG. It was 15 years later that I suddenly found that I had diabetes with a fasting 229.
Footnote to my “No” answer: I was diagnosed with T1D when I was 7, 56 years ago. All of the stuff mentioned in the question was not really done then.
I was age 5 upon dx.
I was 12 in 1969. Was thirsty, could not gain weight, etc. First went to community doctor and then Childrens Hospital in Oakland Ca where I stayed a week learning how to take insulin(pork I think), test my urine, clean my needle(glass), etc.
No. I was dx at the age of 8 in 1955 after having chickenpox, measles and bronchitis within three months. My pediatrician tested my urine then sent me to the hospital where I was immediately given insulin. As others have commented, prediabetes was not an accepted medical term at that time.
I see a couple comments below suggesting some had issues with hypoglycemia before T1D diagnosis. I did also. In my case, the hypoglycemic spells occurred about 5-6 years before my T1D diagnosis. In retrospect, I’ve wondered if this could have been an early sign of beta cell dysfunction. Would be interested if others had this experience.
Quite the opposite. My family was told that, despite my obvious symptoms, children do not get diabetes. Either I was playing games, or my mother needed counseling. The doctor refused to test my urine.
Same here, Cynthia!
Unbelievable
I am always amazed when I hear about people who are constantly misdiagnosed (or told children don’t get diabetes!). Diabetes is not a rare disease so I would think any doctor, even those who are not endocrinologists, would know basic symptoms and have blood tests done to rule out diabetes.
Love these comments and history. I chose “NO” because my original diagnosis was TYPE 2, 3 1/2 years change to TYPE 1.
Several years previously I remember hypoglycemia and while I drove over the road major fatigue (was diagnosed T2 a year after deciding truck driving want for me). After 3 years was “diet/exercise” had to find those medical trials because doc I was seeing at that time (an endocrinologist) kept saying I was too old to be a T1 or need insulin. A great honeymoon period!
From my research TYPE 1 is generally an acute diagnosis (the speed of onset of symptoms) whereas TYPE 2 generally takes longer for problems to occur (most don’t realize the symptoms, also might be due to complications).
Tried to tell my initial doc he could call me anything I felt I needed insulin .
My answer is an emphatic NO. My diagnosis at age 32 came like a bombshell. My doctor knew the diagnosis immediately. Then I learned that all the symptoms I’d been having for months that were simply “weird” to me were actually T1 diabetes. Extreme thirst, constant urination, unexplained weight loss. For the first time in my life, I was shocked by how little I weighed. I called my GP for a physical and was trying led they were scheduling physicals for September. Since it was only May, I explained why I thought I needed a physical, the unexplained weight loss. I was told that I could come in the next day.
Learned to inject by trying it on an orange first. The insulin was pork, the syringes plastic, and you tested your urine to see what your blood sugar was like three hours before.
On the first day on insulin, I my first hypoglycemic reaction and called the nurse who came to my office with a bottle of juice. What a ride it has been for the last 41 years.
Diagnosed in 1963 at age 20 as a juvenile diabetes patient. As many have answered
before, nobody used the term pre-diabetes then. I had developed the high thirst, frequent urination, weight loss, etc. over a few months. One day I was playing basketball with a friend (another 20 year old) when I described these symptoms. He responded, “you have diabetes.” I went to the college library and pulled the Encyclopedia off the shelf and there I read my list of symptoms. My next stop was the student health center. I announced to the doctor there that I had diabetes. I did not believe me, but he did run a urine test (using expired test strips). He followed that with a blood test at the local hospital lab. My BG was reported as “off the scale, but I was immediately put on insulin and called an over-age juvenile diabetic.
Caught it by accident, health study for something else screening showed elevated glucose, in august, went to doc, kept an eye on it during the month, doc said I’m admitting you for additional testing in September but things took a turn for the worse the week before and went to ER with a sugar over 600. That was 30 years ago.
I… well, my Mom… could barely get the doctors (plural) to acknowledge I was sick at all, let alone diagnose “pre-diabetes” (which, yes, as others have said, was not a “thing” back when I was diagnosed.)
And that was despite having all the classic and obvious symptoms.
I had had the flu and just didn’t get better. I was in the hospital for a month… not sure why I got the long stay there… but, was released on Christmas Eve. Best darn Christmas present ever!!
No warning signs at all. At age 19 I started feeling really awful. After a couple of weeks my mother forced me to make a doctor appointment. I got there, peed in a cup and he told me to get to the ER immediately.
I think like most people with Type 1, especially those diagnosed as adults, you might not really get a “pre-diabetes” diagnosis unless you happen to get labs done at the beginning. With me at least I went from feeling great to nearly dying in about 6 weeks.
I had been put on prednisone for a short period of time and was taken off it because my bs went up. That was a year or two before being diagnosed with diabetes. I also had gestational diabetes and toxemia about 10 years before.
No, I was 10 when diagnosed. No such thing as prediabetes in 1967. And up until I became ill, I had never had blood drawn before.
I have been followed for years because my mom got TD1 out of the blue, at age 58. My blood glucose was consistently between 93- 103 for 20 years. Then I landed in the ER over New Year’s weekend in full blown DKA. I was just a month shy of 68. I had tried to see my primary care physician pre Christmas, but the office was restructured with and agency that wouldn’t schedule appointments until mid January. They sent me to their walk-in clinic who took my blood pressure and temperature and sent me home, even though I begged for blood work because I did not feel right. They did not even do a standard urine test. I was the last appointment at 7:30 on Dec. 27 and they wanted to go home. I get it, but I was passed off. I did not think I has T1D…. I was in I.C.U. For several days and that group had little knowledge of T1D. I hope to never go there again and try to tightly control my BG.
At the age of 9, it happened suddenly. Mom noticed the excessive drinking and urination along with weight loss and generally not well. She caught it before DKA hit.
I had a parent that had Type 1 Diabetes and I prety much new how the rest of my life was going to be like. I didn’t like it at all and I’m on year 33 and I’m still doing pretty well. I don’t like being a Type 1 Diabetic but I have had many other issues with my life. I have had a Traumatic Brain Injury at 98% brain dead and Brain Surgery in April 2021 and me still surviving only one thing in my life is God has something for me to be alive and I have been with God and I will not turn away from God. I believe that I owe God for my life and I will give him whatever I need to do with him. Since I have been with him, my life is much better than before my TBI. He is the best in everyone’s life in my opinion. God Bless to all. Amen
I chose “other”, as I was diagnosed with type 2 diabetes and immediately given medication for this erroneous dx. Within a month or so it was corrected.
Other. I had a GYN appt with a new doctor about 4 years before diagnosed with T2. I had eaten a bowl of cereal before going – high in sugar as most are. They had me do a urine sample at the spot which no GYN had ever done before or since. And they immediately had the results and asked me what I’d had for breakfast. I said cereal. And they said: what, 4 bowls?! I said no and they then sent me for a fasting test. I never got the results and never called for them, assuming I’d be notified if there was anything wrong. About 5 years later I was going through a computer conversion at work, working about 55 hours a week and highly stressed. I was extremely thirsty, urinating a lot, had eyelid twitches, lost from 120 down to 110lbs. I knew I had it. Went to my primary. I was 420. He diagnosed me as T2. Put me on pills. Went through the education where they scare the B-Jesus out of you. Pills did nothing. A1C was at 10. I knew I needed insulin – how I’m not really sure. I told my primary I wanted an Endo, that I felt I needed insulin. He told me he could prescribe it. I said to myself: why would I want you in that role when you can’t see I’m not getting better? I called 4 different doctors and no Endo was taking new patients. I was about to go to the ER and tell them to prescribe it when I friend said she knew one and called him for me. He had just had a cancellation and took me. He was very progressive and eventually gave me a pen and then convinced me to try the pump. That was 12 years ago, 20 years since the T2 diagnosis and I have no other health issues at the moment at 63 years young. My eye doctor congratulated me on keeping my eyes healthy. I’m grateful for insulin. Beats the alternative.
Forgot to mention that I later called about the results from the GYN fasting test. It was fine they said but I thought it might have been a sign of what was to come.
Other. Sort of. My company changed medical insurance plans, and there was a requirement that a person would be sent to my house to do a rudimentary physical exam. When he did a glucose test, I “pinned the meter”. That was my first clue I had diabetes.
I am 54 years old and was diagnosed when I was 7. I had a pediatrician who told my mom that I could eat what ever I wanted as long as I took a shot every day. There was no real education for us.
I was 10 years old. I was suffering from extreme thirst and peeing a lot and I only weighed 49 lbs. My Mom knew something was wrong and called the Dr who immediately sent me to the hospital.
Yes, I had a pre employment physical and the healthcare worker checked my glucose and it was elevated. Before I was diagnosed as a diabetic
I had just turned 16, so there was no hint of T1D on the horizon.
No, I was 9 yrs old at the time of diagnosis so blood sugar levels weren’t being tested on me as a regular part of medical appointments, especially since I wasn’t an overweight child.
I was only 2 1/2 years old. I don’t think my parents were ever told I was “prediabetic,” but I can’t say for sure. I’m not even sure that anyone at the time was diagnosed with prediabetes in 1964!
I am very curious how my diagnosis story would have been different if my father hadn’t been diagnosed with T1D before I was born and so the whole family knew (including me, because he told us kids *constantly*) what symptoms to keep an eye out for. As it was, I essentially diagnosed myself. We confirmed my BG was high (~300) at home with my father’s glucose meter, and the next day we went to the doctor for the “official” diagnosis.
I laughed when I read this question. In 1966, prediabetes wasn’t a word! LOL! I was very young and was symptomatic, so diagnosis and labs showing BG of 741 all happened at the same time.