Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.
I’ve had what I know now were symptoms for years, to include fatigue, hunger, thirst, frequent urination needs (pee’d a lot), and serious mood swings. Didn’t feel great, was under stress worldwide and personally; but might have been attributed to diabetes.
Yes. The Summer of 1977, I was very sick, flu-like symptoms for what seemed like several weeks to a month. Then the diabetes symptoms hit me hard; extreme thirst and exhaustion. I was diagnosed within a week of the T1D symptoms starting, in July, 1977.
Like Lawrence, I was sick with what I assumed was the flu about a week or so before the onset of symptoms (extreme thirst and peeing too often). This was in January/February 1976.
I was 9 years old. At first I just started losing weight and peeing alot but I felt fine. My 3rd grade teacher asked me if I felt okay and I said yes, as I did feel fine. My mom told me to eat more as I had lost quite a bit of weight (about 15 pounds and I wasn’t a chubby child), but I said I was eating. Then one day at school, I felt miserable and went to the principal’s office. My parents came to pick me up and took me to the emergency room. Right after giving a urine sample, I lapsed into a coma. Thankfully I woke up the next day.
Yes. My mother had just died. The church ladies were bringing donuts and goodies every night. It was around Halloween. I was seven. I started wetting my pants, coughing, and behaving ‘strangely’. The doctor put me on antidepressants and antipsychotics because he thought I was acting out because of grief. They also prescribed cough syrup. My last memory was being wheeled in a wheelchair into an elevator, holding the bottle of cough syrup and passing out and dropping it to the floor. I said, “I’m sorry!” and then I crashed. This was 1969, so I’m sure the drugs were powerful. I lapsed into a coma on Halloween and it took them at least two days to figure out that it was my blood sugar.
I had a bad flu bug for about a week at 14(1977). After that weight loss, frequent urination and insatiable thirst. My family doctor put me on Diabeta(glyburide). I continued to loose weight until a second doctor admitted me to hospital and started insulin immediately. I gained about 15 pounds over a two week period and needed new clothes. What a trip, I don’t think this would happen nowadays at least I hope not.
Yes, In 1970 I lost 10 kilo in two weeks. Passed out on the spring practice High School football field. Prior to passing out, told the coach that I was sick, he said “go barf baby.” I had vision problems too at that moment. Our GP knew right away and sent me to UCLA medical. They set me on the right path. Thanks Dr. Neil Litman
I was very sick had lost 25 lbs in two weeks excessive urination and thirst could barely walk across a small room when went to Dr was admitted to icu for four days with severe dka that happened four years ago 😳 has inspired insane blood sugar management as am terrified to go high again didn’t hurt but almost took my life.
I was 42. I knew I had it before being diagnosed. I was run down because of a work project and was ignoring all the classic symptoms except I couldn’t ignore dropping down to 110 lbs at 5’6”. They thought I was anorexic. They diagnosed T2 wrongly at first.
Me too – mis-dx’d with T2 cuz I was 30 years old and they were just changing the names. I went from 110 lbs working weight (professional ballet dancer, 5’6″) to 100 lbs. Didn’t know anything about D of any kind – didn’t know anyone with any type of D and no family members with D (clue for the initial MD, ya think?!) I had had strep throat for about 2 weeks prior, so maybe that was a trigger. I remember the D symptoms getting worse, went back to the doctor, got scolded cuz I obviously wasn’t doing my job (watching my weight and eating better) and so for punishment I was told “I’m gonna put you on the needle”. I was Rx’s 15 units of NpH once a day.
After a month or so, found by a neighbor in a coma. While she was a gossip and rather ditzy, she was honest and so had a key. She had enough sense to grab her address book to call my day job to say I wasn’t coming in. Lucky for me my day job was with a big city Fire Dept/EMS. They instructed her on a sternum rub, and told her to call 9-1-1. She thought I was too sick for 9-1-1. The Battalion Chief in charge of EMS was there, told her when you are too sick for 9-1-1, you call the coroner. They dispatched from HQ.
Aside from the medical ramifications of mis-Dx there is also the scolding abuse. When I came out of the coma, during rounds the residents scolded me for not taking care of my D – assuming as many did, that I had had it since I was a child.
The attending spoke up and said look at her chart. She was Dx’d in the Emergency Dept a week ago. Then went on to educate about the name changes for the types of D.
Run down tired all the time, sick to my stomach, loosing weight rapidly – then my vision started to go. I went from 130lbs to 100lbs at 5’5” and when I went to the doctor could no longer see the numbers to dial the phone.
At first, my family and I thought I was having a reoccurring cold, then flu. I finally got so sick after throwing up in a store bathroom, my mom took me to the emergency room. This had gone on for about 5 months and I spent a week at the hospital, which has turned into 50 years (next year) of having T1D.
I was diagnosed just before my 12th birthday in 1961 on a day following three days of rigorous physical fitness testing at school for which I could hardly participate due to weakness, extreme thirst, extreme urination, and I had also lost weight down to 86 pounds. They put me in the hospital for a week and don’t really know if I ended up in DKA but do remember that I slept all the time and had a voracious appetite. it was probably coming on certainly for months, if not years as I hadn’t really been able to participate in the usual physical activities of kids that age.
Yes, like I had the flu and didn’t want to eat…just drink and pee and sleep.
I thought I had a severe UTI – finally going to the hospital as I was traveling across the US. Sat in the waiting room for an hour, blood draw and I was put in intensive care within 5 minutes of them getting results. My BS was 940 and my body was shutting down.
I mean, this is the thing that bugs me about using “LADA” designation, which is only kind of informal anyway. The description always seems to include a very gradual onset, like years sometimes. For me it was maybe six weeks from feeling just weirdly a little “off,” like a mild hangover without having drunk anything, to fatigue, nausea, headache, the escalating pissing/thirst spiral (that was the ‘tell’ though I didn’t know it)–to the point of wife saying “we need to get you to a doctor.” Who said I was about 24 hrs from DKA (“Your wife probably wouldn’t have been able to wake you up tomorrow morning”).
Re-reading this, I see the question is aimed at whether there was a triggering illness that maybe set off the auto-immune response. That’s a big YES. This whole other set of symptoms–vague at first–started within a week of getting over a nasty cold. I remember at the time thinking “Damn, I just got OVER a cold! Unfair!” It sure was…
I was in severe keto acidosis, but fought friends and family about seeking medical care, 21 year old airman recently returned from TDY in Korea. Ended up passing out and being rushed to the hospital where the T1D was diagnosed.
Yes. It was 1962 and was 8 years old. I had the mumps in the Fall that year and in late November became increasing ill with polydipsia, polyuria, weight loss, loss of energy and extreme fatigue. Was tested for anemia, leukemia and finally diabetes.
I was diagnosed November 1968 and there was no such term, T1D. The only major problem I had is going to the bathroom and urinating a lot then going straight to the water fountain and satisfying my thirst. Typical person with Diabetes, but not diagnosed yet.
When I was ten years old my whole family had the flu. This was in 1972. After everyone else were recovering, I was getting worse. I was more tired and didn’t wake up to use the toilet during the night. I didn’t even wake up after wetting the bed and the amount of urine was greatly increased as well as the frequency. My thirst could not be quenched. I was falling asleep in school, during activities, while eating, etc. I lost my appetite and lost a lot of weight. I was vomiting the little bit I did eat. My mind became muddled and I was very emotional. I cried alone. I knew I was dying and I told my mom that I felt like I was going to go to sleep and not wake up. Mom took me to three pediatricians all three thought I was suffering from severe depression! My grandfather called his doctor who saw me right away. He did a lot of tests. He had us wait in his office for the test results. After what seemed like a whole day, he came in and said, “She’s right…right now she’s dying BUT there’s a treatment!” I wasn’t happy about my having to give myself shots every day for the rest of my life, but I was happy I could have the rest of my life! This Dr was great! He helped me learn how to live a healthy lifestyle with T1D. He was very positive about life with T1D. I’m 62 years old now and I’ve had more terrible doctors than great ones. The one I have now is wonderful!
No, I went to the eye doctor in August 1994 for a routine exam and got a new eyeglass prescription, as usual. 6 weeks later, I went to get my learner’s permit and failed the eye test. Went back to the eye doctor, got another new prescription. 3 months later. I was having trouble reading the blackboard in school, so we went back to the eye doctor. He noted that I have a strong family history of T1D (my mother and maternal grandmother both had it) and sent me fa glucose tolerance test. My dad took me to the hospital’s outpatient lab a few weeks later and my fasting glucose was 380. They couldn’t run the 4-hour glucose tolerance test because of the risk of putting me in DKA .
I was sick in the month leading up to my diagnosis. When it started with the thirst, I thought it was part of a cold that wouldn’t go away. Then came the weight loss. After that came the nausea, which I initially attributed to not being able to handle French food, but then we thought it was a stomach flu.
My son had a pretty bad ‘flu’ in February, but since it was 2020, maybe it was Covid(?)
In the next 6 weeks, he dropped weight, drank tons of juice, peed the bed which was the last straw. I stayed up all night doing research and brought him to see his PCP in the AM and his sugar was over 600. We spent 6 hours in the endocrinologist’s office and they sent us home-no hospitalizations during Covid. He was 14.
Yes. My whole family had had the flu, but I didn’t get better. I had just turned 5.
I had allllll the classic symptoms of diabetes after that.
I was taken to multiple doctors over a few days who all said I was lying and that I was just worried and a hypochondriac.
Finally, a senior doctor recognized that I was very ill and I needed to go to the hospital which was a little over an hour away.
While the nurses there were nice, I was alone a lot (ie no family).
After I was home and dealing the best I could, the doctors I had were mean and unhelpful. They treated me very poorly.
Anyway, I’m straying from the point… which is, yes, I had the flu before diagnosis!
I had Coxsackie B virus in February, 1975 with a very high fever. I was diagnosed in May with the classic symptoms of extreme thirst and having to pee every 10 minutes.
I do not remember being “sick”, but rather very, very thin and had frequent urination. It was 58 years ago….. some of the details have faded from memory LOL! (But not the terror of having blood drawn at age 6… ugh!)
I’ve had what I know now were symptoms for years, to include fatigue, hunger, thirst, frequent urination needs (pee’d a lot), and serious mood swings. Didn’t feel great, was under stress worldwide and personally; but might have been attributed to diabetes.
Yes. The Summer of 1977, I was very sick, flu-like symptoms for what seemed like several weeks to a month. Then the diabetes symptoms hit me hard; extreme thirst and exhaustion. I was diagnosed within a week of the T1D symptoms starting, in July, 1977.
Yes, 12 years old and my parents figured I had the flu, kept on giving me orange juice. End up in the ER in a coma.
Like Lawrence, I was sick with what I assumed was the flu about a week or so before the onset of symptoms (extreme thirst and peeing too often). This was in January/February 1976.
Same thing for me. Weirdly also the same year.
I had mononucleosis and in a couple of months I was diagnosed with T1D.
I was 9 years old. At first I just started losing weight and peeing alot but I felt fine. My 3rd grade teacher asked me if I felt okay and I said yes, as I did feel fine. My mom told me to eat more as I had lost quite a bit of weight (about 15 pounds and I wasn’t a chubby child), but I said I was eating. Then one day at school, I felt miserable and went to the principal’s office. My parents came to pick me up and took me to the emergency room. Right after giving a urine sample, I lapsed into a coma. Thankfully I woke up the next day.
Yes. My mother had just died. The church ladies were bringing donuts and goodies every night. It was around Halloween. I was seven. I started wetting my pants, coughing, and behaving ‘strangely’. The doctor put me on antidepressants and antipsychotics because he thought I was acting out because of grief. They also prescribed cough syrup. My last memory was being wheeled in a wheelchair into an elevator, holding the bottle of cough syrup and passing out and dropping it to the floor. I said, “I’m sorry!” and then I crashed. This was 1969, so I’m sure the drugs were powerful. I lapsed into a coma on Halloween and it took them at least two days to figure out that it was my blood sugar.
I had a bad flu bug for about a week at 14(1977). After that weight loss, frequent urination and insatiable thirst. My family doctor put me on Diabeta(glyburide). I continued to loose weight until a second doctor admitted me to hospital and started insulin immediately. I gained about 15 pounds over a two week period and needed new clothes. What a trip, I don’t think this would happen nowadays at least I hope not.
Yes, In 1970 I lost 10 kilo in two weeks. Passed out on the spring practice High School football field. Prior to passing out, told the coach that I was sick, he said “go barf baby.” I had vision problems too at that moment. Our GP knew right away and sent me to UCLA medical. They set me on the right path. Thanks Dr. Neil Litman
I was fine, but on day of diagnosis, I was in DKA, so I should’ve answered yes
I was very sick had lost 25 lbs in two weeks excessive urination and thirst could barely walk across a small room when went to Dr was admitted to icu for four days with severe dka that happened four years ago 😳 has inspired insane blood sugar management as am terrified to go high again didn’t hurt but almost took my life.
I was 42. I knew I had it before being diagnosed. I was run down because of a work project and was ignoring all the classic symptoms except I couldn’t ignore dropping down to 110 lbs at 5’6”. They thought I was anorexic. They diagnosed T2 wrongly at first.
Me too – mis-dx’d with T2 cuz I was 30 years old and they were just changing the names. I went from 110 lbs working weight (professional ballet dancer, 5’6″) to 100 lbs. Didn’t know anything about D of any kind – didn’t know anyone with any type of D and no family members with D (clue for the initial MD, ya think?!) I had had strep throat for about 2 weeks prior, so maybe that was a trigger. I remember the D symptoms getting worse, went back to the doctor, got scolded cuz I obviously wasn’t doing my job (watching my weight and eating better) and so for punishment I was told “I’m gonna put you on the needle”. I was Rx’s 15 units of NpH once a day.
After a month or so, found by a neighbor in a coma. While she was a gossip and rather ditzy, she was honest and so had a key. She had enough sense to grab her address book to call my day job to say I wasn’t coming in. Lucky for me my day job was with a big city Fire Dept/EMS. They instructed her on a sternum rub, and told her to call 9-1-1. She thought I was too sick for 9-1-1. The Battalion Chief in charge of EMS was there, told her when you are too sick for 9-1-1, you call the coroner. They dispatched from HQ.
Aside from the medical ramifications of mis-Dx there is also the scolding abuse. When I came out of the coma, during rounds the residents scolded me for not taking care of my D – assuming as many did, that I had had it since I was a child.
The attending spoke up and said look at her chart. She was Dx’d in the Emergency Dept a week ago. Then went on to educate about the name changes for the types of D.
Run down tired all the time, sick to my stomach, loosing weight rapidly – then my vision started to go. I went from 130lbs to 100lbs at 5’5” and when I went to the doctor could no longer see the numbers to dial the phone.
At first, my family and I thought I was having a reoccurring cold, then flu. I finally got so sick after throwing up in a store bathroom, my mom took me to the emergency room. This had gone on for about 5 months and I spent a week at the hospital, which has turned into 50 years (next year) of having T1D.
I was diagnosed at age 18 months with severe diaper rash and excessive thirst.
Hospitalized for a week in 1956.
I was diagnosed just before my 12th birthday in 1961 on a day following three days of rigorous physical fitness testing at school for which I could hardly participate due to weakness, extreme thirst, extreme urination, and I had also lost weight down to 86 pounds. They put me in the hospital for a week and don’t really know if I ended up in DKA but do remember that I slept all the time and had a voracious appetite. it was probably coming on certainly for months, if not years as I hadn’t really been able to participate in the usual physical activities of kids that age.
Every new generation of eyes sees a new version of our diabetic galaxy.
So much of the diabetic condition feels like a blatant violation of the eighth amendment anyway. 🤕👳♀️
Cruel and unusual punishment.
Yes, like I had the flu and didn’t want to eat…just drink and pee and sleep.
I thought I had a severe UTI – finally going to the hospital as I was traveling across the US. Sat in the waiting room for an hour, blood draw and I was put in intensive care within 5 minutes of them getting results. My BS was 940 and my body was shutting down.
I mean, this is the thing that bugs me about using “LADA” designation, which is only kind of informal anyway. The description always seems to include a very gradual onset, like years sometimes. For me it was maybe six weeks from feeling just weirdly a little “off,” like a mild hangover without having drunk anything, to fatigue, nausea, headache, the escalating pissing/thirst spiral (that was the ‘tell’ though I didn’t know it)–to the point of wife saying “we need to get you to a doctor.” Who said I was about 24 hrs from DKA (“Your wife probably wouldn’t have been able to wake you up tomorrow morning”).
Re-reading this, I see the question is aimed at whether there was a triggering illness that maybe set off the auto-immune response. That’s a big YES. This whole other set of symptoms–vague at first–started within a week of getting over a nasty cold. I remember at the time thinking “Damn, I just got OVER a cold! Unfair!” It sure was…
I was in severe keto acidosis, but fought friends and family about seeking medical care, 21 year old airman recently returned from TDY in Korea. Ended up passing out and being rushed to the hospital where the T1D was diagnosed.
Yes. It was 1962 and was 8 years old. I had the mumps in the Fall that year and in late November became increasing ill with polydipsia, polyuria, weight loss, loss of energy and extreme fatigue. Was tested for anemia, leukemia and finally diabetes.
I was diagnosed November 1968 and there was no such term, T1D. The only major problem I had is going to the bathroom and urinating a lot then going straight to the water fountain and satisfying my thirst. Typical person with Diabetes, but not diagnosed yet.
When I was ten years old my whole family had the flu. This was in 1972. After everyone else were recovering, I was getting worse. I was more tired and didn’t wake up to use the toilet during the night. I didn’t even wake up after wetting the bed and the amount of urine was greatly increased as well as the frequency. My thirst could not be quenched. I was falling asleep in school, during activities, while eating, etc. I lost my appetite and lost a lot of weight. I was vomiting the little bit I did eat. My mind became muddled and I was very emotional. I cried alone. I knew I was dying and I told my mom that I felt like I was going to go to sleep and not wake up. Mom took me to three pediatricians all three thought I was suffering from severe depression! My grandfather called his doctor who saw me right away. He did a lot of tests. He had us wait in his office for the test results. After what seemed like a whole day, he came in and said, “She’s right…right now she’s dying BUT there’s a treatment!” I wasn’t happy about my having to give myself shots every day for the rest of my life, but I was happy I could have the rest of my life! This Dr was great! He helped me learn how to live a healthy lifestyle with T1D. He was very positive about life with T1D. I’m 62 years old now and I’ve had more terrible doctors than great ones. The one I have now is wonderful!
Hi Gigi –
Our stories are so similar!
I’m glad for your grandfather’s doctor!
No, I went to the eye doctor in August 1994 for a routine exam and got a new eyeglass prescription, as usual. 6 weeks later, I went to get my learner’s permit and failed the eye test. Went back to the eye doctor, got another new prescription. 3 months later. I was having trouble reading the blackboard in school, so we went back to the eye doctor. He noted that I have a strong family history of T1D (my mother and maternal grandmother both had it) and sent me fa glucose tolerance test. My dad took me to the hospital’s outpatient lab a few weeks later and my fasting glucose was 380. They couldn’t run the 4-hour glucose tolerance test because of the risk of putting me in DKA .
I was sick in the month leading up to my diagnosis. When it started with the thirst, I thought it was part of a cold that wouldn’t go away. Then came the weight loss. After that came the nausea, which I initially attributed to not being able to handle French food, but then we thought it was a stomach flu.
Flu
My son had a pretty bad ‘flu’ in February, but since it was 2020, maybe it was Covid(?)
In the next 6 weeks, he dropped weight, drank tons of juice, peed the bed which was the last straw. I stayed up all night doing research and brought him to see his PCP in the AM and his sugar was over 600. We spent 6 hours in the endocrinologist’s office and they sent us home-no hospitalizations during Covid. He was 14.
Yes. My whole family had had the flu, but I didn’t get better. I had just turned 5.
I had allllll the classic symptoms of diabetes after that.
I was taken to multiple doctors over a few days who all said I was lying and that I was just worried and a hypochondriac.
Finally, a senior doctor recognized that I was very ill and I needed to go to the hospital which was a little over an hour away.
While the nurses there were nice, I was alone a lot (ie no family).
After I was home and dealing the best I could, the doctors I had were mean and unhelpful. They treated me very poorly.
Anyway, I’m straying from the point… which is, yes, I had the flu before diagnosis!
Oh, not that it’s relevant to the question, but I was in the hospital for a month.
I had Coxsackie B virus in February, 1975 with a very high fever. I was diagnosed in May with the classic symptoms of extreme thirst and having to pee every 10 minutes.
I do not remember being “sick”, but rather very, very thin and had frequent urination. It was 58 years ago….. some of the details have faded from memory LOL! (But not the terror of having blood drawn at age 6… ugh!)