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    • 1 hour, 48 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 13 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 15 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 18 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 19 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 20 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 21 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 1 day, 22 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 22 hours ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 13 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 13 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 15 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 16 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 17 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 19 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 19 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 20 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 20 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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    If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply.

    Home > LC Polls > If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply.
    Previous

    If you were misdiagnosed with something else before being diagnosed with T1D, did you end up in DKA due to the misdiagnosis?

    Next

    If you were diagnosed with T1D as an adult, were you first misdiagnosed before you got the correct diagnosis? If yes, with what were you misdiagnosed? Select all that apply to you.

    Sarah Howard

    Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.

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    22 Comments

    1. Kimberly Green

      my mom actually diagnosed me and asked to be tested specifically for it. They looked at her like she was insane, but did the ketone test, and BG and I was large and in the 400 range. not in DKA at the time of diagnosis yet though.

      5 years ago Log in to Reply
    2. Alanna_W

      As an 11 year old girl, I spent a few months going to the doctor with signs and symptoms and we were always told it was just hormonal changes/puberty. Nope. T1D.

      5 years ago Log in to Reply
      1. Kristine Warmecke

        I was 11, too, and my Mom was pushing for it to hormonal changes. Everyone looked at her like she was crazy, my brother had been diagnosed 10 years earlier.

        5 years ago Log in to Reply
    3. Richard Vaughn

      My parents took me to three doctors in 1945. Those doctors did not make a diagnosis. I was given a tonic to increase my appetite. I had stopped eating.
      A fourth doctor had my blood sugar tested and I was finally correctly diagnosed, a few days after my 6’th birthday in September, 1945.

      4
      5 years ago Log in to Reply
    4. Kristen Schell

      I was diagnosed in 1987 and had lost a lot of weight as a child and was very thirsty. My mom set an appt and we got lucky and the pediatric type 1 expert was the doctor I met with and he immediately knew what was wrong and I was shortly on my way to Children’s Hospital for a week.

      5 years ago Log in to Reply
    5. cynthia jaworski

      The first diagnosis was that my mother, who had reported my symptoms, was neurotic and needed counseling. One urine test later (insisted upon by mom) and a subsequent blood test confirmed the correct diagnosis.

      1
      5 years ago Log in to Reply
      1. KarenM6

        Hi Cynthia – that happened to my Mom, too! My poor Mom ended up having to yell at the third doctor because they all just thought I was a liar and she was worrying too much.

        5 years ago Log in to Reply
    6. Jana Foley

      Both of my youngest two children were correctly diagnosed at the ages 6 and 11, just 3 months and 4 days from one another. We had a phenomenal pediatrician.

      5 years ago Log in to Reply
    7. Rose Lentzke

      My grandmother was concerned because I constantly asking for water. My parents took me to children’s hospital where I was diagnosed in 1956 at age 4.

      1
      5 years ago Log in to Reply
    8. Janis Senungetuk

      After a three month onslaught of chickenpox, bronchitis and measles my mother took me to the pediatrician because I accidentally wet my bed. I was 8 years old. After answering a few questions, he did a urine test in the office, then sent me to the hospital for a blood test. He told my mother he thought it might be diabetes because “it ran in the family”. This was 1955, genetic studies were a long way off, but because my doctor knew my grandfather had diabetes, his guess was correct.

      1
      5 years ago Log in to Reply
    9. Brianna Lyons

      I actually diagnosed myself when I was 10. My father was T1D and was constantly telling me and my little sister to watch out for symptoms (increased thirst, urination, etc) and encouraging us to use the ketone strips he had in the house. One summer day I was annoyed with how often I was going to the bathroom, and thought I needed to check- but couldn’t find the strips. When my parents got home from work, I asked for “the pee strips” and my mother insisted I didn’t have diabetes. I said I wanted to check anyway, and sure enough: ketones. My dad took me into the kitchen and used his blood sugar meter: BG ~300. The next morning he and I went to the hospital for my official diagnosis.

      5 years ago Log in to Reply
    10. HMW

      After showing several symptoms at age 7, my mom took me to the pediatrician who immediately sent us to the Hospital for Sick Children in Toronto. They were the first hospital in the world to administer insulin to patients and their endocrinology team specializes in type 1 diabetes.

      5 years ago Log in to Reply
    11. Marla Peaslee

      I was dx in 1967, at the age of 5. I was in DKA. We had just returned, from living in Germany, to the USA. I am a military brat. My sister and I were staying with our grandparents for two weeks and 55 miles away our parents were house hunting. My grandparents thought my lack of appetite was due to difference in foods I was used to eating in Germany. Frequent urination and thirst. Once my parents returned my mother knew immediately I was ill and took me to our pediatrician. This wonderful man told my parents I was dying and to put me in the car and follow him to the hospital. He knew I was in DKA and said we didn’t have time to call for an ambulance. He took care of me for many years to come.
      My son was dx at 21 months of age, by me and then confirmed by his MD.

      1
      5 years ago Log in to Reply
      1. Ahh Life

        We lived and worked in Kaiserslautern 1976-1977, then Zweibruecken 1978-1981. The insulin co-pay at that time was $1. Ahh, the good ol’ days. ( ♥ ͜ʖ ♥ )

        5 years ago Log in to Reply
    12. Julie Akawie

      I was dx at the age of three — had been lethargic, thirsty, etc for nearly a week. One day, I had been playing in my older sister’s room, and Mom came in to tell me to put her things away because she would be home from school soon. Mom found me non-responsive and called an ambulance. My blood glucose was 1600 at the time of admission in 1970, and I was in the hospital for 8 days.

      To this day (more than 50 years later), she feels ashamed that she didn’t recognize how sick I was. I remind her that there was nothing to be done about it, even if she *had* noted it earlier.

      5 years ago Log in to Reply
    13. Sue Herflicker

      My son was diagnosed at 23 months old and was in the hospital for the stomach flu. He was sent home even after I asked them to check for diabetes, being my brother had it as a juvenile. I was told I worry too much… Hence 2 weeks later we ended up at CHOP in Philadelphia with an extremely sick child.

      5 years ago Log in to Reply
    14. Nicholas Argento

      My BG was 564 when I presented to the ER at 8 yo, having lost weight and peeing every half hour. It was not a hard call….correct diagnosis amde.

      1
      5 years ago Log in to Reply
    15. KarenM6

      At 5 and I had all the classic symptoms, frequent urination, lack of appetite, lethargic, losing weight, funny breath odor… (probably more symptoms, but you get the idea). The first 3 doctors said I wasn’t sick, that I was faking it, that I was a liar, and that it was all in my head and I was just trying to get attention.
      The 4th doctor got it right. He put me in an ambulance for the nearest hospital.

      5 years ago Log in to Reply
    16. Michelle Saunders

      It was initially thought that I had a bladder infection. After a weekend of being on antibiotics and no change, the doctor had blood work done to confirm his suspicions that I had type 1.

      5 years ago Log in to Reply
    17. Ben Galindo

      Diagnosed in 1957 at age 10, was ill for 1week. Family doc said it was stomach flu. I became unconscious, taken to LA County Hospital, admitted for 2 weeks. Spent most of time learning how to take care of myself test tube urine testing, glass syringes & SS needles (boil).

      2
      5 years ago Log in to Reply
    18. Megan W

      My Mom did medical transcription for a small family practice and was close to the doctors. She recognized my symptoms from things she heard when doing transcription and asked for me to be tested. She was correct, and I was correct too as I thought I had strep throat and I did. I was 10.

      5 years ago Log in to Reply
    19. Leona Hanson

      I was diagnosed as a pre diabetic when I was 7 the doc was right but not a t1d

      5 years ago Log in to Reply

    If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply. Cancel reply

    You must be logged in to post a comment.




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