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    • 7 hours, 19 minutes ago
      Cecilia Yamamoto likes your comment at
      At T1D Exchange, we work to improve the lives of people with T1D through research. If you could ask a T1D scientist anything about research, what questions would you want answered? Share in the comments, and your question may be featured in an upcoming article!
      Why aren't there more studies on heart disease risk with only T1Ds? I have read peer reviewed medical articles that confirm that T1Ds were not studied exclusively in statin research. We were advised to be treated with statins even if our cholesterol was excellent and there were no other risk factors. I suffered from elevated A1c, weight gain, insulin resistance, extremely low cholesterol which led to vitamin D deficiency which caused respiratory problems and inability to exercise or enjoy leisure activities due to breathlessness and muscle pain. Doctors believed that any symptoms reported by patients were due to the "Nocebo effect" despite my improvement when I didn't take statins for six months when I forgot to refill my prescription! I suffered these side effects from 2002-2016 when I finally found a doctor who took me seriously. We need to be treated as individuals with T1D, not treated based on studies on the majority of T2 studies.
    • 8 hours, 26 minutes ago
      Lenora Ventura likes your comment at
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes, my dad had T1. My diagnosi made him and my mom so sad. I tried hard to make it no big deal so they wouldn’t worry.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 27 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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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

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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.

      2 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.

      2 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.

        2 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
      2 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.

      2 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
      2 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.

        2 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.

      2 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
      2 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
      2 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.

      2 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.

      2 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
      2 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. (ā€Æā™„ā€ÆĶœŹ–ā€Æā™„ā€Æ)

        2 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.

      2 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.

      2 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
      2 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.

      2 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.

      2 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
      2 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.

      2 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

      2 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

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