Subscribe Now

[hb-subscribe]

Trending News

T1D Exchange T1D Exchange T1D Exchange
  • Activity
    • 1 hour, 29 minutes ago
      mojoseje likes your comment at
      Have you had to switch diabetes medications in the past year due to health insurance changes?
      NEVER accerptable or appropriate. Nobody's healthcare should ever be determined by a third party's profit margin(s) to determine what we are forced to take.
    • 3 hours, 31 minutes ago
      Phyllis Biederman likes your comment at
      Have you had to switch diabetes medications in the past year due to health insurance changes?
      My doctor switched me without telling me from Humalog to novolog and told me it was due to insurance. I’m on Medicare and I never saw anything that said that was necessary. They call me periodically to see how I’m doing and I told them I didn’t appreciate being switched without being told. I thought initially it was a mistake when I picked it up at the pharmacy but they said that’s what the doctor ordered. Then the next visit, he told me all my issues with insulin switching and preauthorization holdups was my fault basically because he says “I have the wrong insurance”. Like I’m going to NOT use Medicare. My opinion? I think I have the wrong doctor, but it’s a hassle to switch.
    • 3 hours, 49 minutes ago
      Lawrence S. likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      Insurance won't cover and it was several hundred dollars.
    • 3 hours, 50 minutes ago
      Marty likes your comment at
      Have you had to switch diabetes medications in the past year due to health insurance changes?
      Had to, no. But Medicare is adding coverage for FIASP in '26 so it will be "bye, bye, bye, bye, bye" to Lyumjev!
    • 4 hours, 42 minutes ago
      Gerald Oefelein likes your comment at
      Have you had to switch diabetes medications in the past year due to health insurance changes?
      Had to, no. But Medicare is adding coverage for FIASP in '26 so it will be "bye, bye, bye, bye, bye" to Lyumjev!
    • 4 hours, 57 minutes ago
      Scott Rudolph likes your comment at
      Have you had to switch diabetes medications in the past year due to health insurance changes?
      Had to, no. But Medicare is adding coverage for FIASP in '26 so it will be "bye, bye, bye, bye, bye" to Lyumjev!
    • 1 day, 1 hour ago
      eherban1 likes your comment at
      Multiple daily injections (MDI) users: Do you use an app or other device to track your insulin dosing? Share the tools you use in the comments below!
      I use InPen and it's great. Except they aren't keeping up with iOS so you now have to unlock your phone and open the app to check IOB instead of simply looking at the home screen. You can tell when app developers aren't users, otherwise they'd know how much of a pain this is when you check 50 times a day
    • 1 day, 2 hours ago
      Trish Bowers likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      Insurance won't cover and it was several hundred dollars.
    • 1 day, 2 hours ago
      Trish Bowers likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      Glucagon is $425 for me on Medicare. It is cheaper to get an ambulance! I have an expired one that will work if I ever need it, but I won't.
    • 1 day, 2 hours ago
      Trish Bowers likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      No. During the past century I threw out many glucagon doses about 5 years after each had expired - having never used a single glucagon dose.. This century, two dose kits were disposed of and never used. At this point, in my opinion, with modern tools for accurately monitoring one's body glucose levels, AND common awareness of how one is feeling, severe low BGL can be easily avoided thus not needing "emergency' glucagon. NOTE WELL!!! what I wrote in the last sentence, does NOT apply to the very young, and some newly diagnosed who have not yet mastered insulin dosing and who have not yet been accustomed to recognizing low or quickly dropping BGL.
    • 1 day, 2 hours ago
      Trish Bowers likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      I do because it Costc me over $300 to replace it. Too expensive.
    • 1 day, 3 hours ago
      John Barbuto likes your comment at
      Multiple daily injections (MDI) users: Do you use an app or other device to track your insulin dosing? Share the tools you use in the comments below!
      Medicare has added FIASP for 2026! Besides the great news of being able to use this once again, it is one of the few fast acting insulins that works with the inPen. I am considering doing that in the new year
    • 1 day, 3 hours ago
      John Barbuto likes your comment at
      Multiple daily injections (MDI) users: Do you use an app or other device to track your insulin dosing? Share the tools you use in the comments below!
      Been using fiasp for 2 years (in the UK) and it's significantly better than novorapid. Would highly recommend to everyone, especially if you find your insulin a bit slow to act.
    • 1 day, 4 hours ago
      Lozzy E likes your comment at
      Multiple daily injections (MDI) users: Do you use an app or other device to track your insulin dosing? Share the tools you use in the comments below!
      Medicare has added FIASP for 2026! Besides the great news of being able to use this once again, it is one of the few fast acting insulins that works with the inPen. I am considering doing that in the new year
    • 1 day, 7 hours ago
      Ahh Life likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      The last Glucagon prescription that I purchased was 15 years ago. Now it's way too expensive because my insurance doesn't cover it. They just want us to either die or use ambulance service to use or send us to ER. Pretty stupid to me. I've had T1D for 52 years and never needed it really. Only 3 times during early morning hypos in 2015-16 I needed rescue to wake me.
    • 1 day, 12 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      My experience over the past 65 years is that a sugary drink and patience will bring me out of a low satisfactorily. If I’m unconscious, as has happened four or five times over that period, the EMTs know what to do.
    • 1 day, 12 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      Glucagon is $425 for me on Medicare. It is cheaper to get an ambulance! I have an expired one that will work if I ever need it, but I won't.
    • 1 day, 12 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      No I haven't a glucagon in yeans. Reason being:, every time I had a prescription, the glucaagon was never used and expired.
    • 1 day, 12 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      No. During the past century I threw out many glucagon doses about 5 years after each had expired - having never used a single glucagon dose.. This century, two dose kits were disposed of and never used. At this point, in my opinion, with modern tools for accurately monitoring one's body glucose levels, AND common awareness of how one is feeling, severe low BGL can be easily avoided thus not needing "emergency' glucagon. NOTE WELL!!! what I wrote in the last sentence, does NOT apply to the very young, and some newly diagnosed who have not yet mastered insulin dosing and who have not yet been accustomed to recognizing low or quickly dropping BGL.
    • 1 day, 12 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      I do because it Costc me over $300 to replace it. Too expensive.
    • 1 day, 13 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      Insurance won't cover and it was several hundred dollars.
    • 1 day, 13 hours ago
      René Wagner likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      No,insurance won't cover it. T1D for 45+ years and haven't had a situation where I needed it - so far so good
    • 1 day, 15 hours ago
      Vicki Breckenridge likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      Glucagon is $425 for me on Medicare. It is cheaper to get an ambulance! I have an expired one that will work if I ever need it, but I won't.
    • 1 day, 21 hours ago
      Richard likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      No. During the past century I threw out many glucagon doses about 5 years after each had expired - having never used a single glucagon dose.. This century, two dose kits were disposed of and never used. At this point, in my opinion, with modern tools for accurately monitoring one's body glucose levels, AND common awareness of how one is feeling, severe low BGL can be easily avoided thus not needing "emergency' glucagon. NOTE WELL!!! what I wrote in the last sentence, does NOT apply to the very young, and some newly diagnosed who have not yet mastered insulin dosing and who have not yet been accustomed to recognizing low or quickly dropping BGL.
    • 1 day, 23 hours ago
      Dennis Dacey likes your comment at
      Do you have Glucagon on hand that is not expired? If not, please share why in the comments.
      My experience over the past 65 years is that a sugary drink and patience will bring me out of a low satisfactorily. If I’m unconscious, as has happened four or five times over that period, the EMTs know what to do.
    Clear All
Pages
    • T1D Exchange T1D Exchange T1D Exchange
    • Articles
    • Community
      • About
      • Insights
      • T1D Screening
        • T1D Screening How-To
        • T1D Screening Results
        • T1D Screening Resources
      • Donate
      • Join the Community
    • Quality Improvement
      • About
      • Collaborative
        • Leadership
        • Committees
      • Centers
      • Meet the Experts
      • Learning Sessions
      • Resources
        • Change Packages
        • Sick Day Guide
        • FOH Screener
      • Portal
      • Health Equity
        • Heal Advisors
    • Registry
      • About
      • Recruit for the Registry
    • Research
      • About
      • Publications
      • COVID-19 Research
      • Our Initiatives
    • Partnerships
      • About
      • Previous Work
      • Academic Partnerships
      • Industry Partnerships
    • About
      • Team
      • Board of Directors
      • Culture & Careers
      • Annual Report
    • Join / Login
    • Search
    • Donate

    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.

    Related Stories

    News

    Immunosuppressants in T1D Research: Expert Opinions from Diabetes Pharmacist Diana Isaacs 

    Jewels Doskicz, 3 days ago 5 min read  
    2025 Learning Session

    The 2025 T1DX-QI Learning Session: Driving Better Diabetes Care 

    Sarah Howard, 2 weeks ago 7 min read  
    Lifestyle

    Barriers to Care in Aging: Voices from the T1D Community 

    Jewels Doskicz, 2 weeks ago 7 min read  
    Lifestyle

    When T1D Becomes a Calling: Stories From our Team 

    Jewels Doskicz, 3 weeks ago 11 min read  
    Meet the Expert

    Meet the Expert: Centering the Voices of Youth and Families from Vulnerable Populations 

    Jewels Doskicz, 4 weeks ago 8 min read  
    News

    Tidepool’s Brandon Arbiter on Building Better T1D Care Through Connected Data 

    Michael Howerton, 1 month ago 6 min read  

    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.




    101 Federal Street, Suite 440
    Boston, MA 02110
    Phone: 617-892-6100
    Email: admin@t1dexchange.org

    Privacy Policy

    Terms of Use

    Follow Us

    • facebook
    • twitter
    • linkedin
    • instagram

    © 2024 T1D Exchange.
    All Rights Reserved.

    © 2023 T1D Exchange. All Rights Reserved.
    • Login
    • Register

    Forgot Password

    Registration confirmation will be emailed to you.

    Skip Next Finish

    Account successfully created.

    Please check your inbox and verify your email in the next 24 hours.

    Your Account Type

    Please select all that apply.

    I have type 1 diabetes

    I'm a parent/guardian of a person with type 1 diabetes

    I'm interested in the diabetes community or industry

    Select Topics

    We will customize your stories feed based on what you select here.

    [userselectcat]

    We're preparing your personalized page.

    This will only take a second...

    Search and filter

    [searchandfilter slug="sort-filter-post"]