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    • 1 hour, 39 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 1 hour, 40 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Sorry. Of course I store unopened in frig. Opened in my room as I use it up in 30 days
    • 1 hour, 41 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      No, I keep it in the oven! ;) Same answer as the last time they asked this ridiculous question!
    • 2 hours, 23 minutes ago
      Becky Hertz likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 3 hours, 46 minutes ago
      Bruce Schnitzler likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 5 hours, 43 minutes ago
      alex likes your comment at
      Here’s What You Need to Know About the Dexcom G7
      This article explains the Dexcom G7 features in a clear and easy way, especially for people new to continuous glucose monitoring. Very informative and helpful. Sportzfy TV Download
    • 21 hours, 6 minutes ago
      KarenM6 likes your comment at
      Have you ever been told you couldn’t physically do something because you live with diabetes?
      Long time ago - told there were certain occupations I would not be allowed to do because if T1D. Pilot, air traffic controller, military, etc.
    • 21 hours, 8 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I have been told many times "YOU CAN'T EAT THAT!" ONLY to frustrate them and eat it anyway and then bolus accordingly.
    • 21 hours, 9 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 21 hours, 10 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Lol hell when haven't they. Lol
    • 21 hours, 18 minutes ago
      KarenM6 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 23 hours, 10 minutes ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was only 2 when Diagnosed 70 years ago. My small town doctor admitted he didn't know much about T1D, and fortune for my parents and I he called what is now Joslin Clinic, and they told him how much insulin to give me. He taught my parents, who then traveled over 350 miles to Boston, to learn about how to manage T1D. My doctor learned more about T1D, and was able to help 2 other young men, that were later DX with T1D in our small town. I went to Joslin until I turned 18 and returned to become a Joslin Medalist and participated in the research study, 20 years ago. Still go there for some care.
    • 23 hours, 11 minutes ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was 7 when things changed in my home. My older brother was hospitalized for 2 weeks. When he came home, we no longer ate the way we had before. This was 1956. Dessert alternated between sugarless pudding or sugarless Jello. I learned that bread and potatoes had carbohydrates and that turned to sugar. There was a jar in the bathroom. It seemed my brother was testing his urine every time he went in there. There was a burner and pot on the stove designated for boiling syringes. I watched my brother give himself shots and I remember how hard it was to find someone to manage his care if my parents had to travel. Diabetic Forecast magazine came in the mail each month and there were meetings of the local diabetes association that my mother attended religiously. My brother got a kidney and pancreas transplant at age 60 and before he died lived for 5 years as a non-diabetic. A few years later I was diagnosed. Sorry he was not able to make use of today’s technology. I often wonder what he and my late parents would think about me, at age 66, being the only one in the family with type 1.
    • 23 hours, 13 minutes ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 3 hours ago
      kilupx likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      My brother was type 1 since an early age. I was only diagnosed in my late 40s
    • 1 day, 5 hours ago
      Phyllis Biederman likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 6 hours ago
      Bill Williams likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 6 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was diagnosed in 1976 at the age of 18 while in college. One weekend, I was drinking a lot of water and peeing frequently. I remembered having read a Reader's Digest article on diabetes, and I told my friends I thought I might have it. Two days later, the diagnosis was confirmed.
    • 1 day, 6 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 6 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 1 day, 6 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      It was 35 years ago for me. I had no experience with T1d. I was starting to show symptoms and my sister-in-law quickly researched T1d and told me what she found. I went to my GP a week or two later. My BG was over 600. He sent me to the hospital right away. Blood test confirmed it.
    • 1 day, 6 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I only knew a little . That is why I give grace to others who do not know anything or have misconceptions.
    • 1 day, 6 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 6 hours ago
      KCR likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 1 day, 6 hours ago
      Gary R. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
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    If you were misdiagnosed with something else before being diagnosed with T1D, did you end up in DKA due to the misdiagnosis?

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

    If you drink coffee, do you bolus for the coffee itself (not any of the additional cream/sugar)? Share your tips for how to bolus for coffee in the comments!

    Next

    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.

    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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    19 Comments

    1. Sally Numrich

      I was not misdiagnosed but due to lab mix up, I went a weekend with no treatment & ended up in a coma. The doctor knew what was happening from phone call with my Mom. He asked for a fasting and if it was normal to bring me in Monday morning. Worst weekend of my life. The call never came in and I went downhill fast.

      5 years ago Log in to Reply
    2. Rebecca Lambert

      I went to urgent care with an infected bug bite that would not heal. Was feeling and looking terrible. Was sent home with antibiotics and 48 hours later Was in ICU.

      5 years ago Log in to Reply
    3. connie ker

      I had ketones when I was put on insulin over the telephone, however the endo Dr. called me a 1 and 1/2. Then my hometown Dr. treated me as a 2 which didn’t work at all on glucophage. Finally the term LADA came out in the diabetic realm and that is what I obviously am dealing with for the rest of my life. Without insulin, I would have wasted away because I kept losing weight and strength at the age of 49. Happy Birthday Insulin!!!!!

      2
      5 years ago Log in to Reply
    4. Beth Franz

      I said ‘yes’, however, I was in DKA and then misdiagnosed, and waited days days for the antibodies test results. Then almost went back into DKA after going home and put on wrong insulin/metformin that did nothing except bounce me back up into the 400s. Was taught nothing helpful on insulin, carbs and figured it out all on my own. It was a scary couple months until I got it relatively under control.

      5 years ago Log in to Reply
    5. Kristen Clifford

      I’m pretty sure I was already on the verge of DKA in the days leading up to my official diagnosis. Being correctly diagnosed sooner more than likely wouldn’t have made much difference.

      5 years ago Log in to Reply
    6. Megan L

      They told my parents I had the flu. I was really in DKA (I was only 3).

      5 years ago Log in to Reply
    7. Richard Vaughn

      I was diagnosed in 1945. Was DKA a known thing back then? My doctors never mentioned it. They still don’t. They are only concerned about lows. I never heard of DKA until 2006 when I joined an online support group.

      1
      5 years ago Log in to Reply
    8. Karington Johnston

      I was not misdiagnosed, but I was in DKA at diagnosis. I was diagnosed when I was 20, and I had studied abroad the semester before I was diagnosed. I had always been thin, and when I started losing weight, we all thought that it was just because of how much I walked studying abroad. When I came home for spring break in March, I was 90 pounds, eating a ton, peeing a ton, and barely able to stay awake or walk.

      5 years ago Log in to Reply
      1. Karington Johnston

        I ended up in the hospital for nearly a week.

        5 years ago Log in to Reply
    9. Kaylea Bowers

      I wasn’t misdiagnosed but presented DKA at diagnosis. Before finally going to the hospital, my parents thought I had an eating disorder because I wasn’t eating, and anything I did eat came right back up (but not “formally” misdiagnosed).

      5 years ago Log in to Reply
    10. ConnieT1D62

      In the fall of 1962 I was 8 years old and my brother and I had the mumps. He recovered and I kept getting sicker and sicker – losing weight, unquenchable thirst, peeing all the time, listless fatigue, and eventually dry heaves with rapid, shallow Kussmaul breathing. Among other things hey tested me for leukemia. On December 26, 1962 I went into the hospital for 3 weeks and began my life long journey with “brittle juvenile diabetes”. There was no T1 or T2 distinction back then. It was also called “sugar diabetes”.

      5 years ago Log in to Reply
      1. Germaine Sarda

        I was a brittle, too. We all must have been since we were flying blind back then. Glad you made it.

        5 years ago Log in to Reply
    11. Germaine Sarda

      I was 8 years old and already in DKA. My doctor thought it was my appendix and sent me to the hospital. He asked for a second opinion and the doctor told him he thought it was diabetes. My doctor then did a glucose tolerance test that sent me into a coma for several days. This was 1974.

      5 years ago Log in to Reply
    12. Amy Nance

      1981, I was misdiagnosed by our family doctor, as having the flu, although he did have a urine sample that showed I had very high sugar. The last thing I remember was leaving the dr. Appointment. My parents kept me home for two more days and finally took me to the ER. They diagnosed me correctly with DKA, and I woke from the coma after about 24 hours. Sadly, a boy that had labs only slightly worse than I, was admitted the same night, but did die. The doctors warned my parents I may not make it either. When I did regain consciousness the doctor came in to assess for brain damage, but I was ok. DKA is life or death, and sadly is still not widely discussed by all pediatricians or the medical community in general for adults.

      1
      5 years ago Log in to Reply
    13. Anneyun

      I was already in DKA when I was taken to the hospital, barely able to stand and down to the weight of 78lbs at 14 years old. I was drifting in and out of consciousness. They told my mother that I had leukaemia.

      5 years ago Log in to Reply
    14. Kimberly Starkey

      I was diagnosed as a Type II. Twelve years later I experience DKA and nearly died. In retrospect, I believe I actually had LADA but have never had it confirmed by lab results. I never “fit” the usual characteristics of a Type II, and after discussing with another insulin-dependent friend (who became so around age 40), talking to a retired doctor, and doing some of my own research, I do think I was actually LADA. I also believe I postponed the DKA by living mostly low carb for those 12 years.

      5 years ago Log in to Reply
    15. Maria T

      I was diagnosed 35 years ago, so T1D was fairly unheard of. Initially I was diagnosed with the flu, then after 3 days I lost 15 pounds and peaked of acetone.

      5 years ago Log in to Reply
      1. Maria T

        REAKED, not peaked, not reached! My personal showdown with spell check….

        5 years ago Log in to Reply
    16. Avasupplies

      I was misdiagnosed in 1992. The doctor told my mom told my mom that I probably had a summer cold that was going around. About 4 days later after sucking down oranges and Gatorade because I was so sick to my stomach… my dad carried my lifeless body into the emergency room. The doctor asked about my insulin and dad didn’t have any answers. I was transported my ambulance to a larger hospital and my blood sugar was over 800. I don’t remember much about it, I was 11.

      5 years ago Log in to Reply

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

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