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    • 3 hours, 2 minutes ago
      Jeremy Hanson likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      And sometimes I dream that I’ve run out of insulin and cannot get prescription refilled.
    • 4 hours, 54 minutes ago
      ConnieT1D62 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I providee an answer of low BG. But with that said, it is usually a false alarm (compression low from Dexcom sensor) With the stable bedtime BG and a TSlim X2 pump using CIQ and Sleep Mode, I consistently sleep between about 85 and 110 every night. The key to this is going to bed with a stable BG (85-110) and not having any IOB.
    • 4 hours, 59 minutes ago
      ConnieT1D62 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      While middle-of-the-nght alerts are frustrating and irritating, I'm no longer terrified of dying from an extreme low in the middle of the night, so technology is still a win for me!
    • 6 hours, 35 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 6 hours, 36 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      The same as Carrolyn Barloco. I often get messages in the middle of the night that my blood glucose level was either high or low 2, 3, or 4 hours ago. This is a completely useless piece of information, and absolutely NO REASON to wake me up. This is nothing but an ANNOYING alert. Tandem and Medtronic, if you're listening, please remove this function from your pumps.
    • 6 hours, 37 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 6 hours, 38 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yeah. Totally agree! This is totally unnecessary and extremely annoying.
    • 6 hours, 38 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My most frequent and favorite !!?? alarm at night is the one that tells me I had a high two hours ago! Duh!!!
    • 6 hours, 48 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 6 hours, 49 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      The same as Carrolyn Barloco. I often get messages in the middle of the night that my blood glucose level was either high or low 2, 3, or 4 hours ago. This is a completely useless piece of information, and absolutely NO REASON to wake me up. This is nothing but an ANNOYING alert. Tandem and Medtronic, if you're listening, please remove this function from your pumps.
    • 6 hours, 49 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yes, I appreciate device improvements but some are just plain annoying and make a difficult journey Worse, not better. And the main complaint is unnecessary alerts the user cannot adjust.
    • 6 hours, 50 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My most frequent and favorite !!?? alarm at night is the one that tells me I had a high two hours ago! Duh!!!
    • 6 hours, 50 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yeah. Totally agree! This is totally unnecessary and extremely annoying.
    • 6 hours, 56 minutes ago
      Wanacure likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Why isn't going to the bathroom not on this list?
    • 7 hours ago
      Wanacure likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 7 hours, 16 minutes ago
      TEH likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My most frequent and favorite !!?? alarm at night is the one that tells me I had a high two hours ago! Duh!!!
    • 7 hours, 39 minutes ago
      Steven Gill likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My pump, "I need to BG! I need to BG!" Such a cry baby it is!
    • 8 hours, 33 minutes ago
      Robin Melen likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 9 hours, 19 minutes ago
      Mick Martin likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 9 hours, 21 minutes ago
      Mick Martin likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yes, I appreciate device improvements but some are just plain annoying and make a difficult journey Worse, not better. And the main complaint is unnecessary alerts the user cannot adjust.
    • 9 hours, 46 minutes ago
      Anneyun likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 10 hours, 28 minutes ago
      Sue Martin likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 11 hours ago
      T1diabetic likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 11 hours ago
      T1diabetic likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      The same as Carrolyn Barloco. I often get messages in the middle of the night that my blood glucose level was either high or low 2, 3, or 4 hours ago. This is a completely useless piece of information, and absolutely NO REASON to wake me up. This is nothing but an ANNOYING alert. Tandem and Medtronic, if you're listening, please remove this function from your pumps.
    • 11 hours, 21 minutes ago
      Velika Peterson likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      I stopped using those sites and paid more attention to rotation of available ones.
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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 (nee Tackett) has dedicated her career to supporting the T1D community 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. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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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.

      2 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.

      2 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
      2 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.

      2 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.

      2 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).

      2 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
      2 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.

      2 years ago Log in to Reply
      1. Karington Johnston

        I ended up in the hospital for nearly a week.

        2 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).

      2 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”.

      2 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.

        2 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.

      2 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
      2 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.

      2 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.

      2 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.

      2 years ago Log in to Reply
      1. Maria T

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

        2 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.

      2 years ago Log in to Reply

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