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    • 26 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, 11 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, 11 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, 11 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, 11 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, 14 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, 17 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, 18 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, 19 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, 19 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, 20 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, 20 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, 20 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, 20 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, 20 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, 20 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, 12 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, 12 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, 14 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, 14 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, 16 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, 18 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, 18 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, 19 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, 19 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 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?
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    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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