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    • 2 hours, 9 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, 13 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, 13 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, 13 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, 13 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, 15 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, 19 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, 19 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, 20 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, 21 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, 22 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, 22 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, 22 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, 22 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, 22 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, 22 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, 13 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, 13 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, 16 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, 16 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, 17 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, 19 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, 19 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, 21 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, 21 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 another condition before being diagnosed with T1D, were you experiencing diabetes-related ketoacidosis (DKA) when you were eventually diagnosed with T1D?

    Home > LC Polls > If you were misdiagnosed with another condition before being diagnosed with T1D, were you experiencing diabetes-related ketoacidosis (DKA) when you were eventually diagnosed with T1D?
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    Which provider(s) do you regularly use for your other non-diabetes health needs? (Please do not include your diabetes care providers in your responses.) Select all that apply.

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    Were you misdiagnosed with another condition before you were diagnosed with T1D?

    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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    21 Comments

    1. Melissa Yuruckso

      I was admitted to the hospital with hypertakacardia.My heart rate was 190. Doctors told me they had to treat the hypertakacardia so when routine bloodwork came back 3 days later.( I was in ICU) my blood glucose was over 700. They removed my glucose IV from my arm and started looking at symptoms. I was diagnosed Type 1 11/22/1988.

      4 years ago Log in to Reply
    2. RegMunro

      I’m not sure what the Gatooma Government Hospital (Zimbabwe) diagnosed me of back after my 1965 motor car accident, but they missed diabetes!

      4 years ago Log in to Reply
    3. Donna Condi

      I was misdiagnosed with Type2 diabetes and asked to go on insulin four years later because the pills I was given could not keep my blood glucose in control.

      4 years ago Log in to Reply
    4. Shelly Engel

      I was diagnosed with anxiety disorder, and treated as if I did drugs or was an alcoholic. I had a couple visits to the ER with extreme stomach pain, before finally being diagnosed with type 1 diabetes at age 42

      4 years ago Log in to Reply
    5. mbulzomi@optonline.net

      Sorry, but there is no selection for “N/A”.

      4 years ago Log in to Reply
    6. Christine Gran

      My son wasn’t exactly “misdiagnosed” but the doctor I took him to see did not think to test his blood sugars right away. He was stumped by the symptoms I reported and then suggested that we could run some labs. The results were reported to us three days later when the results had already come back the next day. He had already been in DKA which explained his symptoms

      4 years ago Log in to Reply
      1. trisha moynihan

        Frustrating! 🙁

        4 years ago Log in to Reply
    7. Jane Cerullo

      I was misdiagnosed as type2 when my fasting BS was only 130 and then 139. Quickly needed insulin a few months post diagnosis. I’ve posted before that as a nurse I was not comfortable with first diagnosis. I was always on the thin side and had no other symptoms like high BP or cholesterol. Took awhile but then was properly diagnosed with LADA.

      4 years ago Log in to Reply
    8. Sherolyn Newell

      When I was misdiagnosed with T2, my A1C was over 14, so I wouldn’t be surprised if I had DKA. I didn’t have any DKA symptoms though. I got my A1C down around 8 by basically starving before I got an endo appointment. Tests showed T1D. She did say it would be interesting to know if I was throwing off proteins when I had A1C of 14.

      4 years ago Log in to Reply
    9. Mark Schweim

      I was misdiagnosed with both viral and bacterial infections for over 6 months prior to my T1D diagnosis.
      When my T1D was diagnosed, I definitely had DKA with a lab reported Blood Acetone level of nearly 3% and somehow I not only survived but I never even lost consciousness. All the documentation the Hospital had available at the time said that a blood acetone level of only 2.5% was 100% fatal with survival listed as impossible.

      1
      4 years ago Log in to Reply
      1. Patricia Dalrymple

        This is where I wish I had the heart emoji to click on. One tough person!

        1
        4 years ago Log in to Reply
    10. Bonnie kenney

      I had all the classic symptoms. They knew as soon as I walked in the door. 1974!

      4 years ago Log in to Reply
    11. Bob Durstenfeld

      I was not misdiagnosed. But my son’s doc could not fathom that he could develop T1D at age 8months and was convinced it was something else.

      4 years ago Log in to Reply
    12. Carol Meares

      I am unsure because I was never diagnosed with DKA but I did lose a lot of weight (~15#) and could barely climb a flight of stairs. I never was admitted to the hospital. I was given a glucose tolerance test then told to wait until I felt like driving home. They put me on metformin. I was 38. Back then adults didn’t get type 1:-/. I was put on insulin around 6 months later. It was more than one doc visit which were 3 months apart. The Doc’s words were that 10% of type 2 diabetics had to go on insulin.

      4 years ago Log in to Reply
    13. Amanda Barras

      I was 4 years old. The first thing my doctor tested in office was my urine when my mom brought me in sick. He walked back into the room with an quick and accurate dx just based on my ketone level alone. A trip to the hospital and immediate admittance for a week for treatment and stabilization.

      4 years ago Log in to Reply
    14. Pauline M Reynolds

      Unsure because when it was confirmed through C-Peptide test that I had Type I, I was also suffering from hyperthyroid symptoms, so felt unwell and wasn’t tested for ketones.

      4 years ago Log in to Reply
    15. Lyndsey Escobar

      After 3 physicians and 5 appointments my son was misdiagnosed with cyclical vomiting syndrome (vomiting from high blood sugar, in hindsight). Took him in for an unrelated test weeks later and they tested his fasting glucose at 289.

      4 years ago Log in to Reply
    16. Anneyun

      When I was admitted to the hospital I was drifting in and out of consciousness. I had lost 20 lbs in about a week, and as an already skinny 14 year old I went down to 72 lbs. I don’t ever remember hearing the word ketoacidosis, but I remember waking up once to find some nurses sniffing my breath and commenting on the symptomatic smell.

      4 years ago Log in to Reply
    17. kristina blake

      My story was unfortnately all too common. I was 30 years old, recently retired ballet dancer. I had gone from my working weight of 110 lbs (I’m 5’6″) to 95 lbs. No D of any type in my family. But since I was 30 years old, I was Dx’d with T2D, told to watch my weight and restrict my food intake (which is why the comment about having been a ballet dancer comes in). This was when the types were still “juvenile” and/or “adult” onset. Still felt awful. A few weeks later I was found by a neighbor in a DKA coma. She called my day job to say I wouldn’t be coming in, mentioning that she couldn’t rouse me. Lucky me, I worked for a large city fire dept with EMS. They dispatched from HQ and I got the correct Dx in the ED.

      4 years ago Log in to Reply
      1. KarenM6

        Hi kristina!
        I remember your story from other posts and it still blows my mind that the doctors told you to restrict your food intake given your job and height and weight. I just am lost for words.
        I’m so glad your neighbor found you in time and called your work/EMS!!!

        4 years ago Log in to Reply
    18. Patricia Dalrymple

      Misdiagnosed with T2D at age 42 and was basically accused of being anorexic. I am 5’6” and weighed 110lbs down from 120 usual weight at the time. They asked me if I thought I looked good. I said NO – I look like hell. Help me. Put me on pills, starved myself, walked stairs, but at least went from 10 A1C to 8. I knew I needed insulin, begged to get into Endo, and he is the one I credit for correctly diagnosing and pushing me towards a pump.

      4 years ago Log in to Reply

    If you were misdiagnosed with another condition before being diagnosed with T1D, were you experiencing diabetes-related ketoacidosis (DKA) when you were eventually diagnosed with T1D? Cancel reply

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