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    • 1 hour, 49 minutes ago
      Natalie Daley likes your comment at
      Since starting on a CGM, has your healthcare provider’s frequency of ordering A1C testing changed?
      T1D comes with more than its fair share of dystopian grace notes. However, the indefatigable frequency of A1c testing seems to go on forever. I started with the Medtronic CGM dubbed "The Harpoon" in 2006. Tests and frequencies have not changed an inch in 20 years. (¬////¬)
    • 2 hours, 52 minutes ago
      Lawrence S. likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      Often? Try Always! I only see my doc 1x a year to legally fill Rx. Otherwise I manage 100% on my own and make all my own dosing adjustments.
    • 2 hours, 52 minutes ago
      Lawrence S. likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 22 hours, 29 minutes ago
      Amanda Barras likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 1 day, 1 hour ago
      kristina blake likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      As noted by Lawrence, isn’t that what CGM’s are for? I’m on MDI’s and a SmartPen. Data is what determines my doses.
    • 1 day, 1 hour ago
      Marty likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 1 day, 2 hours ago
      Mike S likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      This is one of those times when I want to ask T1DExchange “what is the motivation behind this question”? What are you trying to learn from it?
    • 1 day, 2 hours ago
      Mike S likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      As noted by Lawrence, isn’t that what CGM’s are for? I’m on MDI’s and a SmartPen. Data is what determines my doses.
    • 1 day, 14 hours ago
      Bekki Weston likes your comment at
      If you use a CGM, is it accurate on day 1?
      It takes a few hours to get close.
    • 1 day, 14 hours ago
      Bekki Weston likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Usually when it's about to expire.
    • 1 day, 21 hours ago
      lis be likes your comment at
      How often do you adjust a planned physical activity because of how your glucose is trending?
      If I am above 150mg/dl don't need to carb up. If I am around 100mg/dl I definitely need to carb up. Aren't we always evaluating where we are and anticipating where we might land. That is part of active management.
    • 2 days, 1 hour ago
      Phyllis Biederman likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      For me it's compression lows - and that's it. I see that most complaints are about connection to phones. I don't (won't) use my phone. I have to have a work phone with me at least 60 hours a week, and I'm not interested in carrying (or wearing) two phones. I rarely lose connection between my Tandem X2 pump and the sensor/transmitter. Sometimes I will walk away while it's charging and take myself out of range, but that's on me.
    • 2 days, 3 hours ago
      Derek West likes your comment at
      What is the best spot for CGM accuracy
      Dexcom is ok with other locations if approved by your doctor.
    • 2 days, 3 hours ago
      Lawrence S. likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      1 and 2 days before its about to expire. It goes out of range several times those days. They should prescribe a 10 day CGM for every 8 days because on average, that is the use it seems we get.. and if you call to report it, you lose an hour on the phone!
    • 2 days, 3 hours ago
      Lawrence S. likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      It's a G7...one feature they added to the new version was random signal loss.
    • 2 days, 3 hours ago
      Meerkat likes your comment at
      Over the past week, what percent of the time have you been within your glucose target range?
      Around 95%
    • 2 days, 23 hours ago
      lis be likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      It’s usually at the end of my sensor session. Day 8 or 9
    • 2 days, 23 hours ago
      lis be likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      I tried to answer all of them but it wouldn’t let me. Or maybe my answer should be-for no apparent reason. It happens any time from day five on with no particular reason.
    • 2 days, 23 hours ago
      lis be likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Methinks the question doth another answer require. I almost clicked "out of range," but the occurrences often happen when withing 6 feet of CGM and the *#($% thing still has a signal loss. I re-orient so both devices are face to face. It STILL indicates signal loss. Then, after considerable time, these digital devices change their minds and say to each other, "OK, let's communicate again." My patience and frustration are suffering. 🗣˙◠˙
    • 2 days, 23 hours ago
      lis be likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Day 5 of 7, 4 out of 5 sensors in that box.
    • 2 days, 23 hours ago
      lis be likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      for no discernable reason.
    • 2 days, 23 hours ago
      lis be likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Usually when it's about to expire.
    • 3 days ago
      Lauren T likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      for no discernable reason.
    • 3 days, 1 hour ago
      CindyGoddard likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Usually when it's about to expire.
    • 3 days, 2 hours ago
      KCR likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      There’s no rationale, no common thread to when it happens.
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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?
    Previous

    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.

    Next

    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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