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    • 3 hours, 31 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      There are several conversations about this across social media. Many people chime in and vote for a new, more accurate name for type 1.. some of the popular alternatives- Pancreatic Autoimmune Disease, Beta Cell Destruction Disease, Autoimmune Diabetes, Autoimmune Insulin Failure, Autoimmune Absolute Insulin Deficiency (AAID)
    • 3 hours, 31 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience people have heard of Type 2 Diabetes so if I say Type 1 that makes sense in that if there is a Type 2 there must be a Type 1 also. That is the extent of their understanding. In healthcare there is a bigger failure where "diabetes" or "type 2 diabetes" is used as a shorthand of a set of conditions often seen together. See any research paper by any cardiologist ever. This lack of precision leads to incorrect risk evaluations and incorrect treatment of people with diabetes caused by other factors including autoimmune aka Type 1.
    • 3 hours, 32 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      The most common comment: but you aren’t heavy. That’s when we get into the differences. A relative tried to tell me that insulin makes you lose weight. But when we last discussed this, one of you said it best: if it isn’t in their circle of experience, why would they know or care?
    • 3 hours, 33 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 5 hours, 45 minutes ago
      Kristi Warmecke likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 8 hours, 18 minutes ago
      Lee Tincher likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      If I could get a CGM that is consistent and predictable I'd be very happy with the Twiist or the Tandem. The weak point with pumps used to be infusion sites, but now that we are relying on poor performing technology to support potentially great algorithms itis quite frustrating.
    • 10 hours, 12 minutes ago
      Beckett Nelson likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      My first reaction was Very Satisfied but there is always room for improvement. I’d like a pump design that wasn’t meant to be worn on a belt just for men. To wear a dress, I have to only get those with pockets (and on both sides because opposite sides cause the CGM to lose contact) and put a button whole in each. The clip shows horribly on blouses worn out. I’ve tried the leg attachments and they never stay secure. I’m not big enough to wear it in my bra. All minor inconveniences. I’d like one that doesn’t keep alarming 20 minutes after I’ve eaten, although I get it that it is there to save my life. Again minor. Ask about CGMs (probably tomorrow’s question): lately I’ve had trouble removing the sensor from my arm without actually ripping off a strip of skin or very bad bruising. I’ve read about using baby oil for removal. That does help. I’m a rip it off fast person, but that didn’t work so well.
    • 11 hours, 36 minutes ago
      John Barbuto likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      I have been using a insulin smart pen for the last 2 years; I find that it meets my current needs to ensure good management and results
    • 12 hours, 20 minutes ago
      Lawrence S. likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 12 hours, 20 minutes ago
      Lawrence S. likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      My first reaction was Very Satisfied but there is always room for improvement. I’d like a pump design that wasn’t meant to be worn on a belt just for men. To wear a dress, I have to only get those with pockets (and on both sides because opposite sides cause the CGM to lose contact) and put a button whole in each. The clip shows horribly on blouses worn out. I’ve tried the leg attachments and they never stay secure. I’m not big enough to wear it in my bra. All minor inconveniences. I’d like one that doesn’t keep alarming 20 minutes after I’ve eaten, although I get it that it is there to save my life. Again minor. Ask about CGMs (probably tomorrow’s question): lately I’ve had trouble removing the sensor from my arm without actually ripping off a strip of skin or very bad bruising. I’ve read about using baby oil for removal. That does help. I’m a rip it off fast person, but that didn’t work so well.
    • 12 hours, 54 minutes ago
      Gerald Oefelein likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 1 day ago
      Kate Kuhn likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 1 day ago
      Kate Kuhn likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      What? We’re now advertising in this space? Delete this post!
    • 1 day, 1 hour ago
      Neha Shah likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      Yes, I had one done and the results were very high in the upper 400s. I have my wonderful cardiologist to thank for recommending it as even after a normal stress test that was still somewhat suspicious. He thought further testing was advisable due to my 65 years of diabetes. The complaints that I had been having for years were not terribly specific, but just overall being way more exhausted than I thought I should be for my age and a bit of shortness of breath, but no chest pain. My doctors had been just saying that I was probably out of shape and that was what was causing the symptoms but this doctor really was proactive. This test shows calcium buildup, of course, in the arteries which is somewhat different than fatty plaque buildup in the arteries that can only be seen at the Cath Lab. My next step was to go to the Cath Lab where they found four major blockages in my heart and thank goodness we found them. I eventually ended up having four stents put in during two additional procedures. The last one was very stubborn because of the amount of calcium and I had to go to the university of Washington where they were able to do a procedure to drill the calcium out of the artery before they could get in there to place the stent. Heart disease is a very real concern for those of us with long-term diabetes, and although I am a retired dietitian and have always eaten an excellent diet with yearly lipid panel results looking excellent this still happened. The procedure took less than an hour and they do put an iodine die in your vein to make everything easier to see. My Medicare Advantage Plan paid for it except for my copayment which I believe was around $300 which is similar to what I have to pay for things like an MRI. The doctor does have to justify this test by certain symptoms and other previous test results.
    • 1 day, 5 hours ago
      lis be likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience people have heard of Type 2 Diabetes so if I say Type 1 that makes sense in that if there is a Type 2 there must be a Type 1 also. That is the extent of their understanding. In healthcare there is a bigger failure where "diabetes" or "type 2 diabetes" is used as a shorthand of a set of conditions often seen together. See any research paper by any cardiologist ever. This lack of precision leads to incorrect risk evaluations and incorrect treatment of people with diabetes caused by other factors including autoimmune aka Type 1.
    • 1 day, 5 hours ago
      lis be likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 1 day, 8 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      I have, and I do show calcium build up and hardening of the arteries. No action has been taken yet at this time. However, I am taking Repatha for better control of my cholesterol and it has been working great.
    • 1 day, 8 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      Yes, I had one done and the results were very high in the upper 400s. I have my wonderful cardiologist to thank for recommending it as even after a normal stress test that was still somewhat suspicious. He thought further testing was advisable due to my 65 years of diabetes. The complaints that I had been having for years were not terribly specific, but just overall being way more exhausted than I thought I should be for my age and a bit of shortness of breath, but no chest pain. My doctors had been just saying that I was probably out of shape and that was what was causing the symptoms but this doctor really was proactive. This test shows calcium buildup, of course, in the arteries which is somewhat different than fatty plaque buildup in the arteries that can only be seen at the Cath Lab. My next step was to go to the Cath Lab where they found four major blockages in my heart and thank goodness we found them. I eventually ended up having four stents put in during two additional procedures. The last one was very stubborn because of the amount of calcium and I had to go to the university of Washington where they were able to do a procedure to drill the calcium out of the artery before they could get in there to place the stent. Heart disease is a very real concern for those of us with long-term diabetes, and although I am a retired dietitian and have always eaten an excellent diet with yearly lipid panel results looking excellent this still happened. The procedure took less than an hour and they do put an iodine die in your vein to make everything easier to see. My Medicare Advantage Plan paid for it except for my copayment which I believe was around $300 which is similar to what I have to pay for things like an MRI. The doctor does have to justify this test by certain symptoms and other previous test results.
    • 1 day, 8 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      Thank you. Your write up is concise, cogent, and convincing. 🎀
    • 1 day, 8 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      After 16 stents and a new aortic valve, I've had every scan imaginable and she just keeps on tickin'.
    • 1 day, 8 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      Just googled it and most insurance plans including basic Medicare do not cover it. Said cost ranges $100-400 with out-of-pocket being $100-150 (although I don’t understand that if not covered by insurance).
    • 1 day, 9 hours ago
      Patricia Dalrymple likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 1 day, 9 hours ago
      Patricia Dalrymple likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      What? We’re now advertising in this space? Delete this post!
    • 1 day, 10 hours ago
      Lynn Smith likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 1 day, 13 hours ago
      Lawrence S. likes your comment at
      On average, how often do you adjust insulin based on CGM trend arrows rather than your current glucose number alone?
      This is a good question! but it does lead to so many other questions.
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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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