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    • 6 hours, 47 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)
    • 6 hours, 47 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.
    • 6 hours, 48 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?
    • 6 hours, 48 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.
    • 9 hours 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. 😬
    • 11 hours, 33 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.
    • 13 hours, 27 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.
    • 14 hours, 52 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
    • 15 hours, 35 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. 😬
    • 15 hours, 36 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.
    • 16 hours, 9 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, 3 hours 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, 3 hours 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, 5 hours 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, 8 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, 8 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, 12 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, 12 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, 12 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, 12 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, 12 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, 12 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, 12 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, 13 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, 16 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 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.

    Home > LC Polls > 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.
    Previous

    If you were misdiagnosed with something else before being diagnosed with T1D, did you end up in DKA due to the misdiagnosis?

    Next

    If you were diagnosed with T1D as an adult, were you first misdiagnosed before you got the correct diagnosis? If yes, with what were you misdiagnosed? Select all that apply to you.

    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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    22 Comments

    1. Kimberly Green

      my mom actually diagnosed me and asked to be tested specifically for it. They looked at her like she was insane, but did the ketone test, and BG and I was large and in the 400 range. not in DKA at the time of diagnosis yet though.

      5 years ago Log in to Reply
    2. Alanna_W

      As an 11 year old girl, I spent a few months going to the doctor with signs and symptoms and we were always told it was just hormonal changes/puberty. Nope. T1D.

      5 years ago Log in to Reply
      1. Kristine Warmecke

        I was 11, too, and my Mom was pushing for it to hormonal changes. Everyone looked at her like she was crazy, my brother had been diagnosed 10 years earlier.

        5 years ago Log in to Reply
    3. Richard Vaughn

      My parents took me to three doctors in 1945. Those doctors did not make a diagnosis. I was given a tonic to increase my appetite. I had stopped eating.
      A fourth doctor had my blood sugar tested and I was finally correctly diagnosed, a few days after my 6’th birthday in September, 1945.

      4
      5 years ago Log in to Reply
    4. Kristen Schell

      I was diagnosed in 1987 and had lost a lot of weight as a child and was very thirsty. My mom set an appt and we got lucky and the pediatric type 1 expert was the doctor I met with and he immediately knew what was wrong and I was shortly on my way to Children’s Hospital for a week.

      5 years ago Log in to Reply
    5. cynthia jaworski

      The first diagnosis was that my mother, who had reported my symptoms, was neurotic and needed counseling. One urine test later (insisted upon by mom) and a subsequent blood test confirmed the correct diagnosis.

      1
      5 years ago Log in to Reply
      1. KarenM6

        Hi Cynthia – that happened to my Mom, too! My poor Mom ended up having to yell at the third doctor because they all just thought I was a liar and she was worrying too much.

        5 years ago Log in to Reply
    6. Jana Foley

      Both of my youngest two children were correctly diagnosed at the ages 6 and 11, just 3 months and 4 days from one another. We had a phenomenal pediatrician.

      5 years ago Log in to Reply
    7. Rose Lentzke

      My grandmother was concerned because I constantly asking for water. My parents took me to children’s hospital where I was diagnosed in 1956 at age 4.

      1
      5 years ago Log in to Reply
    8. Janis Senungetuk

      After a three month onslaught of chickenpox, bronchitis and measles my mother took me to the pediatrician because I accidentally wet my bed. I was 8 years old. After answering a few questions, he did a urine test in the office, then sent me to the hospital for a blood test. He told my mother he thought it might be diabetes because “it ran in the family”. This was 1955, genetic studies were a long way off, but because my doctor knew my grandfather had diabetes, his guess was correct.

      1
      5 years ago Log in to Reply
    9. Brianna Lyons

      I actually diagnosed myself when I was 10. My father was T1D and was constantly telling me and my little sister to watch out for symptoms (increased thirst, urination, etc) and encouraging us to use the ketone strips he had in the house. One summer day I was annoyed with how often I was going to the bathroom, and thought I needed to check- but couldn’t find the strips. When my parents got home from work, I asked for “the pee strips” and my mother insisted I didn’t have diabetes. I said I wanted to check anyway, and sure enough: ketones. My dad took me into the kitchen and used his blood sugar meter: BG ~300. The next morning he and I went to the hospital for my official diagnosis.

      5 years ago Log in to Reply
    10. HMW

      After showing several symptoms at age 7, my mom took me to the pediatrician who immediately sent us to the Hospital for Sick Children in Toronto. They were the first hospital in the world to administer insulin to patients and their endocrinology team specializes in type 1 diabetes.

      5 years ago Log in to Reply
    11. Marla Peaslee

      I was dx in 1967, at the age of 5. I was in DKA. We had just returned, from living in Germany, to the USA. I am a military brat. My sister and I were staying with our grandparents for two weeks and 55 miles away our parents were house hunting. My grandparents thought my lack of appetite was due to difference in foods I was used to eating in Germany. Frequent urination and thirst. Once my parents returned my mother knew immediately I was ill and took me to our pediatrician. This wonderful man told my parents I was dying and to put me in the car and follow him to the hospital. He knew I was in DKA and said we didn’t have time to call for an ambulance. He took care of me for many years to come.
      My son was dx at 21 months of age, by me and then confirmed by his MD.

      1
      5 years ago Log in to Reply
      1. Ahh Life

        We lived and worked in Kaiserslautern 1976-1977, then Zweibruecken 1978-1981. The insulin co-pay at that time was $1. Ahh, the good ol’ days. ( ♥ ͜ʖ ♥ )

        5 years ago Log in to Reply
    12. Julie Akawie

      I was dx at the age of three — had been lethargic, thirsty, etc for nearly a week. One day, I had been playing in my older sister’s room, and Mom came in to tell me to put her things away because she would be home from school soon. Mom found me non-responsive and called an ambulance. My blood glucose was 1600 at the time of admission in 1970, and I was in the hospital for 8 days.

      To this day (more than 50 years later), she feels ashamed that she didn’t recognize how sick I was. I remind her that there was nothing to be done about it, even if she *had* noted it earlier.

      5 years ago Log in to Reply
    13. Sue Herflicker

      My son was diagnosed at 23 months old and was in the hospital for the stomach flu. He was sent home even after I asked them to check for diabetes, being my brother had it as a juvenile. I was told I worry too much… Hence 2 weeks later we ended up at CHOP in Philadelphia with an extremely sick child.

      5 years ago Log in to Reply
    14. Nicholas Argento

      My BG was 564 when I presented to the ER at 8 yo, having lost weight and peeing every half hour. It was not a hard call….correct diagnosis amde.

      1
      5 years ago Log in to Reply
    15. KarenM6

      At 5 and I had all the classic symptoms, frequent urination, lack of appetite, lethargic, losing weight, funny breath odor… (probably more symptoms, but you get the idea). The first 3 doctors said I wasn’t sick, that I was faking it, that I was a liar, and that it was all in my head and I was just trying to get attention.
      The 4th doctor got it right. He put me in an ambulance for the nearest hospital.

      5 years ago Log in to Reply
    16. Michelle Saunders

      It was initially thought that I had a bladder infection. After a weekend of being on antibiotics and no change, the doctor had blood work done to confirm his suspicions that I had type 1.

      5 years ago Log in to Reply
    17. Ben Galindo

      Diagnosed in 1957 at age 10, was ill for 1week. Family doc said it was stomach flu. I became unconscious, taken to LA County Hospital, admitted for 2 weeks. Spent most of time learning how to take care of myself test tube urine testing, glass syringes & SS needles (boil).

      2
      5 years ago Log in to Reply
    18. Megan W

      My Mom did medical transcription for a small family practice and was close to the doctors. She recognized my symptoms from things she heard when doing transcription and asked for me to be tested. She was correct, and I was correct too as I thought I had strep throat and I did. I was 10.

      5 years ago Log in to Reply
    19. Leona Hanson

      I was diagnosed as a pre diabetic when I was 7 the doc was right but not a t1d

      5 years ago Log in to Reply

    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. Cancel reply

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