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    • 13 hours, 38 minutes ago
      Greg Felton likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 14 hours, 10 minutes ago
      ConnieT1D62 likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      One time I was explaining that a new pump would be too expensive at the time because my deductible had just started over.. and she asked if I had insurance and I said yes….. then she said “then it should be free with insurance.” 🤦‍♀️ She may know a little about the challenges of living with diabetes, but she knows nothing about how insurance works or how costly T1D supplies are.
    • 14 hours, 28 minutes ago
      Steve Rumble likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 14 hours, 59 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I am an RN. Been going to same doctor for about ten years. Took me six years to train him. I am very well read when it comes to my LADA. He trusts my judgement and gives me excellent parameters to make decisions. Recently had a bad case of Covid. Insulin needs changed dramatically. Getting back to normal but he made sure I had scripts to cover my ups and downs with insulin needs.
    • 15 hours ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Mine acknowledges the struggles and challenges that go along with managing T1D in my daily life. She gives suggestions as to what may or may not help and has often asked me I how I handle situations so she can give suggestions to other T1D patient's.
    • 15 hours, 1 minute ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      None of my endocrinologists or NPs have had T1D but I always discuss my challenges and they are incredibly helpful. What I always find astonishing is they are constantly amazed at how well I’m doing even when i don’t think I’m doing that well because most of their patients have nowhere near the A1c’s I’m able to achieve. And just hovers in the 6’s!
    • 15 hours, 26 minutes ago
      Jubin Veera likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      The hard spots are fairly frequent with the pump infusion sets. Especially if I go past 3 days which I try to avoid! I don’t think I ever got one from injections. I try heat and massaging to treat them and they normally go away after a day or so. Once I had a large area that I had to treat with antibiotics.
    • 15 hours, 28 minutes ago
      Magnus Hiis likes your comment at
      Have you experienced any symptoms of physical sexual dysfunction as a result of having diabetes, or having diabetes-related complications?
      I’m 79. My last orgasm was springtime about 3 or 4 years ago. When I complained of ED, my PCP Rxd 3 to 5 (60-100 mg) sildenafil tablets by mouth about one hour prior to sexual activity. This alone hasn’t worked to bring me up to former sexual capacity that I had 10 years years ago. I’m still considering consulting finding a doctor who’ll prescribe a safe but effective way of administering testosterone or an anabolic steroid in a dose low enough to avoid causing cardiovascular problems but high enough to restore normal ability that I had up to my sixties. My present doctors say it can’t be done, but there are doctors who advertise otherwise. Analogs of the hormone insulin can be delivered in small safe doses, why not testosterone?
    • 1 day, 7 hours ago
      Becky Hertz likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      We are all so very different, and trying to say that all of us with T1 understand what it's like for another who has the same hill to climb is unproductive. Having a health care provider with T1 may often be helpful just because there's apt to be more knowledge about the specifics. How we respond to the disease is such a personal matter, that I really don't think there are any guaranteed benefits beyond the grasp of the factual. Finding a doc with the same general attitude about the disease does feel good, and sometimes that's all I hope for after working hard to make peace with the disease for 70 years. Asking my doc to "get it" used to be almost my mantra, but I've come to realize that the ones who don't just see us as unruly childrenchildren
    • 1 day, 7 hours ago
      Becky Hertz likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Both my endocrinologist and my nurse practitioner are great. They compliment me on the way I take care of my life and health and make aure I get all the supplies I need managing all the paperwork Medicare and insurance requires. My nurse practitioner who works with me on managing the pump has her own opinion about the pump settings based on her technical knowledge which is different than what I do with my settings based on living with them. She has thru the years learned to respect what I do and is surprised with how my settings work. So we are now at peace. Both very supportive.
    • 1 day, 10 hours ago
      pru barry likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 10 hours ago
      mojoseje likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I said yes but that refers to my nurse practitioner who sees me every other visit, if not more often. The doctor may know how hard I try but perhaps takes my efforts for granted.
    • 1 day, 13 hours ago
      Anneyun likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      How can someone without the disease really understand what it is to live with it? I have never had a doctor with T1D in 60 years.
    • 1 day, 13 hours ago
      Bruce Schnitzler likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 13 hours ago
      Kristine Warmecke likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My endo is young, very empathetic, thorough, always asks for my input, and does research. I am blessed too. have him, and the one before for over 25 yrs.
    • 1 day, 13 hours ago
      Kristine Warmecke likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 13 hours ago
      lis be likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      None of my endocrinologists or NPs have had T1D but I always discuss my challenges and they are incredibly helpful. What I always find astonishing is they are constantly amazed at how well I’m doing even when i don’t think I’m doing that well because most of their patients have nowhere near the A1c’s I’m able to achieve. And just hovers in the 6’s!
    • 1 day, 14 hours ago
      Daniel Bestvater likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 14 hours ago
      TEH likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 15 hours ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I have no clue what my T1D health care provider understands about my daily challenges and I don’t know about his daily challenges either. Not sure why I should care as long as I have access to information how to best take care of myself.
    • 1 day, 15 hours ago
      Jeff Marvel likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 15 hours ago
      Richard Wiener likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 2 days, 6 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Hi Connie, I still have my glass syringe and show it off occasionally. We boiled the needle and syringe every morning and sharpened the needle with a file. I was diagnosed at age 6 in 1963. Life is so different now! Then, my diet was extremely limited as was my exercise. Now, I am very active and eat pretty much as I please. I maintain an A1C in the low 6s (6.2 was my last).
    • 2 days, 6 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Connie and Beth, I was diagnosed in Nov 1962, age 10. During the early years I developed lumps and indentations on my upper thighs from my injections. In fact, I was able t o spot other t1 kids in my junior high school based upon the lumps in their upper arms.. (I eventually met up with them and learned that I was correct.) By the time I reached my twenties, these indentations had more or less disappeared, but I still have remnants of the lumps. I wish I could say that the layers of tissue now deposited on my legs disguises them, but they don't. I think the changes in insulin have been responsible for this improvement: the isolation and purification of animal insulins were refined, and then the various human clones were game changers in many ways.
    • 2 days, 6 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Yes in my upper arms when I was a petite and skinny child in the 1960s with T1D. In those days we used glass syringes with stainless steel 1/2 inch long heavy gauge needles. My mother would jab me in the upper arms, it hurt like the dickens, and I developed several hard nodules. I was diagnosed at age 8 in December 1962 and after the initial two months of her jabbing me in the upper arms, I took over giving my own "shots" and started self injecting via site rotation in my thighs for several years. Eventually the lipohypertrophy in my upper arms resolved and I never injected there again until many years later as an adult on MDI using disposable syringes with very short and fine gauge needle tips. Periodically I would give my tired pin cushion thighs a rest and take a break for a few months or a couple of years and rotate injections in my abdomen or upper arms. Have been using a pump for over 20 years now and rarely use MDI unless I am taking a pump break for a short period of time. Happily, I no longer have lumpy sites.
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    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.

    Home > LC Polls > 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.
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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.

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    If you wear any devices, how many times in the past month have you accidentally ripped out a sensor or pump site?

    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community 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. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    19 Comments

    1. LizB

      I chose that I was diagnosed as an adult but NOT misdiagnosed because I was technically an adult – 19 years old. My sister was in her late 40s when she was diagnosed and she was also diagnosed correctly.

      2 years ago Log in to Reply
    2. Beth Franz

      Misdiagnosed as T2 while in DKA at age 40… put on wrong medication and almost pushed back into DKA with 350 blood sugars for almost a week while waiting on the antibodies test results. It was a frightening and unnecessary situation.

      1
      2 years ago Log in to Reply
    3. Kristen Hamilton

      I was misdiagnosed at 15 and before, but I don’t consider that an adult. My husband was diagnosed at 62, but was misdiagnosed as a type 2.

      2 years ago Log in to Reply
    4. Kathy Hanavan

      I was misdiagnosed as type 2 by a PCP at age 38 despite classic T1D symptoms and put on a sulfonulurea. On my own, I sought out an endocrinologist and was immediately put on insulin. The rest is history.

      2 years ago Log in to Reply
    5. Grey Gray

      Diagnosed at 17 I thought I was an adult. But DKA in the 80’s caused my diagnosis. I never heard of these other things before 20 years ago. Except gestational which I would be precluded from.

      2 years ago Log in to Reply
    6. connie ker

      I was 49 years of age as my husband called his endo Dr. who put me on insulin over the telephone from the reading of HIgh on my husband’s meter. When I saw this specialist 3 hours away, he said I am puzzled because you don’t look like a type 2 diabetic. I was going through menopause and was put on birth control which seemed to trigger the high numbers. But nonetheless, I needed insulin to eat food and keep the numbers down. So the specialist called me a 1 and 1/2 – inbetween a 1 and a 2. Then the term LADA came into being, and from being a 1 and 1/2, I am now a type 1 with LADA. I am not overweight and it seemed to be an autoimmune attack at menopause. My local GP tried glucophage which made me sick to my stomach.

      2 years ago Log in to Reply
    7. Alyne Branson

      I was 21 in college and the student health services diagnosed me with a bladder infection. I got sicker and they switched me to a different antibiotic. I got sicker and went to my boyfriends family doctor who diagnosed me with ulcers. I got sicker and sicker and finally went to emergency room where they did a blood test and diagnosed me as Type 1. It was a tough week and all right before finals.

      2 years ago Log in to Reply
      1. William Bennett

        Sounds a bit like my story. I was 28, in grad school, exams and essays were bearing down, and I thought it was just some weird kind of stress reaction. Kept getting worse. And what did ravenous thirst and peeing have to do with anything??? Fortunately my M-I-L was a medical professional and told my wife it might be diabetes. Dr said I was maybe 24 hrs from aka (“you probably wouldn’t have been able to wake your husband up tomorrow morning”). I was correctly dx’d, but it was 1983, before the T1 nomenclature was introduced, so it says “Juvenile type” on my record.

        2 years ago Log in to Reply
    8. Rebecca Lambert

      I was diagnosed at the ER in DKA. I believe that’s why I got the correct diagnosis. Had it been through regular doctor appointments, I’m not sure I would have been diagnosed correctly due to my age 45 at the time).

      2 years ago Log in to Reply
    9. Trina Blake

      1982, I was 30 years old, so the Dx was T2. No risk factors (especially in the family tree), classic T1D symptoms. After a feww months of scolding, I was put on 15U of Nph once a day and sent on my way. Of course, I figured that was it, did the injections and then DKA. Found by a neighbor. Got the correct Dx in the ER

      2 years ago Log in to Reply
    10. Jana Foley

      I was 40 when I was first diagnosed as a T2. Seeing no reason to question that, I went on oral meds for treatment, but could never get my BG below 300. It averaged between.400 – 600 most of the time. I just thought I was a bad diabetic. My youngest two children were diagnosed 6 years later, so started the fight with their T1D and didn’t worry about mine. When sitting in on a training with my son, I said something that made his CDE question my diagnosis. I chose to start seeing his endo who changed my diagnosis and treatment to that of a T1. I now have an A1C of 5.5 with 93-4% time in range. It’s been nice, but the retinopathy I now deal with makes me wonder if all those years of being so high all the time could have been prevented with a proper diagnosis to begin with. That’s a question I will never know the answer to now.

      2 years ago Log in to Reply
    11. Annie Wall

      It’s so interesting to read what happened to others. I was 32 in May 1980 and had unexplained weight loss so I decided to schedule a physical. They said they would schedule it in September so I said, let me tell you why I think I need a physical and told them about the weight loss. They said, we’ll see you tomorrow. My GP did a quick blood test and told me I had juvenile diabetes. He wanted me to have a glucose tolerance test at the hospital the next day. As he was leaving the exam room, he said, “By the way, have you been thirsty?” I just about fell off the table. I had been constantly thirsty for months and peeing every 5 minutes. Had all the classic symptoms and had thought they were just weird, except for the weight loss.

      When I went for the glucose tolerance test, they did my fasting blood sugar and came back to say that the glucose tolerance test would make me sick and that my doctor had all he needed for my diagnosis.

      I walked in a haze, as there was no diabetes whatsoever on either side of my family going back generations. 40+ years later, I’m still the one and only.

      2 years ago Log in to Reply
    12. Tracy Jean

      I was 32 and developed blisters on my hands, feet and face. After many different diagnosis, including a dermatologist who accused me of putting acid on myself, my mother asked them to do a blood sugar test. I was over 500, and diagnosed as Type 1.

      2 years ago Log in to Reply
    13. Sasha Wooldridge

      Electrolyte imbalance. Because I was thirsty. 🙄

      Then they eventually diagnosed me correctly with T1 but treated it as T2 insulin-dependent. I got long-acting insulin only for the first year until I got in to see a specialist and it was awful.

      2 years ago Log in to Reply
    14. Marie Cardinell-Daldry

      I was pregnant when my glucoses were found to be elevated. After delivery it was then decided I was Type2. However My elevated glucoses persisted even though I was normal weight and oral medications had no effect. Furthur testing was done by another endocrinologist and it was decided I was a Type 1. I have a younger brother who was diagnosed at Age 7.

      2 years ago Log in to Reply
    15. John Dowd

      Diagnosis didn’t pertain to me, as I had passed gall stones that damaged my pancreas which ultimately abscessed and was removed, making me an instant type 1 diabetic.

      2 years ago Log in to Reply
    16. Jneticdiabetic

      I was diagnosed correctly by my family and then family doctor at 18 y/o (adult-ish). Was a week before my first set of finals in college. I had lost 10lbs in a couple months that I couldn’t afford to lose, increased thirst, falling asleep in class after lunch, leg cramps at night (due to dehydration). My mom suspected diabetes so I got urine glucose test strips at the drug store and the whole family tested. Mine was the only one that changed colors. Made an appt with with doctor, who did official lab work. Fasting BG was mid-300s, no ketones. My fasting BG at my physical exam just 2 months earlier had been 121. I feel fortunate that we caught it before DKA set in.
      My mom was diagnosed later with T1D at age 57, but only be after being misdiagnosed as a T2D. She presented with fasting BG in 300s like me at her annual physical. Due to her age doctor assumed she had type 2 and put her on multiple oral medications for the next few months that did not improve her sugars. I finally convinced her primary doctor to test her autoantibodies (double positive) and c-peptide (barely detectable). That finally convinced her endo to start insulin. Thankfully, it seems there is growing awareness that T1D is not just juvenile diabetes anymore.

      2 years ago Log in to Reply
    17. Tom Caesar

      At 17 I lost focus with my eyes for a brief time. Eye Dr said I was tired. Two years later happened again and eye Dr accused me of using marijuana. Six months later went to family GP who recognized diabetes. Marking 51 years now T1

      2 years ago Log in to Reply
    18. kilupx

      I was 66 and my internist found elevated glucose in a routine blood test. He told me I was type 2 and prescribed Metformin, which made me feel like I was walking through a tunnel made of Jello while half asleep. My brother had been type 1 from the age of 9 and growing up I was very familiar with his symptoms and his care. It never occurred to me that someone old enough for Medicare was a type 1. But I didn’t like my treatment. When I asked internist for a recommendation for an endocrinologist, he told me type 2 was his “bread and butter” and he dealt with it all day long and a specialist wasn’t necessary. On my own I found the Mount Sinai Diabetes Center and a great doctor there told me, before even testing, that he guessed I was type 1. And I was LADA–was able to manage at first on low carb diet and didn’t go on insulin for 2 years.

      2 years ago Log in to Reply

    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. Cancel reply

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