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    • 4 hours, 5 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      Before the onslaught of Type 2 Diabetes, I, as a T1D, could get an appointment almost anytime I needed one. Now, I cannot get an appointment within 3 months, which is the time within I must see rhe doctor for Medicare benefits. My doctor cancelled 2 (half ) of my sppointments last year. Caused ma a lot of problems. I live in Florida, a place where modern medicine does not seem to have reached yet.
    • 4 hours, 6 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      I routinely see my Endo every three months. At the end of my appointment I schedule the next quarterly meeting date. But if I ever have to reschedule it, then it takes anywhere from two to four weeks to find a time that works for us.
    • 6 hours, 2 minutes ago
      Mike S likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      It all depends on the urgency of my needs. I’ve gotten in the next day before, but those days may be gone! It also depends on who I see. But these days, even the PA is often booked. Of course, cancellations happen, so that can be a factor as well.
    • 6 hours, 18 minutes ago
      Jeff Marvel likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 17 hours, 29 minutes ago
      Gerald Oefelein likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 21 hours, 17 minutes ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of the 3-4 hours is way ting on a phone
    • 21 hours, 20 minutes ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 22 hours, 2 minutes ago
      Wanacure likes your comment at
      When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
      The resources I use in managing my glucose levels once sick is my own personal experience after living with t1d for 46 years
    • 22 hours, 2 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Switching to Medicare has created (seemingly) endless hours and day making this transition with all things diabetes related. We’re still in the midst of making this ā€˜delightful’ change. This week we learned that Medicare covers Either CGM stuff OR glucose test strips. Thank goodness that God is sovereign over all these details. He helps me walk through these challenges without despair.
    • 22 hours, 4 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The last 3 months have been filled with frustrating phone calls now that I switched back to traditional Medicare from a Medicare Advantage plan. I have been fighting to get strips authorized in addition to CGM- they did not authorize them because I had no proof that I had a meter!! Crazy making! I had to write an appeal letter in order to get them, but finally got it worked out. I also had some pump replacement issues, trouble getting insulin, etc.
    • 22 hours, 9 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 22 hours, 10 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Much too much time! Part of it, I know, is my own fault, for not keeping anxiety at bay when I have to sort out which plan will work best, annually. But it is something I dread, every single year. When I call to get some help understanding, the people are almost always very nice, but I have had times when the information was incorrect or not explained clearly. I usually commiserate with the person on the phone for having such an annoying system, and agreement seems to rule the day. But I never chose to make sorting out insurance management a career!
    • 22 hours, 11 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 22 hours, 12 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 22 hours, 12 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 22 hours, 48 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I’m a reasonably satisfied MDI user with Lantus and Fiasp. I’ve looked into getting a pump but honestly, until I find one that does everything I want, I’ll probably hold off. My wish list for a pump: 1) no tubes 2) works well with Fiasp 3) controls that allow me to stay at my target of 70-90 mg/dl all night long.
    • 22 hours, 59 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      MDI for the past 60 years and do not see any alternative that I would prefer. The needles for my pens are so thin and sharp that they are painless (a far cry from the lancets I once used). chiefly, I am glad not to have to deal with setting up a pump and. Although I love my libre, I am not good candidate for having devices affixed to me. If my insulin delivery got interrupted they way i have interrupted my cgm service, I would have been in trouble. Furthermore, I have a track record of having both mechanicall and electronic things malfunction. (Seriously, I sometimes act as a beta-tester for technology folks. Maybe I push to many buttons?)
    • 23 hours, 11 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I've had Tandem x2 and Dexcom since September. Previously on Medtronic for around 15 years. Grew to HATE the sensors and switched before the warranty on my last Medtronic was up. So far, I absolutely LOVE the Tandem and the Dexcom. I'm disappointed, however, in the amount of waste and plastic that this pair creates. Of course there will always be plastic waste from any pumps/sensors, but the amount of non-reusable stuff for insertions is ghastly.
    • 23 hours, 12 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      Have your doctor prescribe the syringes with .5 unit increments instead of the 1 unit syringes. Not quite a .1 unit which you are hoping for, but .5 is better than 1 unit increments.
    • 1 day ago
      Ahh Life likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 2 hours ago
      ConnieT1D62 likes your comment at
      In your own words, how would you describe the feeling of a severe low?
      Nothing short of terrifying. I often go into seizures, having no idea where I am, who anybody, or even if I’m alive or dead. I’ll feel like I’m falling or hurtling toward something. At home I feel like my house is tilting. Im leaving a lot out but these are some of the scariest things.
    • 1 day, 2 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of Europe has the right idea! Is it a good health system for you overall? The US may be too large to implement a national system, but that doesn't hold states back (as long as there is federal money to help).
    • 1 day, 2 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 2 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 1 day, 2 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      PUMP USERS: Just in case nobody has told you, if you use a pump, Insulin is considered durable medical equipment, which can save a lot of money, even with the new price cap
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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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    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, ā€œBy the way, have you been thirsty?ā€ 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. šŸ™„

      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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