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    • 4 hours, 8 minutes ago
      KCR likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      None of the specialists I’ve seen have suggested, recommended or prescribed methods for doing this in the lovely 40 years I’ve been T1D. My 80th birthday is the summer. It will officially be half of my life.
    • 6 hours, 6 minutes ago
      Derek West likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I test when I have unexpected, or stubbornly high blood glucose that just won't go down. I also test when I feel sick. Testing, for me, involves putting urine on a strip, either by peeing directly or dipping the strip into urine. I may use about 2 or 3 strips in a year. When I test positive, I increase my insulin dosage to a "sick day" level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out.
    • 10 hours, 41 minutes ago
      Marty likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I test when I have unexpected, or stubbornly high blood glucose that just won't go down. I also test when I feel sick. Testing, for me, involves putting urine on a strip, either by peeing directly or dipping the strip into urine. I may use about 2 or 3 strips in a year. When I test positive, I increase my insulin dosage to a "sick day" level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out.
    • 10 hours, 41 minutes ago
      Marty likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I have a blood ketone monitor. It works just like a glucometer.
    • 12 hours, 30 minutes ago
      Kathy Hanavan likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      Perhaps only the poets who love alliteration could love the phrase, “killer ketones.” The ungodly pain experienced is your body eating and devouring itself. 🥵 Ketones are relentless killers. Do not give the bad guys a chance.
    • 12 hours, 36 minutes ago
      atr likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I test when I have unexpected, or stubbornly high blood glucose that just won't go down. I also test when I feel sick. Testing, for me, involves putting urine on a strip, either by peeing directly or dipping the strip into urine. I may use about 2 or 3 strips in a year. When I test positive, I increase my insulin dosage to a "sick day" level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out.
    • 13 hours, 12 minutes ago
      Judith Halterman likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      Perhaps only the poets who love alliteration could love the phrase, “killer ketones.” The ungodly pain experienced is your body eating and devouring itself. 🥵 Ketones are relentless killers. Do not give the bad guys a chance.
    • 1 day, 7 hours ago
      Anthony Harder likes your comment at
      Do you have ketone testing strips?
      Hi, Marty. Does your specialist have a source for that claim? It makes little sense that ketones would rise faster than BG since the metabolic pathway is much slower. If there's a source, however, I'd look further into the claim. FWIW, I've been a Type 1 for over 50 years; I can't remember the last time I tested for ketones. I possess no ketone testing strips.
    • 2 days, 9 hours ago
      Marty likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      Covers it with co pay
    • 2 days, 11 hours ago
      atr likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      It covers both. I prefer to have the the nasal version as I think it would be easier for someone else to administer.
    • 2 days, 12 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      I’ve been T1D for 60 years. As a child my mother didn’t like needles or injections so she just fed me when low. In college, explained use to dorm mates and classmates would’ve been a waste of time. Now married, my wife assumed the role of my mother and doesn’t like using needles on me either. I don’t have glucagon.
    • 2 days, 12 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      Yes, always have one or two nasal glucagon kits (Baqsimi) at home in easy to reach locations (ie at bedside and special container in living area) and always keep one with me when I go out ( along with glucose tabs or other simple carbs for treating LBS.). I apparently required injectable glucagon several times as a child and needed injectable glucagon only twice as an adult, both more than 15 years ago . More recently I needed my husband to give me Baqsimi after eating a difficult to dose for, high fat meal. The experience was terrifying so I don’t go anywhere without it now.
    • 2 days, 13 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      I actually have 2 non-expired prescriptions. One for Baqsimi and one for Gvoke. I have not filled either of them because they’re $500-600 each.
    • 2 days, 13 hours ago
      Lawrence S. likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      My Medicare Part D essentially doesn't cover glucagon when any form is nearly $500!
    • 3 days, 3 hours ago
      Amanda Barras likes your comment at
      Do you have a non-expired glucagon prescription?
      Same here. Been as low as 19 (struggling with a vacuum cleaner bag and refused to let it win) but was still able to swallow food. I did used the “red needle” as my husband refers to it once when I went low but was scheduled for surgery and couldn’t eat or drink anything. Only once in 26 years. Fortunate.
    • 3 days, 22 hours ago
      Karen Newe likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 11 hours ago
      Natalie Daley likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 12 hours ago
      atr likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 12 hours ago
      Lawrence S. likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      I don't do T1 podcasts.
    • 4 days, 12 hours ago
      Lawrence S. likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 13 hours ago
      Gary Taylor likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 5 days ago
      Amanda Barras likes your comment at
      Which T1D influencers do you enjoy following?
      Currently it’s the Diabetech, Justin Easter.
    • 5 days, 9 hours ago
      ChrisW likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      I don't do T1 podcasts.
    • 5 days, 10 hours ago
      Kathy Hanavan likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      TCOYD Diabetes Nerd Your Best T1D Year Think Like a Pancreas
    • 5 days, 10 hours ago
      Kathy Hanavan likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
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    Have you ever rationed insulin (taken less than you needed in an effort to prolong your supply)? If so, how recently have you rationed insulin?

    Home > LC Polls > Have you ever rationed insulin (taken less than you needed in an effort to prolong your supply)? If so, how recently have you rationed insulin?
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    If you or someone in your immediate family has T1D, has the rest of your family been screened for T1D antibodies? If no, do you think your immediate family would be willing to be screened for T1D antibodies?

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    Has your T1D healthcare provider ever asked you to fill out a questionnaire about your mental health during your visits?

    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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Their collective expertise is central to our mission of improving outcomes for all people living with T1D.  “We’re excited to be working with our advisors given their deep expertise across a broad range of areas in T1D,” said Dave Walton, CEO of T1D Exchange. “Their involvement magnifies our reach, knowledge, and impact. These advisors are shaping the future of diabetes care — driving innovation across research, clinical practice, and quality improvement.”    Meet the Medical & Research Advisory Team  The T1D Exchange Medical and Research Advisory Team brings together four leading endocrinologists, each offering a unique perspective and shared commitment to advancing T1D care:    Jenise Wong, MD, PhD Pediatric endocrinologist at UCSF Benioff Children’s Hospital and Professor of Pediatrics in the Division of Endocrinology at the University of California, San Francisco Focus areas: Diabetes technology adoption and usability; health equity and access to care and technology; community-based and peer-support interventions; culturally responsive care          Jennifer Sherr, MD, PhD Pediatric endocrinologist at Yale Medicine and Professor of Pediatrics in the Division of Endocrinology at Yale School of Medicine in New Haven, Connecticut Focus areas: Clinical trials in diabetes technology (CGM and AID systems), disease-modifying treatments and immunotherapies, and emerging technologies and medications, including continuous ketone monitoring and nasal glucagon     Viral Shah, MD Adult endocrinologist at Indiana University Health and Professor of Medicine in the Division of Endocrinology and Metabolism at Indiana University School of Medicine in Indianapolis, Indiana Focus areas: Diabetes technology and adjunctive therapy trials; translational and data-driven research; T1D complications and bone health         Nestoras Mathioudakis, MD, MHS Adult endocrinologist at Johns Hopkins Medicine and Associate Professor of Medicine at Johns Hopkins University School of Medicine in Baltimore, Maryland Focus areas: AI-driven clinical support tools; EMR-based data analytics for clinical decision making; data-driven quality improvement; health equity in T1D care        This accomplished team’s expertise spans adult and pediatric endocrinology, research, and quality improvement affiliated with leading institutions nationwide. Collectively, they have authored over 500 diabetes publications and secured research funding from organizations such as the National Institutes of Health, Helmsley Charitable Trust, the American Diabetes Association, and Breakthrough T1D — while remaining actively engaged in both clinical care and research.  “These individuals represent an impressive body of work while remaining deeply involved in the day-to-day realities of diabetes care,” said Walton. Their expertise covers the full spectrum of T1D care — from AI and predictive analytics to complication prevention, automated insulin delivery, continuous glucose and ketone monitoring, GLP-1 treatments, health equity, mental health, autoantibody screening, and disease prevention.    Turning insight into impact  The team’s work goes beyond research, focusing on translating insights into real-world practice. By leveraging data to scale best practices, the goal is to drive meaningful, measurable change across clinics and communities.  “Our advisors will help to extend our impact — whether through QI strategy, research innovation, funding opportunities, or new data-driven solutions,” said Walton. “We want to take what’s working at individual centers and spread that as broadly as possible.”   He added, “As a Collaborative, we’re also focused on advanced population health strategies such as exploring predictive data models to identify risks earlier and intervene before complications even begin to happen.”    The power of the T1D Exchange Quality Improvement Collaborative  Central to this work is the T1D Exchange Quality Improvement Collaborative (T1DX-QI) — a nationwide network of clinics working together to improve care through shared data, benchmarking, and evidence-based practices.  “I’m thrilled to serve as a Medical Advisor for T1D Exchange, because I’ve seen firsthand the impact this network can have on patient care,” said Dr. Nestoras Mathioudakis. “T1D Exchange is the premier organization for quality improvement in type 1 diabetes, with unparalleled assets like a large EHR database and robust patient registry.”  He added that he is excited to apply his expertise in EHR research and big data analytics to generate real-world evidence across diagnosis, management, and outcomes.  Dr. Viral Shah echoed that perspective, reflecting on T1DX-QI's evolution: “I have been involved with T1D Exchange since its early days and have had the privilege of witnessing how it has transformed the quality of diabetes care across the United States. I’m delighted to return as a Medical Advisor.”  He emphasized the importance of accelerating impact. “I look forward to working closely with the team to accelerate the evidence generation and to help translate these insights to improve patient care.”   Dr. Jenise Wong highlighted the visible impact of T1DX-QI on the delivery of care. "I’m truly honored and grateful to be working with T1D Exchange as a Medical Advisor. 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    26 Comments

    1. Molly Jones

      Thank you! I have never needed to do so. So many things in life we take for granted, just read a book written a century or more ago or visit the hospital.

      1
      5 years ago Log in to Reply
    2. Don (Lucky) Copps

      We have a huge conflict of interest between diabetic health, insurance allocation and insulin pricing. Long ago insulin pricing was not a big issue but given big Pharma greed everyone is concerned. Insurance companies now force doctors to write prescriptions with the daily insulin use on a per patient basis. As a result if you make any kind of mistake, have a sickness and/or a need to use more insulin you will get squeezed on when you can get your next available prescription. it is incredibly unfair on the patient, also unrealistic.

      7
      5 years ago Log in to Reply
    3. Beth Franz

      Shameful to ever be put in this position in the first place and why as a patient we are forced to have these contingency plans to stay alive. I am a firm advocate of making insulin and cgm supplies OTC and prescription-free much like is done in other countries outside the U.S.

      4
      5 years ago Log in to Reply
    4. rick phillips

      I was an undergraduate about 45 years ago. What a mess. Don’t ever do it – we have ways today to help you get insulin. I promise just reach out

      5 years ago Log in to Reply
    5. Natalie Daley

      The copay for a two-month supply of Tresciba and Humologue is over $500, down from $727 a few years ago, due to recent legislation. I don’t eat lunch, which saves a third bolus and lowers Tresciba by a third, so I saved some money and lost 25 lbs, a win/win?

      5 years ago Log in to Reply
    6. connie ker

      I have never rationed insulin, however my T1D husband and I shared the Lantus vial so we didn’t throw half of it away before it got impotent. That worked well; we didn’t share syringes or Humalog. It was a conservative way of not wasting insulin.

      2
      5 years ago Log in to Reply
      1. Steve Rumble

        My T1D wife and I did the same thing!

        5 years ago Log in to Reply
    7. Sasha Wooldridge

      I chose other because I don’t use less than I need, but try to need less insulin by changing my diet. It allows me to stockpile a bit just in case I’m in a prolonged bureaucratic runaround with providers, suppliers, insurance companies, and pharmacies.

      2
      5 years ago Log in to Reply
    8. john36m

      It’s not exactly rationing, but as a pump user, I need to change the pump every 3 days. I try hard not to leave much or any extra in the pump when it is time to swap out.

      2
      5 years ago Log in to Reply
    9. Sahran Holiday

      Years ago Omnipod would fail shortly after activating full of insulin. Insulet refused to replace the wasted insulin. Went to 2 meals a day to reduce the amount of insulin make it last.

      5 years ago Log in to Reply
      1. Tod Herman

        Omnipod doesn’t tell you this (they probably cannot for liability reasons) but if your Pod died shortly (or anytime after starting it) you can extract most of the remaining insulin out of the Pod using the syringe from your next Pod kit

        1
        5 years ago Log in to Reply
    10. Kristine Warmecke

      Yes, I have been since starting on Medicare. As Novolog is not formulary in the state I live in. I have an exception for coverage, however my portion of it is $800+ a month; sorry on a fixed income no one can afford that.
      My endo and I have been waiting for 6 month’s to hear from Nova Nordisc to see if I’m approved for free Novolog.

      1
      5 years ago Log in to Reply
    11. Henry Renn

      The results are true for T1s subscribing to td1exchange. to. Don’t think that any generalizations should be drawn from the results.

      1
      5 years ago Log in to Reply
    12. Jana Wardian

      I have chosen not to eat as many carbs to reduce my insulin need.

      5 years ago Log in to Reply
    13. William Bennett

      Never rationed myself, but I have supplied insulin out of my backup stash to a T1 friend who had maxed out their pharmaceutical allotment and couldn’t afford paying the OTC price of ~$300.

      5 years ago Log in to Reply
    14. betsy valian

      I rationed insulin when in Central America, when the heat ruined most of my supply during a power outage….some countries aren’t as lucky as the USA w/ insulins, supplies and handling conditions…

      5 years ago Log in to Reply
    15. Keira Thurheimer

      I am very lucky to have good insurance that has a $30 copay for a 3 month supply of insulin. My doctor also writes my prescription for an extra vial in case of greater needs or accidents. (I once had the bottom of a vial blow out when I injected air into it.) I have been able to build up a reserve, so I dont have to make the decision to ration.

      5 years ago Log in to Reply
    16. Ahh Life

      In my case, yes, recently. But on a very, very short-term basis. If I am away from home doing errands with only a few units remaining, I will sometimes correct less or bolus less in order to keep SOME basal insulin going until I can get home and recharge the pump. ¯\_( ͡❛ ͜ʖ ͡❛)_/¯

      5 years ago Log in to Reply
    17. Amanda Barras

      No, I have never rationed. However I have had to buy Regular and NPH over the counter without a Rx to get me by when I ran out of prescribed insulin. Had that not been an option, then yes, I would have had to ration or go to hospital or doctors to seek emergency help.

      5 years ago Log in to Reply
    18. Mig Vascos

      Out of the commentaries, it seems like people have rationed insulin at times for reasons other than availability or cost. I’m not sure what this survey try to address: cost, availability or pump problems?
      I’ve been fortunate to always have enough insulin to cover my needs . Now a day being on a pump guarantees me Medicare coverage for insulin and my secondary insurance covers the rest of the deductible.
      The insurance plan I had before Obama cover my 3 month supply for just $10. How great!!! I know that change in insurance cover helped some people but it put me at a disadvantage. After struggling with different plans for a while I was able to get a plan that suits me.
      Also it’s important that the prescriber writes the prescription to cover the waste that some pumps have by deciding an infusion set change is needed when there’s still insulin in the cartridge.

      1
      5 years ago Log in to Reply
    19. Nicholas Argento

      No- but I have been fortunate. Many others have not.

      1
      5 years ago Log in to Reply
    20. Lynn Smith

      I agree with Tod Herman. I extract as much insulin out of my old pod using the syringe from the new pod and then in my insulin vial it goes. Never had a problem doing that, so I will continue. Just glad to hear someone else does that.

      1
      5 years ago Log in to Reply
    21. William Schaffer

      Mail order screw-ups made me ration Lantus. I thought that I had a standing order for refills, but found out I needed a new Rx.

      5 years ago Log in to Reply
    22. Bekki Weston

      My current Insurance coverage is generous and I don’t need to ration. However, a personal “ooops” recently caused me to ration my Tresiba. We left on a Thursday morning for a long weekend. That evening, I saw how small an amount was left in the pen. Instead of my usual 8 units, I lowered it to 6, and had 6 available to me each of the next three nights, until we left for home on Monday morning. Lesson learned: don’t just grab the pen….LOOK at it!

      1
      5 years ago Log in to Reply
    23. PamK

      I have never had to ration my insulin. I feel very sorry for those that do this as they put their health at risk. Most endocrine offices have samples available. So, for anyone reading this who is rationing their med(s), talk to your doctor to see if they can help you get what you need. Ask about samples – one or two pens can help get you through!

      1
      5 years ago Log in to Reply
    24. lis be

      I ration insulin at the end of most years (because I hit the insurance “donut hole” and want to wait to pay the extra money towards my deductible in the new year. It’s not a huge problem, I just cut back on my carbs to extend the insulin I have left.

      5 years ago Log in to Reply

    Have you ever rationed insulin (taken less than you needed in an effort to prolong your supply)? If so, how recently have you rationed insulin? Cancel reply

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