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    • 14 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.
    • 4 hours, 49 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.
    • 4 hours, 49 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.
    • 6 hours, 39 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.
    • 6 hours, 44 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.
    • 7 hours, 20 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, 1 hour 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, 4 hours ago
      Marty likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      Covers it with co pay
    • 2 days, 5 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, 7 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, 7 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, 7 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, 7 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!
    • 2 days, 21 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, 16 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, 5 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, 6 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, 7 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, 7 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, 7 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.
    • 4 days, 18 hours ago
      Amanda Barras likes your comment at
      Which T1D influencers do you enjoy following?
      Currently it’s the Diabetech, Justin Easter.
    • 5 days, 3 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, 4 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, 4 hours ago
      Kathy Hanavan likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      Take Control of Your Diabetes
    • 5 days, 5 hours ago
      Marty likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      Take Control of Your Diabetes
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    Have you (or your loved one with T1D) been diagnosed with retinopathy?

    Home > LC Polls > Have you (or your loved one with T1D) been diagnosed with retinopathy?
    Previous

    If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)

    Next

    Which of these symptoms of hypoglycemia do you frequently experience during a low? Please select all that apply.

    Sarah Howard

    Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.

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    " At T1D Exchange, we’re proud to announce our Medical and Research Advisory Team — an accomplished group of leaders in endocrinology, research, and quality improvement. Together, they are redefining what’s possible in type 1 diabetes (T1D) care through rigorous data analysis, innovative research approaches, and real-world implementation. 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. T1DX-QI is a remarkable resource for centers that are using continuous process improvement to improve the quality of care for people living with diabetes.”  “Diabetes centers working with T1DX –QI have done amazing work using QI methodology to make care accessible and equitable for all people with diabetes,” she said. “It’s inspiring to be a part of a collaborative in which centers have been creative and thoughtful with initiatives to address individual and systemic challenges to care, improving clinical outcomes as well as the patient experience."  Looking ahead, Dr. Sherr highlighted the opportunity to build on the existing strong foundation. “I’m very excited to be working as a Medical Advisor for T1D Exchange,” she said. “It’s a privilege to help shape what comes next for a group that’s already doing such impactful work.”  “Sharing what’s happening in clinical practice, benchmarking across centers, and understanding outcomes is how we figure out what’s working, what’s not, and where we go next,” she said.      The future of T1D care   With this team’s vision and expertise, T1D Exchange is positioned to accelerate progress in T1D care — bridging research and real-world practice to drive meaningful, measurable impact.  Together, we look forward to advancing innovation and improving outcomes for everyone affected by type 1 diabetes.   "

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    33 Comments

    1. Jennifer Farley

      Not Yet

      1
      3 years ago Log in to Reply
    2. AnitaS

      I haven’t, but I had a Type-1 cousin who I believe had received that diagnosis. I know she had laser surgery for eye problems about 35-40 years ago.

      3 years ago Log in to Reply
    3. Ahh Life

      Diagnosed 1951. First laser treatment 1975. None in last 10 to 15 years. Still seeing, still driving. 💪

      6
      3 years ago Log in to Reply
    4. Lawrence S.

      Back in the 1980’s, my ophthalmologist said I had retinopathy and a tear in my retina. He did laser therapy. Since then, I’ve had good annual check ups.

      2
      3 years ago Log in to Reply
      1. cynthia jaworski

        Same timing and same results. We were lucky.

        2
        3 years ago Log in to Reply
      2. MT

        No tear here but lasers in the 80s, blessed with 20/20 now.

        2
        3 years ago Log in to Reply
    5. George Lovelace

      My Opthamologist referred me to a Retinologist 10+ years ago. Multiple Laser treatments and a Vitrectomy have my vision at 20/20 both eyes. Of course having Distance Vision doesn’t help with Reading

      1
      3 years ago Log in to Reply
    6. Gary Rind

      very mild case, no treatment necessary………………..yet

      3
      3 years ago Log in to Reply
    7. Francisco Varea

      I was just dx with very mild retinopathy. Does not affect my vision at this time.

      1
      3 years ago Log in to Reply
    8. Kristine Warmecke

      I answered yes, even though I have not been diagnosed with DM Retinopathy, I have congenital eye issues. My brother has been, has had laser treatment and is stable now & STILL has better vision than I do.

      1
      3 years ago Log in to Reply
    9. Dennis Dacey

      Yes, in 1966.
      Immediately volunteered for experiment with Ruby LASER and experienced very favorable results. Now with thousands of LASER burns done over a 50=+ year period, with at least 4 type LASERs, my vision is still pretty good – much better than the “you will be totally blind within 2 years” multiple doctors told me in ’66. My recently renewed driver’s license has an expiry date of July 4th 2028.

      4
      3 years ago Log in to Reply
    10. Shannon Barnaby

      Diagnosed with very mild about a year ago. Had frequent follow ups and it has been fine ever since.

      1
      3 years ago Log in to Reply
    11. Lena Selbrand

      Same here, very mild that does not affect my eyesight!

      1
      3 years ago Log in to Reply
    12. Richard Vaughn

      I was diagnosed with retinopathy about 15 years ago. That was before I used a pump. I started using a pump in 2007. I had better control, and my retinopathy disappeared. I do not have that problem now.

      3
      3 years ago Log in to Reply
    13. Janis Senungetuk

      Yes, in 1982, dx with retinopathy in both eyes, proliferative in left eye, slight in right eye. Next five years received 5 laser “treatments” in left eye. Have 20/200 vision in left eye. Right eye remains stable.

      2
      3 years ago Log in to Reply
    14. Ernie Richmann

      I know it is not a guarantee but my endocrinologist tells me I am never getting complications from diabetes. I exercise everyday. My routine includes walking, biking, and resistance training. I’m 74 and feel great. Sorry for those with complications.

      4
      3 years ago Log in to Reply
    15. Jan Masty

      63 years of t1 d and no retinopathy. I’m very, very lucky.

      5
      3 years ago Log in to Reply
      1. Karen Tay

        Yes, you are! : )

        3 years ago Log in to Reply
      2. Joan Fray

        That’s me too. Luck. Pure, dumb luck.

        3 years ago Log in to Reply
    16. theresa unter

      Yes at 35 years it was non proliferative and then rapidly proliferative and 4 years later still dealing with this life changing constant worry of up and down vision days. My a1c has been under 6 for the last 8 years and between 7 and 8 prior years!

      2
      3 years ago Log in to Reply
    17. Bob Durstenfeld

      Yes and thanks to extensive laser based pan-photo coagulation it has been stable for decades. The trade off was losing my peripheral vision which has led to a few annoying trips and falls. I understand it is treated with shots now.

      2
      3 years ago Log in to Reply
      1. Karen Brady

        It depends on the patient, sometimes injections are given but laser is still a very common treatment!

        3 years ago Log in to Reply
      2. Bill Williams

        Like you, I had laser treatments years ago (1990) and have minor peripheral vision loss. My condition is stable and I only need to see my eye guy once a year.

        3 years ago Log in to Reply
    18. Karen Tay

      I had proliferative retinopathy with many laser treatments in 1977. That was 17 years after being diagnosed T1D

      3 years ago Log in to Reply
    19. Carol Meares

      No but I have a wrinkled retina

      3 years ago Log in to Reply
    20. Georgina Sokol

      Had a great GP who sent me to a retinologist when finding out I was pregnant (I had no retinopathy at that time). The Retinologist mapped my eyes as they were. After my delivery, I went back and received extremely precise laser treatment for retinopathy that developed during my pregnancy.

      2
      3 years ago Log in to Reply
    21. Angela Naccari

      I had retinopathy in 2020 in my right eye after 58 years of TD1. It was a surprise – had background retinopathy for several years with no changes or concerns and was monitored every 6 months. Just suddenly had a bad bleed that affected vision. Was monitored for a month and it would go away but then happened again. Had to have injections but bleeds did not stop happening. Had vitrectomy surgery and laser at the same time and no problems since. I am monitored every 6 months. It was sad for me to have this happen after 58 years.

      4
      3 years ago Log in to Reply
    22. Amanda Barras

      Very mild one year, and no evidence of it the next. I have had a A1c of 6.5 or less for the last 11 years so I am not concerned.

      2
      3 years ago Log in to Reply
    23. Becky Hertz

      I was diagnosed with macular edema first and some nonaggression was found when they did the eye photos. 15 ish years in which my pathologist at the time said was about “on schedule”..

      3 years ago Log in to Reply
    24. sweetcharlie

      No retinopathy… But AMD both eyes last 2 years…No treatment available… Unable to wright… bareley able to read only large type… use the talking guy hideing in my computer to read for me… Almost 91 years OLD…. 70 years T1D…

      3
      3 years ago Log in to Reply
    25. Mick Martin

      More than 30 years ago.

      I’ve received laser treatment probably a hundred or more times since then to ‘keep on top of it’. (I’ve also had the lenses removed from both of my eyes, with plastic lenses inserted, due to severe cataracts that developed in both of my eyes.)

      3 years ago Log in to Reply
      1. Mick Martin

        I forgot to add that I’ve also developed Macula degeneration over recent years …. around about the last 10 years.

        3 years ago Log in to Reply
    26. Steve Rumble

      My spouse was diagnosed with retinopathy and treated with Lazer surgery in both eyes. I have been diagnosed with minor (level 1 if I remember correctly) retinopathy with no treatment required.

      3 years ago Log in to Reply

    Have you (or your loved one with T1D) been diagnosed with retinopathy? Cancel reply

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