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    • 9 hours, 25 minutes ago
      KarenM6 likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      "It's a forever learning curve" - so very true
    • 9 hours, 32 minutes ago
      KarenM6 likes your comment at
      For pump users: In the past 3 months, have you had issues with insulin delivery due to a bent cannula or occlusion?
      I hesitate to bring this up but I am quite sure this happens more than people realize. I use a tubed pump and small amounts of total daily insulin and have checked the tubing for YEARS for bubbles. YES, they are difficult to "notice" unless you have a good light behind the clear tubing because the insulin is also colorless. I detach and check the tubing in the morning and before bedtime if not before the evening meal...I'm talking about significant bubbles----8-10-or12 inches in length can appear and you would NOT notice them unless you were looking. I wonder how many people wonder why their blood sugar is occasionally high and it's being caused by a significant bubble...NO, not the champagne sized version that's often mentioned to "ignore." The pump company I deal with tried to get me to switch to injections instead but I am an EXPERT with the bubble situation. Also, comments over the years that I am probably not filling the reservoir correctly, etc....just plain silly. I am NOT new at this...LOL!!!
    • 9 hours, 58 minutes ago
      KarenM6 likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 34 minutes ago
      Janis Senungetuk likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 34 minutes ago
      Richard Wiener likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 54 minutes ago
      Ahh Life likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I began playing Pickleball last year in March. When the temperatures started to rise the extra effort my body was experiencing because of the heat got my body hormones out of balance and I began experiencing nausea, higher heart rates and feeling very uncomfortable. I soon realized that I cannot play when is too hot or I’ll end up with ketones. Any new activity when on. Insulin requires adjustments. It’s a forever learning curve. Adding to the heat, last year I was having some absorption problems by the overuse of my abdomen. I have now move the infusion sites to my upper front side and it’s working much better.
    • 14 hours, 55 minutes ago
      Kristine Warmecke likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 14 hours, 55 minutes ago
      Ahh Life likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I answered no, but I do experience nausea and/or vomiting, usually on a daily basis, but this is because I have gastroparesis. I have rarely been able to eat breakfast over the last 20+ years as I end up vomiting it all back up ... try explaining that to ward staff in hospital(s). ;-)
    • 15 hours, 14 minutes ago
      Becky Hertz likes your comment at
      In the past 12 months, have you experienced nausea and/or vomiting as a symptom of high blood glucose levels?
      I said yes to nausea, occurred with a bad pump site insertion and rising BG over the next 4 hours. I picked it up early w CGM notification and realizing that it was very unusual for me to have rising BG at that time of the day (morning) when on Control IQ pump. The severity was delayed because I had given a breakfast meal bolus via the prior site before the change, so BG was rising after 3 hours, and I knew something was not right. I think this is an important clue for pumpers- when I see people get in trouble w bad sites or insertion failures, the thought process usually is- I just put a new site in, it must be ok- or maybe it does not occur to people that the pump site could have failed--when it should be- did the insertion fail? ----If in doubt, pull it out!----- I pulled the site and could see the cannula was bent, so I know what happened and injected w a syringe, put a new site in, and was better in a 3-4 hours.
    • 1 day, 7 hours ago
      Wanacure 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!
      After 62 years I have skin issues everywhere. I am an avid at rotating every time I change my infusion set. When I was on multiple daily injections, up to 9 per day, I had massive skin hardening. Since on the pump it’s not nearly as bad that’s been 33 years. I take very little insulin my daily basal comes out to 9 units over 24 hours I eat two meals that I count carbs for and try to keep at a minimum of 30-40 per day. Everything is going well. Rotation is key
    • 1 day, 7 hours ago
      Wanacure 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!
      I use a pump and have had issues with insulin absorbtion. It seems I have a lot of them on the side I primarily use for infusion sets. I recently switched to the other side of my abdomen and dropped more than one point on my a1c.
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      When I first started with my current Endo we would discuss the released and upcoming products and I would tell her about the 'off-market' applications and devices, we both learned from each other. But she was so good with helping me transition to the Dexcom and then the Tandem after Animas was pulled from the Market. She followed my Dex and even finer tuned my Basals and early this year I got an "unbeleivable" 5.4 A1c and we are both extremely happy!
    • 1 day, 8 hours ago
      Wanacure likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      Yes. But then I self-selected when choosing an endocrinology clinic that pursues cutting-edge advances 40 years ago. Cutting-edge is a phrase that is also often called bleeding-edge because it is often experimental, hit or miss on results, and very expensive. I am convinced the “bleeding” refers to $$$.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      not anymore, and I am happy about it! Most of the time they were recommending things that had been recently pitched to them by a pharmaceutical salesperson or a durable medical supplier. The doctors would give patients the "free samples" and it was often not the best fit, then after the "free" supply ran out, the prices were exorbitant. Maybe it still happens, but I haven't seen it for a while.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      The need for better CGM accuracy is a big consideration for me. Also my control is pretty good right now (a1c in the low 6 range). Although I am tempted by the sleep and exercise modes which would be very helpful since I’m getting back in to exercise. So…I keep sitting on the fence…
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      I don’t want to change from the Omnipod Dash to Omnipod 5 because the minimum target blood glucose is level is higher than where I like to keep it. My A1C is currently 5.0.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      For the last 5 years, the highest HbA1C I've had was 5.3. For the last 3 years the high, low, & average have been 5.2, 4.7, & 4.9. I'm not willing to go to an AID that sets a target of 6 to 7.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      I do MDI. For the last 7 years my A1C has averaged around 4.8. I have no reason to believe that a closed loop automated system could do that well.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      There are many reasons, as well as "something else." My arthritic fingers do not serve me well with a cell phone. I have trouble putting the needle covers back on to my insulin pen needles. If I had to take care of all the fine muscle issues associated with setting a pump up, I would probably require assistance. I am also not drawn to the issues I hear about tissue damage at the infusion sites, or knowing whether everything is seated properly and the insulin is actually flowing. Finally, I just have some kind of negative karma with electronics. I have worked as a lab biochemist. Somehow, I find the weaknesses of every machine in the lab. (the ideal industrial beta-tester) Having said that, what I hear about the numbers achieved with the tandem CIQ gives me pause to consider.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      Like others, the "closed loop" runs me too high - even the target bg is too high for me. I use the TandemX2 with BIQ integrated wqith my Dexcom G6. I also appreciate - and use - the temp basal function often. I would lose that with CIQ. L:ike Nilla Eckstrom (I think?) I like to be between 80-90, with maybe up to 120 after I eat.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      The constant refilling and site changes...doesn't seem worth it.
    • 1 day, 9 hours ago
      Wanacure likes your comment at
      If you have never used an insulin pump with automated insulin delivery (also known as a hybrid closed-loop pump), what are some of the reasons you’re reluctant, or obstacles you’ve encountered? Please select all that apply.
      Luddites just may be the most comfortable people on earth. 🙃 
    • 1 day, 10 hours ago
      Antsy likes your comment at
      For pump users: In the past 3 months, have you had issues with insulin delivery due to a bent cannula or occlusion?
      Holy cow! 8 to 10” bubbles? There is definitely something wrong if that is happening to you. I occasionally get 1/4” inch 10” is excessive. Have you gone in and shown your pump instructor how you’re doing it so that they can help you figure out the problem?
    • 1 day, 10 hours ago
      Wanacure likes your comment at
      Aside from the first year after your diagnosis, have you seen a registered dietitian for help managing nutrition and T1D?
      When I was put on insulin, the first dietitian I payed to see said I could eat whatever I wanted as long as I followed the set number of macros (carbs, protein, fats). The stupid diet had my blood sugars all over the map. She didn't care/listen when I told her milk, bread/pasta made me feel really sick. She said because I was on insulin I need to eat a high carb, low protein and low fat diet. What bad advice! Thankfully, I came to my senses and starting reading the experiences of other T1D's who were following the The Bernstein diet.
    • 1 day, 10 hours ago
      Wanacure likes your comment at
      Aside from the first year after your diagnosis, have you seen a registered dietitian for help managing nutrition and T1D?
      Saw one, recently out of school, when I was first diagnosed ten years ago. She insisted I needed 150 grams of carbs per day minimum and handed me a sheet with meal plans. She explained that I needed those carbs to keep my brain functioning properly. GEEZ. I can only hope she's learned a thing or two since then.
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    In the past 5 years, have you participated in a T1D research study that tested out a potential new device, drug, process, or other intervention?

    Home > LC Polls > In the past 5 years, have you participated in a T1D research study that tested out a potential new device, drug, process, or other intervention?
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    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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    38 Comments

    1. sweet charlie

      T1D for 69 years… but rejected because 90 years OLD !!

      11
      1 year ago Log in to Reply
      1. Patricia Dalrymple

        Ahh Sweet Charlie, good for you. I’m sure you have been through a lot but congratulations for hanging in there and everything that takes!!

        2
        1 year ago Log in to Reply
      2. Lorri McLuckie

        You’re amazing!

        2
        1 year ago Log in to Reply
      3. Meerkat

        Keep up the good work! You are awesome!

        2
        1 year ago Log in to Reply
      4. Mick Martin

        Well done on reaching such a good age whilst having T1D, sweet charlie.

        I would add, however, that it’s not just people of advanced years that get turned down/rejected. I very well recall asking my consultant about a pancreas transplant and was turned down as being “too old” at the age of 23. lol. Apparently, Israel had had success with pancreas transplants in the early 1980s, and it ‘sparked’ something in me to want to ‘give it a go’. (I was selected for Islet Cell Transplantation, too, but on attending the hospital that it was being performed at was ‘deselected’ as I’d already developed diabetes-related complications and, as it was still an experimental procedure, they needed to show how effective it could prove to be.)

        1 year ago Log in to Reply
      5. Sherrie Johnson

        Sweet Charlie we are seeing technology catch up. I am Type 1 diabetic for 62 years age 75. Keep going strong 👍

        1
        1 year ago Log in to Reply
    2. Molly Jones

      Not in the last five years.
      I keep my eyes on clinical trials and hope to participate in a phase 2 next year for a new drug that sounds very hopeful.

      1
      1 year ago Log in to Reply
    3. Maggie Morgan

      Participated in a study recently that was trying out different adhesives for the Dexcom G7. Was very fun and interesting to be a part of it! I am very excited for the new and improved version of the device.

      4
      1 year ago Log in to Reply
      1. Jana Wardian

        I was in that study as well! Great problem to solve. Adhesives have to be sticky enough without triggering an allergic reaction.

        1
        1 year ago Log in to Reply
    4. Brian Vodehnal

      I tried to do an Islet injection trial but my blood is O+…they only wanted type A and B…didn’t explain why only those blood types qualify.

      1
      1 year ago Log in to Reply
    5. Tom Caesar

      I thought about a Alzheimer’s drug study but decided against participating. Figured I tortured my body enough over these past 50 years as a type 1!

      1 year ago Log in to Reply
    6. GLORIA MILLER

      I am in the Joslin Diabetes 50 Year Medalist Study and have been since the early 2000s. They have learned a lot why some of us are able to survive so long with or without complications. We have a few who have passed 75 years with diabetes. I go to Boston periodically for them to take blood and all for their research. Once I die they will take parts for more research before returning the body for cremation or burial.

      6
      1 year ago Log in to Reply
      1. Janis Senungetuk

        I’m also a participant in the Medalist study and have consented to postmortem donation. Forty years ago when I first attempted to donate my body for medical study/education at the local level, University of Wisconsin School of Medicine and Pubic Health, there was no interest. Joslin appears to be the only one with a T1 longevity study.

        1
        1 year ago Log in to Reply
    7. Andrew Aronoff

      I’ve been diabetic for over 50 years and I’ve never been involved in a research study. One reason may be that I’m an American living in France, but that doesn’t explain much, since studies occur in France, too. I wish I could have contributed and remain available if I’m compatible with a study’s criteria.

      1 year ago Log in to Reply
    8. Lawrence S.

      I attempted to sign up for a few. But, once I turned 65 years old, it seems that I am excluded from many studies.

      2
      1 year ago Log in to Reply
    9. Mark Schweim

      I have applied for many trials but have never been accepted into one.

      1
      1 year ago Log in to Reply
    10. Carol Meares

      Sweet Charlie, perhaps they could do a study on how a T1D 90 year old can inspire T1D’s of all ages to do our best and live well. You are the carrot;)

      4
      1 year ago Log in to Reply
    11. betsy valian

      I think @ 68 I hit the ceiling for age in studies, they all seem to be for younger T1D’s? 🙂

      5
      1 year ago Log in to Reply
      1. kristina blake

        I agree. AS a 68 year old woman myself, I get screened out of most of the surveys as well.

        2
        1 year ago Log in to Reply
    12. Mick Martin

      That really depends on what YOU mean by “T1D research study”!

      I was the first person in the area that I live to ‘Trial’ the Medtronic/MiniMed 640G insulin pump, and dependent on how well it appeared to work, it determined whether more people would be allowed to use it.

      1 year ago Log in to Reply
    13. Judith Marged

      I have completed several clinical trials for T1D meds, but they were all more than 5-years ago.

      1 year ago Log in to Reply
    14. Steve Rumble

      I am currently participating in a study of an app that tracks carbs and insulin (I must enter that data) and makes recommendations based on a plan I have completed regarding amount of bolus to take at meals or when BS is too high. DreaMed Diary is the name I believe.

      1 year ago Log in to Reply
    15. Sherrie Johnson

      I am a Joslin 50yr medalist I go every three years for the study. I’ve added a new test every year I’m not sure how all this information is processed and if it does lead to new medications or treatments

      1
      1 year ago Log in to Reply
      1. Janis Senungetuk

        Me too.

        1 year ago Log in to Reply
    16. Natalie Daley

      I’m 75 and have been diabetic for 35 years — 30 on insulin after my endocrinologist realized this wasn’t Type 2. I’m two old apparently for any studies, but aren’t they curious how I got to be too old? My T1D brother, my role model, died at 67, and he was 4.5 years older than I am.

      1
      1 year ago Log in to Reply
    17. rick phillips

      I usually get to test new meters.

      1 year ago Log in to Reply
    18. George Lovelace

      T1 58 yrs, Pumping 24 Yrs. Been on Dexcom since 2009, now on G6 with Tandem CIQ and getting Best Numbers since 1963

      1 year ago Log in to Reply
    19. Anneyun

      Sweet Charlie you are inspiration to us all! Good to know long life can be had by TD1s.

      1 year ago Log in to Reply
    20. AnitaS

      I look for studies to participate in but I haven’t matched any yet, at least in the studies that are in my location. For instance, I get matched based on age , gender and such but I don’t have the medical problems that the study is intended for. Example: macular degeneration or kidney problems.

      1 year ago Log in to Reply
    21. Sondra Mangan

      I have attempted but turn 73 this week and am usually outside the range of ages for the trial.

      1 year ago Log in to Reply
    22. Tina Roberts

      I’ve tried, but for some reason I never qualified.

      1 year ago Log in to Reply
    23. Carrolyn Barloco

      I signed up for the Dexcom adhesive study but have not received any follow up.

      1 year ago Log in to Reply
    24. Phyllis Lewis

      I would be willing but they all seem to think I’m too old

      1 year ago Log in to Reply
    25. Christina Trudo

      I seem to have aged out of the upper limits for many studies. (Often that’s 64 or 65.)

      1 year ago Log in to Reply
    26. Jneticdiabetic

      Not in the past 5 years, but I previously participated in an early closed loop study and have participated in multiple blood draw studies.

      1 year ago Log in to Reply
    27. M C

      Had a bad experience at one time when I had volunteered to provide myself as a subject in a research study, and found myself being treated poorly (like, I, by being there at their request, was a burden on the staff). They treated the patients poorly, did not communicate, and made the experience miserable. After I removed myself, and explained the experience to the research head, I was asked if they could use my experience as a learning tool for the staff going forward on how to treat the volunteer patients properly and professionally – To which I agreed.) – Since then, I have not raised my hand again to assist in any research projects. Not willing to subject myself to poor treatment again, regardless of promises to the contrary.

      1 year ago Log in to Reply
    28. Wanacure

      When I was a college student, at least a couple of times a year I volunteered for research of all kinds as advertised in the classified section of the student newspaper. Sometimes there were notices on bulletin boards. Sometimes I was renumerated. One of the studies was a national study of people with diabetes complete with a control group; it had significant findings. Now I’m In the ACT study regarding dementia involving the University of Washington in Seattle and Kaiser Permanente. Every year I’m tested for memory, plus some physical measurements such as ability to rise from a sitting position to standing without using my hands. And for a week or two I keep detailed records of how much I exercise, what I eat, social activity, etc. The payoff? No funeral costs since I’m donating my brain for physical effects of dementia (often called Alzheimer’s) and the rest of my body organs to medical science. Note: I have not been diagnosed with dementia…yet. If I’m one of the group that does not develop “Alzheimer’s” that will still hopefully provide valuable info. Another payoff: this yearly check on my lifestyle motivates me to exercise, follow a healthy diet, and try to avoid social isolation.

      1 year ago Log in to Reply
    29. PamK

      I would like to, but I can never find a study in my area. Guess I just live in the wrong place!

      1 year ago Log in to Reply

    In the past 5 years, have you participated in a T1D research study that tested out a potential new device, drug, process, or other intervention? Cancel reply

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