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    • 1 hour, 27 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 13 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 15 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 18 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 19 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 20 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 20 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 1 day, 21 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 21 hours ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 13 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 13 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 15 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 15 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 17 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 19 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 19 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 20 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 20 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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    Have you ever experienced elevated ketones without high blood glucose levels?

    Home > LC Polls > Have you ever experienced elevated ketones without high blood glucose levels?
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    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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    36 Comments

    1. Mick Martin

      Many years ago I used to be a bit of a fitness ‘freak’, and one of the sports that I used to participate in was boxing. I used to ‘starve’ myself purposely to keep my weight down so that I could meet the requirements for the weight category that I used to box in. This resulted in ketone production as my body would deliberately break down fat reserves in order to ‘feed’ me.

      1
      5 years ago Log in to Reply
    2. Abraham Remson

      I have never had a problem with ketones. I was even given ketone sticks to test. Even when my sugar was high for a few days. This was an indication that I had some kind of virus or some other infection

      5 years ago Log in to Reply
    3. Bonnie kenney

      I was on Jardiance…while on a pump…I am type 1. I started spilling ketones after taking it a few years. My Dr took me off immediately.

      5 years ago Log in to Reply
    4. Henry McNett

      Yes, it is called nutritional ketosis resulting from a low carbohydrate diet.

      3
      5 years ago Log in to Reply
      1. Christina Trudo

        isnt this what killed karen carpenter?

        5 years ago Log in to Reply
      2. KarenM6

        Hi Christina –
        No. What killed Karen Carpenter was Anorexia – which is, basically, not eating at all… no or too low of a caloric intake.
        A low carb diet does not preclude caloric intake from non-starchy vegetables or meat or fat.
        A low carb diet means the person is avoiding breads, fruits, starches and pastas also.
        I hope this information helps!

        5 years ago Log in to Reply
    5. Sharon Lillibridge

      i would not know….not something I am concerned with.

      5 years ago Log in to Reply
    6. Ernie Richmann

      I just don’t know.

      1
      5 years ago Log in to Reply
    7. Christina Trudo

      Not without any kind of high, but the one time I had ketones that landed me in the hospital my sugar was not super high, high 200s.

      5 years ago Log in to Reply
    8. Sahran Holiday

      My endocrinologist told me not to bother testing for ketones even from an occasional high blood glucose. Probably on my lab tests. No one ever said anything.

      5 years ago Log in to Reply
    9. Dave Barden

      Don think. Been a long while since I’ve checked for ketones. At what bs reading do people check for ketones.

      5 years ago Log in to Reply
      1. AnitaS

        I know many people have been told to test if sugar levels go above 250, but not sure if that is what the people who are answering in this survey do.

        5 years ago Log in to Reply
    10. Bob Durstenfeld

      I’ve never had high ketones, regardless of BG level.

      5 years ago Log in to Reply
    11. Tina Roberts

      I have no idea. I don’t test for them.

      2
      5 years ago Log in to Reply
    12. Chrisanda

      I’ve never tested for ketones. So far my doctor has not required it.

      2
      5 years ago Log in to Reply
    13. Natalie Daley

      My endo never asked me to test or provided me with an Rx for test strips.

      1
      5 years ago Log in to Reply
    14. Carol Meares

      I put no, but I don’t ever measure ketones so I don’t really know.

      2
      5 years ago Log in to Reply
    15. Francisco Varea

      I answered other. I have only tested for them a couple of times and found normal levels. The strips are usually expired whenever I try to test. It is sort of useless in my opinion, unless your glucose levels are really out of of control.

      1
      5 years ago Log in to Reply
    16. Kate Hayes

      This question is automatically and inherently biased, though, because we Type 1s are taught to not even check ketones unless glucose levels are above 250 mg/dL. So – One of the answer choices should be “I don’t know”.

      3
      5 years ago Log in to Reply
      1. Ceara Glasgow

        When I was first diagnosed I was told to check for keytones every so often. And when I tried a somewhat ketogenic diet I had to test my levels everyday to make sure I wasn’t making way to many keytones. I think the healthcare for type 1 diabetes is so… in progress that different professionals have different understandings of treatment.

        5 years ago Log in to Reply
    17. Cheryl Seibert

      My husband was in post-op after surgery and nursing care was thin. I wasn’t on the pump at the time and had BGs in the 150-170s for several hours. Waiting on training for wound care delayed my meal so I was very dehydrated after waiting all day at the hospital. That evening, I went into ketoacidosis even though my BGs were still in the 170s.

      1
      5 years ago Log in to Reply
    18. Ken Raiche

      Happens almost everyday due to the current diet that I’m on.

      1
      5 years ago Log in to Reply
      1. AnitaS

        Ooh, that doesn’t sound good. Maybe the diet needs to change in some way.

        5 years ago Log in to Reply
      2. Ceara Glasgow

        Whenever I go low carb I make keytones too, people always think keytones are bad but they aren’t they are also a sign that your body is burnin fat for fuel instead of carbs or sugar.

        1
        5 years ago Log in to Reply
    19. Eve Rabbiner

      Why would I even check for ketones unless my BG was high? Maybe it I was feeling dreadful, but so far that hasn’t happened.

      2
      5 years ago Log in to Reply
      1. Ceara Glasgow

        Some people produce keytones more easily than others. I think mostly due to diet, hydration,and activity. I did a somewhat ketogenic diet for awhile and produced a lot of keytones most of the time, my blood sugars were always on the lower side tho.

        5 years ago Log in to Reply
    20. M C

      Only once – it was after surgery – My body didn’t ‘like’ the anesthesia, so had to be kept overnight after a ‘day surgery’ as my heart rhythm became erratic…. I couldn’t eat due to extreme nausea, and thus ketones made an appearance (as explained by the doctor).

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

      Back in the test tape days I tested for ketones when my urine tested very high glucose. Haven’t tested for ketones since I first started using a blood glucose meter in the early 80s.

      1
      5 years ago Log in to Reply
    22. Patricia Dalrymple

      I said other because I’ve never felt sick enough to check for ketones and my Endo never says anything about it.

      5 years ago Log in to Reply
    23. Jneticdiabetic

      I put No, but I’ve also never checked unless my BG is high and I’m feeling unwell.

      1
      5 years ago Log in to Reply
      1. Bea Anderson

        N/a…in 15 yrs it has never come up. Never checked. Is treatment for high ketones different than treating high blood glucose? When high I try to quickly correct to low normal. Assumed that was all that was needed. That said I do use Keto diet at times.

        5 years ago Log in to Reply
    24. John Dowd

      I don’t really know what ketones are, so I put “other”

      5 years ago Log in to Reply
    25. AnitaS

      While in the hospital recovering from surgery, I had keto acidosis. My sugars were high the whole time I was in the hospital and I kept telling them I needed more but they just didn’t seem to listen. My sugars weren’t astronomically high, but even staying between 200 and 250 the whole week I was there was enough to put me over the edge into keto acidosis.

      5 years ago Log in to Reply
    26. Ceara Glasgow

      Yea I actually went into dka without having a high blood sugar. It was frustrating in the hospital a lot of the doctors and nurses didn’t understand that dka happens when you don’t have any insulin in your body regardless of blood glucose levels. I was luck my endocrinologist was on a shift at the hospital and was able to come in and lay down some education not just for me but also for the other medical staff.

      5 years ago Log in to Reply
    27. Kevin McCue

      The wording doesn’t allow answers like having never experienced ketones or measuring ketones even though having T1d for 3 decades

      5 years ago Log in to Reply
    28. Wanacure

      I was breathing out and urinating ketones when I first became T1D. Within a week my observant mom had me seeing an endocrinologist. That’s the only time. And I have checked for ketones over the years. I felt so much better after starting insulin. But I’m on a low carb diet now and may go ketogenic. Keto acidosis from high bg = very bad. But keto acidosis from ketogenic diet may not be so harmful & there may be some real advantages. I’m open to trying it.

      5 years ago Log in to Reply

    Have you ever experienced elevated ketones without high blood glucose levels? Cancel reply

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