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    • 4 hours, 9 minutes ago
      Amy Schneider likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 5 hours, 36 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I want a thumbs down icon!
    • 5 hours, 36 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I seldom have any questions other than RX refill request which I submit through the patient portal. If I do have treatment questions, I typically do my own research, and if not satisfied with what I find out, I submit a question in the portal.
    • 5 hours, 36 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      When I come up with a question between visits, I usually just do some research.
    • 7 hours, 49 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 7 hours, 49 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Sorry. Of course I store unopened in frig. Opened in my room as I use it up in 30 days
    • 7 hours, 50 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      No, I keep it in the oven! ;) Same answer as the last time they asked this ridiculous question!
    • 8 hours, 32 minutes ago
      Becky Hertz likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 9 hours, 55 minutes ago
      Bruce Schnitzler likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 11 hours, 53 minutes ago
      alex likes your comment at
      Here’s What You Need to Know About the Dexcom G7
      This article explains the Dexcom G7 features in a clear and easy way, especially for people new to continuous glucose monitoring. Very informative and helpful. Sportzfy TV Download
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Have you ever been told you couldn’t physically do something because you live with diabetes?
      Long time ago - told there were certain occupations I would not be allowed to do because if T1D. Pilot, air traffic controller, military, etc.
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I have been told many times "YOU CAN'T EAT THAT!" ONLY to frustrate them and eat it anyway and then bolus accordingly.
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Lol hell when haven't they. Lol
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 5 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was only 2 when Diagnosed 70 years ago. My small town doctor admitted he didn't know much about T1D, and fortune for my parents and I he called what is now Joslin Clinic, and they told him how much insulin to give me. He taught my parents, who then traveled over 350 miles to Boston, to learn about how to manage T1D. My doctor learned more about T1D, and was able to help 2 other young men, that were later DX with T1D in our small town. I went to Joslin until I turned 18 and returned to become a Joslin Medalist and participated in the research study, 20 years ago. Still go there for some care.
    • 1 day, 5 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was 7 when things changed in my home. My older brother was hospitalized for 2 weeks. When he came home, we no longer ate the way we had before. This was 1956. Dessert alternated between sugarless pudding or sugarless Jello. I learned that bread and potatoes had carbohydrates and that turned to sugar. There was a jar in the bathroom. It seemed my brother was testing his urine every time he went in there. There was a burner and pot on the stove designated for boiling syringes. I watched my brother give himself shots and I remember how hard it was to find someone to manage his care if my parents had to travel. Diabetic Forecast magazine came in the mail each month and there were meetings of the local diabetes association that my mother attended religiously. My brother got a kidney and pancreas transplant at age 60 and before he died lived for 5 years as a non-diabetic. A few years later I was diagnosed. Sorry he was not able to make use of today’s technology. I often wonder what he and my late parents would think about me, at age 66, being the only one in the family with type 1.
    • 1 day, 5 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 9 hours ago
      kilupx likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      My brother was type 1 since an early age. I was only diagnosed in my late 40s
    • 1 day, 11 hours ago
      Phyllis Biederman likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 12 hours ago
      Bill Williams likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was diagnosed in 1976 at the age of 18 while in college. One weekend, I was drinking a lot of water and peeing frequently. I remembered having read a Reader's Digest article on diabetes, and I told my friends I thought I might have it. Two days later, the diagnosis was confirmed.
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      It was 35 years ago for me. I had no experience with T1d. I was starting to show symptoms and my sister-in-law quickly researched T1d and told me what she found. I went to my GP a week or two later. My BG was over 600. He sent me to the hospital right away. Blood test confirmed it.
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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
      4 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

      4 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.

      4 years ago Log in to Reply
    4. Henry McNett

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

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

        isnt this what killed karen carpenter?

        4 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!

        4 years ago Log in to Reply
    5. Sharon Lillibridge

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

      4 years ago Log in to Reply
    6. Ernie Richmann

      I just don’t know.

      1
      4 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.

      4 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.

      4 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.

      4 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.

        4 years ago Log in to Reply
    10. Bob Durstenfeld

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

      4 years ago Log in to Reply
    11. Tina Roberts

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

      2
      4 years ago Log in to Reply
    12. Chrisanda

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

      2
      4 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
      4 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
      4 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
      4 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
      4 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.

        4 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
      4 years ago Log in to Reply
    18. Ken Raiche

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

      1
      4 years ago Log in to Reply
      1. AnitaS

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

        4 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
        4 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
      4 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.

        4 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
      4 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
      4 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.

      4 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
      4 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.

        4 years ago Log in to Reply
    24. John Dowd

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

      4 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.

      4 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.

      4 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

      4 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.

      4 years ago Log in to Reply

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

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