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    • 11 hours, 36 minutes ago
      lis be likes your comment at
      How willing would you be to take immunosuppressants if you were considering an islet cell transplant?
      Nope, T1D is a manageable thing with today's technology. I'll keep the devil I know.
    • 12 hours, 7 minutes ago
      dako likes your comment at
      How easy is it for you to find research opportunities that feel relevant to you?
      It seems to get harder every year. They seem to be looking for younger and newly diagnosed people.
    • 12 hours, 7 minutes ago
      dako likes your comment at
      How easy is it for you to find research opportunities that feel relevant to you?
      Agreed, and there are plenty of issues aging with T1D.
    • 17 hours, 29 minutes ago
      eherban1 likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      All depends on if anti rejection and immunosuppressive medications are needed. If so I would not be interested.
    • 17 hours, 29 minutes ago
      eherban1 likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely provided immunosuppressants aren't required. Also younger people should receive the treatment first.
    • 17 hours, 29 minutes ago
      eherban1 likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      as long as it doesn't require immunosuppression, I'm interested
    • 1 day, 1 hour ago
      Karen Newe likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these. I'm not interested and have not even heard of some of them. The fewer gadgets the better.
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      How about “None of the above”?
    • 1 day, 3 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these
    • 1 day, 9 hours ago
      John Barbuto likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      I agree with Molly. I’m moderately concerned because if I were extremely or very concerned, I just wouldn’t participate. I’m concerned for others who are brave enough to risk their own health for the sake of research and helping others.
    • 1 day, 9 hours ago
      John Barbuto likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 13 hours ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 1 day, 13 hours ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 13 hours ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 13 hours ago
      Natalie Daley likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 14 hours ago
      ChrisW likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      Well the first person in this trial has been insulin-free for over 1-1/2 years and has been feeling fine. All 12 participants in this trial so far are off of insulin. The trial is now going to include people with t-1 diabetes and some kidney damage as this immunosuppressant (tegoprubart) has shown no toxic effects to islet cells or to kidneys. I will keep watching as the trial progresses. This question only asked if we had heard about it. I didn't see the question as an advertisement.
    • 1 day, 14 hours ago
      ChrisW likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 14 hours ago
      Brian Vodehnal likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Concern is relative to outcome. Getting a five year reprieve on the daily management of T1D might be worth it.
    • 1 day, 16 hours ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 16 hours ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Moderately as this is for others. I don't imagine being offered this myself.
    • 1 day, 16 hours ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 16 hours ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 1 day, 16 hours ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 16 hours ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      I just love your comments. 😃
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    Experiencing weight fluctuations is a common experience in adulthood. If you’re an adult with T1D and you have experienced a weight change (gain or loss of 10lbs/4.5kg and you remained at that new weight for at least 6 months or more as an adult), how did your insulin needs change?

    Home > LC Polls > Experiencing weight fluctuations is a common experience in adulthood. If you're an adult with T1D and you have experienced a weight change (gain or loss of 10lbs/4.5kg and you remained at that new weight for at least 6 months or more as an adult), how did your insulin needs change?
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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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    27 Comments

    1. Ahh Life

      Just when I thought I had a bone-deep understanding of how the human body works, I gained 10% in weight over the 2 year pandemic without any increase or decrease in insulin. How does this happen? ◟₍⁽⁰꒫⁰⁾₎◞

      1
      4 years ago Log in to Reply
    2. GLORIA MILLER

      I don’t gain or lose that much weight but have stayed close to the same weight since I was in my twenties. It seems the older I get, the less insulin I need though after 65 years T1.

      4 years ago Log in to Reply
    3. Ernie Richmann

      My weight has remained stable. When I was first went on insulin, I did rapidly gain weight. I currently weigh about what I weighed at age 20. I do exercise almost every day.

      4 years ago Log in to Reply
    4. LuckyPineapple

      I gained about 30lbs when I brought my A1C down 6 points after a really bad point in my life/diabetes. But my insulin ratio and lantus amount stayed the same.

      1
      4 years ago Log in to Reply
    5. Kristen Clifford

      This should have been a question with multiple answer options because just about all of the above applies to me!

      4 years ago Log in to Reply
    6. Greg Felton

      I have not experienced weight gain or loss with T1D, except for a 45-day study using Victoza that caused me to drop 15 lbs. I’m not advocating the use of this T2 drug, though. It was an awful experience. Otherwise, I have maintained a steady, healthy weight through adulthood. I was dx’d at age 5.

      4 years ago Log in to Reply
    7. Mick Martin

      I selected “My insulin needs stayed the same after I gained weight”, but that was after my initial diagnosis some 40+ years ago.

      Prior to my diagnosis I lost 27 pounds in the space of 4.5 days … that’s according to my doctor’s scales.

      Obviously, my doctor suspected that something was wrong so he asked me to provide a urine sample, which was tested with a urinalysis dipstick. It turned bright orange, which indicated that there was a lot of glucose present. (For those not aware, home blood glucose testing … and doctor’s surgeries having access to blood glucose testing facilities … was still several years away.)

      He wrote out a letter to my local hospital and asked me to take it there right away. I was kept in hospital for about one week and began insulin injections that same afternoon.

      Since that time, there have been minor fluctuations as to my insulin requirements, but once my weight had returned to a somewhat ‘normal’ level I have neither lost, nor gained, much weight.

      4 years ago Log in to Reply
    8. Mary Ann Sayers

      My insulin needs have basically stayed nearly the same around 30 units a day. With control-IQ my basal varies greatly sometimes. My totals have gone once as high as 38 units. But it’s my weight that drives me crazy! And I’ve shrunk! I’m now 5’1″ and I don’t like the “middle-aged spread” at age 75! I’ve tried to get rid of it,

      4 years ago Log in to Reply
    9. Liz Avery

      I recently lost about 15 pounds through dieting. My husband is on the diet, but because I am the cook and grocery getter I have lost as well. It is good that my insulin needs are down ( insulin is a fat hormone) but I attribute that to eating less carbs.

      4 years ago Log in to Reply
    10. Richard Vaughn

      I gained weight in the late 1990’s but I don’t remember how it affected my BS and the insulin dosages. I was diagnosed with insulin resistance (IR) with the weight gain. I have four relatives with T2. I guess I inherited a T2 gene?? I used Metformin and lost all the weight I had gained, but there is still some IR. There are many T11Ds with IR. They are T1 but not also T2. They are T1 with a T2 characteristic.

      4 years ago Log in to Reply
    11. Natalie Daley

      I cut my insulin by almost a third when I found a hearty breakfast followed by an exercise class, and a balanced dinner, made skipping lunch possible. Sometimes I’ll have a slice of cheese or some nuts, but I’m not usually hungry. Weigh 25 lbs less is better for my metal hips, and after my insulin copay went to over $700 every two months, I had to do something. This has worked for the last three years.

      4 years ago Log in to Reply
    12. P-O Heidling

      I gained weight during a period of 20 years until I reached around 100 kg/220 lbs. At 2010 I started with low carb, resulting in a 80% decrease of insulin needs. With that I lost about 20 kg/44 lbs in 4 months, and have stayed on that level since then.

      Today my weight is highly related to the amount of insulin I need. If I during times is forced to increase the basal insulin (like in times when I’m having a cold or being sick) I have noticed that for each unit increase of insulin, my weight goes up 0.5 kg/ 1.1 lbs. After going back to normal basal dose, the weight follows down.

      So I believe that the main contributor to the initial weight lost was the decrease of insulin, after switching to low carb.

      T1D since 1981, LCHF since 2010.

      4 years ago Log in to Reply
    13. JuJuB

      I need the option to indicate both weight gain and weight loss. When I gain, insulin resistance goes up and I need more, even when fasting. When I lose, insulin resistance goes down and I need less.

      1
      4 years ago Log in to Reply
    14. kflying1@yahoo.com

      My insulin needs dropped dramatically after the Adventist doctors found and fixed not just a congenital heart defect but also severe calcification of an aortic flap. Their repairs border on the miraculous. I’m using less insulin, able to exercise (gone from not able to walk a city block without collapsing to walking up to 6 miles a day – all the while dialing back the insulin doses.) If you have insulin/diabetic concerns – please consult your entire health care team – not just your endo practice. They may be able to provide directions that directly affect your struggles to fight our disease,

      Be well – be better

      4 years ago Log in to Reply
    15. Daniel Bestvater

      I have had T1D for ~ 45 years, over the last ten years my weight has dropped about 10kg(22lbs) and my insulin dose has gone from ~ 35 units to 23 units per day. I have always had a terrible appetite and find it difficult to maintain my weight. I try to eat 150 – 200g of carbs/day, A1c ~ 6 for as long as I can remember.

      4 years ago Log in to Reply
    16. Kris Sykes-David

      Being LADA and dx’d at 55, I gained 20 lbs. 130 to 150 and have kept that weight on even with daily exercise and strength training. I eat a healthy lower carb. Once my honeymoon was over my insulin needs have been basically the same for 8 years.

      4 years ago Log in to Reply
      1. Amanda Barras

        You gained weight after adding insulin because while you were undiagnosed your body was burning fat while you were spilling keytones. Like a person would on a keto diet. As soon as you started insulin & got control or sugars your body stopped spilling keytones and this stopped burning that extra fat. So, the extra 20 is actually much healthier with better diabetic control.

        4 years ago Log in to Reply
    17. Pauline M Reynolds

      I gained approx. 20 lbs. twenty years ago, and my weight has been steady since then. I cannot remember if my insulin needs changed 20 years ago, but despite having a steady weight afterwards, I still have experienced fluctuations in my insulin needs, the most recent being caused by gastroparesis.

      4 years ago Log in to Reply
    18. Amanda Barras

      Doctor put me on weekly Ozempic to help lower my insulin usage, appetite, and help me lose weight. It’s done the first 2, haven’t noticed any weight loss yet.

      4 years ago Log in to Reply
    19. LizB

      Over the last many years, especially from 2013 onwards, I gained a lot of weight. Last year I made some changes. I started IF which means I don’t eat breakfast and no snacking after 8pm (unless I have to treat a low). Just doing that my insulin needs dropped even before I had noticeable weight loss. Part of that was I always ate high carb breakfasts and my I:C ratio for breakfast was always the most aggressive. Just cutting breakfast dropped my insulin use by a lot!
      I gained weight because I was eating more than I needed and a lot of it was junk food. More carbs = more insulin = more weight. I don’t do low carb now, eating 124g-150g of carbs daily, TDD through my pump is usually ~25 units. I just track my calories and try not to focus too much on how much is carbs, fat, protein etc.

      4 years ago Log in to Reply
    20. Molly Jones

      About ten years after dx with T1D, I lost more than 8% of my weight with no known cause. I have many other conditions and medications.
      My need for insulin was reduced and has stayed low even though I have gained some weight back. I am still underweight, which was not the case before.

      4 years ago Log in to Reply
    21. Derek West

      Having been Type one for 50+ years I have no idea. Yes I’ve gained weight, not untypical over a 50 year span, whether it has affected my insulin needs more than using a pump or having a CGM or better food labeling, who knows.

      1
      4 years ago Log in to Reply
    22. Steve Rumble

      I have both gained and lost 10 pounds or more as a T1D adult, but the changes have occurred over extended periods of time. As my insulin regimen has also changed over time, due to age(?), activity levels, etc. it is difficult to attribute those changes to weight changes.

      4 years ago Log in to Reply
    23. Becky Hertz

      My insulin needs decreased, however, the reasons I lost weight were dietary modifications and increased exercise, which has been maintained.

      1
      4 years ago Log in to Reply
    24. Jneticdiabetic

      With the exception of weight gain/recovery in the year after my diagnosis and temporary weight gain during my two pregnancies, I have not had weight loss/gains.

      4 years ago Log in to Reply
    25. lis be

      My insulin needs decreased when i lost 30 pounds, but I believe that was due to low carb and exercise… after I lost the first 10, needing less insulin (while maintaining a good A1c) helped me lose more weight

      4 years ago Log in to Reply
    26. Lenora Ventura

      Gaining a significant amount of weight went hand in hand with pregnancies for me. My needs went thru the roof because @ 16 years being T1D when first son was on his way, insulin resistance set in + I had to eat 4,000 calories/day for his needs to grow. During pregnancy, I used an insulin pump and took injections due to such high bolus’s. I gained 60 lbs and have been carrying it around for almost 21 years. Loosing the weight has been impossible

      4 years ago Log in to Reply

    Experiencing weight fluctuations is a common experience in adulthood. If you're an adult with T1D and you have experienced a weight change (gain or loss of 10lbs/4.5kg and you remained at that new weight for at least 6 months or more as an adult), how did your insulin needs change? Cancel reply

    You must be logged in to post a comment.




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