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Help! Weight loss impossible?

I am new here and have had T1 for 27 years. Diagnosed age 21 and now age 48. I have been on a pump since 2005 that coincided with my first and only pregnancy – she’s 11 now. Before that, I was always thin. I am 5’6″ and had always weighed in the 120s. Went on Lantus in 2002 and gained 10lbs but was still ok at that weight of around 135-138. Pregnancy made me gain 45lbs and after baby, never lost it all, stayed around 154 for years. Then 3 years ago, had to go on a new med for another health issue, and ballooned up almost 20 lbs because it made me have severe cravings. I am now on the lowest dose of that med and cravings are gone but still cannot lose weight. I have tried every diet around – low-carb, carb cycling, Weight Watchers, Trim Healthy Mamas, was even on Phentermine and no weight loss. I’ve tried keeping calories to around 1200-1300 using My Fitness Pal and no loss. I walk 30-45mins 4x per week. I even did a boot camp for a month and experienced 0 weight loss. I am incredibly frustrated and at my wit’s end. I’ve been to countless nutritionists here and they are worthless – they don’t understand how insulin is hindering weight loss and never tell me anything new. I tried Symlin and saw a modest loss of 3-4 lbs but it made my lows so horrible, it was scary and I could not tolerate staying on it.

Has anyone successfully lost weight while on a pump? What can I do? What am I doing wrong? I am sad and feel badly about myself at this weight. I’d be happy with even a 10lb loss at this point but I can’t even get to 1-2lbs loss.

I have considered using Integrated Diabetes services online b/c they have a weight loss plan that they can customize but it is incredibly expensive and not covered by insurance. I thought I’d see here if anyone has any advice before going that route but I am desperate.

  • #122326
  • for me the tough part is having to eat sugar when low. I don’t do anything different but I do cut insulin and carbs for each meal, especially dinner. if I am a little high, I add some mild exercise like walking. I only use 50%-60% of my usual insulin for a given amount of carbs if I add something mild like walking. the combo of less carbs and less insulin plus a little walking is all I do.

    one other thought. when was your last thyroid test (TSH)? if you are short on thyroid weight loss can be a nightmare.

  • #122328
  • I had a thyroid test a couple weeks ago, it was normal.

    Are you saying you are able to lose weight doing the things you mentioned? I am not sure I completely follow.

    And yes, treating lows messed me up – when I do cut carbs, I go low and then any weight loss I might have had is negated because of treating the lows.

  • #122329
  • I, too, have trouble with my weight. I take Toujeo at night and use Novolog for my fast acting insulin. I exercise every day for a minimum of 2 hours and eat very well. Low carbs, lots of vegetables and lean meats comprise my entire diet. Even though I take in around 1000 calories a day, I cannot lose weight and it continues to creep up, making my average weight go up about 1-2 lbs. a year. That is fine for awhile, but this pattern can’t continue. When I spoke to my endocrinologist regarding my inability to lose weight, she suggested that I reduce the amount of insulin that I take, keeping my blood glucose numbers high (around 150-250). When I did that I lost weight, but the adverse reactions from having too high of a blood glucose number wasn’t worth the weight loss. I had headaches, couldn’t sleep, was exhausted and very grumpy. I don’t know what the answer is either and would love to get some insight from other T1D and what they do to keep their weight in check.

  • #122331
  • sorry I was vague @Tikicristi,

    I pretty much use the same insulin for the same meals. Lets say “sandwich” with 38 grams of carbs, I would typically need 3.8 units.
    When I need to cut weight, I first reduce insulin, say 10-30% for any given amount of carbs I am about to eat. for that same sandwich, I would bolus 2.5 to 3 units, then to keep my blood sugar good I would take a 15-20 minute mild walk right after eating. The reduction of insulin and the addition of a little activity typically leads to weight loss without hunger.

    If I want to lose more than 5 lb, I might also reduce the carbs… say instead of “sandwich” I eat a equivalent calorie salad but only 16 grams of carbs. as above, this is normally about 1.6 units for me, I bolus 1 to maybe 1.2 units and do a bit more or a bit more vigorous walking as well. This works better but I tend to feel more hunger between meals.

    carbs at dinner (for me) needs more insulin because I am not usually as active. eating a huge carb meal and covering with insulin and then going to bed will put weight on me. so I first cut carbs at dinner time or anytime I know I am not going to be as active. then after cutting dinner carbs, I would next cut fats, again at dinner time first then lunch then breakfast. This reduction in fats makes a big reduction in calories so if I start getting very hungry I know it’s too much.

    If I know I am going to be super active, like a long bike ride, I treat myself to more carbs and fats before the ride and I am really careful to use maybe half (or less) the required insulin. If I don’t do this I’ll be starving and put away a pizza and ice cream for dinner and need to start all over again. =)

    yes this may seem backwards, especially to folks who don’t use insulin, but it works for me. Undershooting insulin and using activity to lower my blood sugar helps me not go low while increasing activity and cutting carbs, nobody’s perfect and this takes practice. don’t get discouraged if you go low at first because you haven’t cut insulin enough or put in too much activity. don’t over-correct either because THAT roller coaster can wreck your day.

    once I get regular activity levels up I begin to reduce my basal programs. High basal will make you go low between meals. Exercise can change basal requirements as your overall metabolism finds a new balance point. Basal requirements can change for 2 days after activity, so a “active day” program (or pattern or whatever your pump calls it) may become your permanent program and you may need an “inactive day” program instead… I start to watch basal requirements about a week or 2 after I start to make changes in activity.

    This takes a lot of testing or a CGM so you know where you are. you’ve had T1 a long time so I assume you are ok with tweaking and adjusting your own insulin including basal and meal bolus. If you’re not then I recommend a CDE. The book “Pumping insulin” can help you with bolus and basal testing protocols. I am glad your thyroid is still good, mine broke 15 years ago. It eventually gets destroyed by the same autoimmune cells that ate your pancreas beta cells. Don’t forget: insulin is a growth hormone. we need it to live but the less we use the easier it is to lose weight. good luck!

  • #122332
  • THANK YOU JOE!! This is very, very helpful. No doctor or dietitian has ever taken the time to explain it the way you have. They just tell me to cut calories and exercise more but fail to say adjust insulin, so then I go low and overeat and mess up any progress. I am very comfortable tweaking my own pump basals and boluses but just have never really known the best way to do it with trying to lose weight. I definitely need to lose more than 5 lbs but a 5-lb loss at this point would be a huge victory! I have recently increased my walking miles and time, so perhaps if I also cut the carbs and insulin down some, I will see some results. Thank you so much, very encouraging. 🙂

  • #122335
  • @Tikicristi, you’re welcome. very few doctors and yes…very few dietitians actually have t1. it doesn’t compute unless you have it. good luck!

  • #122337
  • @nscole@earthlink.net, I would fire any doctor that told me to run my numbers up to 250. Of course you can lose 10 pounds a day by not taking any insulin… and you’ll get very very sick.

    good bs is my #1 priority. in a normal person, the extra activity and limiting of calories automatically means less insulin, probably 50% less insulin absorption a day, because that’s what your body does on it’s own. we have to manually drop calories, manually lower insulin, increase activity and watch blood sugar the whole time and oh by the way, we have a window of accuracy that is about 4 “skittles” wide. it can be very challenging. hope you are also doing ok.

    Joe

  • #122338
  • Thank you, Joe. Of course, I am not happy with the doctor’s recommendation and am looking for a new endocrinologist. This is my third one and I am beginning to think that I am the problem, not the doctors. Anyway, would you think it better to reduce the Toujeo by an unit or two (currently I take 14 units each night) or would it be better to reduce the bolus insulin? Typically I work on a 5 carb to 1 unit ratio, which I know is high, but that keeps my bs pretty much in range. I can’t seem to find anyone who says which is better, health wise.

  • #122340
  • @nscole, i don’t think it’s you. I think that anytime you have to manually adjust metabolism it becomes a complicated problem. The way the healthcare system works in the US now, doctors do not have the time to invest in an individual patient anymore.

    the rule of thumb is that your total basal (you said 14 units) should be about 50% of your total daily insulin. That means to me, that you are only bolusing for about 70 grams of carbs a day? is that about right? It sounds like the actual reason your carb ratio seems high is because you might be depending on your meal bolus to cover a portion of your basal… I might be wrong here.

    I highly recommend that you do a couple weeks of basal protocol testing. This involves making sure your blood sugar is in range, skipping a meal, and then watching your bs until it’s time for the next meal. then you eat normal and skip the next day and then the following day you skip a different meal. I’d bet that you will see your bs rise when you don’t eat… and I bet it’s because your actual basal requirements are higher than you think. “think like a pancreas” and “Pumping insulin” both have test protocols for basal fine tuning. basal is the hardest to get right. I never could get it right on long acting and it’s the main reason I switched to a pump. Pumping actually reduced my total daily insulin by 15%, because I can set it for just the right amount of basal instead of always being too high or too low.

    if basal and bolus are both right… my best results are adding activity and dropping mealtime insulin. then dropping carbs and a bit of fats. then after a while, checking and dropping basal insulin as necessary. I also recommend keeping an eye out for thyroid problems as low thyroid is common for diabetics. good luck!

  • #122342
  • Hey Tikicristi,
    I want you to know that you are not alone, and I too have been struggling with trying out different diets, it can be extremely frustrating. From what I read, I think that you are going far to aggressive on your calorie restriction, I would take it up a couple hundred calories.
    As far as SPECIFIC diets and dieting goes, I’ve experimented with a lot, Ketogenic, Low Carb, No Carb, High Carb, etc. I’ve had a lot of success with Intermittent Fasting though, and the way I do it is I set a specific time of night where I’m not going to eat until breakfast. For example I have breakfast at 9AM, so I stop eating at 7PM.
    Another huge obstacle that a couple of people have tackled is addressing lows without eating sugar, this is difficult. I’ve found that a spoon of peanut butter is a mildly healthy snack to help these lows. If I get a low after 7PM though, what I like to do is make some tea and put Agave Nectar in it. That will keep me until breakfast the next morning.
    If I had to give you one bit of advice, it would be to relax, and try out 1 diet per month, or even 2 months. I found that I was jumping around different diets far too often and not seeing any results.
    Cheers from Seattle!
    Warmly,
    Sage

  • #122353
  • I am new here also, just signed up today. I am so glad to know that I am not alone either!! I have been going to primary doctors and my Endo for over a year to figure out why I was gaining weight and now, why I cannot lose anything. I have tried every thing I could think of and nothing worked, not even Nutrisystem D (for diabetics) I did that for 8 weeks straight while working out for an hour every night and nothing. I gained 80 pounds once I recovered from emergency surgery 2 years ago. After surgery I got all new doctors and was diagnosed as type 1, not type 2. My Endo told me that my pancreas basically was not producing any insulin. My primary said she didn’t know what else to do and my Endo referred me for weight loss surgery. My BMI is not high enough (alone) to have the surgery. They are looking at that, along with Diabetes and severe Sleep Apnea. I have my first appointment with the surgeon tomorrow, to go over all my medical records, options, etc… Which are pretty much none until 2009, when I was diagnosed with type 2. I have told them ahead of time that I do not want surgery unless it is medically necessary. (the extra weight is starting to physically effect me) I am hoping there is something she can tell me. I thought I was the only one going through this. I am sorry if this is all over the place, I am so excited to finally feel like I am not alone. I feel so awful at this weight. I don’t even look like myself. I look in the mirror, when I have to, and it is like a shock. The other upsetting thing about all of this is I am getting married in October and I don’t want to be the biggest I have ever been in my life. I want to do this on my own, but I don’t know how. Thank you for posting your frustrations. If you had not done so, I would still feel so alone and defeated.
    Susan

  • #122369
  • Great advice on the carb/bolus adjusting. One thing that can be a huge weight loss catalyst is the type of exercise, and intensity of it. I happen to be a fitness professional, as well as T1D. The walking can be great low impact exercise, but sometimes not enough. One suggestion would be focus on resistance/weight training exercises in combination with HIIT training (high intensity interval training). To start, hit the weights. The bigger and stronger our muscle tissue is, the better out metabolism is, hence the better we utilize calories and burn fat. The HIIT training is based on intervals of high intensity cardio with intervals of low intensity cardio. This does not have to be grueling, the intervals can be as short as 30 seconds, and can be done on a treadmill, or running/walking in your neighborhood. Start slow with the cardio and light with the weights. I have worked with a few Type 1 and 2’s over the years, as well as myself, and this has been successful for weight loss. Definitely keep an eye on BS levels during activity, as we all respond a little different, and #’s might drop during exertion. Also, if your local gym has some qualified personal trainers, you may want to consult with one, and get assistance. Good luck, and don’t give. There is a lot of great advice here.

  • #122370
  • Joe,
    Which “Pumping Insulin” book do you recommend. There are several, on amazon.com, under that title.

    Thank you,
    Susan

  • #122371
  • Also which “Think Like a Pancreas”?

  • #122372
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