Type 1 - Can't seem to lose Weight! HELP!

Hi Everyone,

I have been a type one Diabetic for about 16 years. I've been a pumper for about 10. Before I became a pumper, I would take a combo of insulin and metformin... did that for about two years and lost a HUGE amount of weight (I was always a chunky kid)... once I got off the metformin and started pumping my weight began to climb back up. Two years ago, I had a baby, and during my pregnancy my appetite was non existent so after I gave birth, I came out 20 lbs lighter...however, I now find myself back up about 30 lbs.

In Feb. I tried Phentermine (perscribed by a weight loss doc to me) and it worked wonders... pulled down my appetite and gave me some energy so I started making better food choices, drinking only water and working out 4 - 6 times a week. I lost 12 lbs in a month, but when I saw my blood pressure was through the roof, I stopped it b/c I didnt want to thrust myself into hypertention on top of the diabetes. Now, I have gained it all back even though I still have maintained some of my new good habbits. It has been a month since the Phentermine and I only drink water, I work out still about 4 times a week, I walk more, I count calories.... *sigh* and I still can't lose weight.

I did a search about type 1 insulin dependents and losing weight and I see that this is harder for us to do. Has anyone else conquered the weight loss battle on insulin? If so, please share how you did it and please give me any tips you may have. I am at my breaking point!

I can relate! Since insulin (was misdiagnosed as type 2 first) I have gained 24 lbs. SO frustrating! I too am watching what I eat and exercising but my weight has slowly been creeping up over the last 14 months. Wish I had the answer for both of us!

I've had some luck with weightloss, but it wasn't easy! I kinda got my rear in gear a couple years ago. It started because I'd had pretty poor control for a number of years, and I was determined to get myself healthier. I was at 180 lbs then, and when my BGs came into line, I gained 10 lbs! So annoying, but not particularly surprising, I don't think. After I got used to having better control, it seemed a natural progression to try to lose some weight. At the time, I was on Lantus and Humalog. The main thing that did it for me was very aggressive calorie counting. I switched to the pump a year ago, and have had a lot easier of a time exercising for sure, because I have way more control. It is frustrating because I feel like I have to have a calorie deficit of twice what other people do to lose the same amount of weight. You have to burn 3500 calories to lose a pound, technically, but I feel like I have to burn twice that to get that pound gone. So, if I want to lose weight, I eat pretty low calorie - maybe 1300 calories/day. I lost 40 lbs. I'm a work in progress.

I am also a type 1 (for 4 years) and I also struggle with weight loss. I gained weight after I was diagnosed and put on insulin, then gained more weight after I had a baby. I think needing to have such tight control during the pregnancy was so wearing that after the pregnancy I over ate since I felt so restricted during the pregnancy. I would like to lose about 30 pounds. It has been 3 months and I have lost 9lbs. I find that weight loss is EXTREMELY slow! Sometimes I get frustrated because others around me seem to lose weight effortlessly....while I diligently count carbs, measure, exercise, etc and the weight comes off SO SLOWLY!!! It can be so frustrating!!!! I have been using myfitnesspal.com There is also an app that I have on my phone or you can use the website. They have a pretty expansive food database to look up calories/carb info. I try to take in a net of 1200 calories. So, for example if I don't exercise then I only eat 1200 calories. On days that I exercise I can eat more. For example if I burn 300 calories then I can eat 1500 calories for a net of 1200 calories. However, on days that I exercise I try to not eat away all my hard work! I also try to eat lower carb. I eat about 80-100g of carbs per day. I also have a pretty high TDD of insulin which I think also makes weight loss harder. My TDD is about 50-55 units and my bolus/basal is 45% basal and 55% bolus. I could probably try eating lower carb and that would help too but I find it hard to eat less than 80g of carbs per day... I am anxious to hear of what others have to say...pointers, tips, other experiences... As I am fairly new to T1 I am still learning

I'm at my breaking point too and have been for a long time. I've been diabetic now for almost 27 years and have gained over 75 pounds in the last ten years. I also walk and count carbs and eat very healthy. I'm so tired of everyone around me saying that if you have less calories going in you WILL lose weight, period. So what about people like us?? I even had people at Weight Watchers tell me I wasn't eating enough, then I was eating the wrong things, eating too much, blah, blah, blah. Occassionally I can manage to lose 8 pounds but then I gain it back and then some. Sorry I'm not more optimistic but you aren't alone. I'm anxious to hear more on here from people who have found something that works. My weight is at a very unhealthy weight and I am so tired of doctors just shrugging it off.

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Hey, danadoll, that sounds really, really frustrating - I'm sorry it's been such a struggle for you. Have you gotten your thyroid checked? I've heard that is often the culprit, and there's a link between T1 and thyroid issues.

Just recently, I started a conversation about T1 and medically supervised weight loss. I was looking at OptiFast. The concept of losing 50 lbs in 20 weeks was so seductive. I have pasted below, one of the responses that I found particularly helpful. It seems that the "eat less, weigh less" mantra is at best way oversimplified (pun intended). I am still doing research and it is tough to separate the bs and fads from the science and practical useful advice. Hope this helps.

(copied response)
I am not affiliated in any way with the following but as a T1 I have found the folowing information to be immensely helpful.
I suggest you watch the movie Fathead on netflix, hulu or youtube. Or get your own copy from http://www.fathead-movie.com. Also read Tom Naughton's blog articles.
Read Gary Taubes book - Why we get fat and what to do about it.
Listen to Jimmy Moore's podcasts at http://livinlavidalowcarb.com/blog/
All of these offer incredible information about weightloss and a sensible diet which will not leave you feeling starved. There are much better solutions to your problem than an optifast diet.
The information is there but it is up to you to use it. Good Luck.

When I was diagnosed as Type 1 almost 30 years ago, naturally I was devastated. Someone said to me look on the bright side, you’ll never be fat. Famous last words. I’m not fat but I’d like to lose about 25 pounds and look really good. I eat right and try to take good care of myself but age, gravity, etc are all working against me. Some people are natural fat storers which makes it hard no matter what. To reiterate, you aren’t the only one in this situation.

As long as liver is adding excess glucose during fasting or doing nasty large dumps; one can find it near impossible to lose weight. Under normal conditions, yes dropping calories low should result in weight loss.

I have used a 1200 calorie diet - low glycemic style and 2 miles walking for last 5 years. During the first year of that period, I was gaining weight up to 330 pounds. ( water plus fat)

After a1c dropped from 13.3 to 6.4 from using metformin to cut off excess liver glucose release, weight than started dropping and my weight fell to what is now 251 pounds and still dropping slowly.

some folks think metformin is a type 2 disease medicine. I suppose. It actually is a medicine that directly stops the excess glucose release by liver. If liver is issue, this may help one in circumstances where it is very hard to stop weight gain.

On the other hand it is extremely important to carefully review input and calories as well as not sneaking extra snacks or booze loading one excess calories behind ones back. Also, it may be wise to check current energy burn and see if that has slightly dropped.

Extra insulin can also add to this fracas as well.

Being T1 and depending on insulin makes getting older a real challenge when it comes to weight loss. And often there can be other conditions that can befall us that make weight loss, even with starvation, near impossible. For instance, it is critical that we all make sure that we don't have thyroid conditions and don't suffer from PCOS or sleep apnea.

And I have to tell you, we are told by the "professionals" to cut calories and exercise and the weight will just melt off. Well, I'm sure you all can smell bull. It is harder than that. When you depend on insulin, it is a lot harder than that.

I believe that a magic recipe for weight loss for many can be a lower carb diet and tight blood sugar control. I don't mean 7%, I mean tight blood sugar control. The optimal conditions for mobilizing fat is between meals when we are fasting. If we walk around all day with elevated fasting numbers and high levels of insulin we will never lose weight. When your fasting numbers are 70-90 mg/dl and you walk around all day with just enough basal insulin you become a fat burning machine. A low carb diet really helps because it dramatically reduces the blood sugar swings after meals enabling to get your blood sugar down, and it also markedly reduces your daily bolus does, thereby reducing insulin.

So to sum up my suggestions. Do very focused basal testing to really get your fasting levels normalized. Eat a low (or at least lower) carb diet. And think about increasing those fasting times. Cut all snacks (if you basal is right, you don't need them). And consider intermittent fasting, skipping a meal or two once or twice a week (again if you basal is right your will be fine).

Very well written and so true! There have been many times when "professionals" have made me feel like a failure or insist that I am eating more calories than I am telling them and that is why I am not losing weight. How many grams of carbs would you consider a low or lower carb diet? Also the suggestion to skip a meal once in a while makes sense too...being diabetic it seems like "professionals" also have a tendency to push making sure we eat 3 meals EVERY day, which can be frustrating if I'm not hungry or trying to lose weight. Thanks!

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Brian ~

At your convenience, could you explain a little bit about having thyroid conditions and sleep apnea as they relate to weight loss effort? I am not only Type 1 but also have hypothyroid and obstructive sleep apnea. I take Synthroid for the Hypothyroid and I also use a CPAP machine. Technically I am being treated for these conditions, but like the original poster and others - it is very hard for me to lose weight - except when I'm sick. Thank you for your time.

I had my thyroid removed before I became diabetic over 30 years ago. I would do anything to get that gland back!!! I had an over active thyroid in highschool and that is why it was removed. However, my thyroid has, according to my blood work and my doctor, at perfect levels. Does not make sense to me at all. It seems that, at least for some, it is just going to take lots of hard work to just keep things level and to not keep gaining weight. There are a lot of good suggestions here. Not real happy with my current doctor because she keeps telling me to eat more and more carbs because of my low blood sugars which may be why I cannot seem to lose only gain. I'm moving to Texas and going to start going to Joslin Clinic and I'm hoping to get my basals regulated.

Brian (bsc):

Thank you for excellent well written detailed response dealing with the issues.

How can I figure out if liver is an issue? Sorry for my stuid question :slight_smile:

My professionals push 5 meals a day :). With fruits!
According to DrBernstein tight BG control is possible with eating 30 carbs a day.

I think it’s hard first weeks. Then your body adjusts. Be sure to increase salt intake to lessen the carb withdrawls in transition times, usually a couple of weeks. They recommend to drink lowcarb instant broth.

That is not a stupid question.

For me it was a couple of issues. When stomach empty and no more glucose from digestion, BG would slowly keep drifting up instead of stabalizing and stopping and then slowly drop.

Another clue is that peaks on digestion will be much higher than food eaten would warrent.

Third would be the appearance of dawn phen that has high levels like greater than what it was at midnight. 110 at midnight 150 at 3:00 am and much higher at 6thru 8 am. Mine was reliably 238 at wakeup.

Some may point out that the liver is signalling poorly on available insulin and dumping in excess glucose. The liver works on the inverse of the insulin level; the lower the insulin; the higher the glucose that will be added by liver on a liver function. Some folks on pumps and needles may be able to add basil insulin doses and if liver signalling working properly, the basil insulin may correct dawn phen.

When blood glucose drops sub 70; liver is supposed to add glucose to bring up the bloodg lucose to 20 percent above nominal max. Any higher than an issue. Unfortunately, the liver signalling can be faulty or the insulin levels extremely low and or all of that plus leaking.

In the case of faulty signalling, metformin will cut off excess liver glucosea add.

In my body, when blood glucose drops sub 70, the liver would throw the whole liver buffer at the problem and I would see my blood glucose shoot up to 511-max on caveman machine and then slide back to 278-311 as heart pumped stuff around the body averaging out the readings.

Because my liver would throw the whole buffer at the problem; I called that a dump.

For me, metformin solved the problem as well as the dawn phen.

Another flag may be a1c that will be higher than expected assuming proper diet, clories input and sufficient exercise. Here most folks unless on cgme are not watching BG during sleeping hours to see what is happening. During the conflagartion, my a1c was 13.3.

as pointed out by Brian (bsc), one really needs to check into diet/ food, calories, exercise as well as insulin used to be sure one is not missing anything as well and inadvertantly spiking the ball.

How do your morning sugars run and how high are you an hour after treating a low blood sugar? If you typically hit over two hundred after treating say a sixty two with an airhead candy then its over reaction from your liver. At least that's what my Dr. has told me. Also morning blood sugars are a good sign of what the liver is up to at night.

Low Thyroid levels, so called hypothyroidism is well known to result in an inability to lose weight. Thyroid conditions are often undiagnosed or insufficiently treated and this can really make weight loss very difficult. Many people believe that it is important to treat the hypothyroid symptoms and not the TSH test result. I am sure others with far more experience could help here.

As to sleep apnea, it is basically an unrelated condition. When you have an apnea event, you stop breathing and your body is stressed. And when your body gets stressed you release cortisol and that can lead to elevated blood sugars, inflammation and a variety of metabolic disturbances. You may even get adrenal fatigue as your body deals with the residual cortisol and stress throughout the day. I think that a lot of my Darn Phenomenon problems have been aggravated by the sleep apnea. My apnea is apparently due to the genetics and I struggle to get my AHI down below 5.

So I would recommend that you try to work with your medical team to make sure that you thyroid medications treat your symptoms and that you ensure that your CPAP is working effectively.