Newly Diagnosed: Insulin Weight Gain

Type 1 and LADA
1

Hi friends!

My name is Audra. I'm a newly diagnosed Type 1 (diagnosed in May.) I wanted to see if any of you have experienced weight gain after diagnosis?

My doctor said I could be gaining weight because my body is now processing sugar regularly, which makes sense. But before diagnosis, I was a healthy 143 pounds which is great for my frame and height. I was comfortable there. I live much healthier now than I did when I was 143…but I am still gaining weight like crazy.

I work out 3-5x a week for 45 mins to an hour each time. I eat clean and 70% paleo…I just weighed myself this morning and I am a whopping 160. I CAN'T EVEN FATHOM THIS MUCH WEIGHT ON MY BODY. Nothing I'm doing is helping and I'm so upset.

I have a doctor's appointment on Thursday because I'm afraid I have thyroid problems. But if it's not thyroid, then I have no idea what it is and how to fix it. Any insight is appreciated.

Thanks for listening to me.

Audra

2

You are probably feeding your insulin to keep from having low BG and this will contribute to weight gain...JMHO... Get on a treadmill or ride a Bike. I lost 36 pounds in 45 days riding a bike 12 miles every weekday and 25 miles on Saturdays. My food intake was about 900 to 1000 calories each day. I did consume about 1 glucose carb per mile but never counted it as part of my diet. I would have breakfast and ride my bike or go to the gym for a spinning class when the weather was bad, this would eliminate about 50% of my morning bolus and basal insulin.....My spinning class was at 5:45am, you will have to make a permanent change to your life style...the insulin is forever and so is your new diet and life style. I think you already know what is causing the weight gain, sometimes we just don't want to admit whats needed, it's such a drastic change.

You also need to make sure no one around you is influencing your food decisions, like when, where, what, and how much you eat. You must be in complete control, it took me 20+ years to fix this part of my relationship with my wife, children, close family, and friends.

I felt horrible but never looked better than when I was diagnosed..I was working out everyday and eating 4000+ calories . I could not gain any weight...I was suffering from DK and in fact slowly dieing....

It takes time to learn how to live with such a life changing illness, some call diabetes a disorder, yes that's what it adds to our daily life "Disorder" and it takes time to adjust, and adjust, and adjust, and adjust...every day is an adjustment.

Do something you can be proud of...don't let Diabetes take a front seat...make it ride in the trunk...;-)

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3

Yes, I think it's very very common because the insulin allows you to utilize all of your calories.
Also, sometimes when people are just diagnosed and their bg has been high for awhile, the body is dehydrated from frequent urination. Then when BG comes down, the body will try to hang on to more fluid than necessary, but this will gradually balance itself out. That happened to me (40 years ago) and I also found it very frustrating.
When you go to the dr be sure that you ask all the questions you need to and be sure he gives you an answer you understand.
You'll be okay. So glad you found TD.

4

Sometimes what can is that before you were diagnosed, your glucose levels were high. So you were peeing out quite a number of calories. Now that you are on insulin, those calories are getting into the cells of your body. Basically you were actually eating more than what your metabolism and exercise allowed, you just got used to it.

Also, make sure that you are eating a proper diet for YOU, and not the one-size-fits-all that is often prescribed by well-meaning dietitians.

5

I totally understand your feelings. I began slowly gaining weight and it really upset me. I am 65 and have a lot of trouble losing weight but did even when I was younger like you. Which also means I gain weight easily so I have to work hard to combat anything that makes for weight gain. I know that people sometimes do gain weight when they first get on insulin as they are using their food better. For me I only gained about 5 pounds then but the steady climb came later. I used to believe that beyond that initial healthy change insulin doesn't cause weight gain but I now believe that for some of us it does.

I'm not an exerciser so what worked for me was to cut my carbs. Do give that a try and in addition to your exercise it should help you. But someone else mentioned "feeding the insulin" which can indeed be an issue with weight. I jokingly say that my excuse for not exercising is that people seem to have trouble balancing their blood sugars with exercise. But people also eat to keep from going low which sort of is counterproductive for those who want to control weight. To know if you are "feeding the insulin" check if you have lots of lows and then eat to treat the low. Then consider reevaluating your insulin dosing (and perhaps switching to a measured dose of glucose tabs to treat lows).

And yes, many of us with Type 1 also have thyroid disease so that is a very good idea to check. If you are hypothyroid you will gain weight and treating that with a thyroid pill will stop it.

6

In the first 1/2 year after diagnosis it is unavoidable to gain weight. As a T1 you have lost much of the capability to process glucose. Thus your body has burned your fatty tissue as your main source of energy. Harmful amounts of tryglycerines - byproducts of this fat burning process - have flooded and contaminated your blood stream. This caused your electrolyte metabolism to get out of the normal range. In addition your kidneys have worked day and night to get excessive glucose out of your blood stream. Both effects will negatively influence your water balance. After the reintroduction of insulin to your metabolism the natural reaction is as follows:

a) your body learned that it is critival to retain and preserve water. Thus you will look puffy for a while. Most of your weight gain will be from this water retainment of your cells and kidneys. With time - up to 1/2 year - this will normalize again.

b) your body has learned that a severe crisis can occur that will consume all of its fatty deposits. The reaction is to store more fatty tissue as a preparation for the next crisis. With enough food available and sufficient insulin your body will learn that the accute crisis is over. Thus it will learn to be more "wasteful" with its energy. But this might take more than a year.

Try to be more physically active to work against the weight gain. At the same time give your body what it needs: enough carbs and enough insulin. The more sufficient this coverage is the better your body can adjust to your new "healthy" normal...and finally be patient...it will take its time...

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7

Seemed like I had weight gain issues until I got the right basal rate (I'm on MDI...multiple daily injections). It was too high and as JohnG says I was 'feeding my insulin to avoid lows. My levemir is pretty much spot on, so unless I'm exercising, I don't need to eat. Today I had to skip lunch, went 8 hours without eating anything or taking insulin, and my BG was stable and where I wanted it.

8

I'd say wait until you find out if your thyroid is the problem or if you have something else going on , like check it out, and don't try anything new until then. I feel like it has to depend entirely on the person and a lot of factors though, as I haven't gained more than maybe 1-3 lbs since starting insulin and I have a feeling it was my actual diet change from starvation (my misdiagnosis of type 2 screwed me up really badly) to healthy eating again. I'm still not eating a whole lot of carbs a day (probably 130-160? grams a day but that's still a lot more than I used to eat post-dx, and not much less than pre-dx) and I'm a vegetarian that only really eats dairy as far as animal products go . I'd say if nothing else, talk with your dietitian and/or diabetes educator.

9

Hi Audra,

I lost about 20 lbs going into DKA, I don't remember now what I weighed before it all started but I was always either quite thin or a normal weight my whole life except for when I took elavil for chronic pain, that made me crave carbs and made me eat more. I gained 20-25 lbs then but was still not overweight and when I went off it I lost 25-30 lbs and was super thin. It was a horrible withdrawal from that too and my reflux became very severe.

Anyway, after I went on insulin I gained back my dka loss and then was gaining a little more too- I noticed here someone said Lantus makes you gain and I switched to Levemir. I stopped gaining weight then and have actually lost around 7 lbs but gained around 3 back. I have no thyroid issues it seems but I would definitely check all that out.

I don't know if you're on a pump or mdi but you might want to switch the basal if you're on Lantus.

I have not increased my exercise at all, I eat low carb, no grains or potato etc. Lately after being sick for a month on and off and with the cold whether I haven't had energy even to do my walks but all the shopping etc. keeps me moving and works as exercise too I'm sure.

10

Yes, absolutely. My normal weight was around 145, and when I was diagnosed I was down to 125 and accustomed to eating huge amounts of food. Within a few months of insulin I was up to 165. Even worse, the gain was weird, bloaty, and uneven. I was getting terrible lows and eating everything in sight out of fear.

I'm so sorry you are experiencing this, but be patient and know that you WILL get it dialed in. You are re-learning how to live with a whole new set of rules, and your body and habits both have a lot of adjusting to do. It helps me a lot to track my calories on myfitnesspal.com. I for one can not "eat intuitively" or "listen to my body" cause my body is all whacky from insulin! Hunger is totally unreliable for me and affected by highs and lows. I have to track food or I gain weight. Keep exercising, learn as much as you can about YOUR diabetes, responses to food, insulin, etc. Knowledge is indeed power in our case.

Your job right now is to be as healthy as possible. You're doing great. One more thought- If your insurance supports it, I would also recommend talking to a therapist. You sound like you have a great attitude, but a lot of weird guilt and body image stuff can be attached to diabetes, especially for young women.

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11

Dear Audra,
I am mirroring exactly what you are saying. It had been a year, Oct.2014 since I’d been diagnosed with Type 2. I ate clean for a year, brought my numbers down to 100 and under with Metformin, felt good, was in shape, and my weight at 148.
In November 2015 all hell broke loose. I had nonstop diarrhea and did not get diagnosed with Lyme tim July and lost 20 pounds…so 128…way too thin, but I ate, and finally went to 133. My numbers started climbing and Metformin was no longer working, I hit 500 after lifting Mar.2. I was put on glemeperide and Metformin. My numbers barely moved…436.
I finally went to an endocrinologist on March 27th, was taken off the two diabetes drugs, blood tests were done, and I was found to not be producing insulin and immediately put on Lantis and Humalog. I continued to eat clean, 1500 calories, 60 carbs a day, exercised. My numbers went down to 120 after a month and I gained 25 pounds…to my horror!! I fit in nothing…jumped 2 sizes, but refused to buy a new wardrobe. It would have been fine to gain 10 or 12 pounds, because I was too thin for 5’7". To be doing everything right and to see a pound to two pounds a day packing on only to be at 159 when I went back to the doctor after a month!! So upsetting!
My thyroid had already been checked with no problems. I can understand that for things to get back to normal, my hypothalamus went into high gear nourishing me and storing fat until my numbers came down. But 25 pounds. At 68 you don’t lose that kind of weight quickly, especially when you are already eating clean, 1500 calories, 60 carbs spaced out throughout the day.
It doesn’t help that your doctors are young and they figure because you are 68, you are old and you just have to deal with the weight gain and lose when it happens. You have done everything possible to stay healthy and now you can’t lose because of the insulin. I beg to differ. I was at a healthy weight, in great shape, was attractive and able to wear flattering clothing and no on would think that I was over 55. Dammed frustrating! I’ve never had a belly, had a waistline, and now my belly is so swollen I can’t fit in pants or tops!
Since my numbers are down to between 80 and 110, I believe the Lantis has helped to bring my numbers down, but I think the dosage at 12 is too high. I dropped it to 10 and my numbers were still fine. I lost .2 of a pound. I waited a few days, my numbers average continued to go down, so I dropped it down to 8 and this morning weighed 2 pounds less and my numbers are fine. I take 5 units of Humalog which is the prescribed dose and that’s working fine.
I tend to have a decent breakfast and a decent sized lunch, a snack in the afternoon, but more carbs earlier in the day and less for my last meal of the day, supplement with 1/2 a healthy protein shake with 1/2 an avocado, greens, and almond milk. I’m feeling less bloated, no episodes of low blood sugar.
That’s my answer for myself at the moment. I know everything has to balance and you do need to make sure to have a carbs and protein mix with every meal. I’m finding if I don’t have carbs, I get that low blood sugar feeling and have to take glucose tabs to be normal. But…since I’ve made sure to have the carb/protein mix, I’m able to keep my blood sugar normal. It’s only been since Mar.27th. I’ll stay the course and continue to do what I’m doing.
Wishing you the best! I’m with you on this one. I am NOT staying at this 25 pound weight gain!
Jane

12

Thanks, John!
I need hopeful stories like yours to stick with it. I definitely don’t want to deal with all the consequences of not following the course. It’s true that people in your life don’t get it, figuring you can just have one bite of junk food. For me it triggers binging in me, and after eating clean for most of my life, what has spiked my blood sugar has been the sweet binging during the holidays and other stressful periods in my life…and when you enjoy cooking and are good at what you do…it’s a jolt to reality that your life has changed.
I appreciate your comments.
Jane

13

Yes, to that Cora. One dietitian advised eating 150 carbs a day!! That’ll keep you hooked to a high dose of insulin for the rest of your life. 50 carbs with protein and veggies spaced out throughout the day is the way I’ll proceed until my body tells me otherwise. So happy I found TD!
Jane

14

Thank you Carrie Jane for your story. I thought I was doing all the right things and it was really upsetting me to get on the scales and seeing another pound added on. I will be patient and give it more time.
LadyJane

15

This is encouraging to read. I also gained weight, 25-30 lbs from last October by late November had gained 25. I am on Tresiba and think I have finally accepted that I need 19 units each night. I am having good fasting numbers 70-115 depending on what I eat the night before. I am using less bolus. My clothes don’t fit and I am trying to not focus on body image and focus on good blood sugar control. I walk and go to yoga about 5 days per week. But I believe I need more vigorous exercise as others say here, to improve metabolism and help with weight loss. I hope my body balances out soon. It is tough being used to a certain weight, eating healthy and low carb and not dropping this weight. I am on month 7 but only a few weeks at the 19 units. I think it will take many more months to get weight to drop. I hope to start biking again when my bike arrives from our previous home in another town. It helps all of us to share our stories and I don’t feel so alone.

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16

I was also carrying more weight than I should have. It was one of my biggest frustrations with my diabetes. After talking my endo who asked me what are my 2 biggest problems with my diabetes and I said weight and post meal spikes.
So we worked hard at lowering my insulin levels. The reality was I was taking too much insulin. I have such a fear of highs, that I would do anything to avoid them, yes even stacking my insulin. So I cut close to 10 units off my TDD over the past year. So I am no longer “feeding the insulin”. No longer eating to fix the lows. Which is just empty calories.
I also got a puppy so I am walking so much more than before. I walked a lot before but wow, getting another dog, just huge in the exercise mode and she makes me laugh everyday!
And I also went off label and am using a type 2 injection. It has completely cut my appetite. I am not hungry and don’t really need to eat. So with those three changes, the weight came off. Not a lot, and not very fast but it was 12 pounds this past year and 38 total over the past 3 years. Slow and steady but I am the lowest I have ever been and in the smallest pant size of my life.
I’m just so happy I finally figured out that more insulin can sometimes lead to weight gain because you are eating more to fix the lows. Stop the lows and no more snacking. Stop the lows with less insulin. But wow, is it a struggle to find that correct level of insulin to stop the lows but not so little that you run high.
Don’t give up, it can happen!

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17

Sally

Can I ask what off label injection is helping? Are you Type 2 or Type 1.5? I am considering trying an injectable, not thrilled with idea, and not sure it will work for me. I am supposedly a Type 1.5 but my current endo thought it could help.I am not feeding the insulin as I rarely go low. I had to go to 19 units of Tresiba nightly to get 100 readings in mornings. I wanted to take 16, 17 or 18 units but it is not enough. I don’t have to bolus much sometimes not at a all as I try to keep carbs less than 30 per meal. I know I weighed 25 pounds extra when put on insulin 10 years ago in Germany and lost it over one year after going off insulin. Now 10 years later, I must take insulin, but am determined to get back to my 125 pounds I have been at for years until insulin last October began. I am considering Trulicity but am a bit concerned with it. Hoping to hear what type of injection for you took away appetite?

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Hi,

I’m a different Sally. :slight_smile: And I’m going to ramble on here… maybe related in weight issues…

Sally7 is probably talking victoza.

I also super struggle with weight. I can only think about food and I gain, it seems. There is the fine line between enough insulin to keep our sugars where they should be, and too much causing weight gain. Even intermittent fasting and very low carb diet seem to do little…

I saw a new obe-gyn on Thursday. He is also into antiaging medicine. He says insulin is highly inflammatory, and absolutely promotes weight gain… even though it is needed if one is type 1. He didn’t seem to believe I wasn’t type 2… and seemed to think I’d be able to get off or at least reduce insulin if I lost weight (oh, well, I’ll show him…). At least he didn’t freak at my low a1c, and he eats ketogenic and uses intermittent fasting… and also uses these tools in management of infertility.

Anyway, I have gotten much tighter control (gone grit - Berstein low carb) the last few months and my difficulty losing weight has also gotten worse… but then my thyroid has also been out… and I really have to get levels back up.

I am trying hcg treatment now, on his recommendation… I have lost 0.5 kg/day since then, though this is only the 3rd day so can’t say if it’s really this or some other unexplained trend (I do tend to fluctuate dramatically anyway), though nothing else has changed…

The reason to try hcg treatment, apparently, is that this should help increase testosterone levels among other effects. This new dr said that low testosterone levels (in males and females) can affect ability to lose weight… however, that testosterone dosing/ supplementing is not safe or effective, and instead hcg dosing (0.2 - 0.5 mL/day) can have the same ultimate result. He had personally lost a huge amount of weight using intermittent fasting / ketogenic/ HIIT training, and heavy resistance training (Showed me his before photos! Wow! He was one of those people who are so fat they waddle… and now he looks ripped!), and he had also reversed his personal clinically proven heart failure; enlargement and multiple leaking valves… [Explained that his basis was that cardiac muscle has very high level of testosterone receptors; when men are young their testosterone levels are high and the heart does well, as the levels drop during aging - and drops are also caused by endurance exercise - then the heart muscle suffers. However, women’s hearts, already accustomed to low levels, don’t suffer in quite the same way].

http://fitness.mercola.com/sites/fitness/archive/2017/05/19/testosterone-therapy-risks.aspx?utm_source=dnl&utm_medium=email&utm_content=art2&utm_campaign=20170519Z3&et_cid=DM143650&et_rid=2011437748

is interesting. It also points out ways of naturally increasing testosterone (all of which should be good for also minimizing insulin resistance and requirements and normalizing blood sugars).

19

I gained 30 pounds in 30 days. But I also was suffering from bulimia. I truly believe that my body had gone into storage mode. Like when you suffer from anorexia and the body doesn’t know when it will get feed again and starts storing calories.
Even though your were eating you might not have been absorbing calories so it’s storing as if it was being deprived. This is just my theory… it took a ling time for my body to turn around and “let go” of the weight. I like to think when it felt safe and knew it could stop storing calories it did and it literally fell off. to the point where people starting asking me if I was sick.
I know this sounds well cheesey but…
Try visualizing you in the body you desire without frustration. Just in the knowing you will get there… what you will wear, how you will feel. All the details of it like you were meditating on it
And continue to do what you know is right eating well and getting your blood sugars as stable as you can. Balance will only help rest the body. Doing restorative yoga will also help that. I’m a full time yoga teacher, I made it my life cause it can transform in so many ways.
Help this helps and I know how real that pain is.

21

Thank you Ali4!I’ve just started PYO, but think I need just yoga a few days, lifting weights, and PYO. My blood sugars are finally stable, but it’s only been two months. I’m eating clean and will be patient as I await for my body to heal and return to a more normal status. Thanks for your input.
LadyJane