Sweet Pee or other GLP-1s for weight loss in Type 1

#1

Hi gang, I continue to be frustrated by weight gain - now averaging a pound or two every year for the last ten years since my diagnosis. It adds up. No matter what I do, I can't lose weight (I spin, do weights, count calories, stay low carb, etc.), nothing budges. Do any of you know anything about the use of some of the GLP-1 inhibitors or the "sweet pee" pill from JnJ that makes you basically urinate out the extra sugars instead of having it return to your blood stream from the kidneys? I've heard both result in weight loss in type 1s. I'm looking for some extra help.

The continued weight gain makes me feel helpless. My husband and I own a gym...I feel like I'm not living what we preach and hate feeling so out of control on something I've always been able to control well with a good balanced diet and exercise. I don't have a scale at home, I'm not obsessed but could really use some advice from people who have had success or are trying something new...

Thanks!
Rachel

Keto enthusiasts -- Are you at greater risk of going into DKA without warning?
#2

Rachel - Sorry I do not have experience with either but am anxious to hear responses as I am right there with you sister! Avid exerciser, clean eater, macro counter... can't lose a pound to save a life. In addition to T1 I also have PCOS which adds to the issue.

I've implemented two changes this past month that I'm getting some traction with. 1.) I drink 1 Gallon of water (128 oz.) every day, no excuses. 2.)I switched my daily exercise routine from majority cardio to majority heavy weights (1- 1 1/2 hrs. daily) plus light cardio (1 hour 5x/wk). I've found this keeps my blood sugar more stable and prevents any crazy highs or lows that are so often associated with working out. I've been doing this for a month now and though I haven't seen any shift on the scale, I am down 9 inches (3 from my waist!)

Have you had metabolic testing done before? I'm here if you ever want to talk more!

-Katie

#3

Hi Katie, I would love to lose 3 inches from my waist! I almost don’t care about the scale anymore (not totally true), but I would like my body back. I have not done metabolic testing. What have you done or what do you suggest?

#4

I went to a sports medicine doctor when I was living in Minneapolis and had a test done from RJL Systems.... they hook you up to all sorts of things. Essentially, it gives your exact weight breakdown in percentages by fat-free mass, lean dry mass, intra and extra cellular water, etc. It also provides a more specific basal metabolic rate and daily energy expenditure rate than the web calculators out there do. I found that mine was actually 200-300 calories lower than what the online tools were telling me.

I'm looking to have it done again soon to see if my body fat percentage has shifted, but have yet to find a doc in Seattle who does it (my insurance covered 100% back in MPLS).

#5

Hi RAchel,
Your story is so similary to mine - diagnosed almost 5 years ago as a t1 after misdiagnosed as t2. i lost a bunch a weight while considered a t2 and NOT on insulin; lost 90 pounds, but BG's still kept going up. that's when dx t1. gained almost 20 pounds since being on insulin - so frustrating considering how hard i worked to get those 90 off!
i do have some experience with INVOKANA - i have been on it for 2 weeks now. i'm still on the lower dosage, but so far, no weight loss. however, my BG's and total daily insulin has decreased by about 30%!!! i'm hoping that once i go up in dosage i will see some weight loss. i'm not peeing as much as i think i should in order to lose weight; but i'm drinking a ton of water! like you, i work out every day - spin, weights, cardio - spending 2-3 hours a day at the gym and nothing changes - so frustrating!

#6

Gayle have you had any of the side effects? (yeast infection primarily)...

#7

yep, got a yeast infection after a week, yuck! but joined the Invokana Group on FB and learned a lot of tips so hopefully wont get another one. taking Azo Yeast daily now and planning on getting a cranberry extract supplement to avoid any kidney/bladder infections. but the one thing i would stress is that i would not even consider trying Invokana unless i was on both a pump and CGM. it's like starting over again, not knowing how much insulin to give and having to turn my pump down. i'm now bolusing 50% of what i normally give myself for my protein bar in the morning before going to the gym, then turning down my pump by 60-80% for any high cardio like spin. it's crazy seeing the difference, but i only know this and can "micro-manage" this with the pump and cgm

#8

Great input Gayle! I’m excited to hear that other T1s are trying it. I can imagine it would be a lot to manage, suddenly needing so much less insulin…I just ordered my Medtronic enlite with CGM and pump suspend features. Hopefully that will add a layer of protection. I would LOVE to cut down on the amount of insulin I have to take.

Thanks again, Gayle! Will you keep us posted on how it goes and how the higher dose affects you (sugars, insulin demand and weight)?

Good luck!

#9

yes, i will absolutely! this will definitely be an "experiment" of sorts to see whether or not the reduced daily insulin requirement will actually make a difference in being able to take the weight off!

#10

Do either of you take Metformin in addition to insulin? I have been on it for two years now and it initially reduced my insulin requirements by about 30%... no side effects to report. (That said... here I am still waiting for the weight loss I feel is owed to me!)

#11

i've been on metformin since originally misdiagnosed T2. just stayed on it to try to help with BG's and weight, but probably no need to take it anymore

#12

I asked my endo if I could try it after she said she thought I might be developing some insulin resistance. She said no, and to just add more insulin. (Thumbs down!)

I’ve been working on better control, but feel like all I do is dump in more insulin and gain more weight. (Second thumbs down!).

I will re-ask her about metformin and Invokana. Originally she said no to the latter because it had only just been approved. I told her I would wait a year with her so she could get confidence in post marketing use and side effects in the general population. Now she’s going on maternity leave until December and I’m sure her NP won’t be so daring as to prescribe for me. I’m going to have to wait until then. Ugh.

I’m interested to see how it goes with Gayle. Fingers crossed!!

#13

Hey Gayle, how's it going with Invokana? I went to a research center the other day to be screen for using Invokana in a clinical trial. I'm curious to know about your experience on it -
Thanks!
Rachel

#14

it's going well. only problem was the yeast infection my very first week. take an AZO yeast pill everyday now and haven't had one since! been on it now for about 6 weeks. went up to 300 mg about 2 weeks ago. didn't notice much difference when i went up in either bg's or symptoms. but very glad i'm on it - my total insulin for the day is about 30% less, and depending on what i'm eating i can bolus as much as 50% less than i did before being on it. lost maybe 3-4 pounds. don't know if that will continue as i stay on it longer, i hope so!

was the clinical trial for t1's? that's very encouraging to hear!

let me know if you have any other questions or if you end up going on it. i would definitely recommend that you be on pump and cgm to "micro-manage" your t1 while on this; at least until you know how it's going to affect you and where your "new" normal is.

#15

Katie,
Do you find yourself taking larger amounts of insulin from having PCOS as well, or is the insuln resistance not that bad for you?? I have PCOS and Type 1 and it is so difficult for me! I am so happy to find someone else with similar conditions to talk to!!

#16

Hi diabeticdoll - Totally, it's exactly why I take Metformin! With a reduced carbohydrate diet AND Metformin AND daily rigourous exercise I still take in an average of 37 units of insulin a day. Having PCOS & T1 can be a lesson in frustration for sure. What do you use to manage yours currently?

#17

Hi Gayle, I just wanted to see how it was going! I think I got either low dose or placebo, I was able to reduce my insulin for a while, but I’m back up to my baseline now and honestly don’t think it’s doing anything for me. I lost two pounds but have gained them back. I’m going to ask my doc for the real deal when the trial is over (another few months). I’m excited they are studying it in Type 1s. The trial doctor is pretty sure they’ve got someone on the high dose, she’s had pretty big and lasting benefits…How do you like the 300mg dose? Have you seen any continued improvements in your numbers? Hope all is well! - Rachel

#18

Hi,
Wish i could say i've had great results, but not the case. I've been on it for 3 months now. just had my a1c tested, no change! i was really expecting some better results! my spikes were no longer happening but i think i lowered my basal too much and i'm staying too high on a regular basis. i mean that my spikes in the 300's are really much better, but i'll stay in the 150-180 range for most of the day. so even though i'm not having such a huge roller coaster, i lowered my basal too much to counteract the invokana for fear of having too many lows. i'm going to give it 3 more months until my next a1c and if no change for the better, i'm going to get off of it. only about a 3-4 pound weight loss too, so no benefit there either!

#19

Hey Ladies!

Any updates? I have just started on Invokana 100 mg two days ago. I was hoping it would help level out my sugars, lower my insulin needs, and possible weight loss. I have slowly gained about 10 pounds in the last year and with it I keep needing more and more insulin.

Thanks!
Jessica

#20

I'm a T1 working on my 3rd year. I've had 3 children and my last child was my first diabetic pregnancy. Before I had my last child, my A1C was at 6 and my BG levels were fantastic. After the pregnancy and since then, my A1C is high and BG's are a roller coaster. I also need to lose weight. I workout 3-4 days week weightlifting with some cardio and have been able to lose 10lbs on my own with very hard work. Even with all the exercise and diet work, my BG's are still not desirable, nor is my A1C. My Endo suggested Farxiga but after research, I would like to try Invokana. I'm going to start it tomorrow.
I am on a pump- Minimed pump with Enlite CGM. Reading the testimonials has been very helpful. I mainly need Invokana for stabilized BG levels and weight loss.