Ok, I’m officially frustrated. I started taking Symlin on 5/18. My main purpose in taking it is that I’ve gained 10 pounds despite not overeating, and want to at least stop the gain, and hopefully lose the 10 pounds. It took quite awhile to figure out how to change my insulin dosing since we are all different and there isn’t a lot of info out there. But I did it. I have changed my I:C ratios on my pump now and for breakfast and lunch I’m taking 50% of the insulin I used to take and for dinner around 60%. Sometimes I need a bit more. I’m in target range at the 4 hour mark (my new testing time) more often than not. I take the Symlin 20 minutes before eating and it really makes me full and I am consistently eating a significantly reduced amount.
So…less insulin…less food…and I haven’t lost a pound!! I go back and forth up and down the same three pounds (normal fluctuation). I’m no longer gaining at least. But why haven’t I lost any?
Possible reasons: It takes longer to start to have weight loss effect. (especially in middle aged people who don’t lose weight easily). I also read somewhere that “people who need to lose weight lose it and people who don’t, don’t”. Hmmm. I was at the low edge of the healthy weight range for my height, and now I would say I’m at the high edge, so I’m not technically overweight. But that doesn’t make any sense to me!
Have others of you lost weight? Failed to do so despite successful dosing with Symlin? Any clues? (Before anyone suggests it, I do take thyroid replacement meds and just got my thyroid tested and it’s in range).
Help!!
Thanks for responding, Bella! I’ve actually decided to try upping my Symlin dose. The guy who posted the blog on using Symlin suggested that type 1’s don’t have to necessarily limit themselves to 60mcg. Since I am a 62 year old woman and seem to have more difficulty using weight, I think there is a possibility I need more. I’ve started at 75mcg today and will let people know how it goes! Thanks again, this is a very quiet group!
Will do, Bella. I finally got a hold of a guy at the Symlin Support Group - I’ve been trying to contact them for awhile. He said it was fine to increase my dose and that it might make a difference. He confirmed that there was no logic to what I’d heard that “people with a significant weight to lose will lose it and others won’t”. (I’ve forgotten where I read that, but I didn’t think it made much sense) I’m not ready to give up yet. I’m up to 90mcg and we’ll see how it goes!
Sorry it has taken me so long to reply… busy at work… anyway I’ve lost 5 lbs so far and seem to be stuck… I am up to 45 mcg/s, take the symlin wait 1/2 hour and then take 80% of my normal insulin bolus. Did upping the dosage work for you?? The weight loss I can contribute to eating less… from the symlin
Thanks, Bella. I’m jealous of the 5 pounds and you’re not even up to full dose! I still didn’t see any loss when I went up from 60 to 75. I’m now up to 90, but it has only been two days. I only weigh myself every 3 days (so I don’t make myself crazy). We’ll see. I’m definitely eating less, and taking less insulin (50% for breakfast and lunch, 60% for dinner). I don’t think I have any Insulin Resistance but do think I have trouble losing weight due to age. (I’m 62). Can I ask how old you are?
I’m going to keep increasing up to 120 and if I still don’t start losing weight I may give up. But not yet. It can’t work for everyone else but me; that would be TOO unfair!
Hmmm do you have any thyroid problems? It doesn’t make any sense that you haven’t lost weight… maybe age is a factor?? I"m 45… too bad there aren’t more people on symllin who can chime in…I’d say just hang in there a little longer
Thanks, Bella. I take thyroid replacement meds and was tested recently as I wondered about that, and I’m in range. Yes, I do think age is a factor, it has gotten progressively harder to lose weight since I was in my 40s, so if you need to do it, do it now!
Yes, there isn’t much info out there so let’s keep track of each other’s progress!
How is the weight loss going? I have been taking 60 in the pen and I too want to increase it to 120. I am not losing weight either. I only have 2 settings on my pen 60 & 120 so I can’t gradually increase it. Have you been having success by increasing it?
Hi, Kathleen. Sounds like you got the larger dose pen. There is one that’s called Symlin60 that’s meant for type 1’s and it has doses of 15, 30, 45 and 60 so you can add them together.
Hard to say yet about the results. I weigh myself every 3 days only so I don’t drive myself crazy. I only started the 90 mcg on 7/9 and have lost .8 of a pound but I tend to go up and down by 3 so it doesn’t mean anything yet. I am having more in target blood sugars so that’s good too. I’m going to give it another week or so at 90 to see how it goes before I consider going up to 105 (60 + 45). I’ll let you know!
I can’t tell from your pic how old you are, but I think you are quite a bit younger than me, but also have been diagnosed a lot longer. Is there some chance you have developed some insulin resistance? Perhaps that’s why your doctor gave you the higher dose pen?
Hi Zoe,
I think that you are right, I do have the larger dose pen. I am nervous about bumping it up though even though the MD did write the RX for the 120 if I wanted it… I don’t think that I have any insulin resistance thank goodness. I am a bigger gal…maybe that is why.
I used symlin for about a year and lost some weight but then I stopped but I need to lose more so I started again. Its those last 20 that are the most difficult they say.
I am 41 years old and have diabetes since I was 11. I was taking MDI but now I am on the omnipod and I love it. This is the first pump that I have had.
I am still figuring out how much insulin I have to decrease when I eat carbs. I need to start taking my insulin after I eat because I am not very hungry when I take the symlin.
At what time do you take your symlin? And when do you take your fast acting insulin? I am so afraid that my bs will raise too much if I take the fast acting after dinner but if I take it before I just dont know how many carbs I will be eating.
It is nice to talk with someone who is taking smylin.
Yes, it is nice to talk to someone with experience with Symlin, because there aren’t many of us! You took it for a whole year, I figured you would be our resident expert!
For me, I take the Symlin 15-20 minutes before I eat. All the literature says not to do that, but I quickly learned that I rarely went low and that if I took it right before eating I didn’t have time to experience that feeling of fullness that makes me eat less. The insulin took me a lot longer of trial and error to figure out. I take 50% of what I took before for breakfast and lunch and 60% for dinner. I have changed my I:C ratios in my pump now. Occasionally if I’m high or if it is a high fat/high carb meal I take a bit more for dinner. I take it one hour after eating. But the piece that really took me awhile to figure out is that I had to raise my basal a bit for the periods of time 3-5 hours after my meals (when the food hits on Symlin). Without that I was still spiking at around 4 hours too much of the time.
I’ve found that my blood sugar doesn’t really start to rise with the Symlin until an hour, and if I took the insulin sooner then I would still spike 4 hours out when the insulin was gone. I don’t worry so much about how many carbs I’m eating because I’ve pretty much adjusted my food amounts for my new lower appetite but since I don’t do the insulin until one hour I can adjust it if I really misjudge.
As for bumping it from 60 straight to 120, that is how it’s prescribed, but I would just test and keep a close watch on it for the first few days. I’m doing it gradually not so much for caution as because I don’t want to raise my dose any higher than necessary. But I seem to have very little problems with lows from Symlin and we do all seem so different when it comes to how we take this stuff! I don’t think I have any insulin resistance to speak of either, but for me I just think it’s my age - I’m 62 and it just gets really hard to lose weight at my age, though it started in my 40s.
Oh no resident expert here. I honestly have forgotten all that I knew and all my schedules. Maybe my body has changed but what I thought worked for me before doesn’t anymore.
I too take my symlin 15 minutes before I eat and that starts to make me full. If I take it any earlier I can’t eat at all. I think that I am going to take my Novolog as soon as I am done eating and I can figure out how many carbs that I have eaten. I take 50% of the Novolog when I take the symlin at each meal. I only have lows if I don’t eat enough carbs for the Novolog I took right before eating.
I am nervous about changing my basal rate. I have 1 for the day and one for the night and I keep it like that always. I know some people change it on the weekends or such but I don’t. I have only been on the pump for 6 months and haven’t experimented much.
I understand about losing weight. With the symlin it is easier than it was but I go to the gym 6 days a week. They say it is more difficult when you get older and I find that to be true too. But then, I have never really tried to lose weight on my own. I have only been successful in gaining weight.
It is 9pm here in Daytona Beach, FL. Time to walk the dog and get ready for bed. Enjoy the rest of your night and I look forward to talking with you again!
Next week I will probably bump it to 120 and test often.
Thanks, Kathleen. Have a good weekend and let me know how it goes. I’ll do the same. Tomorrow is my monthly Type 1 Women’s Group which I LOVE. I was hoping to have a good report about Symlin and weight loss, but I’m going to have to be patient.
Yep, I’m more successful at gaining weight too. I didn’t really believe insulin caused weight gain, but I never overeat, eat moderate/low carb, haven’t eaten sugar for 16 years, and even though I only gained 10 pounds it pisses me off! LOL.
I’ve been taking 120 of symlin since last October and haven’t lost any weight. Initially my i:c ratio was greatly reduced and now I am back to 1:12 (was 1:16) it’s very frustrating. My bs aren’t ALWAYS great after I eat but I find that they do come down nicely now. Maybe I’m still having basal issues…hmmm…
Anyway, just thought I’d let you know I can totally relate to your frustration with weight loss. I wasn’t looking for dramatic results just to get rid of these 7 lbs that have crept up on me despite not eating differently.
Thanks for taking away my last shred of hope, tonilynn20! (I’m kidding!). I definitely understand your frustration, and you don’t even have age to blame like I do! Question: Do you take your Symlin ahead of time? I take mine 15-20 minutes ahead despite instructions to wait, because then I really feel the fullness (not that that has helped me lose weight! )Your story sounds almost identical to mine. Despite not eating differently, and eating moderate low carb, I gained 10 pounds. I’m not overweight but would like to return to where I was and definitely stop any more gain. I’m still at 105 mcg and working up to 120.
Just out of curiousity, why do you keep taking the Symlin? For the better blood sugars?
That is interesting that you have reduced insulin and reduced food intake and haven’t seen any weight loss. I’m a Type 1 (diagnosed when I was 13 - now 30) and I started on Symlin one year ago - after about 3 days I was up to the 120 dose. I’m insulin resistant and apparently a bit Symlin resistant too…lol. I will say I did see some weight loss (Iike you, I’ve never been overweight - just at the top end of normal) over time. I was initially expecting some drastic weight loss, increase in insulin sensitivity, etc, but noticed instead very subtle changes over time. I take 120 3times a day, and keep taking it not so much to keep my weight down (my comfortable holding weight is down by about 5-7 lbs from when I started), but because, for me, it provided much needed mental relief from being “hungry” even when I was physically full, constantly thinking about food, etc. It’s like a switch flipped in my brain that said “ok, you’re satisfied, you can stop eating”!!! It was like some part of my brain that had been clenched for 15 years finally was able to let go and relax. So, I understand the frustration with not seeing dramatic or at least more immdiate results, but I think it is worth sticking to for a while and see what kind of subtle changes come about over time.
Thanks so much for your reply and sharing your own experience with Symlin, Katrina. Yes, I do find it puzzling that I haven’t lost any weight at all. I’m not insulin resistant as far as I can see (my TDD is around 20-25). I don’t know the mechanism, but I can’t help but think it’s related to my age. I just started 120mcg yesterday and already can see more stability in my numbers. My main purpose for taking it isn’t numbers but weight loss, but I’ll have to decide if I stick with it if I don’t lose, maybe just to keep from gaining which I seem to do all too easily. You didn’t say if the insulin has helped your resistance or not, but I hope it has. Fear of developing insulin resistance helps me keep my carbs down!
Oh, I absolutely understand about the emotional aspects of food. I have 16 years recovery from an eating disorder, and the relief from obsessing about food is immense, and ironically allows me to really enjoy the food I eat! It took me a lifetime to get “eat when you’re hungry and stop when you’re full”!
Hey Katrina, I just saw your post and sent you a friend request but forgot to include a message. Let me know if you’re interested in joining our Type 1 Support Group that takes place in Berkeley once a month. It’s an amazing group!
