I’ve been periodically posting on here about my experiment with Symlin. I decided this morning it is a failed experiment. My main goal for using Symlin was weight loss. I was at a perfect weight for me after my diagnosis (I lost 40 pounds to get there!) and then slowly but surely have gained 10 pounds in the two years I’ve been on insulin. I’m still at an ok weight, but didn’t want to gain anymore, and at my age (62) it’s very hard to lose.
So my experience with Symlin: It took me awhile to figure out dosing and we all seem to be different. What I finally hit on is doing the Symlin about 15 minutes before eating so I could experience the fullness, then doing my insulin an hour after eating. I then did my post-prandial check at the 4 hour mark instead of the usual 2 as that is when my peaks seemed to hit with Symlin. I had been able to cut my breakfast and lunch insulin in half and for dinner I took 60% of what I formerly used. My numbers were also somewhat more stable than before I started Symlin so in that sense my experiment was a success. However that wasn’t my main reason for using Symlin and my numbers weren’t bad before.
I wasn’t losing any weight, just up and down the same two pound variation like before. I thought maybe I needed a higher dose than the 60mcg recommended for Type 1’s so I slowly increased it to 120. My blood sugars became even more stable, but still no weight loss.
I was going to finish what I have on hand (about 2 weeks) but decided not to bother. I was on Symlin for 3/12 months and the 120mcg dose for over a month, so I figured that’s trial enough. If I start to gain again I might freak out and consider starting again…lol but meanwhile I’m going to continue eating the reduced servings I have been and try and reduce a tad more and increase exercise. Oh well, I gave it a try!
Thanks Zoe for the thoughtful update.
I’ve often considered trying Symlin but my numbers have been so stable and I don’t like the idea of injections (in addition to my pump).
I’ve managed to lose 44 pounds (so far!) since mid-February but it’s been pretty drastic. The nice side effect of the weight loss is that my TDD is down from around 36 to 22.
Can I tell you I hate you? I’m only kidding, that’s amazing - congratulations! How have you done that? You’re a lot younger than me for one thing! But I’d still like to know your secrets!
dear Zoe. thanks for your experience and thoughts. Permit me a few commentaries: I’m a T1 and also a Medical doctor.Not endocrinologist, i’m a radiologist and I have both perspectives. As a patient and as a medical doctor. I think you made a wrong choice abandoning Symlin. It is an hormone that exists in the nondiabetics and it has an important role in the sugar metabolism. I’m sure you know that.IT IS NOT A LOOSING WEIGHT HORMONE. It helps control the apetite and post prandials highs. When we became diabetic our Beta cells in the pancreas were destroyed, probably due to autoimune reasons and our ability to produce insulin and amylin went away. The treatment of T1 diabetes consists in given what we can not produce. If we treat our metabolic status with only insulin we have to overcompensate with a non phisiological dose of insulin , so we have to give more insulin than in the nature.AND THAT’S BECAUSE ONE HORMONE IS MISSING- amylin. Amylin has several roles: reduces apetite, reduces the speed of stomach emptying and balances the release of glucose by the liver into the blood.So when you don’t have amylin you have more apetite( you eat more and gain weight), your stomach empties faster and releases glucose into the blood more rapidly(it makes post prandials highs) and your liver releases glusose to the blood(then you have highs needed to be compensated by more insulin and more weight gaining) The objective of using amylin is to have a more phisiological levels of glucose. And using your words My blood sugars became even more stable using a higher dose of symlin. what we must avoid at all cost are the unstable levels that leads to damaging our tissues and terrible complications (eye, kidney, nerves, vessels)
I’m using it and my levels have never been so good. Well, I hope you take a correct choice in managing our defect (Yeah…diabetes is a defect that become a terrible illness when not well compensated). I really like your posts and you are a very inteligent woman. Regards.I’m sending my email.I would like to change some thoughts with you if you are ok with that. regards from Fernando
Hi, Sugardoc and thanks so much for taking the time to share your knowledge. I actually sat down after I read your post and looked at a random sample of my blood sugars for a two month period before I started Symlin. I’ve been tracking my results since I started Symlin. After I built up to the 120mcg dose my post prandial blood sugars were in target (I use below 140 as my target) 64% of the time. I then did the math for the two month period before Symlin and the post prandials were in target …64% of the time! Exactly the same! The reason I said my blood sugars were “even more stable” were because I noticed some meals where it barely rose at all. I suspect this was not true as often before Symlin, but I just haven’t bothered to compare things that closely.
So for me, the amount of time I have post prandial highs has not been effected by the Symlin at all! I know it is not prescribed as a weight loss drug but that was my purpose for taking it and it just didn’t work at all for that. I actually don’t experience the large appetite without Symlin, some people report, not even when I’m low and never overeat. I did cut back my food intake even more with Symlin but I have made a point of not increasing my servings again and have not had any problem with keeping to the smaller servings. For me because I’m a vegetarian I can’t go very low carb (I stay under 100) and I eat a certain amount of fat such as cheese. I am going to go through my recipes and find the lower carb ones, and find substitutes for some of the cheese I eat. Most important I think I need to increase my exercise. I love to walk and just need to do it more often. Even without Symlin I didn’t take that much insulin, usually around 25 units a day. This leads me to think I don’t have insulin resistance to speak of, but I just think for a woman my age losing weight is hard, hard, hard!
Bottom line is that for me what I gain from taking Symlin just isn’t worth buying an extra medication, taking three shots a day (I’m on the pump to get away from shots!) and having to remember to bolus one hour after eating. It’s actually been a relief to stop using it. I’m going on a brief trip tomorrow to the country which always clears my mind and when I return I’ll make a plan to at least maintain my weight and perhaps lose slowly. For me this is the right choice, and I gave it a good try, for other people who either do lose weight with Symlin or have large appetites or problems with post prandial spikes Symlin might be excellent for them! It sounds like Symlin has been helpful for you as it has for some others. Thanks again for your input!
Hi Zoe -
I’m not a physician, but after much research, I have to say I agree with everything Fernando has said. I don’t take Symlin to lose weight. However, as very hyper insulin resistant, I take it to avoid having to overcompensate with more insulin, as Fernando mentions. I also take it to avoid what I refer to as the insulin induced gnawing “false” hunger. Further, I take it to simulate normal metabolic function (since I can no longer produce my own amylin). Finally, I take it so I can eat a very normal and very healthy diet (lower fat, high protein, very complex carbs).
Now, as to losing weight, you and I are close in age. I don’t remember what you are doing for exercise but a sad but true fact is that it is harder to lose and easier to gain as we age - never mind adding diabetes on top of that! The only thing that works for me is exercise and these days, resistance training (weights) does much more for me than aerobics - both in shaping my body and reducing my basal needs. For me, reducing my basal needs has been key to losing weight and maintaining weight - not my bolusing.
I also want to acknowledge that Symlin is not the easiest RX to get used to or to learn - the literature is woefully inadequate. I also want to say that the makers of Symlin have done a disservice by oversimplifying the benefits and promoting primarily the weight loss capabilities of Symlin.
Good luck to you,
Thanks for your response, Cheri. I didn’t mean for my post to negate the value that many people get from Symlin or to discourage newcomers to its use. Our usual Diabetes adage: YMMV really seems to apply with Symlin use. I don’t disagree with what Fernando (or you) are saying, it just wasn’t the case for me. Since my main motivation for taking Symlin was weight loss and it didn’t work for that, I just don’t have any reason to take it anymore. In my case, I’m not insulin resistant (I’m assuming you mean the same thing with “hyper” insulin resistant), and I don’t have any insulin induced hunger. I actually experience very little hunger at all, even when low and since my recovery from my eating disorder is now 17 years, I never overeat, and am very happy with the healthy diet I eat. I do sometimes have to eat more fat than I’d prefer to keep carbs down (I’m a vegetarian and eat way too much of that pesky/delicious cheese!). I’m going to have to work on the balance if I’m ever to lose a gram!
Then there’s the whole exercise thing. Sometimes I wonder if I am the only person on all of TuD who isn’t into exercise! My “excuse” is that it seems to make controlling blood sugar more complex. I’m kidding about that last part…sort of! I’m never going to do aerobics or work out with weights or enter a gym - not in this lifetime anyway. But I do notice a dramatic decrease in blood sugar when I walk and I like doing that, so I plan to do more of it.
Thanks for your input. I agree that Symlin does not provide enough information on dosing, perhaps because it’s so individual? I told that to a staff person at the Symlin support center when I called there. My guess is they are caught in the bind of not appearing to provide “medical” advise. But then they should provide more info to doctors! Btw he made a clear disclaimer that “Symlin is not prescribed for weight loss.”
Absolutely support your choices for yourself! We all have to do what works and what is right for ourselves, no matter what anyone else thinks.
By the way, I do NOT love exercise - LOL - but I do like the results. However, I have to compensate. I eat a small snack just before (usually a Kashi bar, 20g) and I reduce my basal by 50% as I’m walking into the gym. When I’m finished, I wait 1/2 hour or more, then resume my basal. And I always have some food with me in case. AND, as you pointed out, even for this YMMV. I find that to be true for just about every aspect of diabetes management!
Just one parting comment - weights (compared to aerobics) are easy and do not require a gym - check out Strong Women, Strong Bodies - you can do it in your living room, starting with 1 lb weights. You would be amazed. Nothing to do with diabetes - studies are showing more and more that it’s important for anyone and everyone as they age. I do all my exercise - and for that matter my tight control on diabetes - for ONE reason and one reason ONLY - I love my energy and I fight anything that tries to zap it.
I am soooo never going to lift weights, Cheri…lol But I do understand what you mean about loving energy. I like to walk, and walk everywhere in the city as that is my main form of transportation.