So I stepped on the scale today when I went to see my NP for some pump tuning and prescription modifications and was shocked. I had noticed my clothes getting looser and some other visible signs, but I did not expect such a dramatic drop since my last visit approximately one month ago. Four weeks after starting Symlin, I had lost about 12 pounds. I had my body fat checked at the gym this evening and the great majority of that weight loss (24.2 lbs) was fat. My NP and Endo both say this is normal and that I haven’t even plateaued yet with my weight loss!
Prior to taking Symlin, I was having a very hard time losing fat once I got to a certain size. My body simply would add muscle in response to exercise, increasing my weight but decreasing my body fat percentage.
I suspected a reduction in insulin would more than likely break this barrier but I prefer a balanced diet over one that is “zero carb”. I did not realize just how much of a difference it would make. My basal rates are the same as before, but my meal boluses clock in at approximately 30% of what I would need without Symlin.
That said, the effect on my appetite is also profound and cannot be discounted. I eat a lot less than before and get full very fast, sometimes to my disappointment because the food is so good. Symlin is a synthetic form of amylin, which islet cells produce along with insulin and glucagon. Without it, you have a much harder time feeling full when you otherwise normally would- and should. Amylin also tells your liver to stop dumping sugar into your blood when you eat and do not need it. And of course, the oft-mentioned effect on the stomach, slowing down digestion and eliminating the post-prandial spikes.
I didn’t realize it until I read the literature, but Symlin is the only other drug besides insulin approved to treat Type 1 diabetes specifically. Has anyone else tried Symlin and had a similar or different experience with it?
I tried it about four years ago and couldn’t get over the nausea - even when staging it and working up to larger doses. I was also having a hard time dealing with the thought of injecting the symlin just because it felt like being “back” on injections after years of pumping. I don’t think I could get over that hurdle of having the extra injection. I look back now and often think I should try it again. It’s something that our body naturally produces and we type 1s need it back…but ugh. I’ve heard some people pump their symlin in an extra pump, but I’m not up for that either.
I’m really glad that it’s working so well for you, oneless. Makes me want to give it another go!
I’ve been on Symlin for about 4 months(?) and I love it. It’s helped a LOT with post-prandial high glucoses. However, it hasn’t had any effect on my weight. Congratulations on your weight loss though. I love Symlin even without that added bonus, so it must be wonderful for you.
My insulin requirements are not much less for whatever reason - I take about the same amount of insulin, just over a slower period of time. And I definitely understand what you mean about eating less with Symlin, because it does make me feel very full right away. I do notice myself eating less at meals because of it, so I keep hoping to see some weight loss. However, I fear that I might be making up for that by snacking more between meals or something. Not sure.
Regardless, congratulations on your great weight loss. I have not seen any myself, but love the Symlin for the effect that it has on my post-meal glucose levels.
What dose are you on Carolyn? I am using 120mcg before eating. I realize the literature tells Type 1 diabetics to go up to 60, but my Endo and NP both recommended I work up to 120mcg for best results.
I still get minor nausea sometimes, often depending on how much I eat. If I don’t eat too much it is more or less non-existent, but if I press on through the Symlin telling me to stop eating, then it certainly is an annoyance for 20 minutes or so.
I’m using 60mcg. My doctor said that if I started to lose effect, that she might recommend I go up to 90, but 60 has been working well for me so far - at least for controlling post-prandial glucose levels.
I used to be on Symlin about 2 years ago… wonderful… I lost about 15 pounds, but was never on it constantly because it got to be so complicated to eat, that I just stopped eating which really started to make me feel crappy and then I stopped taking my fast-acting insulin if I did eat… Too many injections, it was like oh okay ready to eat? not me, I gotta check my sugar, figure out what I will actually be eating since it was almost 1/2 of whatever I prepared for myself (because you get so full so fast) and then take the Symlin and then finally take the insulin. Then I’d dig into my now (cold) meal and all of a sudden I was full and nauseated and most of the time, I’d throw up after every meal I ate when taking Symlin. I actually experienced a bunch of lows, especially during the nights so my a1c levels were down… I’m really excited because it’s now in a pen form! good bye vials and syringes!!! I’m trying to get more of my life sorted out before I start it up again, because I love feeling full (which I never do without it) and I love that I was able to finally lose weight… and I had so many fewer highs…
Congratulations too! It always feels good when you have accomplished something
That’s true. My little baby 60mcg injections burn pretty badly. I can’t imagine doing twice that much. I wish there were a pen that made it easy to do a 90mcg dose. Not sure how to do that easily… Maybe use the 60mcg pen and take 60mcg, then re-dial and inject 30mcg more while the needle is still in you? Or just do 2 shots?
Yeah, you know, I did use two shots to titrate the dose up from 60mcg to 120mcg. I wasn’t sure if I could redial and inject with the needle still in me. I tried a few times and a couple of times I screwed up and jabbed myself harder or pulled the needle out partially and injected too close to the top layer of skin (and that hurt so bad I think I made up my own swear words).
The two-shot thing motivated me to get to 120mcg as soon as I could so I could use the 120mcg pen. It took me 48 hours per 15mcg increment to get over the nausea. I suppose you could also get a bottle with syringes but for some reason I considered that less convenient than taking two shots from a pen.
Congradulations on your success on Symlin. I didn’t need to loose any weight and it took my doctor a year to decide to let me give it a try. I did initially loose about six pounds but have worked really hard to gain mostof that back. I just really felt that if we are missing a hormone (they work in balance with each other) that we should take that too. I wasn’t too keen on taking shots since being a pumper but it is so worth it. I no longer have the post prandial BG spikes and it may even help me control the spike after strenous exercise. I never had any nausea or other symptoms so I think my body was just thankful to have the missing hormone again. I have always been so disciplined in my eating that I don’t see much change there and I almost never overeat so I don’t feel overful either.
Thanks, that’s good to know. I agree that 2 shots from a pen is probably easier than syringes and a vial. I think I’m going to stay on the 60 mcg dose for a few more months (if I can still get the glucose-lowering benefit) and then try what you are doing. My doctor also recommended eventually going to a higher dose, so I think it’s definitely in my future and 120 does sound a lot easier than 90 just b/c of the way the pens are set up. Thanks again for the info.
Reduction in insulin dosage actually has long-term benefits; the historical idea within the endocrinology profession is that glycemic control is the only medical objective, but more recent research does suggest that minimization of insulin dosages does in fact have long-term clinical benefits by itself, so that’s definitely a good thing. From what I’ve seen, if you don’t have large problems with the nausea in using Symlin, then its definitely worth continuing, but I have seen mixed thoughts on dosage titration – meaning that the maximum dosage is not necessarily what the label prescription mandates. According to one of the most experienced endocrinologists using Symlin, Dr. Steven Edelman, assistant professor of medicine at the University of California San Diego School of Medicine, “I always tell my patients that the ‘perfect’ dose of Symlin is the dose that induces satiety but does not cause nausea.” In his experience, the nausea is not really as big an issue in type 2s - most likely because most type 2s are still producing some amylin and so the “return” of the hormone to their system isn’t so jarring. But in type 1s, the nausea can be acute, and Dr. Edelman follows the recommended titration schedule to reduce it. That may be different from what the manufacturer recommends. That does sound like good advice.
I’ve been on Symlin for nine months now and I have had lots of success with it. I’ve lost quite a bit of weight and my eating habits are what they were prior to becoming diabetic. Since I was diagnosed 3 years ago at the age of 23, I know what my adult appetite was like pre-diabetes. My A1C is pretty good at 6.6 and my blood sugars have been more regular. Less ups and downs and ups and downs. My insulin was cut by 1/3 and it’s amazing that my numbers are better on that much less insulin. I’ve been recommending it to lots of my diabetic friends too. Good for you and all the hard work!
Carolyn,
I’m so relieved to read your post. I’ve been on symlin since september and initially my i:c ratio went from 1:10 to 1:16 however, now I am back to my original i:c ratios even on symlin. It’s a little frustrating since I’d like to use less insulin but my pp are much better.
My Endo gave me samples of Symlin last time I saw him (Feb). They are still sitting in my fridge cause they scare me. I’m afraid of going low and not being able to treat is. And there was something about not taking Symlin if your carbs will be less than 30. Is any of this worth worrying about?
yes, you have to have at least 30 gr. of carbs in the meal to take symlin, therefore, i only take it once per day as that is the only time my carbs get to 30 or above. I haven’t had any untreatable lows, and my after dinner glucose spike is minimal compared to before. so far, I like it…I’ve had no nausea at all.
