Hi! I just started symlin today, after just learning about it on Monday. I am not too confident and/or comfortable with my endo and the info she gave me regarding the start, but I am so thankful to have found this site so I can read some questions and answers and feel a little more comfortable getting started.
I have been type 1 for 37.5 years and have been struggling with glucose control forever it seems. My doc has me taking just 15 mcg to start, prior to each meal, with an increase to 30 mcg in two weeks. And then on up as the weekd progress. I have had just a tiny feeling of nausea I think, or am I imagining that? My sugar did drop down to 65 about 3 hours after my initial dose, and I wasn’t quite sure what to do. I treated the low, and then when I was ready to eat lunch, about 20 minutes later, I took my second dose and then bolused accordingly. My doc has me bolusing at 100% for now until we see some results. She did also change my bolus and basal rates, so I am not sure what is affecting me and to what degree. I am so hopeful that my levels change for the better.
Symlin is a very tricky but very beneficial treatment - you will get very frustrated, because everything you currently expect from how your insulin will work and what your carb-to-insulin ratios will change. I gave up several times, but I made a commitment to get used to it and it has HUGE advantages once I got ‘stabilized’ - which to me means PREDICTABILITY.
Here is a short list of advantages - Symlin will make your insulin MUCH more effective - you will, when fully dosing, use MUCH less insulin to control your blood levels - and since insulin is the main cause of weight gain in ALL diabetics, you will begin to loose weight without much effort. Also, at least for me, I finally now truly feel full after a meal - I had not felt that way in the last 35 (+/- years since I was diagnosed as a Type-1. I actually do not now finish EVERYTHING on my plate now, so I have had to modify my habit from bolusing BEFORE eating to bolusing AFTER I eat to be able to only bolus what I actually ate - not what was presented to me to eat (I hope this makes sense - it is important).
Although it is a LOT of work, and often times confusing and dangerous (for me, many more hypoglycemic episodes as I tried to learn and predict how ‘well’ it would work - it is different with different foods) to keep in mind the compelling reason I subjected myself to this process on a ‘theoretical’ basis - - - the pancreas secretes MORE hormones than just INSULIN - in a healthy pancreas, a SYMLIN-like hormone is also released and helps ‘balance’ a healthy person’s BG level naturally - the more we can more closely emulate a healthy person’s hormonal balance, the healthy we will be… that is what I believe.
My final insight - and many will not want to consider this as an option because it is “OFF-LABEL”, but I have started mixing Symlin with my insulin and pumping both through my pump. It is also a little tricky, but has many advantages - - - I do not have to give my self shots at meals, I more closely emulate how a healthy pancreas works, and my overall insulin efficiency has lowered my overall daily insulin use substantially - - so I am loosing weight with little effort. I was not ‘overweight’ but I was 15 - 20 pounds over my ‘ideal’ target. This method has returned me to my thinner, more active and younger feeling self and I highly recommend it to those willing to experiment with the process. (FYI - I mix 1 part Symlin with 10 parts Humalog as my ratios, but I have heard of widely different mixtures - this is something that again proves that EACH of us has to find what works for us on a personalized basis, not doctor will be able to tell what to do, they have no idea how any mixture will effect us a an individual basis).
Hope I did not scare you away from Symlin, but if you are committed, it will improve your life - I promise.
Gary, thanks so much for your thoughtful and informative insight! I too am hoping to cash in on that predictability factor. That’s the hugest thing I have struggled with in my adulthood, being so frustrated that no matter what I do, it’s so hard to predict what will happen (and have the outcome the way I had predicted!) I realize that it will take some time to figure this all out and get used to how the symlin affects my blood sugars, and when it will hit me, and when I will then need to bolus, and how much, and on and on and on! I fear hypoglycemia, so I am a little more fearful here as my doses will increase, and my insulin needs will decrease, but I won’t know that until my blood sugars are too low for comfort. My sugar did drop again today, but i don’t know if it’s the fact that I am not eating as much, did I overbolus, or is the symlin affecting me already? I kind of doubt that, right? i JUST started yesterday and I am only giving 15 mcg. I am not scared of trying this, as I read and learn more, I just wish I felt more confident with my doctor. Thanks again for your insight! Good luck with the mixing too!
Starting at 15 mcg should only have a very slight effect on your BG levels, but will all ow your body to get accustom to how Symlin feels and what it will do in small ways - - - I assume you are on a CGM and carry plenty of glucose taps or candy to make adjustments to lows as only a precautionary tactic. If you stick to it, Symlin should help a lot on control - but do get a good Diabetic Educator that has had experience couching Symlin use, they are in short supply, put I am confident you can find one.
Small point to all Symlin users, doesn’t drive you crazy that this drug is dispensed in “micrograms” (mcg) increments rather than in doses we are used to and understand (like ‘units’). Now that I am starting to mix Insulin and Symlin, I am not as confused by the inconsistencies of dosing - but IF EVER THE FDA SHOULD BE USEFUL, THIS IS IT. Simplicity and Consistency of drug dosing should be mandated by the Agency that is suppose to be protecting us, not making higher BARRIERS OF ENTRY to the understanding of the drug regiment. This may seem like a small item, but one that should be addressed by ever Symlin user - there is no logical reason that Symlin should not be delivered in language and dosing practices that are in our ‘natural’ language of “Units” or “Milliliters”. I find it confusing and confusion in the delivery of such a powerful drug is by nature dangerous.
Keep us updated on your progress and reach out to us for help - we all want you to succeed!
Can you explain more about your off label use? How long have you been doing it and how did you implement it? Did you reduce your basal?
I have tried symlin here and there but got so tired of 'shooting up" again. The lows didnt happen so much when I started taking bolus and symlin immediately post meal, usually 15mcg symlin and 3-4 units insulin per meal. How much is 15mcg compared to 1 unit???
Well, i have been on symlin now for 5 days, and I do feel changes already. i felt nausea the first day, but nothing since then. My blood sugars are lower than they had been, but it may be due to the fact that my endo had increased my basal rates prior to this symlin start, in addition to my correction factor and bolus to carb ratio. I also am counting carbs and really taking a closer look at what I am ingesting, so the fact that I am not just guesstimating how many carbs i am going to eat may have the effect as well. I have had a few lows within the past few days. I can’t stand treating a low, because there is nothing that I really like so much that will bring me up, but I have been drinking regular soda to bring my levels back up, I am contacting my endo tomorow to hopefully titrate up to 30 mcg and decrease my boluses and/or basal rates. I have experienced a high here and there, but then go back down within the third hour or so. I don’t feel hungry as I had before, but am not sure if this is psychological or not. Either way, it’s helpful!
I am on a CGMS, and I am constantly looking at that to see the trends in my blood sugars. I find comfort in that monitor! I can’t stand glucose tabs…what do you guys carry with you to treat lows?
I have an appointment with my cde at the end of April, and I am calling tomorrow to see if she has experience with symlin patients. i sure hope so because I would hate to start all over again with someone new, but i will if I have to.
Well, now I am up to 30 mcg. I started last night. I did have nausea afterwards last night, and some today too. I gave 30 this morning for breakfast and then ate regular oatmeal (not the high fiber kind, which I do prefer), and my sugars did rise and then drop down to 76 for lunch time. I didn’t give my symlin at lunch because I was low…the right thing to do??? I ate and bolused accordingly, but went high and when I corrected for my 209 blood sugar at 3:20 p.m. i then dropped down to 31 within 2 hours!!! I felt it ocme on super quickly and it scared me. I broke out in sweats, felt the dizziness and faint feeling, etc. Drank a soda right away and ate some pretzels, and then about a half hour later gave my symlin, bolused and ate dinner. I could hardly get through dinner after having too much to eat to correct my low. I felt so nauseous and tired from the major swings. We will see how tomorrow goes! Hopefully I can get back on track!
I am new to this group and not sure how these replies work. I just started symlin three days ago and am trying to get all the information I can. I am type 1 about 35 years and on pump and CGMS. My HbA1c is 6.6 and I can’t believe I can’t get it lower with the CGMS etc. The fact is there are peaks when you open your mouth and eat something. It akes even the fast insulin two hours to work. I use Novolog. I have gotten into the habit of bolusing every time my alert says I am going high (above 140) and that has led to some lows because often it is just tme for the IOB to act. I am not overweight but have noticed a few pounds I can’t get off and I am always hungry.
I had to plead with my doctor for a prescription to symlin because he said Ï am in good control and not overweight etc". I promised him I knew what I was doing. Of course I don’t. Anyway I started Wednesday at the 15 mcg level for dinner. Then added lunch. I have not had any lows but I cut the insulin in half just to be sure. I don’t see the peaks in the 2-3 hours after eating but now it seems to go high about 4 hours later, maybe because of less insulin or slower digestion. I was prepared to feel really nauseated but it is not so bad. I am not hungry, that is for sure. I have also lost 3 pounds in 3 days. That will stop I am sure and I don’t want to lose more than about 6 pounds. I will stay with the 15 mcg for two weeks as this earlier person recommended. Does one really have to do more? Maybe this is all I need? Does the effect wear off. Ussing the pen is not bad but it brings back all those pen shots before I went on the pump (about 2003). Using it together would be nice but that must be an awful calculation. IIs it really effective when mixed with insulin? All you read says it can’t be mixed. I certainly won’t try that for now.
I am still figuring it all out too, so I am not sure I can give you much guidance, just my experiences. I am currently on 30 mcg for all meals, and My insulin to carb calculations have changed somewhat however, I have noticed too that what seems to work for me (for breakfast and lunch times at least) is to test, give my symlin, eat, and then an hour later give my bolus for my carbs, but to square wave the bolus for an hour. It keeps me steady and level. When I try that for dinner, it doesn’t seem to work, I end up dropping within an hour after giving my symlin and eating. I can’t give insulin then because I am too low. So it turns out I don’t give any dinner time bolus. Does anyone else have experiences similar to this? Or can anyone give me some advice on whether this is all okay or not? Thanks!
I am now giving 30 mcg prior to each meal, and my insulin to carb ratio has changed from 1:6 to 1:12 now. My basal rates have needed to decrease as well, and my doctor said that it looks like the symlin is working well for me! I have been giving my bolus an hour after I have started eating, and even square waving the bolus for an hour, and I was still having low blood sugars. Has that happened to you? I would end up going too low after giving symlin and eating, but prior to bolusing for what I ate. How is that working? Also, what happens if you give symlin and eat, but then don’t eat the 30g or more of carbs that is suggested for taking the symlin? That happened to me tonight, and I ended up going high. Sorry for all the questions, just loking for some insight and understanding. I see my endo in a few weeks, but was hoping someone has some guidance for me until then. Thanks!
Kelly,
I am just starting the 30 mcg and have not had a low yet (one week) but I am watching the CGMS constantly and when it starts to go low I change to a low temp basel. I am doing 60% (about) of my regular insulin but right before the meal. I find I am going higher 3 hours after eating when the symlin has worn off. Probably then the food is turning to glucose and there is less insulin. I will try the dual bolus so I get some later. It is just easier to hit the bolus button when I need it and not try to figure out when I will go high. It all takes timeing. I have not changed any ratios on the pump. I am using less insulin. I normally use 30 units of novolog a day and now I am using about 24 units. I say watch out for the lows. That I don’t want.
Maureen
Maureen, I too am constantly watching my cgms but I am testing cinstantly too, because it’s not always right on, or because it shows the arrow or double arrows going down, and it worries me where I might be, or how far down I am going that fast. The lows are frustrating and scary at times. I am a teacher and my students know about my diabetes, pump and need for sugar when I drop, but I worry about a severe low happening and me passing out. I haven’t had something like that happen in a LONG time, but because of this symlin, I do worry it might happen. It’s also frustrating having to treat a low blood sugar so frequently, and ingest those extra calories. I was hoping to lose weght not eat more than usual! Actually, I do find that I am not as hungry and wanting to eat asI was before. Since I just changed my ratios and basal rates last night, I am hoping that the lows will diminish and I won’t need to eat more than I want to.
Good luck with your quest! Keep us posted…I would love to hear how you are doing.
I could not have said this any better! I just started Symlin a few weeks ago and am at 45 mcg now and will probably move to 60 soon. It works so well. It makes my blood sugars awesome, makes me feel full faster and makes me stay fuller longer so I eat less. I haven’t lost weight yet (gained some since I wasn’t taking hardly any insulin and my a1c was out of control) but I think it will come with time because I should level out and lose because I am eating less. Good luck to all who try it! It is worth any initial complications.
I know what you mean, sometimes the Symlin is so effective you are on the low side before it is time to take your insulin. (I too bolus my insulin at the 1 hour mark). But I know that the food will kick in later, so if I am at a moderate level like in the 70s I just bolus and it usually works out. If I’m truly low I stall and test every half hour until I see some rise before I bolus. Sometimes that works and sometimes it doesn’t and I go high.
Don’t you hate the “sometimes game”??? The symlin worked well for me originally, and I was running low pretty consistently, so my doc adjusted basals and I:C ratios, and also increased my symlin dose. And then it worked for awhile, If I recall correctly…and like everything else for me, then I lose interest and motivation, and stop following EVERYTHING I’ve been told. Each time I go o the endo, I find my motivation again, and start being precise and accurate…I wish I could see her each month!! Maybe that’s what a CDE is for?? Anyway, I am now bolusing just after eating, and eating fairly soon after giving the symlin (I know, that is a backwards explanation!!) I do square wave my bolus for two hours, to prevent the drop in blood sugar. Good luck, Zoe, and keep me posted!
I don’t see an endo, just a PCP to write prescriptions. I change all my own numbers and do things by trial and error. There are advantages and disadvantages in that. Sometimes I think it it takes me longer to figure it out than if I had a really good endo advising me. But because I tweak all my own numbers and do it all for myself, not because someone else is telling me to, it feels like “mine”, like I’m doing it for me, and that increases my motivation. But I think that’s just how I’m wired!
