I am learning the same. I take the 15 units of symlin (it’s my first week) and go so high so fast with hardly much food, that I now inject the insulins in 15 minutes. We shall see. I do love symlin. What dose are you on? Since I just started and I fear the lows my doc and I agreed to stayon 15 mg for three weeks. Might be a mistake. Thank you for saying what i was feeling. let’s get this symlin/insulin right for ourselves. Here’s hoping!
I think the protocol for dose increase is to raise it another step each time you haven’t experienced nausea for 3 days. As far as lows, it seems we are all different, but I have experienced very little lows. On the other hand I don’t bolus before one hour unless I’m already high before my meal. Just keep careful record of how you take your insulin and your results. The spikes to look for don’t generally occur at 2 hours but at around 4, as one of the main actions of Symlin is to slow down digestion. I now do my testing at the 4 hour mark instead of the 2. I’m almost always in range at 2, it’s the 4 where the spikes might occur. When you are on your full dose, Wendy, you might find you don’t go high that fast at all and will probably want to take your insulin later. The dosing of Symlin is the easy part, it’s the dosing of insulin that takes a lot of trial and error to figure out and is very individual. For me, no dosing timing worked until I upped my basals a bit for the periods 3-5 hours after meals.
I have been so busy and have had little time to jump on here…I’ve been on symlin for months now…and still have a love/hate relationship. ha ha. I’m eating very low carb, I’ve submitted to Dr. Richard Bernsteins way of eating…and love it…I’ve always counted carbs and eaten very healthfully…so his teachings are not a huge stretch for me…I’m taking symlin once daily, sometimes twice daily. I am taking symlin with my first bite of food and bolusing 20 minutes after my meal is finished. (I bolus about 80% at this time)…I then set my timer for 1 hour (after first 80% bolus) and check glucose then. if rising high, I do my 20% bolus now…but usually end up waiting for another 20-40 minutes depending on how much active insulin I have let and dependent on how high the the BG is going…I usually take my full 80/20 bolus by the 2 hour mark. Occasionally I go high at the 4 hour mark but it’s only occassional…and usually a hormonal time for me, and I attribute it to hormones (liver kicking out glucose).
Again, I’m eating 100 grams or less of carbs per day (usually closer to 60 grams) , I drink a health shake that gives me 5 servings of fruits/veggies in one shake to keep up with my nutrition needs, I’m eating lots of lean proteins. Last appt my A1C was 6.1 and I’m striving for 4.6. I set lofty goals for myself, I know…I’m a bit OCD. I’m taking an average of 18-23 units of insulin in a 24 hour period. my highest has been 23 units and my lowest has been 16 units in a 24 hour period and 13 of those units are basal. I’m on a 60 dose of symlin.
Question, Debbie: When you talk about taking 80% of your insulin and then later the other 20%, I’m wondering what amount you’ve reduced your insulin compared to before you started Symlin? Have you lost any weight, or was your goal taking Symlin more to have been blood sugars?
Oh and by the way I eat 100 grams or less carbs a day as well, but that’s not Bernstein. Bernstein’s program is 30 carbs a day. I follow some of his ideas, like the “law of small numbers” but I’m not willing to reduce my carbs that low, though I know it seems to work very well for many people.
I am now taking 60 mcg three times a day (with each meal). I only take a portion of the insulin before the meal, about 1/4, and then when the two hour mark comes I take the rest. I have the BG reminder set for 2 hours. I also see the rise with the CGMS. I like the two hour rise. I know I won’t go low after two hours.
After being on symlin about a month I lowered my basal rate all around but not by much. I went from mostly .5 to .45. The symlin seemed to affect not only the meal time BG but others also, meaning they were lower and I needed a lower basal. My total insulin use is also lower. Before symlin, I used 28-30 units a day. Now I use 22-24 units a day. I have now been using symlin four months and I like it. I lost 5 lbs, but that is all I can lose.
Zoe, I reduce my insulin to 50% …so if my meal is 30 grams of carbs, my overall bolus will be 15 grams, so I’ll take a bolus for 10-12 grams at 20 min post meal…and the rest at 1-2 hours post meal.
Yes, I know Bernstein calls for 30 grams…and I’m working my way down to that…I’ve been doing well at around 60 lately…I’ve been loosely following his approach is what I probably should have said in my earlier post…trying to lower my A1C to 4.6 even though my endo says 6.1 is fabulous…his teachings are opposite…6.1 is not so good in his way of thinking. I’m still reading the book and getting caught up on some of his webinars…and learning as I go. I find his way quite fascinating…but yikes…30 grams of carbs per day (6/12/12) is not easy to achieve all the time. I’ve got my breakfast nailed down to 5 grams, and lunch is usually less than 12 but dinner…well, I like my salad, veggies etc which drives up the carb count, and then I drink a nutritional shake that is 17 grams of carbs but gives me the nutrition of 5 servings of fruits/veggies which I find important for me…so I’m still learning and finding what carbs to reduce etc., I’m so glad we have this forum because symlin is not widely used and its so helpful for me to hear about what you all are doing.
wow MaureenH… I’m glad you found what works for you…I’ve played around with the timing of my insulin for months…and i do like to have a little bit of insulin onboard before I take my symlin…but I cannot wait 2 hours to take my bolus or I’d be sky high by then…it’s amazing how symlin works so differently in all of us as far as timing…but i find it fascinating to hear all your stories and what works for you…we all learn from each other and I am thankful for that!!
I agree completely, Debbie. There is so little information out there about Symlin, I appreciate everyone who posts on here. It took me awhile to figure out what worked for me too. What I found is if I do the Symlin 20 minutes before my meal I really experience that feeling of fullness. Then I test and do my bolus at the one hour mark (unless I’m low). I do my post prandials at 4 hours. I switched my I:C ratios in my pump from 1:6, 1:7 and 1:18 to 1:12, 1:14, 1:30. I found decent results - not always in target, but I wasn’t in target all the time before Symlin! But what I didn’t do was lose weight. I have gained 10 pounds in the last year despite eating very healthy and moderate low carbs (under 100). So I was frustrated.
I thought it over and decided to raise my dose of Symlin. I was taking 60mcg as recommended for Type 1’s. I’m not insulin resistant (take about 20 units TDD), but I’m 62 years old so I think that makes it harder to lose weight, so I decided to try raising my dose. I got up tp 120 mcg a couple days ago and having a lot more success, being in range the majority of the time. I never thought I’d be so stable! It’s only been 3 days so I need to patient and see if I lose weight, but I hope I will at the higher dose.
Good for you on working your way to Bernstein. I don’t think it’s for everyone but it’s impossible not to admire people who do it and recognize the great results they get!
Zoe…I really have not lost much weight either despite my low carb lifestyle and I exercise 6 days a week…I’m a certified personal trainer so its frustrating as hell for me!! I’m going to up my dose to 120 also and see how that goes…thanks for sharing your experience! I’ve been toying with upping my dose for sometime now and your post just solidified it for me! It’s worth a try!
I am only taking 18-23 units of insulin in any 24 hour period…so I thought I’d lose weight with symlin as I’m not taking as much insulin…as I thought insulin was the culprit. I KNOW I’m not eating too much and I get plenty of exercise…so all the more frustrating. We’ll keep plugging along, I’ll let you know my results with 120 dosage. thanks Zoe!
Yes, I can see you would be frustrated, Debbie! I’m frustrated because I am now taking under 20 units TDD, eat under 100 carbs a day, zero sugar and never overeat. But you are much younger than me and very physically active in addition!
I’m sure getting dramatic improvement in my blood sugar, at 120, so hopefully I’ll lose the weight too!
Be careful of lows at the higher dose. Sometimes my blood sugar dips down into the 50s and I stall dosing my insulin until it comes back up. I’ve also lowered my basals which I’d raised to deal with the 4 hour spikes. Yes, let’s let each other know how it goes. Good luck!
I only give one unit of insulin with food and the 60 mcg of symlin. I have no rise. Two hours later I give the rest of the required insulin. I actually do the two hours later insulin in increments and could probably use the square wave. I just haven’t tried it. This works for me. My daly insulin is 22 U when it used to be 28-30 U before symlin. I think the symlin makes me feel better. I did try raising the symlin above 60 mcg but went low so I won’t do that again.
I lost weight the first two -three weeks on symlin and haven’t really lost much since then. Maybe you don’t have much extra to lose? One doctor suggested the early loss was mostly fluid. I do think I was holding fluid before and now I am not. I am not snacking a lot which I did before so that is part of the reason I lost.
It sounds like you are ok with the better blood sugars and aren’t worried so much about the weight loss, Maureen and you do look average weight. Good for you on eating healthier!
I wasn’t sure if you were responding to me or Debbie, but speaking for myself. I’d say I was at the lower end of good weight for my height before and have gained 10 pounds in the last two years which puts me at the upper end of my healthy weight range, so by no means obese. I would like to go down to the earlier weight, but mainly I will be happy if I just make sure not to gain any more!
Cheri, I am so glad you offered this option… Like Donna, I am having the same issue with highs two hours or so after I eat… I never take the Symlin if I am on the low side of things… Learned that one the hard way! LOL… Thanks again for your input! I have an appt with the Endo this week to discuss options… I’ll bring up your suggestion.
Wow! Thanks for sharing! I’m going to give this staggered approach a try.
Do you find that you need a different approach for different types of meals or do you use this every time?
Well I have refined my procedure even more because I have a blood test coming up next week and want to stay under 200. I do change the bolus amount according to what I will eat but otherwise I use the same procedure. I will give maybe 1/2 of the required insulin before the meal and do the 60 mcg of symlin. I do the symlin 3 times a day with every meal .Now I have the reminder set for 1 1/2 hours when I give the rest of the insulin. I decided the 2 hours was when the BG rise started so I have to get the insulin in before that time. I might even be a little low then-70 or so- but I know for me the symlin is completely finished at 2 hours. I tried doing the second dose of insulin with a square wave for 1 hour and this seems to be working. I even used the symlin during a trip to Germany with students for four weeks this summer. I never stopped and I like it. Sometimes I had to inject through clothes because it was not convenient to lift my clothes.This worked pretty well but at that time I just wanted to keep from going low. Now I am trying tighter control. I think the symlin works and it cuts my appetite. I feel better.