I intend to blog about this, but just want to share that, for me, Symlin has been the answer to the weight gain and increased insulin resistance since starting insulin injections last January. Until then, I was within normal weight range but after insulin, the weight started slowly creeping up. With every pound, I required more insulin…and after 10 months, I was 20 lbs heavier - despite very low carb and exercise (my last A1c was 5.4).
Briefly - Symlin is a synthetic form of amylin (a hormone that is naturally created & released along with insulin, but also stops being released once beta cells are shot).
For me, replacing this missing hormone was the answer I’ve been searching for to stop the horrible cycle that Bernstein talks about in his book…insulin is introduced in someone who is already insulin resistant and it increases weight, every pound of weight increases resistance, higher resistance increases need for more insulin, more insulin increases weight, and on, and on, and on.
Nothing else worked before Symlin. It’s been a little under 3 weeks, I’ve reduced my insulin usage to less than half what it was, and I’ve lost 8 pounds. Thankfully, I have not experienced any of the nausea that some people experience in the beginning.
By the way, another benefit of Symlin is that it also suppresses appetite. I am actually amazed that it is not used by more diabetics. It can be used by either T1s or T2s who are insulin-dependent.
I just wanted to share and spread the word…I know this is an issue for many diabetics and I am amazed that using Symlin is not more prevalent. I can deal with diabetes - but NOT with weight gain.
I started symlin in the spring, lost a few pounds and then got off the habit of it when summer started. I still haven’t returned to my daily useage. I can’t use it at breakfast, it makes me too nauseated, even at a small amount, so only lunch and dinner. It works great, I agree!
What was your daily dosage, if you don’t mind my asking - and how long did you take it for?
I got up to 120 mcg - the max dose for T2s - and while I never had outright nausea, I had an “uncomfortable” feeling in my belly - but interestingly, only at the lower doses and only for a day or so. Some people say the nausea goes away after they have been on it consistently for awhile.
Symlin is used for Type 1s, even for adolescents sometimes, but I have read reports online about nausea being common after use. It would make perfect sense that amylin should be replaced, as well as Glucagon, since those hormones have also been greatly effected by a Type 1 diagnosis, not just insulin. Very glad you have no problems with it and wonder if the people who do may be getting too high a dosage. Maybe the successful Symlin users could start a thread comparing dosage to weight. That would be helpful, if people could figure out the right dosage to take to avoid nausea, or even if dosage is related to nausea at all.
Thanks for your reply - however, it is not true that Symlin is just for Type 1s. Symlin can be used by either Type 1 or Type 2 - as long as they are taking insulin.
I’m not sure the dosage is the issue with the nausea. I don’t know, but time and stomach sensitivity seem to be factors.
There is a Symin uses group right here at TuDiabetes. Lots has been shared. I’ve been on it for a year at the120mcg dose. take a look at the shared experience of others.
That’s a really, good point, Gerri. In fact, I thought about you when getting used to the Symlin because I had to learn when & how the food “hits” my system…but at least it’s fairly consistent - 1.5 to 2 hours later - and I take much less insulin when it does hit. With your gastroparesis I guess it’s very unpredictable so Symlin would just make it worse.
Also, it should be noted that I DO NOT take Symlin the way the doctor or the literature suggests - I know that’s not a big surprise to folks who have been hanging around Tu for awhile. We have to find our own solutions and share tips and tricks, so to speak. However, thankfully, Jason did a lot of the work for me. I suggest that anyone considering Symlin should read his 3-part blog post. http://tudiabetes.com/profile/oneless - Although my system reacted a bit differently, of course, (for example, I never experienced any stinging or nausea and the timing was a bit different) - BUT his information was SUCH a big help to me that I printed it out and kept referring to it in the beginning.
Interestingly, I have not used Symlin to treat my DP as Jason talked about in his Guide (I think I’m leaning toward the pump for that), but I do use a half dose (that’s 60 mcg. for me) to cover me in the morning while I have my coffee. It works well.
It is a shot. I’m on MDI right now, but many who take Symlin are pumpers. That puts some people off - but MDI has never bothered me (other than the inconvenience) - and the benefits have been so dramatic that I don’t mind at all.
However, I am considering getting on the pump. Even though I’ve been able to go from an A1c of 8 to 5.4 on MDI, it’s a constant struggle to battle with my wicked DP.
Do you know what your C-peptide was when you went on Symlin? You say that it helps “once beta cells are shot” and I know that my C-peptide is 1.3, which is the low side of normal.
I, too, have gained weight on insulin & more critically, the pounds I have gained seem to be in my middle, which I know to be the most dangerous place to put on the pounds (and very uncomfortable for me.) I started Lantus in January, gained a steady pound a month through July, & seem to have leveled off since then. I am watching it carefully, but still miserable. I have not required more insulin as I have gained weight - in fact, I have backed off from a high of 24 units to my current 16. But, I’m curious about whether Symlin would be appropriate for me.
I do see from the Symlin users forum that it causes stomach distress & I had a terrible time getting acclimated to metformin ten years ago. I see you haven’t had issues with that. You’re probably very fortunate.
I don’t know what my beta cell # is currently (I only started Symlin a month ago), but it about .5 when I started insulin in January. No, haven’t had any issues with the distress - and I still take Metformin - I have my Dad’s cast iron stomach…and I was determined to get through any discomfort - a lot of people have said the discomfort passes.
I hear ya about the slow creep of weight - that’s what I experienced.
I’m curious, though - based on what criteria did the doctor start you on Lantus? There should be only one reason - your fasting BG is too high - as Lantus is long-acting insulin and not intended to bring down your post-meal numbers. Unfortunately, I have heard of many doctors using it for T2s when their post-meal numbers are too high. The only way it can work to “lower” post-meal numbers is if your own background or long-acting insulin is not producing enough to keep your numbers steady in between meals - then, if you eat when your fasting BG is to high, it will naturally raise your post-meal BG. Make sense? But the reality is, once your fasting BG is regulated, Lantus does nothing to assist with meal-time BG. My theory is that a lot of T2s are being given Lantus as a stop-gap to manage post-prandial #s.
One last thing - I take Lantus, but I do not take it all at once. Even though it is supposed to last 24 hours, it does not for most people. I had a much better result breaking the dose into 2 equal parts - half just before bedtime and half mid-morning. This is not something the doctor suggested, but rather based on tips I got from other PWDs - so I just informed the Dr. that it was working for me and she said fine.
My doctor prescribed Lantus based on my A1c, not my FBG number. I’ve generally had decent FBG readings that slowly elevated throughout the day. Three months in, she added Prandin with meals, but I had a lot of problems with hypos, especially eating moderately low carb, so I don’t take it with every meal. I guess you’d say I take the Prandin based on carb load. I just wondered if Symlin would work as well as Prandin on moderating post prandials, but also address the weight issue.
I have never split Lantus doses, although I’ve considered it. I’ve also considered switching to Levemir since there don’t seem to be as many complaints about weight gain with it & taking it split-dose since I understand it doesn’t last as long as Lantus.
When I was trying to get a workable regimen, I tested 8 times daily. Now, I’m usually down to 4 - fasting, 2 hours after breakfast, 2 hours after lunch, & bedtime - unless I don’t feel well.
I have thoroughly plundered Jenny’s site, but am constantly looking for more information and better strategies. Thanks for your response!
Interesting that the Lantus RX was based on your A1c, not FBG - I would maybe do some more research on this. If your FBG was good, maybe you just need a few units of fast-acting for meals?
I’ve never taken Prandin. For 15 years, I was strictly on Metformin and a sulfonylurea - until my beta cells gave out. I was basicly fine until I got a new doc who changed up everything, giving me Januvia and Actos. All of a sudden, I went downhill. I’ll always believe this blew out my cells. After that, I finally got educated and took control.
Every medicine works differently on each person - all I can tell you is that I switched to Levemir for the same reasons - and wound up gaining even more weight as my system was more resistant to Levemir and I had to take much more for the same effect (Lantus and Levemir are formulated very differently - don’t ask me to explain it, though LOL!).
I test 8 to 10 times a day because I want very tight control, and am always learning new things about how certain foods or combinations affect me, and about the rhythm of my body.
