Symlin - highs 2 hours later

Type 1 and LADA
1

So, I’m trying Symlin again. And I keep calling it Synthroid (my brain just can’t keep up), so I apologize ahead if I do that in this post.

Anyway, I tried Symlin a few years ago when I was on MDI and hated it. It made me very nauseous, and I got no benefits of needing less insulin.

Well, now I’m on the pump and my doctor informs me they offer Symlin in pens now and I decide to try it out, starting Monday.

Started on the lowest dose, didn’t feel sick, didn’t adjust my insulin at all. Moved up to 30mcg. Didn’t feel sick, tried adjusting my insulin carb ratio from 1:8 to 1:10. Big fail. I was high two hours after my meal (170s). And I didn’t start the spike until about 1:30 after. And it really seemed like it got higher than it would have normally (1:10, no symlin). Tried again last night for dinner with 45mcg, 1:10, with similar results, though a tiny, tiny bit of nausea.

Today for lunch I did 45mcg and the 1:10 ratio again. I had 37g of carbs for lunch and took 3.7 units of insulin. All was well until about 30 minutes ago (1.5 hours after lunch) and I get the dry mouth. CGM says 99, but rising. Check with my meter and OH HI, 236.

I’m not sure what the bigger fail here is, Symlin or my CGM.

I’m waiting to take my insulin until after I eat, since I noticed after the first time that my food wasn’t kicking in right away.

But this is ridiculous. I don’t see how taking about one unit less of insulin than normal could even send me to 236 and rising at super speed near 2 hours after eating. Much less with adding Symlin on top of that. I’m getting paranoid the Symlin itself is making me high.

Has anyone had similar frustrations? Should I hold judgment until I reach a higher Symlin dose? I mean the recommended is 60 anyway! I don’t get it. I hated Symlin the first time, and once again it’s giving me headaches. I’m disappointed because I really want this to work for me.

There’s always a chance something else is going on–bad pump site, etc–and that this is all a coincidence. If so, it’s a totally lame coincidence and I think the universe is trying to steer me away from Symlin.

I read oneless’s Symlin guide by the way, though I’m going to read again just in case I missed something. I really think I’m going crazy.

2

I’m pretty sure that Symlin may slow down stomach emptying the way that Byetta does. Byetta is notorious for delaying digestion 2 or 3 hours and people using it are told to test a few hours later than usual.

3

Did you use the delay bolus? I take symlin at breakfast, take no bolus upfront, and use combo bolus over one hour. It works really well for me.

4

OMG, I could have written your post!!! I am so frustrated, I’ve been taking my symlin mostly just with my dinner meal (because typically its the only meal that has more than 30 gr. of carbs) and like clock work…2 hours later…boom!! up to 191 or higher!! yikes!! my BG stays low after my meal for a good 1.5- 2 hours and then rockets sky high. so frustrating!! I’ve got an email in to my endo about this as I’d really like to continue w/symlin IF we can figure this 2 hour high thing out…if we can’t this under control, I may do away with the symlin all together. Please let me know if anyone has any ‘tweaking’ suggestions to help eliminate the 2 hour high. thanks everyone. this board rocks!!

5

Sorry to hear you’re having a tough time with it too! I eventually gave up trying to make Symlin work for me. I don’t know if the problem was the Symlin or just my inability to get the timing and dosage down!

Best of luck!

6

It is Always a timing issue severely influenced by your current Bg and direction and insulin onboard. I’ve been using Symlin (amylin synthetic) ever since it was first approved. Luckily I never had any nausea or any other symptoms. Even though I’ve used it forever I still can get those delayed hyper’s. I use a pump and CGM. I’ve found that the best successful results are when I have a stable normal Bg and no laging insulin onboard for at least an hour before eating, which is not easy to achieve as my basal rates change almost daily. When I do achieve that stability before meals I take about a third of my carb guess total dose insulin 20-30 minutes before, then I take 60mcg Symlin about 10 minutes before. After I finish eating I’ll set an extended 2 hour bolus with about another third of my total insulin guess (and it is a guess!). Then I observe CGM direction and give the last third as a bolus on top of the extended about an hour after eating. If I give just a 2/3rd total straight extended bolus It often gets too much insulin too early. I’m not sure if other pump brands offer extended boluses that have different rates of infusion, my Deltec is a constant rate over the 2 hours. If Bg is rising to fast I take that last third a little earlier, plus I’ll add or subtract from that last third bolus depending on the rise rate which you can almost guarantee will happen at sometime later, it’s just hard to predict when. Everyone is different you just need to experiment, but you need an insulin response during that post prandial period later than without Symlin.

A CGM and constant observance is the only way I think you can use Symlin effectively. I’ve used both Navigator and Dexcom and the Nav makes Symlin use easier because of it’s superior accuracy and much quicker directional rise rate because of the every minute numbers rather than the Dex’s 5 min numbers.

Now, the above is only when everything is perfect which is a rarity. If I’m low to start with or have insulin onboard I wait until after eating before taking either insulin or Symlin and then it’s just watching and trying to get the late Bg rise caught with insulin early enough to catch it before it’s out of control. Of course if I’m high before eating I’ll do a variety of methods to get it down as fast as possible before eating or I just skip eating or eat no carbs.

I’ve tried a very low carb diet like Bernstein and do well without Symlin, but I’ve also had good success with high carb diets and Symlin but with more insulin.

Symlin is just one more big hassle but sure helps if you think carbs are important, or if there is some unknown benefit yet to be discovered why we need amylin. Remember non-autoimmune type 1 diabetics have their own amylin production that we lack because of beta cell destruction. If normal humans have amylin it seems that we should replace our lost ability to produce amylin just like we do with insulin.

One of the reasons Symlin works well for me is that even after 50 years I still have a very strong glucagon production produced by another Islet cell and I understand that glucagon is also co-released with insulin&amylin after eating. Symlin/amylin interferes with that liver response to glucagon. I bet that type 1’s that don’t have a strong glucagon response to food might not get a good benefit from Symlin.

7

thank you very much for taking the time to respond, your post is very helpful to me!! I’m trying to decide If I’ll stay with symlin or not…reason being this: the whole reason my Dr. gave it to me is because of it decreasing my insulin intake, , however, I take a lesser bolus at mealtime (50%) but 2 hours later i have to take a huge bolus to get my high level down. so in reality I’m not taking less insulin…so I’m going to do some more research and see if this will be worth the extreme highs for me…I don’t want to just ‘give up’ on it, I want to research and try to ‘tweak’ the dosgae/times etc and see if I can make it work for me and your post has been very helpful. thank you!

8

Take an extended bolus and set it for 2 hours.

9

Debie,
For me, my insulin requirements decreased a little but not a lot. It just lets me handle carbs better. With Symlin the insulin requirements are not needed as immediately, it just has to be there at the right time later, keep experimenting with your extended/combination bolus.