I hate that title, because it implies that I dislike Symlin. That’s not true. I like it a lot. Most of the time. The few times I don’t like it are memorable. Take this experience from about a month ago.
One of Symlin’s main jobs is to slow digestion. This helps the post-meal blood sugar spikes, which is one of the main reasons I use it. But because digestion is slowed, I have to also slow my insulin. I usually use a pump feature to spread the bolus out over 60-90 minutes.
Shortly after eating I just happened to glance at my CGM. My heart jumped. I was below 100 mg/dl and dropping fast. Two down arrows. Finger stick confirmed my fear, I was in the low 80’s. I’m too low and dropping fast. I did that quick mental review of the last half-hour or so, trying to figure out what was going on, then it hit me.
I took all of my insulin. With Symlin on board. (this is not the first time this has happened to any of us…)
In a panic, I ran through scenarios in my head. What would happen? What could happen? I really messed up this time. I’m not going to make it.
Grabbing the 50-count bottle of glucose tabs and the emergency glucagon kit, I prepare to have “the talk” with my wife. Chomping on glucose tabs, unsure of how much she “gets” about what Symlin does, I tell her what happened and that I’m not sure what’s going to happen.
Right then I start sweating like crazy. Drips and drops all over my face, head, arms. I’m watching her try to contain her panic while she’s watching me explain the worst case scenario to her.
I’m chewing glucose tabs mixed with kool-aid mixed with more sugar, all the while watching my blood sugar drop and talking my wife through jabbing the glucagon harpoon into my leg if I fall over. My CGM is saying “LOW”, my blood sugar is around 40 mg/dl and we’re not even 20 minutes into this thing. I could pass out at any moment, and I’m scared, and my wife is scared.
It’s a crazy thing knowing you could black out and fall over at any second. We moved to the couch so that I wouldn’t hurt myself if I did (isn’t that a creepy thought?).
I’m talking to her about what to expect after a glucagon injection, but in reality I have no fucking clue – I’ve never been conscious to witness what happens, or know how long it might take for me to “come around”. What does she do while I’m laying there? How do I appease the doubt she would be experiencing while waiting?
…
Scary shit my friends.
It took about 45 minutes for things to turn around, and I never went so low as to start acting funny or lose consciousness, but I had to fight hard. I felt pretty bad, both physically and emotionally. I took Symlin and had a full dinner. The last thing I wanted to do was eat or drink anything. No, that was the second to last thing I wanted to do.
The last was falling over unconscious.
I’m 32…have been Type 1 since I was 12. I started Symlin about two months ago, and for the past 3 weeks have had daily…sometimes multiple daily lows (under 40 is low for me). Just last Saturday, I was showering late evening after dinner and began to feel low. When I got out, my pump was beeping from my CGMS telling me I was 68 and dropping (with double arrows). So, I checked with my meter and sure enough…it was 21! I thought “my meter must be off” so I checked again…27. I’ve never chewed glucagon tabs…I’m a Coke drinker. I’ll admit that 40 doesn’t scare me…but, only once have I ever been conscious in the 20’s to realize I was that low. It was quite scary, and I’ve been on the pump for 4 years now. I’ve never had lows like this until I started Symlin :/
Wow, I’m so late to this. Scott, I feel for ya and I know what that must have felt like. Be glad you actually have a CGM. At least you had a few moments to quickly plan some action…and a good plan you made with those precious moments, sir.
Cheers,
J.B.
Thank you for sharing this, Scott. I doubt an endo or a CDE could convey the experience of making a mistake with Symlin and insulin as accurately as you have, and it wasn’t a risk I was completely aware of (despite my personal research into Symlin). You definitely woke me up. Lows that you can’t really treat. Jesus. I’m sorry you had to go through that, sounds like crap on a stick and then some.
Thanks for telling us about this. The fear is so real, how do we keep going through this and not become paralyzed zombies from it all? I suppose the continually moving on from these episodes and continuing to try, try again is part of the resilience that we humans seem to develop over time. Pat yourself on the back for always getting back on the horse in one fashion or another!
Ay Dios Mio! That was intense to read, it really was. I’m glad you are alright!
While pregnant with my twins I once ate a carbohydrate heavy meal (those darn cravings) and gave insulin for it of course. My morning sickness which lasted all day made me throw up my dinner and when I tested, I was 32 and dropping fast. I found my glucagon and discover it had expired. My husband brrought me juice box after juice box after juice box. I kept throwing up and kept telling myself I had to stay awake for my babies. After an hour and a half I was finally up to 55 and purely exhausted.
This happened a lot throughout the pregnancy…people didn’t understand why I cried so much after the babies were born. It is because I felt like it was a freakin miracle the three of us made it.
Sheesh we’re all hard core for going through this stuff aren’t we?
I’m glad your ok! Symlin seems like it causes a lot of weird things to happen. Is it worth it?
Yikes! Bad lows are scary enough when I know the fast carbs are going to start doing something fast. Waiting through the unpredictable delayed uptake would be so much worse. I am so glad you made it through. I need my Pancremaniac buddy!
Scary, scary stuff! I am so glad you have a CGM that helped alert you. I know the FDA makes a big deal that they are only supposed to be used for “tracking and trending”, but sometimes that’s all we need!
WOW!
Scott, I’m so glad your OK! I’m working on the Symlin thing, and stories like this scare me.
HUGS
Kelly K
Dude. I hate what Symlin can do but I don’t hate all the good stuff it does you know? the love/hate thing.
All I could think about was the helplessness Tab must have felt. I mean, I have had those symlin lows that are effing scary but you are telling your wife, “I am going to pass out and you are going to have to jab that needle into me leg and …” I would be like, No I am calling 911! So scary for her too.
As always, I am thankful that you are ok.
I have been on Symlin for about five months now and my averages for the sugars are lower yet my Ha1c is about the same. This doesn’t make sense but they tried to tell me it was because my sugars might be going up at night while sleeping and thius could be doing it. So, 3:15 am wake up stick finger-135 or so most nights. Hmm-asked the lab tech if the Ha1c machine is standardized everyday and she said yes. Doesn’t make any sense.
Scott,
I am so sorry you and your wife had to go through this and am SO glad you are OK. Thank you for being so honest for sharing even though it was a terribly frightening experience.
I had the exact same thing happen and had to get out the glucagon and have “the talk” with my husband. There is something so surreal about saying “now if I pass out, inject this into my bottom and call 911.” In the end, my blood sugar came up and everything was fine, but I was emotionally shaken for about a week. It happened in the middle of the afteroon on a Saturday and after “the episode” we continued on with our day and even went out for dinner as if nothing had happened because we really didn’t know what else to do. I also felt extremely irrresponsible and super guilty for putting my husband through it.
A few days later I resumed taking symlin. Being on symlin I feel full for the first time in 25 years with the D. I really like the psychological calmness that comes with feeling full.
AHHH, this stuff is complicated!
Thank you again for sharing and I am so glad you are OK.
Those are the worst lows ever! 🙁 I had some similar experiences both on and off symlin. Fortunately, it doesn’t happen often. I’m really glad you pulled out okay. I usually console myself thinking that, if I eat enough, and do pass out, I will come around eventually. I also restocked my glucagon supply. In almost 22 years of t1 diabetes, I have never passed out. That also gives me some comfort, because I have gotten pretty low.
Whew, what a story. You know, we’re all so used to it, but every so often something reminds me that insulin is really, really scary stuff. Symlin just amplifies the danger of insulin…low and can’t fix it. Holy crap.
Every time I take Symlin and I dial up that extended bolus on my pump I remind myself…CONCENTRATE, DON’T HIT THE STANDARD BOLUS! Now I’ll think of you and that will help me remember. Glad you made it through!
Scary! Glad it turned out ok. A month ago I scared the crap out of my kids in a similar situation, right down to the sweat dripping while trying to explain glucagon… Only instead of symlin it was too much housework got me below 40 right as I was entering peak insulin time. I wonder if I could get away with giving up housework?
WOW that’s really scary. Good thing that you were not alone. Kudos to your wife for keeping her cool! 🙂
Scott, I’m so glad you made it through that’s scary stuff. This is the main reason I stopped using Symlin.
I found that if I can keep the chewed up tabs in my mouth for a while it helps a lot, because you get some dextrose absorption through your mouth. If you swallow it, then the Symlin will work against you because it’s slowing down your stomach. Holding that goop in your mouth is hard, it helps if you lean your head forward.
Dude, glad you’re ok!
Whoa, that sounds very scary.
Have you ever looked into dong mini doses of glucagon? I think the CWD site has the ratios for weight vs amount needed, but it does work.
sorry that happened scott.it sucks.
Hey Scott, I have heard great things about Symlin, but the downsides are when things go wrong, they really go wrong, but its more about the underlying insulin that’s used with this. They really need to fix that piece of it! There are two different companies working on this, but it can’t happen soon enough IMHO. Incidentally, on the hypo thing, as of late, I have become a fan of Dex4 liquid glucose shots/drinks. Not all the time, mind you, but there are times I just don’t want to chew all that chalky powder, or when time is of the essence. For those occasions, I really like the liquid shots, there’s nothing to chew, and they work quickly. Maybe a six-pack of glucose liquid shots would have been the ideal in this case?!
Yikes! That is really scary. Thanks for sharinging one of the emotional tolls we pwds all experience – FEAR.
VERY scary! Glad you made it through.
That is so scary. The scariest part is knowing that you have to take more of the same meds that just did that to you.
I liked Symlin too. I had fewer lows by far, but they were much worse.
DUDE. That sounds so scary! A stubborn low like that is so frightening – and dangerous. One of the worst feelings ever. I’m glad you were able to start taking action early, rather than having to wait to feel symptoms! Thanks for sharing the tale.