If you missed Part 1, you can find it here
So in this segment of my Symlin guide, I want to get into the realities of day-to-day life with Symlin and what you will go through in working up to your prescribed dose. I do hope that nothing I write discourages you from using Symlin, but I want to be honest about what I believe to be its challenging aspects while I extol its virtues. The truth of the matter is that Symlin use brings you more in line with a normal human metabolism, whereas prior to now your knowledge of how to manage Type 1 diabetes is tuned to a metabolism that is lacking a couple of key hormones, of which Symlin is one. So in a way, you will be “relearning” diabetes management, but you are not starting from scratch like you did on D-Day and you will likely adapt very quickly. After all, us Type 1s are, more than anything else, supremely adaptable people!
Your body has not seen hide nor hair of amylin since your immune system destroyed your islet cells. Over time, like a frog in a pot of water that is slowly brought to a boil, the changes this absence of amylin brings probably have gone unnoticed by you. And your body has grown accustomed to digestion without it. That is all about to change- you are about to become a little bit less of a Type 1 and feel a lot more like a non-diabetic when it comes to eating. Getting there however, is going to require some perseverance and determination on your part in the face of what might be rather uncomfortable, but very temporary issues.
If you were given the Symlin sample pack by your doctor, it contains a couple of injection pens full of Symlin, some pen needles, and some rather vague, incomplete literature. If you have a bottle with syringes, nothing about this guide changes. Do the translation in your head. You will be starting out at a 15mcg dose before eating any food containing 25 grams of carbohydrate or more. The injection is to be given immediately before eating- and that means immediately! Do not dose ten or fifteen minutes before you eat, because by that time, Symlin’s strong appetite suppression has kicked in and you will not be able to eat as much as you may have expected. I want to mention right now that if you, like me, never kept a glucagon kit around before, get one before you start on Symlin. I will touch on this more in this post and in part three, but the fact is, in using Symlin you may find yourself with severe hypoglycemia and no way of raising your blood glucose with food. Don’t be frightened of this though- I am going to explain how to consistently avoid that kind of train wreck. I have never needed to use my glucagon kit.
Your First Dose
When taking Symlin, you will no longer be injecting insulin 15-20 minutes or more before a meal. In fact, this would be quite dangerous. The Symlin will be given first and the insulin after you finish eating. The first thing you may notice is the sting of the injection, particularly if you are a lean individual. Symlin hurts when you inject it, but a 15mcg dose is not felt by most people. You probably won’t have to deal with that issue until you get to around 45-60mcg, and while it does not go away, you get used to it (mostly- I still occasionally throw a curse upon the lineage of those at Amylin who couldn’t figure out how to buffer this drug). Once in a while I don’t feel a sting at all and these moments I treasure in my heart.
The next thing you will notice is mild to moderate nausea and general stomach discomfort, which at first lasts a couple of hours after the shot, but will fade over the course of about 2-3 days. Once it fades, you are ready to increase the dose to 30mcg. Again, after it fades at 30mcg, you are ready for the next step, 45mcg. And so on until you reach your prescribed dose. Keep in mind that the nausea gets relatively less severe with each step up, so going from 75mcg to 90mcg is much easier than going from 15mcg to 30mcg. I only needed a little more than a day to transition from the 90mcg and higher doses, and I do not have a stronger stomach than the average guy. There is no nausea or discomfort for most people once you are acclimated to your prescribed dose.
There are two types of Symlin injection pens, one that has a maximum dose of 60mcg, with 15mcg increments from 15 to 60, and another that has a maximum dose of 120mcg but with only two selections- a 60mcg dose or a 120mcg dose. This means two injections during acclimation if your prescribed dose is 120mcg, once you get above 60mcg. This sucks, because as mentioned previously, Symlin injections can be painful at doses above 60mcg. Just try to dose around people not bothered by bad language during your acclimation period.
So which dose is right for you, 60mcg or 120mcg? The three doctors I have asked all suggested I work up to and use a 120mcg dose, despite the Symlin literature suggesting a 60mcg dose for Type 1s and a 120mcg dose for Type 2s. There is a significant benefit to using the 120mcg dose- quicker and more visible weight loss than is seen at 60mcg. You will also need less insulin to cover meals at 120mcg than you will at 60mcg. If you are prescribed the 60mcg dose, inquire as to whether you can work up to 120mcg instead. There is nothing illegal or improper about this. From here on out, I will be writing as if you are taking the 120mcg dose. If you decide to stop at 60mcg, you may need to make some adjustments to my recommendations below.
The Meal Bolus
OK, you’ve taken your Symlin injection and you’re counting carbs to calculate your mealtime insulin bolus. STOP. Do not take a normal bolus. Calculate the amount of insulin you need, then cut it in half, but do not inject or pump it in yet. If you are a pump user, you have far better options than those on MDI but both are workable, I suppose. Symlin typically results in a 50% average reduction in the amount of insulin you need to cover a meal (for me, it was a 70% reduction). It does not affect your basal rate. But due to the fact that it greatly slows digestion (this is a relative term- it slows your digestion down to what a non-diabetic would experience), taking your insulin before your meal will result in severe hypoglycemia that is horribly difficult to treat and then severe hyperglycemia a few hours later from the food and hypoglycemic rebound effect.
Your blood glucose probably will not move much for between 60-90 minutes, and then it will rise steadily but not at lightning speed or what you were used to seeing without Symlin. Thus, you have two options if you are using a pump. You can give your insulin as a pure 60-120 minute square-wave bolus (or dual-wave if you are hyperglycemic and need a correction bolus), or you can wait an hour and then give a normal bolus. Make sure you adjust your bolus to what you actually ate, because I guarantee that during your acclimation period you will not eat nearly as much as you think you might when you sit down (this is the advantage of waiting to bolus post-meal).
It is easy to lose track of time and forget to bolus- I have done so a few times with unfortunate and predictable consequences. Try both methods and see what works better for you, or create a hybrid of your own. I switch between the two methods depending on what I am eating, the time of day, what my present blood glucose is, what activity I have planned for after the meal, etc… Some experimentation, careful experimentation, is necessary. You do have that glucagon kit, right?
Those of you on MDI are in a tougher spot. You can use intermediate-acting insulin, (Humulin R or the equivalent would probably be good) or just give the shot an hour after you eat.
Here is where it is exceedingly beneficial to have a CGM- you can watch your blood glucose rise or fall and find out more precisely how the Symlin, insulin, and food all interact. Either way, check your levels often post-meal.
It is better to err on the side of temporary, minor hyperglycemia when first starting Symlin than it is to risk severe, difficult-to-treat hypoglycemia. This cannot be overstated. That said, it is time for the most important part of this post. . .
Symlin and Hypoglycemia
By now, you are likely beginning to understand the potential for hypoglycemia with Symlin use. I have never had as many hypoglycemic episodes in my 14+ years as a diabetic as I had during the months I was adjusting to Symlin use. It was difficult to make the mental leap that I did not need to bolus as I had been for the years prior. Let’s go over the basics:
Symlin slows digestion to what you might at first consider a slow crawl, by way of reducing the rate at which your stomach empties.
Symlin significantly reduces the amount of insulin you need to cover a meal, primarily by signaling your liver to stop dumping its glycogen stores into your blood during the few hours after you eat.
It is therefore, easy to over-bolus (particularly at first during acclimation), and be in a position where consuming carbohydrate will not raise your blood glucose quickly due to #1 above.
Yikes. But like I mentioned previously, it is manageable and nothing to be scared of, especially if you follow my bolus guidelines which unfortunately I learned the hard way. My endocrinologist still isn’t completely comfortable with the fact that I do not take any insulin up front with my meals, but my lack of severe hypoglycemic episodes and good A1c speaks for itself. Nevertheless, I keep my glucagon kit handy and you should too. Expect the hypoglycemia risk to be present from your very first 15mcg dose.
When eating late at night and/or while intoxicated you must be exceedingly cautious with your Symlin dosing!
Next up is the third and final segment where I will cover more about exercise and Symlin, when you may want to skip a dose, and potential train wrecks (some of which I have experienced so hopefully you won’t have to!). Let me know if there is anything else you’d like me to cover. Thanks for the feedback thus far, it has been helpful in deciding what to include here.