A Practical Symlin Guide for Type 1 Diabetics - Part 2: Acclimation, Meal Boluses, and Hypoglycemia

Community Share Your Stories
1

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!

Acclimation

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:

  1. Symlin slows digestion to what you might at first consider a slow crawl, by way of reducing the rate at which your stomach empties.

  2. 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.

  3. 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.

1 Like
2

THANK YOU for this info… I finally feel like I have some data instead of a quick doctors visit, trying to understand how it works. I started Symlin (after hearing about it and asking my doctor) and I’ll see how it goes. I’m nauseaus and determined! I do want to lose some weight, but just feel better. I hope it helps. It is weird because I’m on Humalog, Lantus and Symlin- all pens. Please keep the updates coming.

3

You’re very welcome, and please, if you have tips for other Symlin users who are not on pump therapy please do pass them along. I have not been on MDI for over 10 years, so I want to make sure people on that kind of therapy are covered too. Good luck and stick with it through the nausea. It’s worth the trouble!

4

so far you’re right on target with my experience. My breakfast bolus has remained the same, but there is very little if any spike. My lunch and dinner bolus’ are about 50%. Looking forward to the 3rd installment. Keep it up! dave

5

That’s a strange coincidence- my breakfast bolus is not the same as before, but it is not reduced nearly as much as my other meals. There could be something to that. Are you on 60 or 120mcg?

6

Arielle-

I agree that the hypoglycemia issue is the most difficult challenge in starting on Symlin. But it isn’t something that is always a problem. You do adapt and learn how to integrate it into your regimen over time. I can’t imagine many Type 1s having a problem with a few more injections. MDI Type 1s are already taking several a day. I was taking between 6-10 injections a day on MDI for tight control and a few more or less didn’t strike me as a severe reduction in my quality of life. When whole blood glucose testing arrived on the scene, I’m sure 8-10 finger pricks a day certainly was a major inconvenience in comparison to ■■■■■■■ on a stick, but the upside was that such testing essentially allowed you to become less of a diabetic. Your liver is not supposed to be dumping sugar into your blood while you eat, and your stomach is not supposed to constantly be emptying food and speeding up digestion far beyond what non-diabetics experience. You need the glycogen in your liver for when there is not enough glucose in your bloodstream, such as when you exercise or have to suddenly exert yourself beyond what your glucose reserves can withstand. This is how non-diabetics function and it is how I want to function, too.

Your body needs amylin/Symlin. It can live without it, but it is set up to function with it and it may confer benefits that have yet to be discovered. With regards to the hypoglycemia scenario you describe, it is possible to treat hypoglycemia while on Symlin. I will cover more about that in part 3, but certain things work, such as keeping the glucose (I prefer honey packets) in your mouth for as long as possible where it can be absorbed through the capillaries there. It certainly is more difficult to treat hypoglycemia like this, but if you follow my meal bolus guidelines you will be able to avoid this problem. In any event, like I said in Part 1, if you have issues with hypoglycemia now, it is best to get that under control before starting Symlin and if you cannot do that, it is best to leave Symlin alone.

I suppose I should provide more background about myself at this point. I am a person who believes in taking advantage of every possible tool in order to control my diabetes. That means a pump, CGMS, Symlin, carb restriction, insulin analogs like Apidra, and so on. I do this because I want my body to experience as little of the impact of Type 1 diabetes as possible. I’m not saying everyone should take my approach or even that it is right for everyone. It is simply my opinion and it is not better than yours or anyone else’s.

1 Like
7

You asked, “That’s a strange coincidence- my breakfast bolus is not the same as before, but it is not reduced nearly as much as my other meals. There could be something to that. Are you on 60 or 120mcg?” I"m on the 120mcg dose. I eat a cup of steelcut oats and some sliced peaches for breakfast almost every morning. for that combination of carbs, i need to inject 12U along with the Symlin. I dose a combo bolus of 50% up front with the balance over 1.5 hours. As long as I’ve started at a reasonable level, my BGs rise about 30 points. For lunch I take the Symlin, then bolus about 50% less insulin an hour later and the BGs stay flat. I have to be ready to eat when i do the Symlin at lunch though. If I’m not ready to put food right in my mouth, i have pretty stong hypoglycemia. the same holds true for dinner. My guess is that there is some Symin working from breakfast that gets a “boost” by the Symlin at lunch. The same wiht the dinner Symlin. If I skip the Symlin at lunch, the effect is much less pronounced at dinner. Make sense?

1 Like
8

Thanks, David! I am going to try your 50% up-front/50% over 90 minute breakfast bolus method.

I’m not sure how much time elapses between your breakfast and lunch, but with a 45-minute half-life and a 120mcg dose, I can definitely see a small amount of Symlin still being active if it is just a few hours later. I rarely have hyperglycemic issues in the morning or early afternoon. Those tend to show up in mid to late afternoon for me.

One issue I am working on figuring out for part 3 is how to deal with high-protein meals. Those seem to give me the most trouble due to the fact that the protein is metabolized into glucose over a much longer period of time and thus is not affected as much by the Symlin. Essentially, these meals affect me like a 3 hour square-wave glucose infusion and that has been a challenge.

9

We could probably accomplish the same result by upping our basals in the morning as long as we know we’re going to eat. But some mornings I skip breakfast and my basals hold me steady w/o food. I’ll test a high protein dinner (virtually no carbs) tomorrow and get back to you with the results. I’m still trying to figure this out also.

10

Thank you for the info. I have had diabetes 25 years now and just started Symlin this week. I have found 50% reduction in lunch and dinner insulin (I only take Symlin at these 2 meals currently) at the 15mcg dose. Did you find your 50% reduction only once you’d reached 120mcg? Or do you become more sensitive to the Symlin and need to keep increasing it to maintain a 50% insulin reduction? I take shots…Lantus 2x a day (my own experimentation showed I was much better off splitting my total Lantus dose into one morning and one at night…I haven’t read through this website so maybe that’s something you’ve all known for a while) and Humalog with breakfast and dinner. I take Humulin R at lunchtime (also my own experimentation, I found my blood sugar would continue to rise and rise after lunch if I took Humalog…Humulin R has a much better “curve” for me). I just started 15mcg Symlin 2 days ago with dinner. Although I’m a Type1 diabetic with adrenal fatigue and hypothyroidism and am taking a number of different drugs for these, and other, issues (or maybe BECAUSE of all that) I am very conservative when it comes to taking new drugs if I don’t have to. My weight (steadily increased total of 50 pounds over past 10 years) has become a serious issue, and my endo told me at most recent appointment I’d never lose weight at the insulin doses I’m taking. I’m thrilled with the decrease in insulin the Symlin has already shown. In addition to the question at the beginning (sorry, I’m VERY wordy person, I know), I was wondering, ONELESS, how you learned what you did about Amylin and how it works in the body, and about the metabolic differences between diabetics and non-diabetics? I understand a lot of your info comes from your own experimentation, but these details seem like they’re more factual than personal experience…? Lastly, I wanted to mention (though it is in the Symlin literature) gastroparesis (I believe it’s called…delayed stomach emptying) which some diabetics do have. This may be (and I have no evidence of this except for the mention in the Symlin literature, and what I read in Dr. Richard Bernstein’s book about gastroparesis) another reason some people might not be able to take Symlin…
Thanks again.
Teressa

11

Teressa-

Thank you for your comments. I should have mentioned the gastroparesis issue in my first post, and am planning on including it in part 3. Some diabetics have damage to the vagus nerve which can in turn cause delayed stomach emptying. I am not a doctor, but hopefully yours would not prescribe Symlin to you if you had this condition.

I have scoured the web for information on amylin and Symlin, picked up some books at Amazon, and talked to two endocrinologists, one nurse practitioner, and two pharmacists about it. I have done a lot of experimentation with it too and this guide represents the knowledge I have accumulated through those efforts.

I am presently at about a 70-75% reduction in mealtime insulin. I did have the 50% reduction at first with the 15mcg but I only stayed at that dose for 3 days so I don’t know what would have happened had I kept going. I got to 120mcg just as quickly as I could, pausing only as much as I needed to in order to deal with the nausea and gastro upset.

You should see some good weight loss from Symlin- this really picks up at 60mcg and higher.

12

I didn’t really notice i was eating less, but when i went to the ENDO I was 6 lbs. ligher than 3 months before so there must be someting to it. What i eat has remained constant, I must just have reduced the quantities.

13

Josephine, you certainly can use Symlin if you don’t use “a lot” of insulin. It will definitely help with the hunger pangs. I am rarely hungry, usually only at mealtimes and then it goes away in about 10 minutes after I start eating. Before Symlin, I was always hungry, even after a big meal. It was a terrible way to deal with food.

14

I have been on symlin about 3 weeks now…just up to the 60 dose–my endo does not want me to goto 120 because of the lows.I am running slightly elavated buecause I have cut my insulin 50% f(i actually cut lunch a bit more) or all meals since dose 1. They want me to wait another week (after my works horrid quarter end -ended last night around 11–16 hour + days all week) to let my body settle in before resetting basals and working on waht meal time doses should be. I also see an small issue with high protein meals–but I am very much enjoying ot having that horendous spike after every meal!

15

Good for you! It will take some time to work out the details of what works for you, but it will come in time. I started on the Symlin around the same time I started on the pump so I don’t have much to compare it to. I just know I don’t have large spikes after breakfast (my worst time when on MDIs) and it cuts my insulin needs in half for all other meals. I don’t think it did a thing for my basals, but then I don’t have anything to compare it against. Keep us posted on your progress.

16

Great job, Denise! I know the initial adjustment period can be a hassle sometimes but once you settle into a routine you will wonder how you ever lived without it. Like David, Symlin did not have any effect on my basal rates.

Perhaps you can hit 120 in the future once you have everything figured out at 60, but you and your doctor know best with regards to the hypoglycemia. It is not as if staying at 60 permanently would be bad thing by any means.

17

doubt that I would be able to go up to the 120 as I am very insulin sensitive–the symlin has smoothed out my bg overall…getting a nice line most days–albiet a tad high at the moment…but once things settle down I might try the 120 over a weekend (I have a great husband who will help watch over and a couple of glucagon kits handy)

18

I remember asking my NP when she recommended I move to 120, “Well I’m taking so little insulin for meals at 60mcg, am I not going to bolus at all if I go to 120?” She laughed and said the bolus difference would not be so dramatic, but that the appetite suppressant effect would be greatly enhanced. That was more or less the case. I still bolus for meals, but at about 70% less insulin as opposed to about 50% at 60mcg. On the other hand, hunger is a rare feeling for me now.

19

I have definitely felt the hunger-reduction effects, for which I am undeniably grateful…I am no longer constantly thinking about food and eating, which will aid my weight loss just as much as the reduction in insulin. I will admit to being VERY frustrated, though…I am up to the 45mcg dosage (after starting Symlin about 10-11 days ago). I have cut my insulin in half for all 3 meals. I take Humulin R right after my Symlin, then eat. I notice my sugars will dip about an hour after eating, but then they steadily rise until I’m quite hyperglycemic. :frowning: I don’t know what to do…this has been going on since I started the Symlin, and is much worse than before I started. I don’t think I could/should take any additional insulin in the bolus, since I’ll go too hypoglycemic before the glucose starts hitting the bloodstream…but I can’t keep having these highs, either. Would you suggest taking insulin (even Humulin R) after eating? Or increasing my Lantus (basal insulin? Not sure of terms…haven’t been on TuDiabetes very long)? I would be so sad to take any extra insulin, since that would defeat the purpose of the Symlin…which for me is purely insulin reduction/weight loss. If I took extra insulin post-meal or increased basal doses, I feel I’ll lose all benefits. Any suggestions Oneless, David, others who’ve been through this experience? Thanks!

20

Are you on the pump? I take the Symlin and then bolus for the meal about an hour after eating. I use an extended bolus and have the insulin delivered over a 90 minute period. Because the Symlin slows the digestive process, the delay in giving the insulin works for me. I think you’ll find others agree with this approach.