It took me a while to realize that I don't remember having the kind of pressing hunger that I've lived with for the past 12 years before I was diagnosed with Type 1 Diabetes. I ate meals whenever I got around to it, occasionally but rarely needed to snack in between them, and felt full after what I felt like was a normal portion size.
My hunger crept up on me somewhat gradually, and has waxed and waned throughout my years with Diabetes. In undergrad, I was able to eat massive portions (for me) in the meal hall - a huge plate of salad piled up, chicken, vegetables, and then two or three servings of diet soda just to make my stomach feel more full from the fizz. I had a fridge in my room for snacks after dinner. Thankfully, with access to large portion sizes of relatively healthy dining options, I was able to manage my hunger quite well in college.
In grad school, I would anxiously wait in between classes to eat my between-meal snacks twice a day, barely able to think about anything else until I did. I would eat and then two hours later, feel absolutely ravenous after. I would eat a large lunch, and always try to go straight home to eat. Afternoons have progressively become the worst.
When I lived alone, I could compensate more easily for it. I'd leave work around 5, and then eat my pre packed dinner before 6:15 yoga class. Then I'd go home and have a huge snack, usually a giant bowl of popcorn (about what you'd get in a big bag at the movies, I always made it myself) and a drink or two until I finally felt full. Life with another human was harder, because I'd have to eat two or three snacks after work just to tide myself over until dinner around 7, or I'd skip my workout all together because I was so hungry, and just choose to make dinner earlier. Having to run an errand before dinner felt nearly impossible, because all I could think about was how hungry I was, and I would feel irritated and have trouble concentrating until I could get home to make dinner, snacking the whole way through cooking until dinner was ready. I'd go back for 2, sometimes 3 portions, and still go to bed feeling hungry from eating early.
I had read about Amylin back in undergraduate school, raising my eyebrows as I sat at my work study desk in the admissions office, wondering if this was why it felt like I was hungry all of the time. I would rush to the dining hall right at noon for lunch, and then right back at 5, like clockwork, barely able to wait for mealtimes to begin, and it felt like no matter how much I ate, I could always eat more, if I let myself. Funny enough, I actually learned about amylin in an animal physiology class as I was pursuing my Biology major, where I learned that pancreatic beta cells secreted more than just insulin.
What I learned in a college level science course was something that no medical professional had ever mentioned to me. No one had ever told me about Amylin, or the fact that insulin was not even the only thing that my body was incapable of now producing. Amylin is a second beta-cell hormone. In case you're not familiar with the physiology of Diabetes, Type 1 Diabetics have an autoimmune disease that develops when our T-cells (immune system) attack our own pancreatic beta cells, rendering them unable to produce insulin. However, it also renders our cells unable to produce amylin, too. Amylin is co secreted with insulin, and whereas insulin allows our cells to absorb sugar and carbohydrates, amylin helps to keep glucose from entering our blood stream by suppressing insulin's counterpart, Glucagon. While insulin lowers blood glucose, glucagon raises it, and in a normal person, your body controls these two hormones in sync, allowing for perfectly controlled blood sugar levels. (Note, Amylin is different from Amyloids).
Our Beta cells also create something called C-peptide, but I won't get into that here.
Amylin does a couple of important things. Firstly, it slows the rate of stomach emptying, meaning that food leaves the stomach slower. This is important for 1.) post meal fullness, but also 2.) Slowing the rate of rising blood sugar after a meal. It's worth noting that blood sugar rises in Diabetics post-meal or drink far faster than in our non-diabetic counterparts (in about 10-15 minutes), simply because food leaves our stomach so much faster. And as such, that means we are also hungrier quicker after meals, so not only is our appetite not well suppressed, but it's also not suppressed for as long... hence my feeling hungry 2 hours after a meal.
Amylin also helps us to feel full during meals. Amylin helps to reduce the amount of glucagon secreted by the liver when we eat. Glucagon is essentially sugar that the liver produces. Glucagon is also one of the reasons diabetics cannot survive without insulin, because your liver will keep releasing glucagon naturally into the bloodstream without insulin to suppress it. (This is why in a Type 1, mealtime insulin isn't enough. We need a "basal", or 24 hour, insulin to help suppress that glucose that enters our bloodstream from the liver. Glucagon also stimulates the appetite. So, as we eat, Amylin suppresses glucagon release, and as such, we are also signaled that we are full. Without Amylin, our brain isn't properly signaled that we are full, and as such, it oftentimes takes the actual feeling of pressure from our stomach to indicate we are full, oftentimes many large helpings and portions later, at least in my case.
Amylin is secreted in equal amounts to insulin in a normal body, and truly, our body cannot properly regulate blood sugar without it. It's a little wild to think that insulin is the sole treatment used to treat Type 1 Diabetics, and that perfect nondiabetic blood sugar is expected when we're only using a third of our beta cell hormones to manage our blood sugar.
It's worth noting that actual Amylin isn't stable enough to be used in drug form, and thus an analog version, Pramlintide, aka Symlin, was created in 2005.
It's also worth noting that lack of Amylin has been attributed to cognitive decline and low bone density in later age in some high quality studies.
Unfortunately, at the time that I learned about Symlin and started to realize that my excessive hunger wasn't normal, was also a time when I had out of state Medicaid that didn't cover anything except the bare minimum - certainly not Symlin. In fact, most insurances to this day either are reluctant to cover Symlin, or don't cover it at all.
As I went on through graduate school and had no insurance, no access to a medical professional, and no access to consistent insulin supplies, Symlin was out of the question - I just needed to survive. But it always stayed in the back of my mind, and I managed my hunger as best I could, with snacks always packed and eaten frequently. Even when I did have insurance, it was always a struggle to afford copays for my insulin pump, my CGM, and even my insulin - so I didn't even bother to press the topic.
It wasn't until I switched to my husband's insurance this year that I even considered having the conversation, because finally, I had access to insurance to cover things more affordably than I'd ever had before. Even my last employer's insurance indicated that my close looped insulin pump that I'd fought for 1.5 years to get was going to be a $350 copay per month, and I was so grateful to end up leaving jobs and choosing to switch over to my husband's insurance just for the peace of mind of a reasonable copay for my pump.
My fasting blood and between meal blood sugar has always been good, but I'll be the first to admit that I developed some bad habits as a diabetic who couldn't afford good care, and I struggle with injecting insulin 15 minutes prior to every meal (that's how long it takes to start working), and then continuing to monitor and adjust my insulin levels after. We don't really give enough credit to how hard it is to estimate how many carbs we're eating, consistently give it before meals (especially when you are starving because your body doesn't make amylin), and then to continue to monitor after, especially with the rigors of work and life. It's a huge mental drain. And it's for every meal you'll ever eat for the rest of your life, so hug a Type 1 Diabetic next time you see them. It’s tough out there. Thus, my post meal blood sugar control leaves work to be desired, and after 2 years of going back and forth with my doctor, with little improvement, I think we were both feeling frustrated. My doctor basically told me "I don't know what else to tell you." I had tried a faster acting insulin once, Fiasp, but I just couldn't afford the copay at the time of $190 a month for a single vial, and thus I left that experience feeling a little burned out and sticking with my $35 humalog.
At my February appointment, I finally mentioned to my doctor that I had been struggling with somewhat insatiable hunger issues for years, and that is was causing me to often overeat, skip exercise so that I could prepare meals sooner, and I believe made it at times harder to control my blood sugar. "I can try to prescribe Ozempic," she stated, "But it's going to get denied, you're not obese or Type 2." I had read recently that GLP-1's like Ozempic could help Type 1 Diabetics, because they helped replace those hormones we don't make, but sure enough, 2 weeks later I got my denial letter. (Note: GLP-1’s differently than Symlin). I was annoyed, but in retrospect rather happy, as the lack of long term use studies of Ozempic concern me, and the side effects are difficult to manage. Symlin is a far safer fit for my body. My endocrinologist went on maternity leave, and then cancelled my August appt, so the next time I could see her was October. In October, I once again mentioned my hunger issues, and this time I pressed for her to try Symlin for me. She was somewhat resistant. "We can try," she said. "If insurance will cover. And do you really want to give a shot at every meal?"
"I want to try," I told her. Besides, what was more needles to a Diabetic, anyways?
It took a frustrating 3 weeks of back and forth to get my doctor's office to even file the prior auth, and even then, once it was approved, I was informed that my copay for a month would be a whopping $289 dollars. I spent 3 combined hours on the phone with insurance begging them to do something. Symlin is off formulary, and as such, I pay tier 4 pricing, meaning I shouldn't pay more than $250, but since a month's supply "is technically 41 days", I pay $289. After being informed that I should either "make more sacrifices to afford it if I want it" and "just ask your doctor to put you on a cheaper alternative" (which there is none, there's literally no other version on the market), and a good cry later, I found a coupon to bring the price down $100. I almost decided against it. It felt exorbitant, and once again I found myself at the pharmacy being asked "Are you aware of the price?". At least this time, I could at least pay my large copay. I told myself I'd try it for a month, and if I didn't notice any improvements, I would stop.
Despite Symlin being around since 2005, only 5% of Type 1's are on Symlin. Even my pharmacist at a busy metro Atlantra grocery store pharmacy in the Southeast told me that she had never had anyone order Symlin before, and they had to special order it. There are several reasons for this, some of which I've addressed.
1. Many insurances don't cover or it's off formulary. My insurance is some of the best there is, and even with that, it's classified as tier 4 off formulary.
2. As such, even if insurances do cover, it's oftentimes very expensive
3. It's needed for proper blood glucose control in combination with insulin, but since we can live without it, unlike insulin, it is rarely discussed
4. It involves administering a shot with every meal, which is yet another cumbersome medication to keep up with for already needle fatigued and generally fatigued diabetics
5. It doesn't save our lives, so again, maybe it's easy not to care about it
6. It's not taught to Diabetics
7. (Opinion) Health care providers are uncomfortable prescribing it. Even my pharmacist did not know how to administer it without reading the instructions in front of me, and told me the wrong info. I had to look it up later. My doctor didn't tell me how to prescribe it at all. I just had to sort of figure it out. I was also the one who had to research Symlin, advocate for myself to be put on it, and fight every step of the way for it. And even then, my insurance makes it difficult for me, despite it being a hormone my body doesn't make.
Symlin unfortunately also is more acidic than insulin, therefore it cannot be mixed with insulin at this time. I do honestly believe that if Symlin's importance were to be better promoted, that more studies could focus on combining the two. A few studies have tried, but unsuccessfully so far, but studies do indicate that this should be a focus for the future.
Despite it being somewhat of a nuisance with an extra three shots every day, and despite the price, I have noticed such a drastic improvement in my hunger levels, as well as improving glucose levels in just two weeks, that I am motivated to be an advocate for Symlin. I want to raise awareness for this hormone so that other Type 1 Diabetics realize that just prescribing insulin should not be the only focus in our care. We deserve better. And for the first time in years, I finally have normal hunger levels. I wake up, have my coffee, can leisurely enjoy a light breakfast, and I don't count down the clock until lunch. I have a normal portion, feel full after, and don't have to rely on constant snacks to get through the day. I may have a light snack here or there, but I generally feel pleasantly full. My portion sizes have shrunk to normal helpings, and I feel satisfied and full while I eat, which is something I haven't experienced in years. I don't have to arrange my day around wanting to be home right at 5 to cook dinner, that extra errand before meals doesn't leave me hangry and reeling, and I actually feel in control of my meals, instead of them controlling me. It has really so drastically improved my life, and I'm hoping more discussion around it can help make it more affordable and more accessible for Type 1 Diabetics.
Many people have said that insulin makes you gain weight, but I actually think it may be more attributable to the lack of amylin. (It's natural to gain weight when starting insulin, as your body has effectively been starving without it. Insulin in studies hasn't directly been linked to weight gain).
Side effects are minimal - some light nausea in the beginning (I did have one wave of nausea the first week that almost made me throw up one time, but nothing so severe since then), and for me, a tiny bit of dizziness the first two weeks. It stings a little to inject due to its higher acidity, but it's not bad. My weight has been stable, and Symlin generally leads to just a small loss of weight (5-6 pounds), and more importantly, better A1C levels.
I'll definitely update on my journey in a few more months. In the meantime, I feel really privileged to be able to afford to try treatments such as Symlin, and I think it highlights the important of advocating for yourself as a patient if you feel you could be doing more to improve your health and your care.
