Why I Called Quits on Metformin

This post was originally published on Hugging the Cactus on December 6, 2019. I’m sharing it again today as a follow-up to Monday’s post, which explained how I was introduced to Metformin. This one covers why I decided to call it quits on my Metformin journey. Read on for the full scoop…

Well, well, well…looks like I’ve got another Metformin update for you all.

You’ve probably lost track of where I am in this long, twisting journey with the pill. (If you need a refresher, all you need to do is click here and read through my original posts.)

All caught up? Great. Now you really understand how complex my relationship with Metformin is.

There were times that I loved it. There were times that I hated it. And there were times when I simply couldn’t be sure if it was working for me the way that I’d hoped and needed it to.

I thought Metformin was right for me, but it turns out it definitely is not.

This last go-round represented the latter thought: Metformin simply wasn’t cutting it for me.

I’d been taking one pill daily for about a month when I decided to quit. The reason why I stopped taking it is simple: I wasn’t noticing a dramatic reduction in how much insulin I take each day. It was maybe a one or two unit drop, and that just doesn’t justify me taking a pill like this on a daily basis.

Now, you might be wondering why I didn’t amp up my dose. After all, it says right on the bottle that I can take up to four pills daily. Well, I chose not to take more for a few reasons: 1) I’m in between endocrinologists right now, and don’t really have anyone to consult regarding dosage, 2) At one point in time, I thought I noticed side effects of taking Metformin, and I’ve convinced myself that any possible side effects would intensify with a higher dose, 3) I wasn’t sure whether the higher blood sugars I was dealing with in the fall were due to stress or permanent changes that my body was experiencing.

So yeah, as you can see, it’s not a cut-and-dry answer when it comes to me increasing my Metformin dose.

I feel like I’m in a better place now with my blood sugars and daily insulin intake. Certainly, things have improved compared to how they were in September and much of October. Rather than fret over taking “too much” insulin every day, I’m going to focus on things that I have greater ability to control, such as the foods I choose to eat (that may or may not impact how much insulin I need) and the levels of exercise I get each week. I feel like that’s a healthier, better way to take care of myself.

So…farewell, Metformin. I won’t miss you. I know you do great things for other people with diabetes, but I’m not sure that you and I are a good match.

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Molly, Meet Metformin

This blog post was originally published on Hugging the Cactus on February 25, 2019. I’m sharing it again today because when I initially started taking Metformin, I felt really alone because I didn’t know any other person with T1D who was also taking it. It is my hope that talking about my experience helps someone who might feel similarly or would like to hear from a fellow T1D what it was like to start Metformin. Read on for more…

You may have read the title to this post and said to yourself, “Met-WHAT?”

Metformin is the new medication I’ve started taking (along with my typical insulin) to help regulate my blood sugars.

Maybe you didn’t make it all the way to that second sentence; instead, maybe you just Googled Metformin to learn more about it. And you probably immediately got confused, because the Google search results explained that Metformin is a medication normally prescribed to people with type 2 diabetes. You know that I have type 1, though, so what gives? Why am I taking this new pill?

You see, for about a year or so, my endocrinologist has been gently encouraging me to try Metformin. She expressed concerns over the fact that I’ve had diabetes for more than 20 years, and in that span of time, I’ve had to take a lot of insulin. Like, an incalculable amount. And while that insulin helps to keep me alive, there’s also risks associated with it. Namely, she explained to me that there’s research that indicates that people with type 1 who rely on large amounts of insulin have a higher risk of developing cancer later in life.

It took a long time for me to feel ready to try Metformin, but I’m glad I didn’t start it until I was comfortable doing so.

Whoa. The “c” word. Something I never thought I’d hear during a doctor’s appointment. If you know me personally at all, then I’m sure it’s not hard to imagine that I pretty much shutdown at the mention of “cancer”. Almost immediately, I panicked and asked why she thought this research was worth mentioning. She said that it was part of her reasoning for wanting me to start Metformin. The idea is that it would make my insulin more effective, and ultimately decrease the amount of insulin I need each day. She went into a little more detail, mentioning that the only side effects tend to be nausea/upset stomach – and that’s when I stopped listening. I politely told her that I didn’t think Metformin was a wise option for me at that time, and later that day, when I took to Twitter to ask other T1Ds what they thought, I gained swift validation that I’d made the right decision: Other T1Ds with Metformin experience told me that the stomach issues they had when taking it were miserable and that they wouldn’t recommend giving it a try. Plus, I consulted with my T1D pharmacist aunt, and her opinions matched those of the other T1Ds on Twitter. So that was all I needed to hear to feel at peace with my choice to not take Metformin.

In fact, it was enough for me to turn my endocrinologist’s offer down during our next two or three appointments. I was relieved that she never pushed me to try it, but there was a small part of me that wondered whether I should give it more serious consideration. Maybe I should let her talk me into a little, rather than brushing it away and using fear as my excuse.

So we did talk about, during my most recent visit with her earlier this month. She gave me some more compelling reasons to consider taking it. Not only could I reduce my insulin intake, but it might also help me with some preexisting digestive issues I’ve had since childhood. When I asked her about the negative side effects on the stomach that I’d read about online, she told me that she would only prescribe me the “extended release” version of Metformin, which had a much lower (if any) chance of inducing nausea or any less…desirable gastrointestinal disorders.

This news definitely perked me up. We discussed a plan for introducing Metformin to my body: Start by taking one pill daily after dinner. Increase by one pill each week until I’m at four pills per day, the limit. At any point in time, I could message her with questions if I started to notice low blood sugars in the evening.

I felt reassured by this logical plan, as well as her explanations of the benefits of Metformin. So I bit the bullet and I’m in my first week of incorporating it into my post-dinner routine. I can’t say that I’ve noticed even the slightest difference, which isn’t a bad thing. I imagine that will change as my dosage increases.

I intend to blog about this new journey with Metformin; not just for the sake of keeping track of how it affects me, but to also help inform other T1Ds who may have been or may be in the same situation that I was. We’ll just have to see how it goes, but for now, rest assured that I’ll be honest in my writings about my Metformin experience. At this moment in time, I can’t help but feel hopeful that down the road, I’ll be glad I made this decision when I felt ready for it, as opposed to when I was fearful of it.

Reflecting on my Experience with Metformin

A couple of years ago, I wrote a blog post series about my experience with Metformin. As I was paging through my blog, looking for either an old post to republish or inspiration for a new post to write, I came across that series and got to thinking about how I felt on Metformin.

If you aren’t familiar with what Metformin is, it’s an oral medication that’s typically used to help stabilize blood sugar levels for people with type 2 diabetes. This is where you might be thinking…I (Molly) have type 1 diabetes, so why was I prescribed this medication?

Well, my endocrinologist at the time wanted me to try taking Metformin in tandem with doses of insulin in an attempt to reduce my overall insulin needs. She expressed concerns that my daily insulin intake was high (something I disagree with now, as I think about it a couple of years later), and that she had some general awareness of studies that indicated it might not be good for my future health if I continued using so much insulin each day. (Note: I don’t know what study or studies she was referring to, and this is where I should’ve done more research before just taking her word for it and going on the pill. This is an example of poor patient advocacy on my part.)

I did not enjoy my time on Metformin.

Even though I met her sentiments with skepticism, I trusted this endocrinologist, so I decided to give Metformin the old college try. And I hated it. Hated it! I tried taking it per my doctor’s instructions for two separate spans of time (each lasting a month or so) and made the decision to stop using it because I simply didn’t see that it was making any sort of difference. Actually, it was affecting something, just not my blood sugar levels or insulin intake – it was affecting my anxiety levels. I was afraid that Metformin, coupled with my insulin, would cause me to have low blood sugars all the time. While in reality, I didn’t experience many lows, I was still always paranoid about them and it was an unpleasant thing to have to deal with.

So now, about two years later as I think about these ineffective encounters with Metformin, I realize that I should have done a lot more before even considering taking it. I should’ve asked more questions. I should’ve done more research. I should’ve asked around the diabetes online community to see if anyone had advice for me. I should’ve pushed back more with my doctor to get to the bottom of the reason(s) why she wanted me to take Metformin. Going back to my point above…this was a big lesson in patient advocacy. It’s important to ask questions and gather all the facts, especially in situations like this where there was so much uncertainty, in order to receive the best care possible. And it’s important to remember that even the most trusted and well-liked doctors aren’t always right when it comes to the medical guidance they suggest or give. At the end of the day, I’ve got to keep in mind that nobody knows my body and brain better than I do, so it’s okay to challenge the authority of the experts (in a respectful, kind way of course).

Why I Decided to Get Baqsimi (and How I Got It)

Say hello to my new little friend…Baqsimi!

For anyone who may be unfamiliar with Baqsimi, it’s a relatively new form of glucagon that comes as a nasal spray. I haven’t had to use it yet (and I hope that I don’t ever have to, really), but there’s a lot of pros to Baqsimi when comparing it to a traditional glucagon kit:

  • It’s shelf-stable – it doesn’t have to be refrigerated.
  • It doesn’t expire until 2.5 years from now.
  • It’s completely ready to go as-is, no mixing or measuring needed.
  • It’s compact and totally portable.
  • It’s easy to use (and understand how to use!).
Baqsimi is incredibly easy to use: remove shrink wrap, insert into nostril, and push plunger all the way in to dose. That’s it!

All of those factors contributed to my decision to finally pull the trigger and ask my endocrinologist about writing a prescription for me. It’s not that I’m suddenly worried that I’ll need Baqsimi; for me, it’s more of a peace-of-mind situation. I always thought that my glucagon kit was next to impossible. Sure, I know how to use it, but I have to refresh my memory every so often because there are so many steps involved in the process: inject the syringe into the vial, mix the contents, wait for the glucagon to turn clear, stick the syringe back into the vial, withdraw the liquid, and then finally do the injection…there’s a lot going on there. And if I actually did need glucagon one day due to a severe hypo, I wouldn’t exactly be able to easily walk whoever I was with through the process because I’m sure I’d be totally incapable of doing so (depending on how bad my symptoms were).

It’s just a lot to ask of every single one of my family members and friends to know exactly how to inject glucagon into me in the event I ever needed one of them to do that, so having Baqsimi on hand takes so much of that fear and anxiety away.

And the icing on top of the cake is that it was super easy for me to get Baqsimi…like, it only took a few hours, which is amazing. All I did was reach out to my endocrinologist’s office using their online messaging system, ask my doctor for a script, and…bam. It was sent into my local pharmacy, and before long, I was cruising through the drive-thru with my dog to pick it up. I’m lucky, too, because all I had to pay was $25, thanks to my insurance (sometimes, it’s not as bad as I think it is).

Twenty-five bucks for peace of mind and a life-saving medication…that’s something I can get behind. I’m glad Baqsimi has finally joined my diabetes toolkit.

My Pharmacy Mailed Me a Broken Vial of Insulin. Here’s How I Handled It.

As soon as I opened the package, I knew something was wrong.

The contents of said package were five vials of insulin – my regular 90-day supply. On the surface, nothing seemed wrong. They arrived in their usual styrofoam cooler that was taped shut. After removing the tape, I saw four ice packs next to the plastic packaging containing the insulin vials; again, this was all expected.

When I picked up the plastic package and used scissors to cut it open, though, a pungent odor greeted my nose.

A medicinal, harsh, familiar scent…the smell of insulin.

Upon further investigation, I discovered that one of the five cardboard boxes encasing the vials was totally damp to the touch. Gingerly, I opened it from the bottom flap, which was sticking out slightly due to the wetness. That’s when I saw the shattered insulin vial: Somehow, the bottom part of the vial had broken, spilling and wasting all of its contents.

I wish that smell-o-vision was a thing, because OMG…the smell coming from this was STRONG.

I was shocked. In all my years of diabetes, nothing like this had ever happened to me before!

I didn’t really give my next step a second thought: Immediately, I jumped on the phone with Express Scripts, which is the mail order pharmacy that I use for my insulin and some other medications. I spoke with and explained the issue to a customer service representative, who connected me with a technician that promised a replacement vial would be mailed to me at no additional cost to make up for the broken one. I asked if they needed me to send the broken one back to them, but I was reassured that it wouldn’t be necessary because I had called them so they could document the incident.

My issue was resolved, just like that, in fewer than 15 minutes. While it was annoying to have to take time out of my day to figure that out, I’m very happy that I got a replacement quickly and easily. But really, where was quality control on this one?!

Insulin is expensive, as we all know. And to see that a perfectly good vial full of it was rendered useless due to defective packaging was a major punch to the gut, indeed.

But this reminded me of the importance of being proactive whenever I suspect something is wrong with any of my diabetes supplies…when in doubt, do something about it.

Metformin Update #5: Calling it Quits

Well, well, well…looks like I’ve got another Metformin update for you all.

You’ve probably lost track of where I am in this long, twisting journey with the pill. (If you need a refresher, all you need to do is click here, here, here, here, and here.)

All caught up? Great. Now you really understand how complex my relationship with Metformin is.

There were times that I loved it. There were times that I hated it. And there were times when I simply couldn’t be sure if it was working for me the way that I’d hoped and needed it to.

METFORMIN UPDATE #2.png
I thought Metformin was right for me, but it turns out it definitely is not.

This last go-round represented the latter thought: Metformin simply wasn’t cutting it for me.

I’d been taking one pill daily for about a month when I decided to quit. The reason why I stopped taking it is simple: I wasn’t noticing a dramatic reduction in how much insulin I take each day. It was maybe a one or two unit drop, and that just doesn’t justify me taking a pill like this on a daily basis.

Now, you might be wondering why I didn’t amp up my dose. After all, it says right on the bottle that I can take up to four pills daily. Well, I chose not to take more for a few reasons: 1) I’m in between endocrinologists right now, and don’t really have anyone to consult regarding dosage, 2) At one point in time, I thought I noticed side effects of taking Metformin, and I’ve convinced myself that any possible side effects would intensify with a higher dose, 3) I wasn’t sure whether the higher blood sugars I was dealing with in the fall were due to stress or permanent changes that my body was experiencing.

So yeah, as you can see, it’s not a cut-and-dry answer when it comes to me increasing my Metformin dose.

I feel like I’m in a better place now with my blood sugars and daily insulin intake. Certainly, things have improved compared to how they were in September and much of October. Rather than fret over taking “too much” insulin every day, I’m going to focus on things that I have greater ability to control, such as the foods I choose to eat (that may or may not impact how much insulin I need) and the levels of exercise I get each week. I feel like that’s a healthier, better way to take care of myself.

So…farewell, Metformin. I won’t miss you. I know you do great things for other people with diabetes, but I’m not sure that you and I are a good match.

 

Metformin Update #4: Here We Go Again…

Frequent readers of this blog are probably familiar with my journey with Metformin. If you aren’t, or want to brush up on my history with it, read here, herehere, oh, and here in order to get caught up.

Well, well, well…here I am again, taking yet another attempt at integrating Metformin into my daily diabetes routine.

I didn’t want to, certainly not after last time, when I thought it might be responsible for some unpleasant side effects I was experiencing.

But desperate times call for desperate measures…

METFORMIN UPDATE #2
Yep, I’m giving the giant white horse pills another go.

Long story short (because I’ve explained in previous posts that I had a rough September), my diabetes was totally rebelling against me about a month and a half ago. Each morning, I’d wake up, check my blood sugar (which nine times out of ten was very good, between 100 and 130), and prepare one of three of my standard breakfasts. I’d bolus for them just as I’ve always bolused for them, only to discover that my blood sugar was climbing much higher than it should have in the hour or two after the meal. It was so confusing. I thought it was only a breakfast problem, but when it carried over to lunch, and then dinner…I realized I was facing a bigger issue.

I’m sure you’re thinking that higher insulin dosages were the simple fix to what was happening. But I didn’t want to take approximately 30% more insulin each day to handle something that I couldn’t even begin to rationalize. I didn’t think that should be my only alternative. There had to be something else I could do.

Enter Metformin.

After consulting with my endocrinologist, we agreed that I’d take one Metformin each morning with my breakfast. I explained to her that I was reluctant to go back on it, but she gently reassured me that the side effects I’d mentioned were pretty rare and perhaps there was another explanation as to why I’d experienced them. She also made me feel a lot better about skipping doses here and there – I wasn’t sure if that would reduce the effectiveness of the Metformin – by telling me it would be fine if I forgot a dose or actively chose to miss one.

And so began my third go-round with Metformin.

As of this writing, I’ve been on it for several weeks. And I’ve noticed a difference. My total daily insulin intake is back at a number that I’m much more comfortable with, and I’m not having to take correction boluses multiple times throughout the mornings and afternoons just because I ate my regular meals.

It isn’t exactly the solution that I wanted, but it’s the one that I needed as well as the one that works for me, for now, anyways.

Metformin Update #3: Is it My Imagination…or Side Effects?

Frequent readers of this blog are probably familiar with my journey with Metformin. If you aren’t, or want to brush up on my history with it, read here, here, and here in order to get caught up.

The big white “horse pill” that is known as Metformin has become a relatively solid part of my routine in the last six or so weeks. I’ve skipped doses here and there for varying reasons (i.e., on occasions when I’ve had two or more alcoholic beverages); otherwise, I’ve been taking it and monitoring my blood sugars carefully each day.

But apparently, my blood sugars aren’t the only thing I should be watching diligently.

METFORMIN UPDATE #2

Just like any other drug out there, Metformin comes with side effects…which I totally chose to discount from the beginning, mainly because my endocrinologist thought that the extended release tablets would mitigate the likelihood of side effects. I’m questioning that logic, though, after experiencing indigestion and general stomach discomfort within a few hours after taking my Metformin pill.

It didn’t happen just once. There were at least three consecutive days that I experienced these symptoms. Within an hour or so after eating dinner, I felt uncomfortably full – like I’d eaten a whole Thanksgiving meal instead of a normally portioned dinner. I know that I wasn’t eating a larger quantity of food than usual, and since I typically have a semi-insatiable appetite, I knew that it just had to be related to my Metformin dose.

I decided to do some more research into the side effects of Metformin. And I was pretty surprised by what I saw. Shocked, actually. Because evidently, a massive array of side effects can occur on Metformin. The stomach discomfort I’d experienced was common, but other side effects that caught my attention included restless sleep, muscle pain, cramping, and a rash/hives.

Very interesting. I’ve felt all of those things in the last few weeks. I chalked it up to overdoing it with my exercises, but…it’s not like I was doing anything new or particularly strenuous in my routines. I do a combination of cardio and resistance training, for about an hour most days of the week. I always make sure to stretch before and after working out, and yet I felt a soreness and achiness (mostly in my legs) for a few nights in a row a couple weeks back. There was even one night that I tossed and turned so much that I hardly slept a wink – the restlessness in my legs was that bad. And the rash/hives? I’ll go into more detail in a future post, but on a random Tuesday night, I experienced a breakout so bad that I wound up going to the ER. They cleared up within an hour or so of a Benadryl dose, but it was still a scary experience.

Okay, so I think I can safely blame all of these issues on my Metformin intake. But that still doesn’t quite answer why I was experiencing multiple symptoms so suddenly. My theory is that my body was struggling to adjust to taking Metformin consistently, and as a result, I was feeling the side effects. There’s no way for me to be sure, but I think this warrants another experiment…another break from Metformin. My blood sugars have been good on it, but have they improved so drastically that I can’t imagine life without Metformin?

The answer is a resounding no.

I’ll likely consult with my endocrinologist at some point to tell her my thoughts and theories. But for now, I’m taking a break for an unknown period of time to see if there’s any change in how my body feels. We’ll see how it goes.

Metformin Update #2: Reintroducing Myself to the Big White Pill

It’s been a minute since I wrote about my Metformin journey on the blog. The last time I posted about it, I had made the decision to stop taking it after experiencing a scary low blood sugar. That, coupled with the fact that I just didn’t feel ready to be experimenting so much with my diabetes medication, convinced me that the timing wasn’t right for me and Metformin.

Fast-forward to May 30, 2019. I had an appointment with my endocrinologist. It was a productive one, because we addressed a number of my concerns that have cropped up in the last three months. One question I had for her was whether she thought I should give Metformin another shot.

METFORMIN UPDATE #2
Really though, why do these darn pills have to be so large?

She thought that I should. We went over the benefits: it’d make my insulin more effective, thereby fighting back against my current insulin resistance and reducing my total daily intake. With less artificially-made insulin in my system, I may be reducing my risk for cancer (according to studies she’s read), and I may also shed a few of the pounds that I’ve been struggling to lose.

By the time of this appointment, I was feeling frustrated with the amounts of insulin I was using each day. Ever since I got off my parents’ health insurance plan, I’ve been super conscious about my supply of insulin as I try to figure out how I’ll afford it under my new plan. And it hasn’t been easy. So in an effort to reduce my overall insulin use, I decided it was time to give Metformin another go.

I’m more cautious this time around. My doctor and I talked about my fears and she helped me come up with a plan to reintroduce it to my diabetes care and management routine. I’m starting to take less insulin at dinnertime and I’m running a temp basal overnight to see how my blood sugars fare. We’re playing it safe by somewhat dramatically reducing my dinnertime insulin-to-carb ratio, but I’d much rather do that than be overly aggressive.

It’s only been about a week since I’ve started the new regimen. That’s not enough time for me to attest to whether or not I’ve adjusted to it, because I deliberately skipped taking Metformin on a couple nights in which I knew I’d be imbibing alcohol…again, it’s all about being smart and not introducing too many variables at once. We’ll see how it goes. Until Metformin update #3, that’s all I’ve got for now.

Every Last Drop

27 units. That’s exactly how many units of Humalog were left in my pod, and I had no choice but to literally throw them away. My pod was expired – it had been for 8 hours – and to my knowledge, 8 hours after a pod expires, it will cease working entirely.

I kept the pod on those 8 extra hours because I couldn’t bear the thought of wasting insulin.

IMG_2075
27 units and no choice but to throw all of them away.

It’s a strange, messed up game that I played. I was taking a bit of a risk by wearing my pod for so long after it expired. After all, it’s just a piece of technology, and it can sometimes be difficult to know whether or not it’s working properly when it’s brand new, let alone within the window of expiration. But this is the game that I have to play, along with so many other people with diabetes, because insulin is precious.

Insulin keeps us alive.

Insulin is a need, not a want.

Insulin is exorbitantly expensive, so much so that it ranks #6 on a listing of the 10 most expensive liquids in the world.

With that in mind, tell me…would you feel comfortable throwing away even one single unit of it?

One could argue that maybe I could’ve tried to extract the 27 units from the old pod and reuse it in a new one – but to me, that’s an even more dangerous game to play. I have no clue whether that’s safe, or if there’s too much risk involved with germs and cross-contamination. Maybe I’m just paranoid, but when it comes to my health, I have to be.

So as much as it pained me to be unable to use every last drop of insulin, I made the only viable choice for me and disposed of 27 units of Humalog.

27 units, 16 units, 3 unit, 1 unit…no matter what the quantity is here, every last drop of insulin is invaluable.

When will we see change? Is it really too much to ask for insulin to be affordable to all?