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.

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).

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.

Metformin Update #1: Slow Start Comes to a Screeching Halt

A month ago, I wrote about how I was going to start taking an oral diabetes medication called Metformin. You can read all about what is is and why I started taking it by clicking here. (If you didn’t read that post when it was initially published, I recommend skimming it quickly before you continue reading this one…otherwise, what I have to say next might not make much sense.)

All caught up? Good. Now I can tell you that my first Metformin update isn’t much of one…because I’ve already stopped taking it (for now, anyways).

ClearanceYard Sale
For now, this vial of pills will remain mostly full.

After two weeks of taking one pill after dinner daily, I decided that I needed a break from my new diabetes therapy. There’s a lot going on in my life right now – I’m moving to a new state in a matter of days, so all my spare time is spent either packing or seeing my family and friends. Adding a new medication into the mix, one that can cause unpredictable blood sugars, just doesn’t make sense. And while it could be argued that I could make adjustments to my insulin dosages to help mitigate the number of lows I experience, I simply don’t have the patience to fiddle around with my insulin-to-carb ratios or basal rates at this time. It’s all too much change at once, and even though I’ve become much more comfortable with new things in my adulthood, I still need time to acclimate to them.

I explained all that, albeit much more succinctly, to my endocrinologist via my patient portal messaging system a few days ago. And she’s totally on board with my decision, thank goodness. I’m free to resume Metformin again when I’m ready.

The affirmation from my endo that I was doing the right thing feels great. It helps me feel more confident in making choices that benefit my body’s health as well as my mental health. Even though now doesn’t feel like a good time to be taking daily doses of Metformin, I know that won’t always be the case. Maybe, in time, it’ll become a crucial component of my diabetes care and management routine – maybe I’ll end up valuing it as much as my OmniPod or CGM. But for now, I’m okay with putting it off just a bit longer.

Molly, Meet Metformin

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.

ClearanceYard Sale

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.

Do You Know About Monogenic Diabetes?

This post was originally published on October 28, 2019 here on Hugging the Cactus. I decided to share it again today because I think it’s important to raise awareness that there are more than two types of diabetes. As I reread it, I realized that even someone like me, a person who has diabetes, still has a long way to go when it comes to understanding how each type differs from one another. Read on to learn more…

It was the statistic that impelled me to learn more information:

“Approximately 1 in 50 people with diabetes have monogenic diabetes.”

Mono-what?

I was staring at the giant banner bearing this statistic in the exhibition hall of the Friends for Life Falls Church conference. I read it a few times before I finally walked over to the table at which two women were seated. One of the women was an associate professor at the University of Maryland School of Medicine and a human geneticist. The other woman was a typical T1D for several decades of her life before she received a proper diagnosis of monogenic diabetes. Ever since that revelation rocked her world, she’d gone off insulin and took sulfonylureas (a type of drug that stimulates the pancreas to release insulin) to maintain healthy blood sugar levels.

Just how many types of diabetes are on the spectrum

Naturally, the whole concept was simultaneously foreign and fascinating to me. I wanted to know more.

As I discovered that evening, monogenic diabetes is best explained by its name. “Mono”, of course, meaning “one”, and “genic” meaning “relating to genes”. Therefore, it’s a type of diabetes that is caused by changes in a single gene.

Here are some “fast facts” that I learned about monogenic diabetes:

  • Most cases of it are misdiagnosed as type 1 or type 2 diabetes
  • Proper diagnosis of monogenic diabetes sometimes changes treatment from taking insulin to a pill, or no medications at all
  • There is an emerging clinical spectrum when it comes to genetic testing for diabetes. At the time of this writing, the following situations are when it’s recommended to undergo a genetic test to determine whether an individual has monogenic diabetes:
    • The individual received a diabetes diagnosis within the first 6 months of life
    • The individual’s diabetes does not follow typical characteristics of type 1 or type 2 diabetes – this might mean that the individual is non-obese or has a strong family history of diabetes
    • The individual has a stable fasting blood glucose between 100 and 150 mg/dL
  • From the pamphlet I picked up that featured stories from individuals with monogenic diabetes: “I was 21, taking metformin and aspirin daily and sitting in a type 2 diabetes class with three much older participants. Despite dropping my BMI from 26 to 23 my A1c had risen to 6.4%, not a high number, but certainly one worth watching. I knew of no one else in my family with diabetes. Eventually I did get that dreaded diagnosis, and because it didn’t seem to be type 1, they said it was type 2. Fast forward 2 years and my sister now had ‘GDM,’ (gestational diabetes mellitus) twice, my dad finally admitted to having ‘borderline sugars’ since he was in college, and I got my genetic results back saying I had GCK-MODY (GCK being a gene that can have a variant that triggers monogenic diabetes, MODY being maturity onset diabetes of the young). It changed everything: gone were the pills, gone was the restrictive diet and exercise plan, and when my son was born with high blood sugars, we did nothing, because he was like me, and there is nothing that needed doing.”

Now, if YOU are like ME, all of that might read like some mumbo-jumbo. It took a few weeks of me reflecting on it to decide whether I should even write this post, because I feared that it might cause some people to be paranoid about whether or not they were misdiagnosed with their diabetes (I admit that I was worried about that for myself in the days after learning about monogenic diabetes).

But the big takeaway here that I thought should be captured in a blog post is that it’s important for patients to advocate for themselves when things just don’t add up. There were a few more stories from individuals with monogenic diabetes in the pamphlet I got, and there was a recurring theme in all of them: Doctors kept telling these patients that their diabetes was atypical, but it wasn’t until these patients sought genetic counseling that they began to understand why.

It goes back to what I said at the beginning of this blog post: I find this variant of diabetes to be intriguing. It makes me wonder whether we should continue to define diabetes in such a black-and-white manner (either you have type 1 or type 2). I’m curious if diabetes is more of a spectrum of diseases that present similar symptoms, but require different levels of treatment and management. It’s certainly interesting food for thought, and considering that diabetes continues to be a semi-mystifying condition to many researchers and doctors, it won’t surprise me if future studies eventually uncover more types of diabetes.

Anyways, enough of my musings on genetic testing and speculations on how many types of diabetes are really out there. If you’d like to know more about monogenic diabetes, I was guided to several different resources. Check them out below: