Diagnosed at 19 at 470 mg/dL: twelve years of T1D from Georgia

Hi everyone, I’m Irakli. I’m 31, from Georgia (the country, not the US state), and I read my numbers in mg/dL, so apologies in advance to the mmol/L crowd.

Some background before the diabetes part. I’ve been in technology since I was a kid: I was building websites at 14 or 15, earning my own money as a teenager and helping my family with it. By 18 or 19 my other obsession was the gym. I trained hard and bought every sports supplement a teenager with his own income can buy: gainers, protein, all of it. Some doctors at the time wondered out loud whether any of that was connected. I never believed it myself, but I’ll admit the timing was strange: the summer I finally took a break from training was exactly the summer everything started.

Summer 2014. Thirst I could not switch off, bathroom trips around the clock. I knew absolutely nothing about diabetes. I was out of town, so I called my mother and listed the symptoms. She works in a medical laboratory and she didn’t hesitate: come back, we’re checking your blood sugar. I went straight from the trip to her lab. The meter read 470. I genuinely did not know whether that number was good or bad. Then my mother started crying, and that’s how I found out. I learned my diagnosis from her face before any doctor said a word, and I’ve never forgotten that moment.

I was admitted to hospital and started insulin. Pens from day one, Apidra and Lantus, and funnily enough that is still my exact setup twelve years later. No pump so far; MDI has worked for me.

The first years were the hardest part of the whole story. Fingersticks beyond counting, checking almost every hour, weighing food in grams, afraid of eating, afraid of the future. The timing felt especially cruel: it hit exactly at the age when I thought my life was about to begin, and instead I decided it was over. There was real depression, dark thoughts, and tears. If you were diagnosed as a young adult, you probably know that feeling without me explaining it.

But I got back up, mostly by studying the condition the way I would study any hard technical problem. Around 2016, after a year or two of shredded fingertips, I found out that the FreeStyle Libre had just come out. Nobody told me about it and no doctor here recommended it; most doctors in my country did not know it existed, and many still don’t. I researched it myself, ordered it myself, and I’ve been wearing a CGM ever since. For all I know I was one of the first people in Georgia walking around with a sensor on my arm, possibly the first, and honestly it would not surprise me. It split my life into before and after: seeing a curve instead of isolated dots changed how I understood my own body, what food does, what stress does, what a night actually looks like. That is also roughly when I properly got back on my feet.

One thing worth knowing about my corner of the world: for adults in Georgia there is still no insurance or state program that covers sensors, so since Libre 1 I have paid for every sensor out of my own pocket, ordering them from Germany. Twelve years of that adds up, and I would do it again without thinking. To be fair, things are slowly improving: today the state gives children under 18 free Libre 2 or Medtronic Guardian sensors, which would have sounded like science fiction back in 2014.

I’ve worn every Libre generation since. My daily sensor today is the Libre 3 Plus, with a Dexcom G7 in rotation from time to time, so I know both ecosystems first hand.

Now the plot twist. My profession has always been technology and marketing, and when you wear CGMs every day for this many years, you start noticing not only what the tech gives you but also where it leaves gaps. The biggest one for me was nights. There were nights when I simply did not wake up to an alarm, and anyone who has slept through a low knows that specific morning feeling. Once I became a father, that stopped being acceptable: I wanted more than one thing that could wake me, and I didn’t want to be the only person who could see my numbers at night.

And it wasn’t only nights. It has always surprised me how slowly the official apps pick up things that have been normal in tech for years. My glucose lived inside one app on one phone, while my actual life happens in more places than that: at a desk during work hours, at the gym, in the living room in the evening, next to my family. I kept collecting these “why doesn’t this exist yet” moments, and eventually they won. That is how I ended up building a diabetes app with a small team. It’s called Sugar Sense and I’m the founder. I built it first of all for myself, to cross those moments off one by one; today around 5000 people worldwide use it, which I still find a little surreal.

Where things stand now: I’m 31 and a father of three. None of my kids have diabetes, and I pray it stays that way. Five years after my diagnosis my father developed type 2, so glucose is a family topic at our table either way. My A1C stays in the normal range and my time in range sits around 85 to 90 percent, which 19-year-old me would flatly refuse to believe. Boring consistency did more for me than any single heroic change.

If I could talk to that 19 year old on diagnosis day, I would tell him this: it is not a verdict. It is a companion, an annoying one, but you can live a full life next to it. Work, the gym, family, all of it. I would spare him the dark period and the tears at the start if I could.

That’s my story so far. Glad to be here, and looking forward to reading yours: this category is exactly what I wish had existed for me in 2014.

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@Irakli Welcome to FuD it’s a great community. Your story will resonate with most T1s here. You are really doing well.

I’d be interested in an app created by someone in the game. I’ve used several and find most lacking.

I am a hardware electronics person and have an irrational dislike of coding. Maybe because that was my mother’s thing.

Good luck to you, and I’m glad you survived being 19.

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Thank you @CarlosLuis, that is a very warm welcome. And thanks for the laugh, some days I am also surprised I survived being 19.

The hardware and coding split made me smile, because in my family it went the other way around: my mother is the lab person and I ended up the software person. Huge respect for hardware people though. My whole story only exists because someone soldered a tiny miracle that sits on my arm.

And I hear you on most apps feeling lacking. Wearing the sensor every single day while building is a very different kind of quality control: every annoyance is personal. If you ever give mine a try, I would genuinely value your feedback, hardware eyes catch things software eyes miss.

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Me too, it wasn’t diabetes; I was diagnosed with T2 at 40. When I was 19-20 I was an emotional wreck. I got suspended academically from university. It took the US Air Force boot camp and avionics technical school to sort me out.

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That is quite a turnaround story of its own. Sounds like we both got sorted out the hard way: yours came with a drill instructor, mine came with a lab meter. Funny how the thing that feels like the end of the world at that age can end up being the thing that organizes the rest of your life.

And avionics is no joke. Working on systems that absolutely cannot fail probably explains why most apps feel lacking to you. Glad the 19 year old versions of both of us made it here.

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My joke was, if a pilot got lost it was my fault.

I firmly believe that everything good and bad that happened in my 76 years has helped to make me a better person.

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@Irakli Welcome! I think you’ll find FUD a good group! Re: your story, a good rendition! I was dx’d at T2 @ age 58, T1 8 years or so later…the 7 stages of grief are real, and I still get angry at this disease, but less so after years (like yourself). Anyway, thanks for being here and for using your knowledge for Sugar Sense. I’m a DIY AID user (Trio) and stay up-to-date on Loop as well; so I respect the contributions of folks like yourself!

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Thank you Tom, that is a warm welcome. Your path sounds like the harder version of mine: getting one label at 58 and then finding out years later it was actually T1 means going through the whole adjustment twice, and I can only imagine that. And yes, the grief stages are very real. The anger never fully left me either, it just got quieter with the years, exactly like you describe.

Big respect for the DIY AID route. Honestly, a lot of what all of us take for granted in diabetes tech today exists because the Loop and DIY community refused to wait for the manufacturers, so the respect goes right back at you. I’m still on pens myself, twelve years of MDI, so I watch what Trio users do with automation with half admiration and half curiosity. Maybe one day.

Glad to be here, and thanks for the kind words.

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Welcome to the FUD community, @Irakli. I admire the dedication and drive you used to treat your diabetes, especially since you had to self-fund much of technology. I don’t know that I would or could have done the same thing. My hat is off to you!

I was diagnosed T1D at the age of 30, a bit older than you were. I had access to diabetes tech, mostly due to insurance. I currently use an insulin pump, an implantable CGM, and DIY Loop. I’ve used the Loop system for almost 10 years now.

It’s great that you’ve gained such good competency with MDI. I’m sure the close attention that you’ve paid to your personal CGM data has taught you a lot over the years.

I’ll check out your Sugar Sense system. I currently use Loop, Nightscout, Tidepool, and Eversense as the monitoring and tracking of my glycemia. Good luck to you!

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Thank you @Terry, that means a lot. The self-funding part sounds more heroic in the retelling than it felt at the time. Honestly it was just the reality of where I live: you either found a way to pay for sensors or you went back to fingersticks, so the decision mostly made itself.

An implantable CGM plus DIY Loop for almost ten years is a setup very few people can claim. Eversense especially, I have read plenty about it but have met almost no one who actually wears one, so I may pick your brain about it one day.

And you are right about the data. Twelve years of MDI with a sensor on my arm has been a long course in my own physiology. You start recognizing the shape of a meal curve before the meal is even over. It does not replace automation, but it teaches you a lot about yourself.

Since you mentioned wanting to check it out: you already run Nightscout, and that is one of the sources the app can read from, so your Eversense numbers would flow in through that same site. Happy to answer anything if questions come up.

Thanks for the warm welcome, and good luck to you too.

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@Irakli You may want to check out Eversense follow on plans. They’re working on a system to do away with the current external transmitter and go directly to app (iOS or Android) and still last a year. I think this would drive a lot of business their way depending on timing and islet cell progress. If so, I suspect many of us will be talking with @Terry who will definitely be ahead of the power curve!

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Nice to meet you, Irakli.
I’m a T1D also, Diagnosed age 11. Now 46 years old.
I can tell that you like to write. It’s nice to have people who like to write AND like technical details. It’s good for the community to have people like that around. Sometimes there are technical problems that are hard to solve and/or hard to explain. Glad to meet ya.

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@TomH thank you for this, I had not followed the Eversense roadmap that closely and you just sent me down a reading rabbit hole. A sensor that lives fully under the skin, talks straight to the phone and lasts a year would be a genuinely different product from anything worn on the arm today. The engineer in me immediately wants to know how they plan to solve power and radio range once the external transmitter is gone, since that little disc currently does a lot of the heavy lifting. If they pull that off, I agree it could win over a lot of people who never considered an implantable before.

And it sounds like when that day comes, Terry will already have a decade of head start on the rest of us. I will keep an eye on it, thanks for the pointer.

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Nice to meet you too, @mohe0001. Diagnosed at 11 and thirty five years in, that is a journey that puts my twelve years into perspective. I have a special respect for people who grew up with this from childhood, I at least got to be a carefree teenager first.

And thank you for the kind words. Writing is how I think, and diabetes gives endless material: it is a condition made of technical details that somehow always end up personal. So if a hard-to-explain technical puzzle shows up around here one day, I will happily take a swing at it. Glad to meet you, and see you around the forum.

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Me too.

I think this is the harder scenerio because it takes an extreme amount of adaptability to change at an older age. I have always been this way, so diabetes is just ‘normal’ to me. I imagine that the older you are, the harder it is because kids are so naturally adaptable and easy to mold. Adults are different.

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I’ve often wondered which is harder, dx in youth and dealing with it for decades, or dx in older years after being set in ways. I’m still not sure and don’t have a choice anyway! I’ve only had to deal with it (as T2 then as T1) for 13 years, but can say I could have handled it better! I still have times where I question and swear at the situation…but also know the times are fewer and further between. Yet, I still consider myself lucky to have it now, with the tech that’s available, and the hope for cell therapy without long term need for suppression in the offing…not so much for me and my age group, but for the younger set that will benefit from it!

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Welcome, Irakli! What an incredible journey and such a powerful story. Going from that 470 diagnosis to where you are now, raising three kids and staying around 85–90% TIR, is seriously inspiring. I love the message that diabetes is a companion, not a verdict. Glad you’re here!

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@TomH I’ve been thinking about your question since I read it, because 19 sits right in the middle of it. On paper I was young enough to adapt. In practice it landed exactly at the moment life was supposed to open up, and that timing was its own kind of hard. So my honest answer after twelve years: I don’t think there is a good age. Every age gets its own version of it, and the disease somehow always aims at whatever you care about most at that stage. Reading you and mohe0001 side by side sort of confirms it: three different starting ages, three different battles, same opponent.

The swearing part made me smile. Twelve years in, mine is not gone either, it has just gotten shorter. Certain numbers still earn one phrase in Georgian that I will not be translating for the forum.

And I am with you on feeling lucky about the timing. In 2014 a sensor was science fiction in my country, today my phone can wake half the household before I feel anything, and cell therapy went from a dream to an actual pipeline in that same window. With the pace of the last decade, I honestly would not count your age group out just yet.

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Thank you, that is very kind. Full honesty though: the 85 to 90 percent is not talent, it is boring consistency plus a sensor doing the remembering for me, and the number still dips whenever life decides to happen. The version of me from the 470 day would flatly refuse to believe this paragraph, and that is exactly why I wrote the post.

The companion framing took me years to accept. I spent the first rounds treating it as an enemy and lost every single one of them. Accepting that it was moving in permanently, and just needed a routine, is when things turned. Thanks for the warm welcome, glad to be here!

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Hi and welcome to the group.
I think it’s much easier when you are young as you grow up with it and that is normal for you.
I was diagnosed at age 4 and have been diabetic for 62 years.
I was very lucky with my parents as they treated everything as simple as brushing your teeth.
When I was 5 and had some friends visiting my grandmother saw me offering cookies which I did not have. She was aghast and told my mother that she thought she was being mean. My mother replied that I would be diabetic my whole life and this was normal for me, which it was. No problem.
Then another time when I was hospitalized during my pregnancy for something not diabetic related my sister visited me and shouted that my problem was that I thought I was normal. But I am I thought to myself, who knows what’s wrong with you.
Diabetes hasn’t changed my life in any way that I can think of. Sure it can be frustrating at times and you have to deal with things and figure them out but while doing that can go on holiday, have a great dinner with friends, whatever your life holds.

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