FUDiabetes

From Type 2 to Type 1, my story

I’m so happy to find this forum (and even happier that this is the first time I’ve been able to get my first name as a username on any website!)

If my story sounds familiar you may have read it when I posted on the T1 subreddit a few weeks ago. Thank you to the person on reddit who PMed me and told me about this forum. I’ve been lurking for weeks. When my anxiety gets crazy coming on here and reading through all the topics and seeing all the support has really comforted me.

I’m pasting my reddit post below with a few edits (to make it more family friendly :wink: )

Three years ago I weighed 310lbs and was starting to feel very ill. I was thirsty all the time, constantly peeing, and just overall not well. Before my symptoms started I knew I was unhealthy. I was a morbidly obese 27 year old woman. I’d tried dieting and exercise so many times and couldn’t manage to lose weight. I was so hungry all. the. time. I couldn’t get enough food, nothing satisfied me. I was very down on myself and depressed for all of my early 20s (not all of this was weight related, had some family trauma, a string of awful boyfriends, etc.). I ignored my symptoms for months telling myself it was all obesity related and I brought this on myself.

Well, finally, the thing I’d always dreamed of happened. I started losing weight without changing my diet. I was joking with my coworkers about my new “super power” but inside I knew something was really wrong. When I lost 40lbs in one month, I finally made an appointment with my doctor (had to find a new doctor because at that point I’d last been seen by my pediatrician) got the blood work done, and received a Type 2 diagnosis. I was prescribed Metformin and Glimipiride. My a1c was 13.1.

My world was rocked. I beat myself up so much. I had done this to myself, I let myself get so fat I gave myself diabetes. It was really rough. But a little self care, and a lot of education later I learned that that’s not true, and there are a lot of factors that contribute to Type 2 diabetes. (Although, I have to admit while I outwardly preached this I did still blame my obesity and the way I treated my body for my diagnosis.)

I did a lot of research and ignored my diabetes educator in lieu of internet experts and started a very strict keto diet. Within thee months I’d brought my a1c down to 5.3. I was my doctor’s favorite patient. I felt better than I ever have in my life (though, if I’m being honest, still not 100%). For what felt like the first time My friends and family were so proud of me. I was the diabetes wonder child! My insurance stopped covering the 4X a day test strips I was receiving at this time, and I SO STUPIDLY stopped checking my blood sugar.

It took about a year and I lost a total of 135lbs. I’ve weighed 175lbs for the past 2 years, and as a 5’8 female I’ve been mostly ok with that. Another 20lbs and I’ll be at what’s considered a healthy weight, but I still really prefer this body (loose skin, stretch marks and all!) over my previous 300+lbs body.

The reason I stopped losing weight is probably because I became a lot more lax on the keto diet. I never went back to drinking any sugary drinks, but more carbs slowly crept back into my life. I let myself have french fries occasionally, then maybe some Taco Bell, then a slice of cake on my birthday, a piece of pecan pie on Thanksgiving. For about 6 months I ate a keto diet probably 50% of the time.

Meanwhile, my a1c was climbing higher and higher. My doctor was lecturing me (the reason I avoided the doctor for 10 years prior) and trying different medications. Then last October I was laid off from my job of 6 years. I completely gave up on myself and didn’t care about myself, and fell into a depression.

I scheduled a doctor’s appointment before my insurance ran out and at that time my a1c was 9.2. Luckily, I was able to find a new, better, job fairly quickly but once you go off the rails it’s hard to get back on track. I was eating so poorly, lots of fast food, sneaking lots of packaged sweets behind my fiance’s back, but still pretending I was eating keto most of the time. (Why did I think it was ok to eat 12 oreos but still deny myself like fruit, yogurt, and whole wheat bread???)

Anyway, to make an already way too long story short- about mid-April I started having symptoms of what I thought was acid reflux. Lots of heartburn, that burning gut feeling, etc. I was in SUCH denial. I knew what DKA was. I was constantly hungry and thirsty like when I was overweight. I was practically guzzling Zantac and Tums. WHY DIDN’T I CHECK MY BLOOD SUGAR??

Then Thursday, April 25th, I started having trouble breathing. I left work, went home and took a nap. I asked my fiance to bring me frozen yogurt as I thought it would soothe my stomach. It did but he begged me to go to the doctor. I told him I was fine and I just needed to sleep. I sent him to go play on his PC and even joked to him “You’re going to be so sad if I die” (just the kind of awful, dark humor that I have) He was like “why the heck would you say that??”

The next morning I went to work. My fiance begged me to call out and go to the doctor. I was still struggling to breathe. I was at work for two hours before they forced me to go to a walk-in. I insisted on driving myself.

At the walk-in I KNOW I filled out all my paperwork correctly, stating that I was (to my knowledge at the time) Type 2 diabetic. I told them I was having acid reflux like symptoms. They insisted I was having a panic attack. I told them no, I know what a panic attack feels like, this wasn’t it. I just wanted to breathe normally again. They kept insisting, brought multiple doctors in, and finally decided to run an EKG because of the family history of heart issues I have.

That’s when I had an actual panic attack. Luckily, it came back clear. They sent me home with a prescription for a one-a-day acid reflux medication and some generic form of xanax. They never tested my blood sugar.
I went and got the prescription filled but started feeling a lot worse. I sent my fiance some really loopy texts. He begged me to call someone close by to come get me. I told him I was fine but was starting to get really loopy. I managed to make it home after stopping for more frozen yogurt.

The last thing I remember from that Friday is my fiance calling, and me telling him I made it home safe and not to worry.

He found me passed out on the living room floor. I wasn’t wearing pants. My phone was by the sink, my purse upstairs, I don’t know what was going through my mind. I had pooped myself. My body was shutting down. That night they told my mom and my fiance that they didn’t know if I was going to make it.

I woke up in the ICU, bruised to all hell. I spent 4 days receiving amazing care where every Endo who came to see me was certain that I was actually a Type 1 and in complete disbelief that I hadn’t been diagnosed sooner.

The next Friday I went to my diabetes education where my nurse practitioner confirmed my Type 1 diagnosis. It’s been a real rollercoaster of emotions.

Emotionally, it’s been hard too. I feel so bad for what I put my parents and fiance through. My poor dad flew all the way across the country not knowing if I was going to live or die. They all want to sue the walk-in clinic for not checking my blood sugar but I just blame myself.

^^^

It’s been a month since I made that post. My BS has been pretty good but my anxiety has been crazy. I’m afraid of DKA and also afraid of lows. I’m afraid to sleep. My endo has started the process of getting me a Dexcom G6 but until and I think that will help with the sleep issue but I haven’t heard from the distributor in two weeks.

I keep seeing all these posts by other T1s who are able to eat all these delicious foods. My endo wants me to restrict myself to only “healthy” foods with a 60g carbs/meal limit. I have no idea what my ratio is but that’s probably something that takes a while to figure out? I’m not a very patient person so this is incredibly frustrating to me. I’m not sure this way of life will ever feel normal, but I just want to get to the point where I feel like this is routine. I’m getting married in June 2020 and I just want to be able to eat some wedding cake and some of that viennese dessert table I’m paying for.

I feel like I have a million questions but this is already long winded and I’ll have time for them later (who said I wasn’t patient? oh wait- I did). Thank you for taking the time to read my story and thank you for this outlet. :blue_heart:

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Wow,@Megan, that’s one heck of story!! So glad you are recovering from this ordeal and glad you found FUD. Welcome! :smiley_cat:

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If continued delay with dexcom, you could try Freestyle Libre to help prevent lows and reduce anxiety.

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I am glad you decided to post over here. This site is great, offers quite a bit different kind of support than reddit can, just by the nature of being a smaller group. I look forward to you being able to get everything under control, then eating whatever you want (within reason). Wedding cake should be no problem! Congrats on getting married and finding a keeper btw.

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Welcome to the club of misdiagnosed people . My story is hardly as dramatic, but I feel like I get you on some of it.

I was misdiagnosed as a type 2 despite being in what was assumed to be early type 1 (due to my a1c not reflecting the numbers I had and permanently going up over time and my instant response to insulin, testing later confirmed it) . It can happen to anyone , and that’s the thing that needs to go around. I like it more here than reddit , but I post there too :slight_smile: .

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Welcome to FUD. So glad that you got the correct diagnosis and survived the experience! I think the Dexcom (or Libre) will help you a lot. I’ve been diagnosed since I was 9, am in my late 30s now, and my mom still gets freaked out if she doesn’t see me online each morning. Things like DKA and severe lows can definitely be traumatic experiences.

By the way, I’m also overweight and find your weight loss story inspiring. So many people talk about needing to lose 20 pounds as if it’s a serious problem and don’t understand the major struggle of trying to lose 100+ pounds. I tried low-carb for a while, but for various reasons am currently trying a regular diet with increased exercise.

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Thanks for the tip! I’m going to call about my Dexcom tomorrow and see if I can get a progress report. The Libre seems like a good option if it’s going to be awhile.

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Welcome to the club! Glad you are on the way to getting things sorted out. The Dexcm G6 is the gold standard of CGMs. You’ll love it. You can watch your sugar on your phone and your watch! And more importantly, you can spot trends as it measures your sugar every 5 minutes! And the best part is that the G6 doesn’t require finger sticks at all to calibrate.

If you are into podcasts, try the JuiceBox podcast. it is wonderful! (http://www.ardensday.com/juicebox-podcast )

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Welcome @Megan! Sounds like you had pretty rough introduction to T1- not that it’s ever a pleasant intro of course.

So the limit thing is a little concerning. What insulin are you using? Knowing your insulin to carb ratio will help you avoid both highs and lows- especially the really bad ones. It takes time to figure all of that out, but it may be worthwhile to press your endo on this a bit. If it’s been a month since diagnosis, I would’ve expected some progress on that front by now.

Those fears won’t be as strong when you have a better understanding of how much insulin is needed for a certain number of carbs. There’ll still be bad days and good days, but the extremes won’t happen as often.

The G6 is a great step in helping you prevent nightly lows. Until then, it may be worthwhile to wake up a couple times a night to test. As I don’t know your insulin regimen, its hard to say if there’s a big risk of lows.

Anyway, everyone here has been really helpful to me. It’s a good group of folks. There’s a lot to learn! I highly encourage you to ask some questions as you work out how to fit diabetes into your daily life. With a bunch of work over this year learning the ropes and a little bit of planning, you should be able to enjoy that wedding cake without any problems :slight_smile:

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