I Got Diagnosed with LADA at 30 - My T1D Diagnosis Story

[@151piper]

Hi Justin, ironically Justin here as well. I have been diagnosed as diabetic since 2014. I remember the day i was called and told i need to take long acting insulin as well. How i cried in a private office at my work because i was scared and felt alone as well. I remember talking to my husband about it and taking that first shot that evening. My story is somewhat similar. Fast forward to today, i am on a pump which i paid for myself because any doctor who saw me refused to believe i am a T1 LADA. Last year i connected with a new Endo and finally the proper tests were run. Confirmed T1. Now i sit here, after my meeting with my new diabetes team yesterday and ordering a new pump (my current one is 2 years out of date) waiting for fedex to deliver it today from medtronic. Your story resonated with m,e and made me tear up because i understand, and glad someone else understands as well.

[@chrissyfoley7361]

Hi Justin! I just happened upon your channel. I’ve had Type1 diabetes for 56 years. I was diagnosed at age 12. Short story of diagnosis, same symptoms as you. My dad was a Type1 so my mom recognized the symptoms. I had a blood test and was diagnosed. There was no such thing as insulin pumps, CGMs, no way to test your blood at home. There were urine tests which were not a good way to know what your sugar was. No such thing as carb counting. I took insulin made from cows and pigs, called beef/pork insulin. No disposable needles. My mom boiled them to clean them and sharpened them. Thankfully disposable came around not too much later. It’s a wonder I’m still alive with all of that. I never knew anyone else like me. I really felt out of place. I could type paragraphs about life as a Type1 in the 1960’s. I’m so thankful for all the things we have now. Diabetes is still a hard disease to deal with but I do have a good life in spite of it. I’m so glad I found your channel. 😊

[@dinkster1729]

Think of all the people who don't have access to this technology though. Who don't have access to meaningful instruction from Certified Diabetes Educators. It blows my mind that governments can still be stalling about prescribing insulin pumps and cgms to people. If the worst that happens to you is you have to go to another pharmacy to get your insulin, well, that's life!!! Lots of people in the U.S. can't afford insurance to cover their costs so they are stuck with the needles regimen and not enough money for bg strips even. Shameful! I'm glad you've made it for 56 years without serious complications, I hope. my husband has been almost 46 years since diagnosis, but he was diagnosed with t2d, I guess, judging by the regimen he was put on back in May, 1978--one shot a day of Lente and, then, a couple of years later, 2 shots a day of Lente. Then, when he began passing out at work, he was put on an insulin pump finally and learned about carb counting and the effect of fast-, medium- and slow-acting carbohydrate on the bg levels as well as the effect of protein and fat on bg levels. Education and technology (including a cgms since 2008) has kept him pretty healthy over the years.

[@krazysourpatch]

Diagnosed in March of this year as a 25 year old. Had to go to the hospital for DKA, my a1c was 12.8. Nurses would tell me I was type two Bec of my age but one doctor told me I was type one. Never got a definitive answer till I went to the endo. But the whole time I was in the hospital I watched tik toks and learned so much. Second endo appointment I was able to tell them exactly what Cgm I wanted and do MDI. Social media is a powerful resource.

[@dinkster1729]

That's what a guy who had been t1d for over 50 years said. The internet has changed a lot of things for the better. R.N.'s think they know it all, but a lot of them know nothing and are proud of it. You probably weren't on the endocrinology floor either. Those R.N.'s were the most helpful. The cardiac floor and the internal medicine R.N.'s were down right belligerent. They got in my way constantly. At least, the physicians know more about how normal bg levels are created when you have type 1 diabetes. When are you getting an insulin pump?

[@shushan12]

I just got diagnosed type 1 as well and ur story is so similar to mine. Thanks for posting it can really feel like a lonely journey at times.

[@whyyoustaring]

I have a similar story, just diagnosed two weeks ago. Two hospitalizations and two different diagnoses, and a bunch of doctors giving me finger guns and saying "You got diabetes kid, here's your Metformin". Luckily I was able to get into an endocrinologist within a week and I'm on day 4 of the Dexcom G7. Right now I just take nightly long lasting insulin which has my blood sugar under control, but I know someday soon that I will have to transition to MDI or a pump. The lack of information and misdiagnosis of people with LADA is astounding and dangerous. We need to do more. Luckily your channel is filling a much needed gap.

[@yadiracastellon]

I was diagnosed TD1 in 1999 on my 26th birthday. Same as you, after diagnosis and lack of information and proper support I felt lonely and confused. My first shot also took me minutes to “gather the guts and just do it”. Glad that you are out here helping and sharing your knowledge with other TD1 friends 😊

[@dinkster1729]

I went on Ozempic a couple of years ago--before the pandemic restrictions. My RN/CDE was disappointed that I had already taken my first shot before seeing her after I got the prescription. She said, "I guess because your husband is a type 1 diabetic of long standing, you're an old pro at this." Absolutely! An ozempic shot is nothing compared to inserting a quick set or getting a cgms sensor to work. Some people used to insert quick sets by hand. I'm sure I'd blow a few insertions that way. May the force be with you.

[@vgardner1688]

Thank you so much! I was just recently diagnosed & felt like I was given a death sentence. My Dr. Just said how I needed to take all these meds & sent me on my way. Wait, what? You want me to inject myself with medicine with no instructions or guidance? To say I feel completely overwhelmed is an understatement. I'm glad I found your channel.

[@dinkster1729]

Isn't there a Diabetes Education and Management Centre you can access? Ask your endo. Ask your local Diabetes Association--American Diabetes Association, juvenile Diabetes Research Foundation, Diabetes Canada, Diabetes U.K., etc. in whatever country you are. You really need training. You don't need to pick up hit and miss education.

[@christopheredens]

Thank you. I'm in the early stages but likely on the way to LADA. I'm a physician and still finding it hard to get my head around.

[@diabe_tech]

You’re going to be great. Let me know if you need anything (dm me on social)

[@kailee5694]

When I was 60, my older sister was diagnosed pre-diabetic. She would have been the 3rd generation of diabetic adults in the family. As a nurse, I wanted to check myself. After a bunch of abnormal labs I was diagnosed reactive hypoglycemic, referred to an endocrinologist, more labs, and finally diagnosed as very early LADA. That was 7 years ago and luckily I am still not on insulin. I will say, however, 3 of the 4 relatives diagnosed as type 2 were thin and in their 60’s when diagnosed. I truly believe they were LADA, but no one tested their antibodies. This includes my sister who refuses to have the testing done. I will also say that as an adult diagnosed as diabetic, there is so little official support vs when you are diagnosed as a child. You are basically sent home with a bunch of meds and equiptment, maybe scheduled for a nutrition consultation, and told to figure out how to care for yourself and to try not to kill yourself in the process.😢. It’s pathetic.

[@WeatherManAP]

I love that you shared your diagnosis story. My diagnosis I entirely owe to my grandmother. I was diagnosed at 8 years old on Christmas in 1999, so definitely the juvenile part of type 1. I was going to the bathroom a lot and drinking a lot. My grandmother noticed this. She had type 2 diabetes. One day she told my mom and my grandmother tested my blood sugar. It was around 250. So yes high, but not deadly high like I've heard of people with blood sugars 900-1000+. Thank you for the great content you make! I just messaged you on IG about a video idea.

[@dinkster1729]

Yeah! An a1c of 12. something was hardly that bad as the videographer suggests. He never went into DKA. Lucky him! My husband's a1c before the pump was routinely over 10. something and his endo didn't seem to care. He had serious lows as well. Convulsions (seizures) and lots of other lows where he was unconscious and I had o revive him. I didn't even get told about glucagon kits until he had been diagnosed for 20 years. The treatment of the disabled by our endos is a disgrace!!!

[@devnull3278]

I was also misdiagnosed as Type 2 for years, with my FORMER Endo routinely screaming at me that I was "intentionally not following his advice" about diet and exercise (I weighted a whole 145lbs at the time). I failed all of the oral meds, including Metformin. My A1c kept climbing while my doctor continued to tell me I was lying about how much I worked out and how much I was eating. Long story short...I'm a Type 1, lol...and didn't find out until I was 35, though I had probably had it for 10 years at that point and only the fact that I was working out 2-3 hours a day kept it somewhat "hidden."

[@palerider7924]

The he's older than 12 so he's Type 2 is insane. Then as a 2 it's your lifestyle and fatness but myself never was fat. Insulin fixed me perfect life now just dose accordingly and eat balanced diet.

[@user-fc2xk3uv8y]

i was just diagnosed as type 2 a few months ago. np who works with my pcp said something didnt look right and he didnt think i was type 2. said he thought i had "weird diabetes" a1c was 11%, my blood sugar was over 300, but my other labs were perfectly fine and i was not sick, so he ordered more labs. he checked for 2 antibodies of 4 or 5, and no c peptide from what i can see. i also dont think im type 2. he put me straight on long acting insulin and while it isnt perfect, its definitely working. my pcp said we can try to put me on ozempic or another med and eventually get me off insulin. i told her no, because the insulin on its own is working pretty effectively, but if it wasn't working i would be happy to try other things. since doing my own research, i will be requesting more labs done both with the np and an endocrinologist who i see both next week. im happy i was put straight on insulin because it confirms to mw that something else is going on. knowing my mom had a similar experience of "we dont think youre type 2" but nothing came from the one blood test and now shes on meds and i see how they affect her, im nervous to find out what type i actually have for sure. diabetes runs in my family, so i didnt have the issue of feeling alone like ive heard other people, but it did come as a shock. ive beem overweight my whole life but always very active and cared about my diet. the only way i can imagine myself being type 2 is if my family ended up not noticing growing up because i was so active as a child... never had a bad a1c or blood glucose though so i dunno

[@gabrielng05]

Hi Justin I was diagnosed with Type 33 yrs old, you are not alone

[@carol-annemartinalolafrase8473]

My bf is type 2 i checked my blood sugar it was 7.5 im 33 so walk in time to check if im type 1 or type 2

[@sarahmee8759]

I was in hospital waiting to find out what was wrong with me. I found out it was diabetes when I caught a doctor looking at me whilst giving out to a nurse saying ‘why has she not been given her insulin’! This was in April still a big shock.

[@Sanddollarbs]

I was diagnosed in September 23, 2021 at age 39 with LADA. Your story is sooooo similar to mine. By the the way…..Hello from The Bahamas. 🇧🇸🇧🇸

[@diabe_tech]

Hi!!! LADA twins 👯

[@kittyb2113]

TikTok started showing me your videos just before I found out I had type 1/LADA 😄

[@diabe_tech]

😍😍😍

[@gatorademe]

I turned 29 5 days ago. The last 2-3 few weeks I also started rapidly losing weight even though I was trying to gain weight for strength training and became extremely thirsty. 2 days after my birthday I became violently ill and went to the ER and it looks like I most likely have Type 1 diabetes but haven't gotten the diagnosis yet. Last August my A1C was 5.3 and less than 8 months later it jumped to 12.0. Crazy how fast it came on for me but I know God is with me. Thanks for sharing your story!

[@diabe_tech]

Hey man, welcome to the club no one wanted to join! Follow me on instagram or Tik tok for more helpful clips - @diabe_tech. It’s a lot to take in at first, but gets easier with time. Get an Endo and diabetes educator - it’s key! You got this!

[@dinkster1729]

@@diabe_tech Read a lot, too. Some RD/CDEs are great. Our first one was. Some are terrible. Some RN/CDEs are great. Some are terrible. Some endocrinologists are great and very understanding and some are terrible. Ours, at least, when she became aware after 23 years that my husband had hypoglycemic unawareness prescribed an insulin pump straight away. He is disabled so I think that's why he got such shoddy treatment for the first 23 years after diagnosis. It did a lot of damage to our relationship with our kids because they couldn't take his temper tantrums and his passing out and his odd and often nasty remarks all because of low bg or high bg. It's a scandal the way disabled people with type 1 diabetes are treated. We deserve much better.

[@wesmoran5215]

Hi Justin! I am glad that you got to an endo and have the correct treatment now. it's so wild that you were only given metformin and no other guidance. Even if you had been t2, there's a lot more guidance needed! My diagnosis story starts when I was a teenager being told there was excess sugar in my blood, but not much was done about it. I continued to exhibit signs of prediabetes throughout that period. When I was in college, I would get The Eternal Thirst. There was a lot of shame in my family about diabetes, as there's a strong genetic showing of t2, almost enough to qualify for mody. For example, I drank 2 jones sodas one day, and my mom told me that one day I would go into a diabetic coma and die. This seemed weird, as i wasn't diabetic. It's possible that she knew more than I did, but we don't know. In 2013, i tested at 300 in a free clinic, but didn't get conclusively diagnosed because every test after that was 90-97. I continued to be 'normal' until around 2016, when i noticed *intense*, like disturbing cravings for sugar. I blamed myself, didn't seek help about it because I figured I would just be told to lose weight. Fast forward to 2022, for an unrelated hospital visit my blood glucose came back 255. They didn't tell me about this, even though it could've been the reason I wasn't feeling good. Later that year, I noticed i could barely stand without feeling faint. My heart was beating erratically. I didn't feel good. I went to the doctor and didn't suspect diabetes, but did a routine a1c test anyway. My last test had come out as 4.9, but this one was 10.2. My blood glucose was 380. Diabetic! c-pep test didn't indicate t1 or lada, but I am dependent on long acting insulin. with long acting, glp1 and metformin, I'm able to keep myself in the 5.3-5.5 range, which is solidly pre-diabetic. I will probably progress to needing mealtime insulin as well, as i have a problem with really bad spikes, but for now, I am happy to only need one injection a day. I also credit dexcom with saving my life because it is much easier to be compliant when you don't have to do constant fingersticks.

[@wesmoran5215]

I've since learned that insulin insufficiency issues can show up like they showed up for me - in and out, swinging back and forth, allowing someone to elude diagnosis, and then show up permanently. I wondered for a long time whether I really have LADA, because of the fact that i truly cannot manage this without insulin. i've tried several taper experiences and they were disastrous. right now i'd rather look after an occasional light low (so...like ...60s) than constantly be fighting a war to keep myself out of the 300s while not being able to eat anything but ice cubes. At this point i don't think it matters- what matters more is my diabetes educator and i knowing when it would be time to increase insulin needs - for example, to mealtime/daytime/MDI.

[@dinkster1729]

@@wesmoran5215 If you are t2d (type 2 diabetic), then, maybe, Ozempic or Rybelsus would get you off insulin. You really should find out what type you are. There are other tests to determine if you are t1d besides C-peptide as well, I think. Good luck! A pump linked to a cgms that controls the flow of insulin really works great. We have the Medtronic 780 G and the Guardian 3 cgms. It's incredible! Unless our set has failed, we rarely have spikes any more.

[@janansberry6406]

Your story sounds very familiar. My husband at 27 was losing weight like you, drinking and peeing a lot. His blood sugar was elevated and for some crazy reason (probably age ) he was given pills. A week later I got the call from work that he felt horrible and his vision was failing. I took him to the hospital where his blood sugar was through the roof and he had dka. He was admitted. He was finally diagnosed correctly as a type 1 and given insulin. Remember to advocate for your friends and loved ones to get the best tools available. You need to question what does not make sense. Yes you are correct that social media can be very helpful and sometimes we find answers to our questions. That was thirty plus years ago. You can live a long and healthy live with type 1 diabetes.

[@cireldagagobenitez8618]

Que usted concidera buenas herramientas , por ejemplo la alimentación ?? saludos

[@jawlig]

I was in DKA when diagnosed at 25 with dangerously high BG and ketones. So that already flagged as likely T1, then my blood results showed antibodies to confirm

[@DiabeticClutz]

I was diagnosed with LADA at 19 in 2010!

[@diabe_tech]

LADA twins!

[@Ana-el9eu]

I am starting to wonder if I am LADA. I was 29 when I was diagnosed as a type 2. They put me on metformin which I didn’t tolerate well at all could never go over 500mg a day. My D3 was also critical as well. This was February By December when I did my labs, I get a call of my doctors freaking out asking if I am ok. My A1C was 14. They immediately put me on levamir until I saw a endo in February or March. I had lost 80lbs. I also went into DKA twice between December to March. I have been on an insulin pump now for 7.5 years. All I remember prior to my initial diagnosis was I was tired all the time. Never put much thought into how thirsty I was now that I think about this. My C-peptide has been done a few times and still doesn’t indicate much.

[@diabe_tech]

Get the autoantibody test! You sound LADA to me!

[@JeffreyWright-z3l]

You story is so Familiar where is my type one story? It’s almost a year for me.

[@dpbraswell]

I was told I had Type 2 when I was 30. Ten years later I went to a new endocrinologist and she told me that I was actually Type 1. I'm on Dexcom and Omnipod. My A1c is the lowest it's ever been at 6.

[@diabe_tech]

Wow! We’re misdiagnosis twins. Glad you’ve got it under control :)

[@EdisonMwenya-xd1pt]

Encouraging story i am also a type 1 diabetes.

[@zippytippy]

Me too! 30 yrs ago type 2, thats 32years ago for me. Boy have things changed! I had an update and my A1c is 8.4 I can't seem to get it down.

[@hemanthck2784]

Hi Justin, my wife is TD1 its been 2 years now. Every 3 months we test the necessary tests, Now microalbumin is little high. Any suggestions that would really help us.

[@karlahernandez5750]

Properly diagnosed at 67. I knew something was really wrong when I weighed 100 lbs. I had lost 46 lbs.

[@diabe_tech]

That is a major sign! So glad you got diagnosed properly 🫶🏼

[@congi190]

I was diagnosed at 24 this past August, I got really sick 4th of July weekend which triggered my immune system to attack my pancreas

[@diabe_tech]

oh wow!

[@nekromantik2009]

I was diagnosed at 1 now 38 :/

[@chrissyfoley7361]

I’m a long timer too, 56 years now. Diagnosed at 12.

[@mranderson5668]

As a type 2, if my pills aren't working, does that mean I'm LADA type1.5???

[@stephenmcd7998]

i had a similar first expericne with my initial dr putting me on a pill until my mother was able to get me into an endocrinologist at wvu. i was fine with the shots until a couple months later and i suddenly freaked out and couldn't give myself shots for a couple days (i made my mother do it)

[@diabe_tech]

So many people get misdiagnosed later in age - crazy!!

[@absiyehassan36]

I got it when I was 11 years old

[@marinakiell1069]

What date did this happen?

[@lindseyquennell1457]

What is your date of diagnosis?

[@pepearechar8007]

❤

[@OmEgA766]

Hey bud I think I may have this too my sugar drops and I get all emotional I woke up this morning with blood sugar around 73 would this actually be hypoglycemia?

[@marinakiell1069]

The number 73 isn’t technically low but maybe because it dropped from a larger number

[@mndyD9]

Love your channel and your reviews on different tech that is out there! 🩷 Thank you so much for sharing your story! I got diagnosed with Type 1 LADA one month ago at 32. It’s been so hard navigating everything and honestly I have learned more from diabetic creators like you than my doctors lol. I’ve learned more day to day stuff vs just the medical jargon and “guidelines”. So thank you again 🩷🩷🙏🏼