I was diagnosed with t1d on 10/5/2023 at the age of 46. Leading up to my diagnosis I had the frequent urination, thirst, blurred vision, loss of 50lbs in a month. I ended up in the ER in DKA with rapid heart rate, shortness of breath, and lethargy. I told the triage nurse that I've never been diagnosed with diabetes, but I was pretty sure I was in DKA. She asked me why I thought I was in DKA? I explained the symptoms I mentioned above...they took me in right away. My heart rate was at 120 at rest; blood glucose was at 500, A1C was at 12. The doctor came in and said you pretty much diagnosed yourself...how did you know. I told her that I was a nurse and I work with t1d students in the school setting. I then asked her which diabetes I had. She was like that is a good question. She ordered the blood test and sure enough, I was type 1.
Every time I hear the word Metformin I still shudder. I was misdiagnosed as Type 2 for 2 years when I actually had LADA. I was on Metformin for a lot of that time and, as my pancreas got less and less effective at producing Insulin, I was just given more and more Metformin. In the end I had lactic acidosis and had leg cramps so intense I nearly passed out. Stopping Metformin fixed that instantly, but I still wasn't correctly diagnosed for another 6 months after a LOT of debate with my doctors. After a got correctly diagnosed and put on insulin, it was amazing the number of mystery health issues just disappeared! LADA needs a LOT better education in the healthcare industry.
Misdiagnosed as T2d for several years. Correctly diagnosed T1D in 2020 at 67 years old after losing 46 lbs. I had to DEMAND that I be tested for T1D. The doctor was shocked when the test results came back. Surprise, surprise I told you something was really wrong.
I haven't finished the episode but wanted to go ahead and comment because something she said triggered me. It was said that she "didn't fit the picture" of type 2 diabetes. I believe this feeds into the bias that doctor's have. Diabetes doesn't always have a "look". I was misdiagnosed as type 2 for about 6 years prior to my diagnosis. I have always been overweight. I was in undergrad studying nutrition to be a registered dietitian when I started having some health issues. I actually had been having night sweats, but didn't think anything of it. One day I went to donate blood on campus, but they wouldn't take my blood because my heart rate was too hight (120s). I immediately went to student health, where they found my fasting BS to be elevated (about 124). I was given metformin and to come back for routine check up. At this point my diet wasn't super unhealthy, but I was also going to the gym every day (and going to get fast food after that), and also walked around campus a lot. I was losing weight, but that's why I was going to the gym. A year later, my a1c was 10 and I was given glipizide and told to lose 10 lb and come back to my PCP. I had already had 1 autoimmune disease (vitiligo) at that point and I asked if it could be autoimmune related. I was told no. I do have a strong family hx of type 2, as well as being overweight which is why I believe my proper care was delayed. I was already trying to lose weight at this point (had been my entire life basically). I asked for an endo referral. Endo also told me she didn't think it was autoimmune related but I begged her for testing to see. I was on 4 diabetes meds at this point (metformin, glipizide, farxiga, and ozempic). My tests resulted but my provider didn't "see it" until my follow up with her 6 months later. Turns out I was right!! My GAD 65 antibodies resulted... greater than 25,000, confirmed with dilution. She said "yep you have type 1". I was so relieved, I cried. Now, almost 10 year after my initial diagnosis of type 2, I am a registered dietitian and I help empowered those who have been diagnosed with diabetes to ask for proper testing regardless of weight or family history. My suffering of 6 years could have been avoided if my doctor would have tested me when I first asked!
Care to comment on my situation then with all that experience and knowledge? Long story shortER. Endocrinologist changed my diagnosis from type 2 (after 20 years) to type 1. C-peptide was .5, antibodies and GAD65 were negative and normal. The last Endocrinologist had exact same 3 test results and said I have type 2. Current Endocrinologist has same 3 test results and says I'm type 1. Am I really more if a type 1.5 as some call it? I'm on the Medtronic system and Current A1c is very good as in the 5's.
Sounds like you are likely type 1 but not GAD65 antibody positive. There are about 5-6 other antibodies that can indicate type 1. GAD65 is just the most common. I can’t list the others off the top of my head. Zinc something or other is another common one. Main thing is proper treatment, and it sounds like you are on the right road since you are on insulin. Type 1.5 IS type 1 period because it’s autoimmune related. 1.5 indicates a slower onset. I kind of wish that term wasn’t invented because it makes for a lot of confusion.
Same and I literally just made a similar comment before I saw this. It was 12 years ago for me and I'm still mad about it. And medical weight bias is bad for thin people, too, so everyone should care about it. I have a friend who had a heart attack and her doctor almost didn't catch it because she was thin, active, barely 50, "the picture of health" - when they went in the blockage was so large, they realized if one more week had gone by she'd probably be gone. This shit hurts everyone.
@@sarajspinc.8373 This came up years ago in connection to the Halle Berry story. She made the news claiming (supposedly) that she was doing just fine without insulin. She was known 2 b a type 1 diabetic diagnosed as a young woman when she was slim. This upset many because of course type 1 diabetics can't live without insulin no matter what they do and don't do etc. So naturally people speculated =is she an idiot? Is she listening to a quack? Was she misdiagnosed initially? Was she just an exception to the rule case meaning maybe she was/is type 2 even though she wasn't/isn't overweight etc? I don't think the story ever received the follow-up it should have gotten. It's so potentially harmful when airhead celebrities help spread bad information even if they aren't doing it intentionally. Before u know it many people aren't giving their kids insulin! Just like all the cancer patients who buy books from people who were put on the quackwatch list a long time ago. Stan Burzynski and fake Doctor Robert Young etc just 4 starters.
Was diagnosed 22 years ago. The idea Type 1.5 or LADA wasn’t around. My brother was just diagnosed with Type 1 six months prior. I had just finished some training in the Air Force and didn’t notice my symptoms. I was sort of ignorant and wanting to ignore my symptoms. Type 1 is a discharge from military. Eventually I did test, the meter didn’t like my results just said “hi” for a pegged reading. Went to the hospital with a blood glucose of 650 and spent a week there. This diagnosis did result in my discharged from the military, eventually. On bright side it delayed another round of Air Force training is to travel for. This allowed me to stay home where I met my future wife of 20 years. Me adjusting to my diagnosis and treatment went well since my brother had just went through a lot of learning. I was able to take most of it in stride seeing how well he handled it.
I’m 65 y/o and I’ve had TD1 for 40 years. I was diagnosed at 24. My dad passed away at my age over 30 years ago due to complications from Type 2. But I still didn’t understand diabetes until I was diagnosed and like a lot people I didn’t understand the difference between 1&2.
One difference is that Type 1 is an autoimmune disorder and Type 2 is basically insulin resistance. For me, my diagnosis came with sudden symptoms and a glucose reading over 750. If you go to the doctor regularly, the doctor checks your fasting glucose annually. Type 2 can be predicted based on rising glucose numbers from year to year. My glucose reading a year before my diagnosis was 100 (normal). The fact that my initial glucose reading was 750+ should have triggered further testing. Type 1 is not preventable.
I was sitting at the movie theater and a preview came on the screen about Type I diabetes and that you can get it at any age. I think it’s great that more and more info about it is getting out in the community, because really people are not aware and know little about it. Even some doctors think it can only happen to juveniles. My doctor did, I had to assist on an antibody test and a C peptide test.
if you’re not ready for a pump consider an insulin patch. i use the Cequr Simplicity patch and love it. I would like Diabetech to do a show on the Cequr patch. it is an option for those who don’t want to take mealtime injections but aren’t ready for a pump.
Diagnosed at age 40 through a random company health check organised to help employees lead healthier lives. Had started a health kick the year before so put all the symptoms down to exercising more, making me thirsty, which makes you pee more, and weight loss the result of my hard work.
I was diagnosed with t1d in the middle 70's as a teenager. The only way to test for sugar was in urine, which was not ideal in high school! I only took one injection a day, in the morning. Believe it or not, that's the way it was done! When glucose meters came on the scene, my family couldn't afford one. Then when they were free with purchase of test strips (which were not covered under even the best insurance) they made "strip splitters" to double them as they were to expensive to buy! I went the first 10 years with diabetes not knowing what my blood sugars really were. Nowadays there is so much new technology it's mind-blowing, but again, the expense is prohibitive. My Freestyle Libre 3 costs $100 for two per month with insurance but I'm always jealous of those with better insurance/employers who provide more. I'm 63 now and feel lucky I've made it this far considering all of the really high blood sugars those first 10 years. Certainly looking forward to Medicare so I can better afford all this newer technology.
The way i was diagnosed was somehow strange. I was suffering from strange symptoms, for example, frequent urination in particular. I remember that I went to the doctor, but I think he did not think that I had diabetes, so I returned home. After a few months, my grandmother came to visit us (knowing that she suffers from type 2 diabetes). My sister was checking her blood sugar, and then, for no reason, I also took a test, and my blood sugar was 360 at the time.
I was misdiagnosed and treated as a Type 2 diabetic for 17 years before I was allowed to see an endocrinologist. I was tested for Type 1 and it was confirmed that I was a Type 1.5. In hindsight, all my symptoms finally made sense as to why I couldn't maintain control.
Being a surgeon as Kristen is, and having to deal with long hours in surgery, I'd think that a pump would be the way to go. Pump being able to lower and/or stop basal rate to prevent a low without intervention would seem ideal in her case. Also hitting the ground running with a pump before getting pregnant would seem very advantageous being much restricted glucose levels are needed. IMHO Enjoyed the interview.
I was diagnosed while working in Afghanistan. I lost ten pounds in a week and figured I had diabetes or cancer. Luckily my glucose was 262 lol. I had to hide it for several months until I could get to Dubai. But I was able to control it with a very restrictive diet until then. I was diagnosed as type 2 without any further blood tests. That was in 2019. I was finally properly diagnosed just a few months ago as a type 1at the age of 43.
So grateful for you and for bringing this awareness. My story is so similar to hers but mine was to the point I was having pain, numbness and tingling from my waist down through my feet. My antibodies were normal however c-peptides and all other tests indicate a positive result for type 1. If it weren’t for family history, I wouldn’t have known to advocate for myself and go get my own bloodwork done, because the NP at emergency sent me home with metformin saying “adult onset type 1 isn’t a thing.” They didn’t even test my bs. It’s been about 1 month now and after 1 day of insulin my symptoms have started subsiding. Your videos have helped tremendously and I hope they help others learn and advocate for themselves.
You should go to that hospital and tell them that they need to educate their medical personnel about type 1 diabetes so what happened to you doesn’t happen again. We are not in the dark ages anymore.
@@anitastokar98 I’m in the process of all of that. They requested feedback so I provided details along with the NP’s name and to no surprise they didn’t even respond. I will be requesting the bill be written off and the next step would be the medical board if no action.
I was diagnosed 4.5 years ago, when I was 59. I had been “pre-diabetes” for many years but was stable. I saw my rheumatologist and for some reason she ordered a glucose blood test and it came back unusually high. I made an appointment with my primary doctor, but it would be a month so I got a glucose meter and did finger sticks 3 times a day for a month with mostly high readings. When I saw the doctor and showed him my readings he quipped “You are presenting more like a type 1!” He started me on insulin then and there, and did a blood test for antibodies. 2 days later he called on a Saturday and told me I was confirmed type 1/1.5/ LADA. I started taking diabetes education classes and one of the diabetic nurses (a type 1 herself) said I should think about getting on Dexcom 6, which I was able to do before I could actually see my endocrinologist. Now I’m doing well and thanks to Dexcom, I am 96% time in range. Diabetes runs in my family (both sides). I have lost 2 type 1 cousins (diagnosed young) to complications and lost my favorite uncle (type 2) to complications.
I was 25 years old when I was diagnosed with diabetes 41 years ago. I had lost weight, was very thirsty and my parents were concerned. So I went to the doctor and they knew it was diabetes but not sure which one. They thought I was too old for Type 1 but too young for Type 2. So they put me on a strict diet for a week and when my urine sugar was still high they told me I was a Type 1 diabetic, gave me an insulin regime to follow, and the same strict diet. I think I was showing signs of diabetes for 2 or 3 years before I was diagnosed. I had had a company physical for an internship and my 1st job and for both my urine sugar was high (the test was in the afternoon, after lunch). When I did retests they were early in the morning, I hadn't eaten yet and my urine sugar looked normal. So I thought the 1st tests were wrong but should have paid more attention. The odd thing was I changed jobs and sat across from a man who had Type 1 diabetes with several complications. It's an odd coincidence but within 6 months I had the symptoms (lost weight, always thirsty) and was diagnosed with Type 1 diabetes. No one in my family had type 1 diabetes but several older relatives had type 2. Diabetes education wasn't great in those days and I actually learned the most from cookbooks for diabetics. A few years later I moved to California and got a great doctor who started me on counting carbohydrates to determine insulin dosage and I started taking multiple insulin injections a day. Years later when we wanted to have kids I started using an insulin pump (I think I'm on my 5th or 6th one) and now also use a CGM. The advances in technology have been amazing. I heard of LADA several years ago and asked my endocrinologist about it but he didn't have much information and said that I had had diabetes for so long that any tests would not give conclusive information. So far no complications (knock on wood) although having diabetes can make other diseases a bit harder to manage.
I was misdiagnosed at age 40. I was just told I had Diabetes, I knew nothing of type 2 or 1, was handed an RX for some pills, the food pyramid, and told to eat better and exercise. I was in the “honeymoon period” for years, when finally I was prescribed insulin after 6 years because I had persistent high blood glucose. I could never get my A1c below 7.8 even though I followed my endocrinologist’s orders very carefully. I was never prescribed a c-peptide or antibody tests. I was doing a diet program at another hospital when I ran into a doctor I knew who told me I sounded like type 1.5 or LADA. Sure enough, I had been misdiagnosed for years. I have been living with diabetes for 25 years now.
I was diagnosed 3 years ago with T2D at 56 after being pre-diabetic for several years. Metformin improved my A1C for the first year, but my A1C worsened despite a low-carb diet. So my PCP referred me to an endocrinologist 3 years after my initial diagnosis. My autoantibodies were 5,815, and I was diagnosed with LADA.
I got diagnosed with T1D when i was 24 years old. I wanted to say hello🤗 i wish you all the best in life, and thank you for all that you do sometimes being a T1D can be lonely and you posting helps, and we gain knowledge about diabetic life lol. 😊
I was diagnosed at 26. I’m now 70 it was the same for me. I looked healthy, my BMI was fine, so Dr. did not think about it, but I was ending up in the hospital every weekend due to alcohol and the wrong foods. Finally bloodwork was done and boom I was in the hospital being taught how to cope with the diagnosis. So may advances since then.
Disclaimer: This is not medical advice. A insulin pump could really help to avoid lows in middle of activities like operations as mentioned. Since with a pump you have the option to switch to a much lower basal rate before you start your activity like built in exercise mode for example. With MDI the issue is experienced is when you have your basal, thats fixed, and if you are on a activity you didn’t anticipate that background insulin can affect you. Pumps are really good at managing this by default. This is from my experience starting with Mix Insulins, then MDI and now on a Pump.
Oh man, this brings back memories, and also I am triggggerrred lol. Because what she said about 9 minutes in about how her doctor said she didn't fit the image or expectations of a type 2, so she wanted to figure it out? Well I DID fit their image of a type 2, and thus did not get my correct diagnosis for like a year (at which point I was very very sick, as you can imagine). My BG was like 350-400 when I first went in, my A1C was 12 or something, I was 39. But because I was about 30 lbs overweight, I got dx'd type 2 and - as you put it - sent on my merry way. And got cheered on as my body wasted away to nothing because they thought I was being a "good diabetic." Nope - my body was consuming itself, thankx, bc it couldn't use the fuel I was eating! And that, my friends, is called medical weight bias. That was a dozen years ago now but sometimes I am still not over my fury at it all. Because like you said - it seems like a fairly simple concept to grasp, and if my doctor had showed a little curiosity at my numbers, my habits, my self-reporting, and seen past my weight, I could have gotten the right help sooner. Luckily I'm someone who reads the internet obsessively and I figured it out on my own, got a new doctor who checked my GAD antibodies (which were off the charts) and that is why I'm alive today, the end. Maybe your video will save someone, too.
Thank you for sharing your story! So important. Glad you got the help you needed and advocated for yourself. It’s so important to do so as we are just another of many patients these doctors see. As someone once told me “YOU care the most about YOUR diabetes”. Again, so glad you chimed in.
Short version: Thought I was T2 for several years. I was very skinny. Always tired. Always thirsty and hungry. Then DKA coma. 930 mg/dl. Diagnosed T1 at age 57. No longer super skinny. No longer hungry and thirsty. My energy came back. Now with pump and CGM. Annoying, but better than the alternative.
I was diagnosed as type 2. I was overweight and my grandpa and mother were type 2. I went with that for a few years. My A1C continuously went up during this time. I didn’t know much about the difference between type 1 and type 2. Finally, when my A1C got up to 15, I was sent to an endocrinologist, did the blood test, and it was confirmed type 1. I don’t say type 1.5 or LADA, because obviously type 1 can happen at any time in life. I’m type 1. If it’s a simple blood test, why aren’t we just doing the test when someone’s A1C is abnormal so we know right away?
Hey Justin! Awesome video, as always. In the Uk, I get my senors, insulin and other medications for free because I am on insulin and have LADA. From the UK charity 'Diabetes Uk' You have to be on long and short-acting insulin to qualify for the free CGMs. However, the UK NHS will only give out Freestyle Libre 2 sensors and this doesn't apply to other CGM but it's still good and has made me understand the way how my insulin works. Oddly I spike really badly with whole milk, which is strange. As I said to you, I didn't that I had LADA two years after I was diagnosed and not only that I was misdiagnosed twice and lately I had been to an appointment for another reason and this other particular doctor said, "You have very robust numbers" and wanted me to be tested again through the GAD test, because this doctor wanted to officially know that I was either T1 or T2...OH DIABETES!....OH UK NHS HEALTH SYSTEM!....OH YOU KRAZAY YOU!!!
I was diagnosed at age 19, in 1987. I went from feeling normal to knowing I was going to die over the span of about 6 weeks. I went to a primary care doctor that I had never seen before. He had me pee in a cup and then told me to go to the ER immediately. He wrote a letter to give them when I got there. I didn't open it so I have no idea what it said. After spending a short time in the ER I was moved to a regular room and spent 8 days there. I have no idea what any of my numbers were at the time but years later my mother told me the ER doctor told her I should be dead. I was overweight at the time and I remember the endo in the hospital telling me it wasn't my fault and that there was nothing I could have done to prevent it. 25 years after I was diagnosed one of my sisters was also diagnosed with T1. She was in her mid-40s at the time. Fortunately she too was diagnosed correctly. She was in DKA as well and like me, went from feeling normal to nearly dying in a short span of time. Other than the two of us here is nobody else with Type 1 in our family.
My daughter was diagnosed at 17, I started having mild symptoms but i.waa just leaving on a 3 month trip to Europe. Went on the trip..it was hot, didn't think anything of it. Lost about 20lbs while we were gone . Came home to blood tests for a new doc and ahe called me and said your A1C is 14 and put me on basal insulin right away. I am now on short action insulin as well and awaiting the test in a few weeks to see if i show the antibodies. It is a year since diagnosis for me, i am 58 and live in Canada
I was diagnosed at 26 42 now with no family who has diabetes. They put me on metformin at first said I never see the doctor. Went back to emergency ended up on insulin.
Never been tested for Type 1 or type 2 but have been n insulin from day one. Never known anything else. Was in Afghanistan when I was diagnosed which made things complicated. lucky the American base had insulin and the nurse was able to get what I needed. She rocked up with a bunch of needles and a few vile of insulin and so it started.
@@mral6809 Not really applicable in Afghanistan the nurse took the blood to be tested the doctor gave her the script so she could get it from the sickbay. I resupplied from the chemist in Kabul and never had a script. Scripts were not used at local chemist but not all of them stocked insulin as they needed a fridge and most did not have one
@@neilreynolds432 My appologies I meant no disrespect. I thought you were now getting your insulin through an American facility. I know that when my sister was visiting France, she was robbed of all her T1 equipment and insulin, they replaced everything without a prescription. Once her insurance kicked in she was able to replace everything she needed. This was the oppisite when she was in Pennsylvania during 9/11/2001 attacks. The hospitals would not give her the insulin she needed without a prescription. Her company / coworkers helped her get what she needed in less than a day but was still fighting with the hospital and insurance. I'm glad to hear you had a significantly better experience.
Me tapping my fingers ... waiting for LADA to have its own ICD10. Insurance companies have a very hard time understanding we are T1, but may still produce insulin - and may be fighting insulin resistance.
Back in the day it was only 9% of the population that were diagnosed after the age of 25 and the increase of diagnoses at an earlier age. Do not take what I am saying as fact since I am repeating infromation over a decade old. This channel just mention 20% and not the 9% I once was informed.
I was recently at some event and I saw someone who mentioned they were on Metformin and one other drug but I didn’t have enough time to say what I wanted to say which was something like “you look so fit, maybe you should get tested for Type 1 Diabetes” I so wish I had been able to speak up and say that.
I think increased prevalence is just a part of the issue, and maybe not even the larger part of it. People have been ASSUMED to be type 2 (when they were actually LADA) for decades. Likewise, others have been assumed to be either type 2 or type 1 only to one day finding out they are actually MODY (another rabbit hole for you!)
Oddly I was diagnosed 1 month ago and I still don’t know what my diagnosis is. My PCP told me my pancreas was failing and I had type 1 then I talked to the “diabetic specialist” at the pcp’s office and she didn’t communicate with the pcp and said I have type 2 but she said type one is possible. So idk. I just know I take 20u of basal at night 5u of Bolus before each meal and I take ozempic. And with all that I still average a 133mg/Dl on a low carb diet.
Hi. Dxed 8 months ago. I have seen the numbers 10% of T2 are LADA instead. But do you have exact numbers of how many T1s are LADA worldwide? Thanks. :) A1c 5,6% and 100% TIR 90 days. ;)
I was diagnosed with t1d on 10/5/2023 at the age of 46. Leading up to my diagnosis I had the frequent urination, thirst, blurred vision, loss of 50lbs in a month. I ended up in the ER in DKA with rapid heart rate, shortness of breath, and lethargy. I told the triage nurse that I've never been diagnosed with diabetes, but I was pretty sure I was in DKA. She asked me why I thought I was in DKA? I explained the symptoms I mentioned above...they took me in right away. My heart rate was at 120 at rest; blood glucose was at 500, A1C was at 12. The doctor came in and said you pretty much diagnosed yourself...how did you know. I told her that I was a nurse and I work with t1d students in the school setting. I then asked her which diabetes I had. She was like that is a good question. She ordered the blood test and sure enough, I was type 1.
Every time I hear the word Metformin I still shudder.
I was misdiagnosed as Type 2 for 2 years when I actually had LADA. I was on Metformin for a lot of that time and, as my pancreas got less and less effective at producing Insulin, I was just given more and more Metformin. In the end I had lactic acidosis and had leg cramps so intense I nearly passed out. Stopping Metformin fixed that instantly, but I still wasn't correctly diagnosed for another 6 months after a LOT of debate with my doctors.
After a got correctly diagnosed and put on insulin, it was amazing the number of mystery health issues just disappeared!
LADA needs a LOT better education in the healthcare industry.
Misdiagnosed as T2d for several years. Correctly diagnosed T1D in 2020 at 67 years old after losing 46 lbs. I had to DEMAND that I be tested for T1D. The doctor was shocked when the test results came back. Surprise, surprise I told you something was really wrong.
I haven't finished the episode but wanted to go ahead and comment because something she said triggered me. It was said that she "didn't fit the picture" of type 2 diabetes. I believe this feeds into the bias that doctor's have. Diabetes doesn't always have a "look". I was misdiagnosed as type 2 for about 6 years prior to my diagnosis. I have always been overweight. I was in undergrad studying nutrition to be a registered dietitian when I started having some health issues. I actually had been having night sweats, but didn't think anything of it. One day I went to donate blood on campus, but they wouldn't take my blood because my heart rate was too hight (120s). I immediately went to student health, where they found my fasting BS to be elevated (about 124). I was given metformin and to come back for routine check up. At this point my diet wasn't super unhealthy, but I was also going to the gym every day (and going to get fast food after that), and also walked around campus a lot. I was losing weight, but that's why I was going to the gym. A year later, my a1c was 10 and I was given glipizide and told to lose 10 lb and come back to my PCP. I had already had 1 autoimmune disease (vitiligo) at that point and I asked if it could be autoimmune related. I was told no. I do have a strong family hx of type 2, as well as being overweight which is why I believe my proper care was delayed. I was already trying to lose weight at this point (had been my entire life basically). I asked for an endo referral. Endo also told me she didn't think it was autoimmune related but I begged her for testing to see. I was on 4 diabetes meds at this point (metformin, glipizide, farxiga, and ozempic). My tests resulted but my provider didn't "see it" until my follow up with her 6 months later. Turns out I was right!! My GAD 65 antibodies resulted... greater than 25,000, confirmed with dilution. She said "yep you have type 1". I was so relieved, I cried. Now, almost 10 year after my initial diagnosis of type 2, I am a registered dietitian and I help empowered those who have been diagnosed with diabetes to ask for proper testing regardless of weight or family history. My suffering of 6 years could have been avoided if my doctor would have tested me when I first asked!
Care to comment on my situation then with all that experience and knowledge? Long story shortER. Endocrinologist changed my diagnosis from type 2 (after 20 years) to type 1. C-peptide was .5, antibodies and GAD65 were negative and normal. The last Endocrinologist had exact same 3 test results and said I have type 2. Current Endocrinologist has same 3 test results and says I'm type 1. Am I really more if a type 1.5 as some call it? I'm on the Medtronic system and Current A1c is very good as in the 5's.
Sounds like you are likely type 1 but not GAD65 antibody positive. There are about 5-6 other antibodies that can indicate type 1. GAD65 is just the most common. I can’t list the others off the top of my head. Zinc something or other is another common one. Main thing is proper treatment, and it sounds like you are on the right road since you are on insulin. Type 1.5 IS type 1 period because it’s autoimmune related. 1.5 indicates a slower onset. I kind of wish that term wasn’t invented because it makes for a lot of confusion.
Same and I literally just made a similar comment before I saw this. It was 12 years ago for me and I'm still mad about it. And medical weight bias is bad for thin people, too, so everyone should care about it. I have a friend who had a heart attack and her doctor almost didn't catch it because she was thin, active, barely 50, "the picture of health" - when they went in the blockage was so large, they realized if one more week had gone by she'd probably be gone. This shit hurts everyone.
@@sarajspinc.8373 This came up years ago in connection to the Halle Berry story. She made the news claiming (supposedly) that she was doing just fine without insulin. She was known 2 b a type 1 diabetic diagnosed as a young woman when she was slim. This upset many because of course type 1 diabetics can't live without insulin no matter what they do and don't do etc. So naturally people speculated =is she an idiot? Is she listening to a quack? Was she misdiagnosed initially? Was she just an exception to the rule case meaning maybe she was/is type 2 even though she wasn't/isn't overweight etc? I don't think the story ever received the follow-up it should have gotten. It's so potentially harmful when airhead celebrities help spread bad information even if they aren't doing it intentionally. Before u know it many people aren't giving their kids insulin! Just like all the cancer patients who buy books from people who were put on the quackwatch list a long time ago. Stan Burzynski and fake Doctor Robert Young etc just 4 starters.
Was diagnosed 22 years ago. The idea Type 1.5 or LADA wasn’t around.
My brother was just diagnosed with Type 1 six months prior.
I had just finished some training in the Air Force and didn’t notice my symptoms. I was sort of ignorant and wanting to ignore my symptoms. Type 1 is a discharge from military. Eventually I did test, the meter didn’t like my results just said “hi” for a pegged reading.
Went to the hospital with a blood glucose of 650 and spent a week there.
This diagnosis did result in my discharged from the military, eventually.
On bright side it delayed another round of Air Force training is to travel for. This allowed me to stay home where I met my future wife of 20 years.
Me adjusting to my diagnosis and treatment went well since my brother had just went through a lot of learning. I was able to take most of it in stride seeing how well he handled it.
I’m 65 y/o and I’ve had TD1 for 40 years. I was diagnosed at 24. My dad passed away at my age over 30 years ago due to complications from Type 2. But I still didn’t understand diabetes until I was diagnosed and like a lot people I didn’t understand the difference between 1&2.
One difference is that Type 1 is an autoimmune disorder and Type 2 is basically insulin resistance. For me, my diagnosis came with sudden symptoms and a glucose reading over 750. If you go to the doctor regularly, the doctor checks your fasting glucose annually. Type 2 can be predicted based on rising glucose numbers from year to year. My glucose reading a year before my diagnosis was 100 (normal). The fact that my initial glucose reading was 750+ should have triggered further testing. Type 1 is not preventable.
Not even sure why the term LADA is used. I’ve always just thought of people as type1, whether diagnosed at 5 years or 50 years.
I was sitting at the movie theater and a preview came on the screen about Type I diabetes and that you can get it at any age. I think it’s great that more and more info about it is getting out in the community, because really people are not aware and know little about it. Even some doctors think it can only happen to juveniles. My doctor did, I had to assist on an antibody test and a C peptide test.
if you’re not ready for a pump consider an insulin patch. i use the Cequr Simplicity patch and love it. I would like Diabetech to do a show on the Cequr patch. it is an option for those who don’t want to take mealtime injections but aren’t ready for a pump.
Diagnosed at age 40 through a random company health check organised to help employees lead healthier lives. Had started a health kick the year before so put all the symptoms down to exercising more, making me thirsty, which makes you pee more, and weight loss the result of my hard work.
I was diagnosed with t1d in the middle 70's as a teenager. The only way to test for sugar was in urine, which was not ideal in high school! I only took one injection a day, in the morning. Believe it or not, that's the way it was done! When glucose meters came on the scene, my family couldn't afford one. Then when they were free with purchase of test strips (which were not covered under even the best insurance) they made "strip splitters" to double them as they were to expensive to buy! I went the first 10 years with diabetes not knowing what my blood sugars really were. Nowadays there is so much new technology it's mind-blowing, but again, the expense is prohibitive. My Freestyle Libre 3 costs $100 for two per month with insurance but I'm always jealous of those with better insurance/employers who provide more. I'm 63 now and feel lucky I've made it this far considering all of the really high blood sugars those first 10 years. Certainly looking forward to Medicare so I can better afford all this newer technology.
The way i was diagnosed was somehow strange. I was suffering from strange symptoms, for example, frequent urination in particular. I remember that I went to the doctor, but I think he did not think that I had diabetes, so I returned home. After a few months, my grandmother came to visit us (knowing that she suffers from type 2 diabetes). My sister was checking her blood sugar, and then, for no reason, I also took a test, and my blood sugar was 360 at the time.
I was misdiagnosed and treated as a Type 2 diabetic for 17 years before I was allowed to see an endocrinologist. I was tested for Type 1 and it was confirmed that I was a Type 1.5. In hindsight, all my symptoms finally made sense as to why I couldn't maintain control.
Being a surgeon as Kristen is, and having to deal with long hours in surgery, I'd think that a pump would be the way to go. Pump being able to lower and/or stop basal rate to prevent a low without intervention would seem ideal in her case. Also hitting the ground running with a pump before getting pregnant would seem very advantageous being much restricted glucose levels are needed. IMHO Enjoyed the interview.
I was diagnosed while working in Afghanistan. I lost ten pounds in a week and figured I had diabetes or cancer. Luckily my glucose was 262 lol.
I had to hide it for several months until I could get to Dubai. But I was able to control it with a very restrictive diet until then.
I was diagnosed as type 2 without any further blood tests. That was in 2019. I was finally properly diagnosed just a few months ago as a type 1at the age of 43.
So grateful for you and for bringing this awareness. My story is so similar to hers but mine was to the point I was having pain, numbness and tingling from my waist down through my feet. My antibodies were normal however c-peptides and all other tests indicate a positive result for type 1. If it weren’t for family history, I wouldn’t have known to advocate for myself and go get my own bloodwork done, because the NP at emergency sent me home with metformin saying “adult onset type 1 isn’t a thing.” They didn’t even test my bs. It’s been about 1 month now and after 1 day of insulin my symptoms have started subsiding. Your videos have helped tremendously and I hope they help others learn and advocate for themselves.
You should go to that hospital and tell them that they need to educate their medical personnel about type 1 diabetes so what happened to you doesn’t happen again. We are not in the dark ages anymore.
@@anitastokar98 I’m in the process of all of that. They requested feedback so I provided details along with the NP’s name and to no surprise they didn’t even respond. I will be requesting the bill be written off and the next step would be the medical board if no action.
Good for you!
I was diagnosed 4.5 years ago, when I was 59. I had been “pre-diabetes” for many years but was stable. I saw my rheumatologist and for some reason she ordered a glucose blood test and it came back unusually high. I made an appointment with my primary doctor, but it would be a month so I got a glucose meter and did finger sticks 3 times a day for a month with mostly high readings. When I saw the doctor and showed him my readings he quipped “You are presenting more like a type 1!” He started me on insulin then and there, and did a blood test for antibodies. 2 days later he called on a Saturday and told me I was confirmed type 1/1.5/ LADA. I started taking diabetes education classes and one of the diabetic nurses (a type 1 herself) said I should think about getting on Dexcom 6, which I was able to do before I could actually see my endocrinologist. Now I’m doing well and thanks to Dexcom, I am 96% time in range. Diabetes runs in my family (both sides). I have lost 2 type 1 cousins (diagnosed young) to complications and lost my favorite uncle (type 2) to complications.
This hit home to me. Diagnosed at 21. Blood sugar was at 600. Placed in hospital and after aome tests diagnosed as T1.
I was 25 years old when I was diagnosed with diabetes 41 years ago. I had lost weight, was very thirsty and my parents were concerned. So I went to the doctor and they knew it was diabetes but not sure which one. They thought I was too old for Type 1 but too young for Type 2. So they put me on a strict diet for a week and when my urine sugar was still high they told me I was a Type 1 diabetic, gave me an insulin regime to follow, and the same strict diet.
I think I was showing signs of diabetes for 2 or 3 years before I was diagnosed. I had had a company physical for an internship and my 1st job and for both my urine sugar was high (the test was in the afternoon, after lunch). When I did retests they were early in the morning, I hadn't eaten yet and my urine sugar looked normal. So I thought the 1st tests were wrong but should have paid more attention. The odd thing was I changed jobs and sat across from a man who had Type 1 diabetes with several complications. It's an odd coincidence but within 6 months I had the symptoms (lost weight, always thirsty) and was diagnosed with Type 1 diabetes. No one in my family had type 1 diabetes but several older relatives had type 2.
Diabetes education wasn't great in those days and I actually learned the most from cookbooks for diabetics.
A few years later I moved to California and got a great doctor who started me on counting carbohydrates to determine insulin dosage and I started taking multiple insulin injections a day. Years later when we wanted to have kids I started using an insulin pump (I think I'm on my 5th or 6th one) and now also use a CGM. The advances in technology have been amazing. I heard of LADA several years ago and asked my endocrinologist about it but he didn't have much information and said that I had had diabetes for so long that any tests would not give conclusive information.
So far no complications (knock on wood) although having diabetes can make other diseases a bit harder to manage.
I was misdiagnosed at age 40. I was just told I had Diabetes, I knew nothing of type 2 or 1, was handed an RX for some pills, the food pyramid, and told to eat better and exercise. I was in the “honeymoon period” for years, when finally I was prescribed insulin after 6 years because I had persistent high blood glucose. I could never get my A1c below 7.8 even though I followed my endocrinologist’s orders very carefully. I was never prescribed a c-peptide or antibody tests. I was doing a diet program at another hospital when I ran into a doctor I knew who told me I sounded like type 1.5 or LADA. Sure enough, I had been misdiagnosed for years. I have been living with diabetes for 25 years now.
Love this story. I was diagnosed at 17, so very close to LADA range. She is so sweet. (no pun intended) Really enjoyed this chat.
I was diagnosed 3 years ago with T2D at 56 after being pre-diabetic for several years. Metformin improved my A1C for the first year, but my A1C worsened despite a low-carb diet. So my PCP referred me to an endocrinologist 3 years after my initial diagnosis. My autoantibodies were 5,815, and I was diagnosed with LADA.
I got diagnosed with T1D when i was 24 years old. I wanted to say hello🤗 i wish you all the best in life, and thank you for all that you do sometimes being a T1D can be lonely and you posting helps, and we gain knowledge about diabetic life lol. 😊
I was diagnosed at 26. I’m now 70 it was the same for me. I looked healthy, my BMI was fine, so Dr. did not think about it, but I was ending up in the hospital every weekend due to alcohol and the wrong foods. Finally bloodwork was done and boom I was in the hospital being taught how to cope with the diagnosis. So may advances since then.
I am digagnosed late in life. I was also misdiagnosed as well. Keep up the good job.
Disclaimer: This is not medical advice.
A insulin pump could really help to avoid lows in middle of activities like operations as mentioned. Since with a pump you have the option to switch to a much lower basal rate before you start your activity like built in exercise mode for example. With MDI the issue is experienced is when you have your basal, thats fixed, and if you are on a activity you didn’t anticipate that background insulin can affect you. Pumps are really good at managing this by default. This is from my experience starting with Mix Insulins, then MDI and now on a Pump.
Oh man, this brings back memories, and also I am triggggerrred lol. Because what she said about 9 minutes in about how her doctor said she didn't fit the image or expectations of a type 2, so she wanted to figure it out? Well I DID fit their image of a type 2, and thus did not get my correct diagnosis for like a year (at which point I was very very sick, as you can imagine). My BG was like 350-400 when I first went in, my A1C was 12 or something, I was 39. But because I was about 30 lbs overweight, I got dx'd type 2 and - as you put it - sent on my merry way. And got cheered on as my body wasted away to nothing because they thought I was being a "good diabetic." Nope - my body was consuming itself, thankx, bc it couldn't use the fuel I was eating! And that, my friends, is called medical weight bias.
That was a dozen years ago now but sometimes I am still not over my fury at it all. Because like you said - it seems like a fairly simple concept to grasp, and if my doctor had showed a little curiosity at my numbers, my habits, my self-reporting, and seen past my weight, I could have gotten the right help sooner. Luckily I'm someone who reads the internet obsessively and I figured it out on my own, got a new doctor who checked my GAD antibodies (which were off the charts) and that is why I'm alive today, the end. Maybe your video will save someone, too.
Thank you for sharing your story! So important. Glad you got the help you needed and advocated for yourself. It’s so important to do so as we are just another of many patients these doctors see. As someone once told me “YOU care the most about YOUR diabetes”. Again, so glad you chimed in.
Short version: Thought I was T2 for several years. I was very skinny. Always tired. Always thirsty and hungry. Then DKA coma. 930 mg/dl. Diagnosed T1 at age 57. No longer super skinny. No longer hungry and thirsty. My energy came back. Now with pump and CGM. Annoying, but better than the alternative.
I was diagnosed as type 2. I was overweight and my grandpa and mother were type 2. I went with that for a few years. My A1C continuously went up during this time. I didn’t know much about the difference between type 1 and type 2. Finally, when my A1C got up to 15, I was sent to an endocrinologist, did the blood test, and it was confirmed type 1. I don’t say type 1.5 or LADA, because obviously type 1 can happen at any time in life. I’m type 1. If it’s a simple blood test, why aren’t we just doing the test when someone’s A1C is abnormal so we know right away?
Yep. I wasn’t diagnosed till I was 18. My son was diagnosed on his 10th bday
Hey Justin! Awesome video, as always. In the Uk, I get my senors, insulin and other medications for free because I am on insulin and have LADA. From the UK charity 'Diabetes Uk' You have to be on long and short-acting insulin to qualify for the free CGMs. However, the UK NHS will only give out Freestyle Libre 2 sensors and this doesn't apply to other CGM but it's still good and has made me understand the way how my insulin works. Oddly I spike really badly with whole milk, which is strange. As I said to you, I didn't that I had LADA two years after I was diagnosed and not only that I was misdiagnosed twice and lately I had been to an appointment for another reason and this other particular doctor said, "You have very robust numbers" and wanted me to be tested again through the GAD test, because this doctor wanted to officially know that I was either T1 or T2...OH DIABETES!....OH UK NHS HEALTH SYSTEM!....OH YOU KRAZAY YOU!!!
Diagnosed 1.5 at the age of 74 in 2020.
Hi there! I LOVE my Omnipod! So much freedom and my A1c is 6.6!!
Btw I was misdiagnosed at 21 ( I’m 58 now) as t2 diagnosed in my 30s as t1.
I was diagnosed at age 19, in 1987. I went from feeling normal to knowing I was going to die over the span of about 6 weeks. I went to a primary care doctor that I had never seen before. He had me pee in a cup and then told me to go to the ER immediately. He wrote a letter to give them when I got there. I didn't open it so I have no idea what it said. After spending a short time in the ER I was moved to a regular room and spent 8 days there. I have no idea what any of my numbers were at the time but years later my mother told me the ER doctor told her I should be dead. I was overweight at the time and I remember the endo in the hospital telling me it wasn't my fault and that there was nothing I could have done to prevent it.
25 years after I was diagnosed one of my sisters was also diagnosed with T1. She was in her mid-40s at the time. Fortunately she too was diagnosed correctly. She was in DKA as well and like me, went from feeling normal to nearly dying in a short span of time. Other than the two of us here is nobody else with Type 1 in our family.
My daughter was diagnosed at 17, I started having mild symptoms but i.waa just leaving on a 3 month trip to Europe. Went on the trip..it was hot, didn't think anything of it. Lost about 20lbs while we were gone . Came home to blood tests for a new doc and ahe called me and said your A1C is 14 and put me on basal insulin right away. I am now on short action insulin as well and awaiting the test in a few weeks to see if i show the antibodies. It is a year since diagnosis for me, i am 58 and live in Canada
I was diagnosed at 26 42 now with no family who has diabetes. They put me on metformin at first said I never see the doctor. Went back to emergency ended up on insulin.
Never been tested for Type 1 or type 2 but have been n insulin from day one. Never known anything else. Was in Afghanistan when I was diagnosed which made things complicated. lucky the American base had insulin and the nurse was able to get what I needed. She rocked up with a bunch of needles and a few vile of insulin and so it started.
You may not remember being diagnosed or tested but since insulin requires a diagnoses and prescription.
@@mral6809 Not really applicable in Afghanistan the nurse took the blood to be tested the doctor gave her the script so she could get it from the sickbay. I resupplied from the chemist in Kabul and never had a script. Scripts were not used at local chemist but not all of them stocked insulin as they needed a fridge and most did not have one
@@neilreynolds432 My appologies I meant no disrespect. I thought you were now getting your insulin through an American facility. I know that when my sister was visiting France, she was robbed of all her T1 equipment and insulin, they replaced everything without a prescription. Once her insurance kicked in she was able to replace everything she needed.
This was the oppisite when she was in Pennsylvania during 9/11/2001 attacks. The hospitals would not give her the insulin she needed without a prescription. Her company / coworkers helped her get what she needed in less than a day but was still fighting with the hospital and insurance.
I'm glad to hear you had a significantly better experience.
Me tapping my fingers ... waiting for LADA to have its own ICD10. Insurance companies have a very hard time understanding we are T1, but may still produce insulin - and may be fighting insulin resistance.
YUP!
Can't say I've heard of this I was classed as juvenile onset diabetes which I still class as having this being diagnosed at 19 years old
Back in the day it was only 9% of the population that were diagnosed after the age of 25 and the increase of diagnoses at an earlier age. Do not take what I am saying as fact since I am repeating infromation over a decade old. This channel just mention 20% and not the 9% I once was informed.
I was recently at some event and I saw someone who mentioned they were on Metformin and one other drug but I didn’t have enough time to say what I wanted to say which was something like “you look so fit, maybe you should get tested for Type 1 Diabetes” I so wish I had been able to speak up and say that.
i was 5 years old when i was dx
I think increased prevalence is just a part of the issue, and maybe not even the larger part of it. People have been ASSUMED to be type 2 (when they were actually LADA) for decades. Likewise, others have been assumed to be either type 2 or type 1 only to one day finding out they are actually MODY (another rabbit hole for you!)
i was dx type 1 51 years ago it still is very confusing
Oddly I was diagnosed 1 month ago and I still don’t know what my diagnosis is. My PCP told me my pancreas was failing and I had type 1 then I talked to the “diabetic specialist” at the pcp’s office and she didn’t communicate with the pcp and said I have type 2 but she said type one is possible. So idk. I just know I take 20u of basal at night 5u of Bolus before each meal and I take ozempic.
And with all that I still average a 133mg/Dl on a low carb diet.
Hi. Dxed 8 months ago. I have seen the numbers 10% of T2 are LADA instead. But do you have exact numbers of how many T1s are LADA worldwide? Thanks. :) A1c 5,6% and 100% TIR 90 days. ;)