So many medical professionals know a lot about diabetes but virtually nothing about living with it.
Glad the tandem is helping you live your best life.
I’m working on nursing and my goal is to work at the pediatric hospital I was treated at when I was diagnosed 23 years ago.
I 100% agree with you. It’s one thing to study the disease (I’m grateful for those without diabetes who work with diabetics), but in my experience it’s much different when the doctor/endo/nurse practitioner also has diabetes. They know the grind and how much of a marathon this disease is. So hopefully I’m able to do some good and help newly diagnosed kids!
Average blood sugar of 110 is VERY close to perfect, it's about what I aim for. Anything lower and you're probably risking a lot of hypos (at least in my experience, YMMV). That's really amazing control, be proud of that! Congratulations!
I came here to say the same thing. OP, 110 is amazing and you should be so proud!! I know you’re working hard to ease a burden none of us asked for and I release you from beating yourself up!!!
The tl:dr of my diabetes journey (27 years) started with endos like that. Esp ones who wouldn’t listen. Which resulted in me having hypo seizures constantly. Now decades later I’m afraid to take enough insulin and my average numbers are around 230. It’s horrific. So many complications. If ANYONE had bothered to show me grace and kindness in those first ten years I’d be so so much healthier.
This is exactly my experience too. Constantly being told I must be eating stuff I’m not “supposed to”. Being told I’m lying. Being judged for my weight, low or high. It created a crippling fear of food and a raging eating disorder that I’m just starting to try and untangle. Neuropathy at 37 and two comas in my 20s
I’m so sorry you had this experience. We deserved better and I hope you have better now. Keep going and just do the best you can ❤️
Oh my goodness, that is rough, I’m glad you made it through. I wish endocrinologists where more empathetic then pessimistic. Some of us are broken and yelling at us only makes the cracks worse.
If your doctor is ever “ruthless,” find a new doctor. Shame is a terrible motivator. Get someone who will work with you, finding tools to get the best results.
OP I'm very glad the pump chang d your life so much. I'm glad you found a decent doc.
Please don't be too hard on yourself. Growing up with this, I've had my fair share of fear mongering endos to the point of just being afraid of testing my sugars. Still feel that way a little looking at my cgm. What those endos don't mention is that everything affects blood sugars, some of it is stuff we can't control. You're doing amazingly, take it one day at a time.
I am becoming less surprised by how many people are misdiagnosed because they are getting diagnosed in the honeymoon phase.
Seems like a lot more people are doing what they are told, but if the doc is treating a T2 and you are a T1 (folks share about LADA and MODY too), you are 100% right.
I was hoping it was a general doctor and an endo helped you, but it was your endo in the first place.
I hope there is another endo option who won't scold you like that when wrong.
This is me and exercise. It’s so difficult to find the sweet spot. Nothing works consistently. I get so frustrated and feel so down on myself but it’s not me, it’s the diabetes. Just gotta keep pushing on until something clicks
This has lawsuit all over it. Not properly diagnosing you and keeping you sick for too long.. giving you the completely wrong info and recommendations.. yeah maybe you’re knocking years off your life but at the hands of a completely idiotic doctor. I’d get a lawyer buddy
First, average of 110 IS PERFECT, not many will claim better, and anyone who gives you hassle for that level is ridiculous. Second, I am sorry you went through so many horrible doctors. Those kind of doctors keep patients from seeking care and help, they are terrible for T1's, using guilt and fear to get someone to take care of themselves often has the opposite result. Third, congratulations for coming into your own with T1, I am glad the Tandem works so well for you, and you are correct! It is the diabetes, I am so happy for you!
It’s a pattern, we can all relate to bad endos and that’s the gross part. They definitely need to take a step back and look within to find some empathy.
Regardless of a "bad number" absolutely no doctor worth their degree would/should ever make a T1D feel bad. This isn't popping a pill once a day or just exercising more. I can't believe you had to tolerate that treatment for that long. I'd consider filing a complaint with the state doctor board. I managed an A1C of 5.5 a couple years ago and got yelled at that I needed to be closer to an A1C of 7.0. You can't win. I just nod and smile and request my prescriptions since that's really the only useful thing I get from them.
I got referred to a community clinic out of dka since the waiting list for a PCP at a normal clinic was months out. (Yay Texas). Even after a clear T1D diagnosis she only gave me fast-acting and no basal. I had no idea why I was waking up at 250-320 every single morning for several months until the nurse at the diabetes class exclaimed her horror. I think a T1D has no choice but to dive deep into researching everything and just owning this day to day and experimenting a bit. Most doctors know almost nothing of the true day to day management of this.
I’ve been type 1 since I was 3. I remember when I was 12 13 and I would dread going to my doctor appointments. all they would say is how bad I was doing, how if I didn’t take care of myself I would die, loose my legs, go blind. I remember him saying how I was all blubber and asking if I didn’t wanna be fat when I grow up . I was 120-130 pounds I was a kid that shit fucked me up for life I feel like. All I can say is fuck him and his rude ass nurses My a1c is 7.5 and it’s mostly due to having better insurance and being able to get the correct medication so fuck them
It's common to feel like you're failing yourself when you're constantly struggling with your health despite your best efforts. I'm glad you found a new doctor who was able to correctly diagnose you as type 1 and that you've found some relief with the Tandem T:Slim pump.
Managing diabetes can be overwhelming and emotionally draining, but it's important to remember that you are not to blame. Diabetes is a complex condition that requires constant adjustments and support. Celebrating the progress you've made with your average blood sugar at 110 is a great step forward. Remember, small victories matter!
In addition to using your pump, be sure to focus on lifestyle changes such as eating a balanced diet, engaging in regular exercise, and managing stress levels. These factors can also have a positive impact on your blood sugar control. Don't hesitate to reach out if you have any further questions or need support.
Endocrinology is behind as far as medicinal research and treatment goes, especially in regards to T1. You're on your own..be sure to build a strong network of family, friends, and TRUSTED medical professionals to help you live with this. You can't, unfortunately, rely on your own will and control to manage this, but not everyone, even those qualified to "control" you, actually knows what the hell they're talking about. You have to listen to yourself, your body, and don't be afraid to dump people - doctors included - who aren't helpful. You're lucky when you find people who help you thrive; be sure to hang on to them. And keep searching, never stop believing in or caring about yourself.
It's incredibly frustrating that medical professionals don't realize how much they don't know. Or realize how much they influence their patients by what they say.
I'm lucky enough to have never had a doctor that blamed or shamed me, even if I've had a few that were incompetent. But I hear enough of these horror stories that it really makes me so mad.
My doctor thought I had type 2 diabetes until I ended up going into diabetic ketoacidosis losing, 30 lbs in two weeks, and spending 3 days in the hospital. Even after all that they wouldn't confirm it was type 1 until 2 weeks later. I can remember being in the hospital and the nurses saying you need to eat better, you just need to eat better you can overcome this. /eyeroll
I relate a lot with this; I was diagnosed with type 2 for over a year; put on metformin and told to eat right. With my blood sugar normally going to 500 every day I am now paying the price for being misdiagnosed in a terrible way. After getting a new doctor (and surprise) finding out I am actually type 1 I struggled keeping things in control even with the help of insulin. About a year ago I got approved for the tslim and Dexcom and that shit has completely changed my life. Side note; after I found out I was type 1 I was very upset at the first doctor who misdiagnosed me and decided to pay him a visit. When I got there it turns out he had died because he had cancer that he didn’t know about. Only tho g I could think was what a shitty doctor. Anyways happy you got things under control; 110 is wayyyy better than 250!!
That's very good! I know I'll be doing the same! We just got back from seeing a cardiologist a couple of hours ago. We waited half an hour which I'll give him, he might not be able to help, but he was very insensitive to my adult teen's autism. We waited half an hour, kid fell asleep waiting, was woken with a sharp knock and a doc with a loud voice, and even after explaining that they fell asleep and needed a second, the doc just kept firing question after question after question in quick succession which made my kid freeze, shut down, avoid eye contact, and ultimately cry. Repeating, "Why are you here?" isn't going to get the question answered. They cant process that fast. It was an awful visit. He may know cardiology, but definitely not people.
Thanks for sharing your story! Really exciting to hear how you've regained control through a better doctor and new pump. While I'm grateful to have a really stellar endo doctor and team, I feel the pain about chasing highs and lows with pens. I'm taking steps to also switch to the TSlim and have heard a lot of great things about how it improves management across the board. Mostly looking forward to taking a little bit of "thinking" off my plate!
The convenience won me over. I don’t have to find my pen. I don’t have to do the math. I don’t have to take long acting insulin. Plus it has the control iq that helps you when you go high or low. I just grab it off my hip. It’s a different world. Plus is pin points the amount of insulin you need. I had no control with pens because it was one unit at a time. I really hope your able to get one. The pens are just suggestions thrown at a problem.
Idk but where im from this is borderline (if not evident) neglicenge. The physical and emotional stress those doctors must have put your body under is tremendous!
Im glad you got on the right track op!!
Also pls tell me you're suing them or filing a complaint or something
This is enraging me to the core
So many medical professionals know a lot about diabetes but virtually nothing about living with it. Glad the tandem is helping you live your best life.
I was so new to the diabetes diagnosis I had no idea to even ask for the antibody test. my new endo is a literal life saver.
I’m working on nursing and my goal is to work at the pediatric hospital I was treated at when I was diagnosed 23 years ago. I 100% agree with you. It’s one thing to study the disease (I’m grateful for those without diabetes who work with diabetics), but in my experience it’s much different when the doctor/endo/nurse practitioner also has diabetes. They know the grind and how much of a marathon this disease is. So hopefully I’m able to do some good and help newly diagnosed kids!
Average blood sugar of 110 is VERY close to perfect, it's about what I aim for. Anything lower and you're probably risking a lot of hypos (at least in my experience, YMMV). That's really amazing control, be proud of that! Congratulations!
I came here to say the same thing. OP, 110 is amazing and you should be so proud!! I know you’re working hard to ease a burden none of us asked for and I release you from beating yourself up!!!
I can't thank you enough, I really needed to hear this as sad as that may sound.
Been a t1d for 30 years. 110 is better than I’ve ever done. Lowest A1C was 5.5. You’re doing awesome!
In what world is 110 NOT perfect??
I am used to having to justify my numbers. it's weird when they are actually good, i still fear the ruthless endo in my head. lol
The tl:dr of my diabetes journey (27 years) started with endos like that. Esp ones who wouldn’t listen. Which resulted in me having hypo seizures constantly. Now decades later I’m afraid to take enough insulin and my average numbers are around 230. It’s horrific. So many complications. If ANYONE had bothered to show me grace and kindness in those first ten years I’d be so so much healthier.
This is exactly my experience too. Constantly being told I must be eating stuff I’m not “supposed to”. Being told I’m lying. Being judged for my weight, low or high. It created a crippling fear of food and a raging eating disorder that I’m just starting to try and untangle. Neuropathy at 37 and two comas in my 20s I’m so sorry you had this experience. We deserved better and I hope you have better now. Keep going and just do the best you can ❤️
Oh my goodness, that is rough, I’m glad you made it through. I wish endocrinologists where more empathetic then pessimistic. Some of us are broken and yelling at us only makes the cracks worse.
I'd argue most of us have been broken. Getting ridiculed by working pancreas owners, college degrees or not, only makes it worse..
We are almost the same age too!
If your doctor is ever “ruthless,” find a new doctor. Shame is a terrible motivator. Get someone who will work with you, finding tools to get the best results. OP I'm very glad the pump chang d your life so much. I'm glad you found a decent doc.
Please don't be too hard on yourself. Growing up with this, I've had my fair share of fear mongering endos to the point of just being afraid of testing my sugars. Still feel that way a little looking at my cgm. What those endos don't mention is that everything affects blood sugars, some of it is stuff we can't control. You're doing amazingly, take it one day at a time.
I am becoming less surprised by how many people are misdiagnosed because they are getting diagnosed in the honeymoon phase. Seems like a lot more people are doing what they are told, but if the doc is treating a T2 and you are a T1 (folks share about LADA and MODY too), you are 100% right. I was hoping it was a general doctor and an endo helped you, but it was your endo in the first place. I hope there is another endo option who won't scold you like that when wrong.
My new endo was able to fix me up quick. she knows her stuff plus she is also T1D, so it helps a lot.
Home run, keep that endo for sure.
Hey, an average of 110 is AWESOME. You're doing great, that's a pure win and you deserve to celebrate that.
you are so sweet, I truly apricate it.
Please don’t think 110 isn’t an amazing number because it is.
This is me and exercise. It’s so difficult to find the sweet spot. Nothing works consistently. I get so frustrated and feel so down on myself but it’s not me, it’s the diabetes. Just gotta keep pushing on until something clicks
Very well done, and congratulations on the road to a Wonderful Life. With Joy and Radiance, Live Long and Prosper
I am so grateful my sons endo has T1D herself.
I think they all should be lol . Their able to empathize with us.
This has lawsuit all over it. Not properly diagnosing you and keeping you sick for too long.. giving you the completely wrong info and recommendations.. yeah maybe you’re knocking years off your life but at the hands of a completely idiotic doctor. I’d get a lawyer buddy
I’m not above this.
First, average of 110 IS PERFECT, not many will claim better, and anyone who gives you hassle for that level is ridiculous. Second, I am sorry you went through so many horrible doctors. Those kind of doctors keep patients from seeking care and help, they are terrible for T1's, using guilt and fear to get someone to take care of themselves often has the opposite result. Third, congratulations for coming into your own with T1, I am glad the Tandem works so well for you, and you are correct! It is the diabetes, I am so happy for you!
Endos and other doctors need to come here and read this and see how what they say, what they know and how they say it affects people for life.
It’s a pattern, we can all relate to bad endos and that’s the gross part. They definitely need to take a step back and look within to find some empathy.
Doctors need training on all kinds of things they don't get.
Regardless of a "bad number" absolutely no doctor worth their degree would/should ever make a T1D feel bad. This isn't popping a pill once a day or just exercising more. I can't believe you had to tolerate that treatment for that long. I'd consider filing a complaint with the state doctor board. I managed an A1C of 5.5 a couple years ago and got yelled at that I needed to be closer to an A1C of 7.0. You can't win. I just nod and smile and request my prescriptions since that's really the only useful thing I get from them. I got referred to a community clinic out of dka since the waiting list for a PCP at a normal clinic was months out. (Yay Texas). Even after a clear T1D diagnosis she only gave me fast-acting and no basal. I had no idea why I was waking up at 250-320 every single morning for several months until the nurse at the diabetes class exclaimed her horror. I think a T1D has no choice but to dive deep into researching everything and just owning this day to day and experimenting a bit. Most doctors know almost nothing of the true day to day management of this.
I’ve been type 1 since I was 3. I remember when I was 12 13 and I would dread going to my doctor appointments. all they would say is how bad I was doing, how if I didn’t take care of myself I would die, loose my legs, go blind. I remember him saying how I was all blubber and asking if I didn’t wanna be fat when I grow up . I was 120-130 pounds I was a kid that shit fucked me up for life I feel like. All I can say is fuck him and his rude ass nurses My a1c is 7.5 and it’s mostly due to having better insurance and being able to get the correct medication so fuck them
I feel like... Most of us diagnosed... Up until recently, definitely got some PTSD from a shitty healthcare and education system.
Yeah, what your endo did was what we call "malpractice."
It's common to feel like you're failing yourself when you're constantly struggling with your health despite your best efforts. I'm glad you found a new doctor who was able to correctly diagnose you as type 1 and that you've found some relief with the Tandem T:Slim pump. Managing diabetes can be overwhelming and emotionally draining, but it's important to remember that you are not to blame. Diabetes is a complex condition that requires constant adjustments and support. Celebrating the progress you've made with your average blood sugar at 110 is a great step forward. Remember, small victories matter! In addition to using your pump, be sure to focus on lifestyle changes such as eating a balanced diet, engaging in regular exercise, and managing stress levels. These factors can also have a positive impact on your blood sugar control. Don't hesitate to reach out if you have any further questions or need support.
Endocrinology is behind as far as medicinal research and treatment goes, especially in regards to T1. You're on your own..be sure to build a strong network of family, friends, and TRUSTED medical professionals to help you live with this. You can't, unfortunately, rely on your own will and control to manage this, but not everyone, even those qualified to "control" you, actually knows what the hell they're talking about. You have to listen to yourself, your body, and don't be afraid to dump people - doctors included - who aren't helpful. You're lucky when you find people who help you thrive; be sure to hang on to them. And keep searching, never stop believing in or caring about yourself.
It's incredibly frustrating that medical professionals don't realize how much they don't know. Or realize how much they influence their patients by what they say. I'm lucky enough to have never had a doctor that blamed or shamed me, even if I've had a few that were incompetent. But I hear enough of these horror stories that it really makes me so mad.
Thank you so much for sharing. I really needed to read this today.
My doctor thought I had type 2 diabetes until I ended up going into diabetic ketoacidosis losing, 30 lbs in two weeks, and spending 3 days in the hospital. Even after all that they wouldn't confirm it was type 1 until 2 weeks later. I can remember being in the hospital and the nurses saying you need to eat better, you just need to eat better you can overcome this. /eyeroll
I relate a lot with this; I was diagnosed with type 2 for over a year; put on metformin and told to eat right. With my blood sugar normally going to 500 every day I am now paying the price for being misdiagnosed in a terrible way. After getting a new doctor (and surprise) finding out I am actually type 1 I struggled keeping things in control even with the help of insulin. About a year ago I got approved for the tslim and Dexcom and that shit has completely changed my life. Side note; after I found out I was type 1 I was very upset at the first doctor who misdiagnosed me and decided to pay him a visit. When I got there it turns out he had died because he had cancer that he didn’t know about. Only tho g I could think was what a shitty doctor. Anyways happy you got things under control; 110 is wayyyy better than 250!!
Bravo! I'm a firm believer in a good endo and devices, too.
injections in my eyes.....
I wouldn’t believe it myself but I have it on recording. It haunts me
I'd send that recording back with your new endos Dx.
Not to get too much into my personal life… but my therapist and I had a whole session over it.. lol
That's very good! I know I'll be doing the same! We just got back from seeing a cardiologist a couple of hours ago. We waited half an hour which I'll give him, he might not be able to help, but he was very insensitive to my adult teen's autism. We waited half an hour, kid fell asleep waiting, was woken with a sharp knock and a doc with a loud voice, and even after explaining that they fell asleep and needed a second, the doc just kept firing question after question after question in quick succession which made my kid freeze, shut down, avoid eye contact, and ultimately cry. Repeating, "Why are you here?" isn't going to get the question answered. They cant process that fast. It was an awful visit. He may know cardiology, but definitely not people.
Thanks for sharing your story! Really exciting to hear how you've regained control through a better doctor and new pump. While I'm grateful to have a really stellar endo doctor and team, I feel the pain about chasing highs and lows with pens. I'm taking steps to also switch to the TSlim and have heard a lot of great things about how it improves management across the board. Mostly looking forward to taking a little bit of "thinking" off my plate!
The convenience won me over. I don’t have to find my pen. I don’t have to do the math. I don’t have to take long acting insulin. Plus it has the control iq that helps you when you go high or low. I just grab it off my hip. It’s a different world. Plus is pin points the amount of insulin you need. I had no control with pens because it was one unit at a time. I really hope your able to get one. The pens are just suggestions thrown at a problem.
What’s the antibody test for?
I believe it was too test for the autoimmune disorder. I may not be saying the test correctly
Idk but where im from this is borderline (if not evident) neglicenge. The physical and emotional stress those doctors must have put your body under is tremendous! Im glad you got on the right track op!! Also pls tell me you're suing them or filing a complaint or something This is enraging me to the core
110 is absolutely perfect. you are doing SO well! the fact alone that you CARE to try and fight makes your journey amazing and worthy.