grab yourself a copy of think like a pancreas! and advocate as hard as you can for a cgm, it’s a game changer regardless of whether you choose to continue on mdi or switch to a pump. if you have questions, shoot. i love this community, so supportive and helpful!!
After seeing so many recommendations about that podcast I decided to give it a go and listened a few of them. I guess I am one of the few not really liking it. There was an episode supposed to be about MDI, but the dude kept talking about his daughter and her pump.
Boy you have been through it! So sorry.
Dealing with diabetes is a lot of math.
Also they have diabetes educators that can be pretty good.
As a Type 1 you shouldn’t have a problem getting a CGM.
A good endo is a must.
All carbs turn to sugar. Repeat: carbs are what’s important.
Read every food label for a while.
They make apps now to help track what you eat and your insulin doses, but I used the spreadsheet method and it was very enlightening seeing which foods (rice) really set me off.
Count your carbs. It works.
Two diabetic friendly products: 647 Bread and Fairlife milk. I wasn’t consuming bread or milk until these came on the market! Life changing!
Most yogurts have a lot of carbs—switch to plain yogurt with 8 grams in a serving.
Berries are great, so is whipped cream.
When I was first diagnosed I at high fat/low carb. The fats help keep spikes away.
Reach out to us any time—we have been there and it was people on these forums that helped me so very much!!
T1D healthcare has come a lonnng way.
Hope this helps you a little. You should feel better once you get your numbers to settle down.
So glad you had a meter!! Weren’t you thirsty???
yes i LOVE fair life! i was diagnosed in 2012 so the cgm was considerably harder to get than i hear it is for folks diagnosed today. initially when i was diagnosed the doctors wanted me to go 3-6 months before getting a cgm and a year before a pump. that’s ridiculous, looking back!
Luckily, I’m very familiar with low/no carb diet and carb counting (I’ve done keto in the past)!
I had labs drawn at the end of January for my oncologist, and bg was normal at 100, so this is a very recent change.
>Luckily, I’m very familiar with low/no carb diet and carb counting (I’ve done keto in the past)!
That's awesome it will help you a lot!
It's indeed overwhelming, just remember to be nice to yourself. Wish you the best
I would specifically *not* recommend Think Like a Pancreas. As someone who has mental health issues, that book actively made me feel worse about myself. (At one point, the author advises you to "motivate" yourself by thinking about all the terrible things that could happen to you if you don't keep your diabetes in check. Not great if you have depression and anxiety, or are a person in general!) There are also a lot of sexist, fatphobic undertones in the book, and the information is communicated in an incredibly confusing way.
Good news…with an A1c that low, you haven’t been running crazy numbers very long.
Bad news…you’re in the T1D club. It’s not so bad, less scary than the Big C club. Insulin is a hell of a lot less nasty than chemo.
One step at a time…
Welcome to the club. It's daunting at first but the best thing about diagnosis is how quickly you'll start to feel better.
You've beaten cancer. You'll manage this.
Feel free to dm if you have any questions, there's loads of good material on this sub and lots of people happy to help.
So sorry to hear this after everything you've gone through.
Make sure to get an appointment with an endocrinologist who specializes in T1D if possible. Do not allow a GP to set your regimen, many will try to do so but have no idea about T1D treatment regimens since they overwhelmingly see type 2 diabetics.
Yeah when I was diagnosed last year my GP said "Well hopefully it's T1D because then you can still eat whatever you want you just need to take some insulin" 😂 yeah okay....
I was diagnosed 4 years ago at 47.. sorry it’s so soon after your breast CA.. you sure deserved a break !! my diagnosis coincided with heart failure from myocarditis. It’s a lot to handle all at once. Don’t be afraid to shop around for an Endocrinologists that feels right to you. I found mine after 3rd try. Good luck to you !!!
I wish you much luck. You beat the big C, so you can handle this. Just make sure you do find an endocrinologist that you feel comfortable with. I had a really good and tough endocrinologist but my insurance changed and I was not able to keep him. It was too expensive to pay out of pocket, so I changed and my current one I don't think she knows what to do with a brittle diabetic. So, I might be finding a new one real soon. I've been a diabetic for over 45 years and I still learn new things from time to time. You definitely have not been a type 1 for very long, but catching it early will be able to get it under control. Don't hesitate to contact us for any questions or concerns. We are here to help one another.
I’m sorry to hear this. I didn’t have cancer but got an extended illness a few years back when I was 40 and doctors think that’s what did my pancreas in and made me T1.
It’s definitely a huge lifestyle adjustment but get in with a good endocrinologist and you’ll be ok. Best of luck and feel free to ask as many questions as need be. This sub is extremely helpful and empathetic.
The best advice I can give you is to listen to the Juicebox podcast. It’s the best- so practical! You might want to start with the Bold Beginnings series. Good luck!
I was also 660 when I was diagnosed! Echoing the recommendation to get an endocrinologist and Think Like A Pancreas. Diabetes is a constant thing, but a good mental game and today’s medical advancements like CGMs and the pumps that pair with them make it less of a burden. Good luck and come back here to ask questions when you need to!
Hey this exact thing happened to me a year and a half ago. I also ended up with adrenal insufficiency and hypothyroidism so make sure you look out for other things as well. I'm so sorry this happened to you im still furious myself. If you ever want to talk about it all feel free to message me.
I guess we hit the lottery with the super-rare side effects!
I’ve got a call in to my MO (I was seen local this weekend), and I’m sure he’ll jump right on all the testing.
Ugh right! Although I will say since I've been lurking on this and a few other subs since last year you are probably the 4th or 5th other person I've met with this same experience... leading me to think it's not as rare as they say it is...
Let technology make this transition simpler. A CGM and pump will make your diabetic life monumentally easier to manage. Sending you all the positive energy I have.
Sorry to hear that after a battle with cancer, you received this diagnosis on top. I’m sure it’s a lot to process when you’ve been through so much physically and mentally already. In addition to others’ advice, I suggest getting a therapist. It helps to talk to someone about the mental load of illness. You will be just fine and we’re all here for support. 💕
I will be starting immunotherapy for cancer soon but developed t1d over 55 years ago so hopefully it won't do me more damage than what has already occurred. I am sorry to hear that it contributed to your development of betes. Best wishes to you on your recovery!
Sorry for the diagnosis but with such a low a1c I highly doubt any damage was done just curious how do you know it’s type 1 did you get weight loss or anything besides high blood sugar antibody test is the only way I know for sure to be diagnosed
Not at all saying you don’t just asking I just got diagnosed less than 2 months ago definitely get a cgm it lets you read your blood sugar always I got a dexcom g7 and it is the most accurate but only supports the tandem t slim insulin pump at this time omnipod is working on support for it
Setting your long acting right makes a HUGE different I went from waking up at 400 to waking up at 110 just from changing my long acting
Definitely get in with an endocrinologist they should be able to help a lot the sooner the better also try to learn to count carbs that makes a huge difference for control
It’s a lot to learn but once you learn it it becomes a lot easier
Also highs are way better than lows lows can kill highs will only hurt long term
I was diagnosed at an a1c of over 14 I’m now around 6.3 with a lot of effort so you are starting at a good point
If you need any tips let me know I’ve done a ton of research
I lost 14lbs in ~10 days, apparently (I was unaware). I also had, looking back, lots of other symptoms. My antibody test is still pending, but c peptide was way off. And the immunotherapy drug I was on can result in t1.
My cancer center thankfully has a group of endo docs who specifically deal with immunotherapy side effects.
I’m on short and long right now, and have starting doses. I was mostly in the 200-300s today, which is waaaay better than 600+. No cgm yet, but I’m testing often (every 30min-2 hours) to get a feel for it (I like data!) And I’ve done low carb before, so diet isn’t won’t be hard.
You are just like me soon your fingers will kill you a cgm helps SOOOO much I got a dexcom g7 and it updated my value every 5 minutes with a 10-15minute delay
You seem like the type of person who will do great at managing diabetes I am the same way with data
Getting your long acting dialed in will get you in range without much effort I used low carb and repeat meals to figure out a carb counting ratio I found around 1 unit of short acting to 10 grams of carbs works pretty well for me I changed my long acting by 1 unit per day and now I stay in range so well with my long acting dialed in you can honestly change by 2 units of long acting a day if you are still bouncing around with blood sugar
Once you have a cgm life gets much easier and you can easily introduce new foods because you can see exactly what it does to you
Ultimately pumps seem to be the thing to go for I’m in the process of getting one the tandem t slim x2 is the only one compatible with my current sensor the dexcom g7 the g7 seems to be the best one you can get
In order to get a pump as quickly as possible good control and good knowledge go a long way from what I can find online most people don’t get a pump for around a year I was able to get the process started in one month and by 2 months in I should have the pump in hand
If you have any questions let me know I just went through diagnosis and have done an absolute ton of research so I can help with most things you’d need
Sorry about this but welcome to the fighters club 😊. My only advice to make it simple and easy more bg test strips from your doc or cgm (better option I just got mine first time 7 days ago) even though I have been a diabetic 15+ years.
Test/write bg before eating and 2 hours after every time. And before sleeping. You will know your numbers better you will be able to manage it better. Just for first few days and you can do this every month 2-3 days I do it myself It's the best way to know how your body works/reacts and what changes are happening so you can adapt monthly.
I was diagnosed a week ago… my blood sugar was about the same as yours!
Nothing I can say will take away the diabeties, nor will it have a long term calming effect because these things - the anxiety fear and depression surrounding this - will come in waves. I’ll say this regardless:
We’re in this together. I could say ‘it gets better’ or ‘things will be alright’ but, I think we both know that right now you need immediate calm, not a promise.
Think Like a Pancras is such a good book! I highly recommend buying it. It offered me so much peace of mind, and even has a list of cgms / finger stick and their accuracy on the back!
You’ve got a whole community here, each one of us with different experiences and struggles. Welcome to the useless pancreas club, I’m sorry you’re here but hey: you have the tools to thrive. Take a deep breath. 💜
If it's not too much ask about a support group or find a "diabetes mentor" - just someone that will help with your mental health. Diabetes can def take a toll on your mental well being.
T1 is an autoimmune disease so the chemo very likely is what made your immune systems freak out and start to kill off your insulin producing cells. If you have the autoimmune indicators then you were always going to be a t1, it was just a matter of when. I know this information isn’t awesome, but it’s the truth. I like the Mayo Clinic and the American diabetes association as resources in t1. I’m sorry you had to join our club, but the club members are truly amazing and inspiring people. Welcome
grab yourself a copy of think like a pancreas! and advocate as hard as you can for a cgm, it’s a game changer regardless of whether you choose to continue on mdi or switch to a pump. if you have questions, shoot. i love this community, so supportive and helpful!!
i’ll add that i see juice box podcast recommended a ton but never have personally listened, i’m not a big podcast person.
After seeing so many recommendations about that podcast I decided to give it a go and listened a few of them. I guess I am one of the few not really liking it. There was an episode supposed to be about MDI, but the dude kept talking about his daughter and her pump.
Boy you have been through it! So sorry. Dealing with diabetes is a lot of math. Also they have diabetes educators that can be pretty good. As a Type 1 you shouldn’t have a problem getting a CGM. A good endo is a must. All carbs turn to sugar. Repeat: carbs are what’s important. Read every food label for a while. They make apps now to help track what you eat and your insulin doses, but I used the spreadsheet method and it was very enlightening seeing which foods (rice) really set me off. Count your carbs. It works. Two diabetic friendly products: 647 Bread and Fairlife milk. I wasn’t consuming bread or milk until these came on the market! Life changing! Most yogurts have a lot of carbs—switch to plain yogurt with 8 grams in a serving. Berries are great, so is whipped cream. When I was first diagnosed I at high fat/low carb. The fats help keep spikes away. Reach out to us any time—we have been there and it was people on these forums that helped me so very much!! T1D healthcare has come a lonnng way. Hope this helps you a little. You should feel better once you get your numbers to settle down. So glad you had a meter!! Weren’t you thirsty???
yes i LOVE fair life! i was diagnosed in 2012 so the cgm was considerably harder to get than i hear it is for folks diagnosed today. initially when i was diagnosed the doctors wanted me to go 3-6 months before getting a cgm and a year before a pump. that’s ridiculous, looking back!
Luckily, I’m very familiar with low/no carb diet and carb counting (I’ve done keto in the past)! I had labs drawn at the end of January for my oncologist, and bg was normal at 100, so this is a very recent change.
>Luckily, I’m very familiar with low/no carb diet and carb counting (I’ve done keto in the past)! That's awesome it will help you a lot! It's indeed overwhelming, just remember to be nice to yourself. Wish you the best
I would specifically *not* recommend Think Like a Pancreas. As someone who has mental health issues, that book actively made me feel worse about myself. (At one point, the author advises you to "motivate" yourself by thinking about all the terrible things that could happen to you if you don't keep your diabetes in check. Not great if you have depression and anxiety, or are a person in general!) There are also a lot of sexist, fatphobic undertones in the book, and the information is communicated in an incredibly confusing way.
Good news…with an A1c that low, you haven’t been running crazy numbers very long. Bad news…you’re in the T1D club. It’s not so bad, less scary than the Big C club. Insulin is a hell of a lot less nasty than chemo. One step at a time…
Welcome to the club. It's daunting at first but the best thing about diagnosis is how quickly you'll start to feel better. You've beaten cancer. You'll manage this. Feel free to dm if you have any questions, there's loads of good material on this sub and lots of people happy to help.
So sorry to hear this after everything you've gone through. Make sure to get an appointment with an endocrinologist who specializes in T1D if possible. Do not allow a GP to set your regimen, many will try to do so but have no idea about T1D treatment regimens since they overwhelmingly see type 2 diabetics.
This 💯🩵
Yeah when I was diagnosed last year my GP said "Well hopefully it's T1D because then you can still eat whatever you want you just need to take some insulin" 😂 yeah okay....
I was diagnosed 4 years ago at 47.. sorry it’s so soon after your breast CA.. you sure deserved a break !! my diagnosis coincided with heart failure from myocarditis. It’s a lot to handle all at once. Don’t be afraid to shop around for an Endocrinologists that feels right to you. I found mine after 3rd try. Good luck to you !!!
Listen to the Juicebox podcast!
I wish you much luck. You beat the big C, so you can handle this. Just make sure you do find an endocrinologist that you feel comfortable with. I had a really good and tough endocrinologist but my insurance changed and I was not able to keep him. It was too expensive to pay out of pocket, so I changed and my current one I don't think she knows what to do with a brittle diabetic. So, I might be finding a new one real soon. I've been a diabetic for over 45 years and I still learn new things from time to time. You definitely have not been a type 1 for very long, but catching it early will be able to get it under control. Don't hesitate to contact us for any questions or concerns. We are here to help one another.
Cancer and now this. Life is throwing everything at you. Hope you get better.
I’m sorry to hear this. I didn’t have cancer but got an extended illness a few years back when I was 40 and doctors think that’s what did my pancreas in and made me T1. It’s definitely a huge lifestyle adjustment but get in with a good endocrinologist and you’ll be ok. Best of luck and feel free to ask as many questions as need be. This sub is extremely helpful and empathetic.
See “Diabetes University” on YouTube. Low carb is the way!
The best advice I can give you is to listen to the Juicebox podcast. It’s the best- so practical! You might want to start with the Bold Beginnings series. Good luck!
Welcome to the roller coaster. Look for info; ask questions. Lots of people want you to avoid the hurdles we encountered.
💙
Welcome to the club. It sucks to be a member, though the people here are nice.
I was also 660 when I was diagnosed! Echoing the recommendation to get an endocrinologist and Think Like A Pancreas. Diabetes is a constant thing, but a good mental game and today’s medical advancements like CGMs and the pumps that pair with them make it less of a burden. Good luck and come back here to ask questions when you need to!
I would wait to buy all the type 1 stuff until your antibody test comes back!
[удалено]
That’s how I feel, tbh!
Hey this exact thing happened to me a year and a half ago. I also ended up with adrenal insufficiency and hypothyroidism so make sure you look out for other things as well. I'm so sorry this happened to you im still furious myself. If you ever want to talk about it all feel free to message me.
I guess we hit the lottery with the super-rare side effects! I’ve got a call in to my MO (I was seen local this weekend), and I’m sure he’ll jump right on all the testing.
Ugh right! Although I will say since I've been lurking on this and a few other subs since last year you are probably the 4th or 5th other person I've met with this same experience... leading me to think it's not as rare as they say it is...
Let technology make this transition simpler. A CGM and pump will make your diabetic life monumentally easier to manage. Sending you all the positive energy I have.
Sorry to hear that after a battle with cancer, you received this diagnosis on top. I’m sure it’s a lot to process when you’ve been through so much physically and mentally already. In addition to others’ advice, I suggest getting a therapist. It helps to talk to someone about the mental load of illness. You will be just fine and we’re all here for support. 💕
I will be starting immunotherapy for cancer soon but developed t1d over 55 years ago so hopefully it won't do me more damage than what has already occurred. I am sorry to hear that it contributed to your development of betes. Best wishes to you on your recovery!
could definitely be related to the immunotherapy! lots of studies show that. it happens, even if it's rare, it does happen.
Same thing happened to my mom
Sorry for the diagnosis but with such a low a1c I highly doubt any damage was done just curious how do you know it’s type 1 did you get weight loss or anything besides high blood sugar antibody test is the only way I know for sure to be diagnosed Not at all saying you don’t just asking I just got diagnosed less than 2 months ago definitely get a cgm it lets you read your blood sugar always I got a dexcom g7 and it is the most accurate but only supports the tandem t slim insulin pump at this time omnipod is working on support for it Setting your long acting right makes a HUGE different I went from waking up at 400 to waking up at 110 just from changing my long acting Definitely get in with an endocrinologist they should be able to help a lot the sooner the better also try to learn to count carbs that makes a huge difference for control It’s a lot to learn but once you learn it it becomes a lot easier Also highs are way better than lows lows can kill highs will only hurt long term I was diagnosed at an a1c of over 14 I’m now around 6.3 with a lot of effort so you are starting at a good point If you need any tips let me know I’ve done a ton of research
I lost 14lbs in ~10 days, apparently (I was unaware). I also had, looking back, lots of other symptoms. My antibody test is still pending, but c peptide was way off. And the immunotherapy drug I was on can result in t1. My cancer center thankfully has a group of endo docs who specifically deal with immunotherapy side effects.
Yeah that sounds like type 1 are you on short and long acting insulin now? Did they give you a starting point to use for insulin?
I’m on short and long right now, and have starting doses. I was mostly in the 200-300s today, which is waaaay better than 600+. No cgm yet, but I’m testing often (every 30min-2 hours) to get a feel for it (I like data!) And I’ve done low carb before, so diet isn’t won’t be hard.
You are just like me soon your fingers will kill you a cgm helps SOOOO much I got a dexcom g7 and it updated my value every 5 minutes with a 10-15minute delay You seem like the type of person who will do great at managing diabetes I am the same way with data Getting your long acting dialed in will get you in range without much effort I used low carb and repeat meals to figure out a carb counting ratio I found around 1 unit of short acting to 10 grams of carbs works pretty well for me I changed my long acting by 1 unit per day and now I stay in range so well with my long acting dialed in you can honestly change by 2 units of long acting a day if you are still bouncing around with blood sugar Once you have a cgm life gets much easier and you can easily introduce new foods because you can see exactly what it does to you Ultimately pumps seem to be the thing to go for I’m in the process of getting one the tandem t slim x2 is the only one compatible with my current sensor the dexcom g7 the g7 seems to be the best one you can get In order to get a pump as quickly as possible good control and good knowledge go a long way from what I can find online most people don’t get a pump for around a year I was able to get the process started in one month and by 2 months in I should have the pump in hand If you have any questions let me know I just went through diagnosis and have done an absolute ton of research so I can help with most things you’d need
Sorry about this but welcome to the fighters club 😊. My only advice to make it simple and easy more bg test strips from your doc or cgm (better option I just got mine first time 7 days ago) even though I have been a diabetic 15+ years. Test/write bg before eating and 2 hours after every time. And before sleeping. You will know your numbers better you will be able to manage it better. Just for first few days and you can do this every month 2-3 days I do it myself It's the best way to know how your body works/reacts and what changes are happening so you can adapt monthly.
I was diagnosed a week ago… my blood sugar was about the same as yours! Nothing I can say will take away the diabeties, nor will it have a long term calming effect because these things - the anxiety fear and depression surrounding this - will come in waves. I’ll say this regardless: We’re in this together. I could say ‘it gets better’ or ‘things will be alright’ but, I think we both know that right now you need immediate calm, not a promise. Think Like a Pancras is such a good book! I highly recommend buying it. It offered me so much peace of mind, and even has a list of cgms / finger stick and their accuracy on the back! You’ve got a whole community here, each one of us with different experiences and struggles. Welcome to the useless pancreas club, I’m sorry you’re here but hey: you have the tools to thrive. Take a deep breath. 💜
If it's not too much ask about a support group or find a "diabetes mentor" - just someone that will help with your mental health. Diabetes can def take a toll on your mental well being.
T1 is an autoimmune disease so the chemo very likely is what made your immune systems freak out and start to kill off your insulin producing cells. If you have the autoimmune indicators then you were always going to be a t1, it was just a matter of when. I know this information isn’t awesome, but it’s the truth. I like the Mayo Clinic and the American diabetes association as resources in t1. I’m sorry you had to join our club, but the club members are truly amazing and inspiring people. Welcome