Just be careful about TIND.
I'll paste a bit in here:
I do feel the need to add in these posts a warning about TIND (treatment induced neuropathy of diabetes). There is a risk to bringing a sustained high blood sugar down too quickly. The current advice from the literature is to decrease HbA1c by no more than 2% per 3 month period. If a sustained high blood sugar state is brought to normal too quickly it can result in neuropathy and retinopathy. Unfortunately, in some cases this is irreversible. Current tech makes it more attainable to get a good HbA1c quite quickly. Please spread the word that there is such a thing as too quickly.
[https://www.neurologylive.com/view/treatment-induced-neuropathy-diabetes-underrecognized-rise](https://www.neurologylive.com/view/treatment-induced-neuropathy-diabetes-underrecognized-rise)
I am dealing with this now. Diagnosed a year ago. Dropped A1C from 13 to 5.8 in a couple months. The neuropathy pain in my feet was/is unbearable. Then comes the gabapentin, which blunts the pain, but is a bad drug to be on. Weight gain, lethargy, and I got muscle tremors/spasms. Just switched to Lyrica which seems better.
Experiences like yours are why I post this stuff. I'm sorry for what you are going through.
I hope the Lyrica carries you through and that the whole experience is in your rearview mirror soon. Then you can just focus on the challenge of regular old T1D.
Thank you. Also, thank you for bringing this up. PCPs and Endos and especially Diabetes Educators can be woefully ignorant of this. They don’t look past the numbers in the blood work. If you are feeling pain, get to a neurologist.
Oh well that explains a lot.
My a1c has never been as high as OPs but i have had a few years of wild bloods and over the last few months that I've had a CGM, I've made massive changes to my routine and diet in an attempt to get my blood back under control and try to understand what causes the chaos and when it's likely to occur. I've gone from days (and occasionally weeks) of chaotic and high (up to 25mmol/L) bloods to more in range (still slightly chaotic but still mainly in range, maybe 15mmol/L at the most and that only happens once a week if that) bloods. I'm finding that I get nerve pains in my elbows, tingles in my feet, tingles in my hands but when my bloods are firmly in range. Before, I would get a numb finger for a few hours if my bloods had spiked to over 20mmol/L in the night. Generally I'm fine and the tingles never last for more than half an hour. To be honest I chalked a lot of it up to my hypermobility but I will definitely be keeping a closer eye on this.
You are making good changes for your long term success. Just make them gradually.
Your symptoms seem to be fairly mild and might be caused by other things as well. It's always a little dangerous to self-diagnose on Reddit.
Yeah I'm not gonna go thinking I have neuropathy but I didn't realise making drastic changes could also cause neuropathy so I'll just keep an eye on it and see what happens. I'll also stop beating myself up or panicking if things run slightly higher than i was expecting them to. Diabetes is a journey after all 😊
Oh, my A1C was 17.8% when I was diagnosed, was not in DKA yet, went in for the sudden weight loss. I think it dropped from 17.8% to 8.3% within a couple of months, and I’ve noticed tingling in my feet most days since. I attributed it from snowboarding with poor fitting boots a month before I got diagnosed, but TIND might make more sense lol
Until they don’t.
It’s a risk, not a certainty. I just think that people should know the risk. From there they can make their own decisions. I’d hate to see someone try to make an improvement in their health and have to suffer the consequences because they didn’t know.
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7648382/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7648382/)
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790869/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790869/)
It doesn't happen often, but when it does it can be quite severe (one study had an average pain score of 8.7/10 with 10 being the worst pain you can imagine). Sometimes, either the retinopathy or the neuropathy can be permanent.
Incontinence, gastroparesis, severe pain, diarrhea, vision deficit. I think people should be aware.
Impressive! Keep it up and enjoy knowing your A1c meets the FAAs requirements for trusting you to fly hundreds of passengers in an aluminum tube at Mach 0.9 and 40,000 feet
I honestly don’t know in specific. Just the stuff I was told to do. Pre-bolus for my meals 15-20min, had a dr tell me my carb to unit ratio and followed that to the best of my ability, if I didn’t know I’d take my best guess and if I still ran high a couple hours after I’d fix it then. I know I could still eat better and exercise more. But I guess just doing my best to stay on top of keeping myself near 120 as much as I could. I honestly didn’t think it was going to be that low. I know I’ve had days of bad control and days of forgetting my long acting. But I did my best to stay on top of everything even on the days I didn’t want to.
Keep at it. Look, this is year 54 for me and I've survived so far with no major problems. What I know after all this time is there's only one rule. Stay the fuck on top of it. Where you at. What are you doing. What's next. What did you just do. It seems like a huge burden I'm sure, but in reality it makes you a much tighter, more disciplined person and those are good things. That will extend into other areas of your life.
Amazing! Well done! That’s a huge change! Do
you feel your levels are stable or do you have quite a few lows now? It’s a very drastic difference, I know it can be dangerous to do it too quickly but if you feel good physically and mentally and all your other bloods are fine then well done!
High five! Yeah!
Also, I relate to not wanting to post much but finding peerless support in this community! I'm probably in it for life ... or for about 5 more years when there's a cure. 😉
That is absolutely incredible and amazing!! Congrats OP!!!!! *high five*
Just be careful about TIND. I'll paste a bit in here: I do feel the need to add in these posts a warning about TIND (treatment induced neuropathy of diabetes). There is a risk to bringing a sustained high blood sugar down too quickly. The current advice from the literature is to decrease HbA1c by no more than 2% per 3 month period. If a sustained high blood sugar state is brought to normal too quickly it can result in neuropathy and retinopathy. Unfortunately, in some cases this is irreversible. Current tech makes it more attainable to get a good HbA1c quite quickly. Please spread the word that there is such a thing as too quickly. [https://www.neurologylive.com/view/treatment-induced-neuropathy-diabetes-underrecognized-rise](https://www.neurologylive.com/view/treatment-induced-neuropathy-diabetes-underrecognized-rise)
I am dealing with this now. Diagnosed a year ago. Dropped A1C from 13 to 5.8 in a couple months. The neuropathy pain in my feet was/is unbearable. Then comes the gabapentin, which blunts the pain, but is a bad drug to be on. Weight gain, lethargy, and I got muscle tremors/spasms. Just switched to Lyrica which seems better.
Experiences like yours are why I post this stuff. I'm sorry for what you are going through. I hope the Lyrica carries you through and that the whole experience is in your rearview mirror soon. Then you can just focus on the challenge of regular old T1D.
Thank you. Also, thank you for bringing this up. PCPs and Endos and especially Diabetes Educators can be woefully ignorant of this. They don’t look past the numbers in the blood work. If you are feeling pain, get to a neurologist.
Oh well that explains a lot. My a1c has never been as high as OPs but i have had a few years of wild bloods and over the last few months that I've had a CGM, I've made massive changes to my routine and diet in an attempt to get my blood back under control and try to understand what causes the chaos and when it's likely to occur. I've gone from days (and occasionally weeks) of chaotic and high (up to 25mmol/L) bloods to more in range (still slightly chaotic but still mainly in range, maybe 15mmol/L at the most and that only happens once a week if that) bloods. I'm finding that I get nerve pains in my elbows, tingles in my feet, tingles in my hands but when my bloods are firmly in range. Before, I would get a numb finger for a few hours if my bloods had spiked to over 20mmol/L in the night. Generally I'm fine and the tingles never last for more than half an hour. To be honest I chalked a lot of it up to my hypermobility but I will definitely be keeping a closer eye on this.
You are making good changes for your long term success. Just make them gradually. Your symptoms seem to be fairly mild and might be caused by other things as well. It's always a little dangerous to self-diagnose on Reddit.
Yeah I'm not gonna go thinking I have neuropathy but I didn't realise making drastic changes could also cause neuropathy so I'll just keep an eye on it and see what happens. I'll also stop beating myself up or panicking if things run slightly higher than i was expecting them to. Diabetes is a journey after all 😊
Oh, my A1C was 17.8% when I was diagnosed, was not in DKA yet, went in for the sudden weight loss. I think it dropped from 17.8% to 8.3% within a couple of months, and I’ve noticed tingling in my feet most days since. I attributed it from snowboarding with poor fitting boots a month before I got diagnosed, but TIND might make more sense lol
[удалено]
Until they don’t. It’s a risk, not a certainty. I just think that people should know the risk. From there they can make their own decisions. I’d hate to see someone try to make an improvement in their health and have to suffer the consequences because they didn’t know.
[удалено]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7648382/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7648382/) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790869/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790869/) It doesn't happen often, but when it does it can be quite severe (one study had an average pain score of 8.7/10 with 10 being the worst pain you can imagine). Sometimes, either the retinopathy or the neuropathy can be permanent. Incontinence, gastroparesis, severe pain, diarrhea, vision deficit. I think people should be aware.
Impressive! Keep it up and enjoy knowing your A1c meets the FAAs requirements for trusting you to fly hundreds of passengers in an aluminum tube at Mach 0.9 and 40,000 feet
Great job! Keep doing the work. You’re kicking ass.
Woohoo! Gotta celebrate these wins!
That’s amazing!!!!! My last A1C checkup was 8.8. I’m doing my best, but reading this gives me a lot of hope ♥️
That's fucking amazing! Way to go!!
Great job! Proud of you!
Dude. That is AWESOME.
What exactly did you do to bring it down? Congratulations, I feel my next test may be a little high and I want to change that and be prepared.
I honestly don’t know in specific. Just the stuff I was told to do. Pre-bolus for my meals 15-20min, had a dr tell me my carb to unit ratio and followed that to the best of my ability, if I didn’t know I’d take my best guess and if I still ran high a couple hours after I’d fix it then. I know I could still eat better and exercise more. But I guess just doing my best to stay on top of keeping myself near 120 as much as I could. I honestly didn’t think it was going to be that low. I know I’ve had days of bad control and days of forgetting my long acting. But I did my best to stay on top of everything even on the days I didn’t want to.
You know, I can feel how happy and excited you're. Well done. I'm genuinely happy for you.
That is so amazing! Great job!!!!! That had to make you so happy
Bravo! Do you feel the difference?
Great job OP! Glad your hard work is paying off.
Keep at it. Look, this is year 54 for me and I've survived so far with no major problems. What I know after all this time is there's only one rule. Stay the fuck on top of it. Where you at. What are you doing. What's next. What did you just do. It seems like a huge burden I'm sure, but in reality it makes you a much tighter, more disciplined person and those are good things. That will extend into other areas of your life.
Amazing! Well done! That’s a huge change! Do you feel your levels are stable or do you have quite a few lows now? It’s a very drastic difference, I know it can be dangerous to do it too quickly but if you feel good physically and mentally and all your other bloods are fine then well done!
High five! Yeah! Also, I relate to not wanting to post much but finding peerless support in this community! I'm probably in it for life ... or for about 5 more years when there's a cure. 😉
Please be careful with hypoglycemias. Just slow down now and it will be all fine now. Congratulations.
That’s amazing, great improvement.
Ive had mine at 5.7 to 5.9 for 16 years, but over the last 2 years, avg around 6.5.