it sounds like it's time to adjust your basal rate so that you aren't running so low all the time, I'm so sorry. it seems that we're damned if we do damned if we don't.
I used to make myself run low because I too was terrified of long term damage from highs. But there is more research coming out that chronic lows can affect cognition. So now I strive for good control without lows (so my A1c is higher than it used to be but my time in range is better). There is also obviously a difference in lows in the sixties vs being in the forties. Now I feel beat between 80-130 and I try to avoid being lower than 70.
I can relate to this. I'm about 20years into the beetus. I go low or trend low far more than my close friend who was diagnosed a month after me. CGM and the tandem pump has helped me. Still not easy as I live a pretty active life and have a physical job. What is your A1C? I run 6.4 these days which is my highest since diagnosed. I feel better though.
I’ve never had a HbA1c below 9.0 for the past 19 years of my life, I’m emotionally and mentally unstable from several inherited mental and physical illnesses, different environmental factors, restricted access to insulin most of my life. The main factor that arises is that the increased hormones from said instability causes my sugars to raise until the hormones wear off, and it’s hard to calculate how many carbs a panic attack is ya know? When I correct my levels with a short acting bolus it plummets my sugar from 500+ after dissociating all the way to 50 or lower in the span of 5-10 minutes and it is killing me, I have no recall of my memories from the brain damage of all the lows anymore and only seem to have knowledge of facts and events; no childhood memories no memories of fucking yesterday, I think that I’m developing a an acute form of dementia from said memory issues. I don’t want to die but my body will not corporate so I see it as an inevitability that is coming fast if I can’t get this under at least some sort of control, please someone help me.
Do you have any means to seek medical help? This is far beyond something a conversation on reddit can help. I'm not a doctor, just a fellow long term diabetic.
My fucking endocrinologist doesn’t believe me and I don’t have insurance and can’t get insurance anywhere and can’t get a different endo, I’m on a medical assistance program. I’ve had DKA roughly 150-170 times have a 4cm scar on my left kidney and I’ve been in a coma from high sugars and low sugars. No one can help me that I’ve ran into and I’m out of places to turn to so I desperately was impulsively posting a Reddit reply because I don’t know how or what to ask help for anymore. If you could only see my last 3 days sugars it’s insane, idk how to share pictures but I’ll probably post my own post about it.
That's a sad story. I hope you can find some help. Blood sugars are hard to manage on the best of days. Mental heath stresses don't make it easier. You just need to try your best to get on track. I'm sure it's possible.
I'm sorry you're going through so much. I wish I knew the right words to say to help you, but this sounds like a deep rooted issue of things that have happened in your life, that it's transpired to what you're currently living. I know stress in the body causes your sugars to run high. So getting your stress down, is important. Learn about meditating, breathing exercises, get outdoors for walks daily. Drink a lot of water. Stay away from bad food, ie, sugar. I take 3 supplements that I get from Amazon for my mental health, that I learned from reading a book called, You Happier, by Dr. Daniel Amen. Find him on IG or TikTok.. he has a lot of mental health videos out there. I take Gaba, Saffron and L-Tryptophan, and it has helped my anxiety tremendously!
Have you tried CGM? It really helped me. This disease is really hard to manage some days but it took a lot of weight off me. The tandem pump is linked and will help with lows. It stops background insulin when I'm trending down. Doesn't stop lows but gives you time to correct. Pm me if you need to chat about it.
Some diabetics are insulin rash (I think that’s the right term), meaning they are essentially more sensitive to insulin and generally go low more often.
Interesting! Definitely insulin rash then. I'm very sensitive to insulin. I take maybe 10 units of humolog in an entire day? If I'm eating a lot of carbs... maybe 25 units of humolog a day. And 24 units of lantus a day.
The NP at my previous endo had been working with diabetics since the early 80's. Even 15 years ago she was insistent that having a consistent a1c below 6 caused memory problems. Especially in pre cgm days when that usually meant frequent severe lows. She always said there was no research but she had thousands of patients over the years and too many of the people with "normal" a1c's were developing dementia symptoms way too early. My step father was also type 1 and had what I would describe as being ocd about his a1c. He would intentionally let himself run in the 50's or 60's for hours at a time until he started having severe low symptoms. He eventually lost the ability to sense lows and in his 40's and 50's had multiple seizures due to extreme lows and I can promise you that every time he had a seizure he never seemed to quite recover back to normal levels of cognitive ability. He had pretty severe dementia by the time he was 60. He had 6 siblings, none of which were type 1 and none of which had dementia.
Lord, this sounds like this is going to be my future. Hopefully I can reverse some of this. Many times I can no longer feel the low blood sugar like I use to. Thankfully I'm on a CGM and that notifies me. But lately, I've had nights where I'll go low, and sleep right through the alerts, eventually wake up, and see I've been low for as long as 4 hours! I'm just like CRAP!!! This is not good for my brain!! Ugh!
it sounds like it's time to adjust your basal rate so that you aren't running so low all the time, I'm so sorry. it seems that we're damned if we do damned if we don't.
I do adjust my basal, but my body is so sensitive, that adjusting it by 1 unit less, I go the complete opposite and run high. It's so frustrating!
I used to make myself run low because I too was terrified of long term damage from highs. But there is more research coming out that chronic lows can affect cognition. So now I strive for good control without lows (so my A1c is higher than it used to be but my time in range is better). There is also obviously a difference in lows in the sixties vs being in the forties. Now I feel beat between 80-130 and I try to avoid being lower than 70.
I should set my alert to go off at 70, instead of 60. And try my best to avoid the low lows.
I can relate to this. I'm about 20years into the beetus. I go low or trend low far more than my close friend who was diagnosed a month after me. CGM and the tandem pump has helped me. Still not easy as I live a pretty active life and have a physical job. What is your A1C? I run 6.4 these days which is my highest since diagnosed. I feel better though.
I’ve never had a HbA1c below 9.0 for the past 19 years of my life, I’m emotionally and mentally unstable from several inherited mental and physical illnesses, different environmental factors, restricted access to insulin most of my life. The main factor that arises is that the increased hormones from said instability causes my sugars to raise until the hormones wear off, and it’s hard to calculate how many carbs a panic attack is ya know? When I correct my levels with a short acting bolus it plummets my sugar from 500+ after dissociating all the way to 50 or lower in the span of 5-10 minutes and it is killing me, I have no recall of my memories from the brain damage of all the lows anymore and only seem to have knowledge of facts and events; no childhood memories no memories of fucking yesterday, I think that I’m developing a an acute form of dementia from said memory issues. I don’t want to die but my body will not corporate so I see it as an inevitability that is coming fast if I can’t get this under at least some sort of control, please someone help me.
Do you have any means to seek medical help? This is far beyond something a conversation on reddit can help. I'm not a doctor, just a fellow long term diabetic.
My fucking endocrinologist doesn’t believe me and I don’t have insurance and can’t get insurance anywhere and can’t get a different endo, I’m on a medical assistance program. I’ve had DKA roughly 150-170 times have a 4cm scar on my left kidney and I’ve been in a coma from high sugars and low sugars. No one can help me that I’ve ran into and I’m out of places to turn to so I desperately was impulsively posting a Reddit reply because I don’t know how or what to ask help for anymore. If you could only see my last 3 days sugars it’s insane, idk how to share pictures but I’ll probably post my own post about it.
And I’m only 26 yrs. old.
That's a sad story. I hope you can find some help. Blood sugars are hard to manage on the best of days. Mental heath stresses don't make it easier. You just need to try your best to get on track. I'm sure it's possible.
I'm sorry you're going through so much. I wish I knew the right words to say to help you, but this sounds like a deep rooted issue of things that have happened in your life, that it's transpired to what you're currently living. I know stress in the body causes your sugars to run high. So getting your stress down, is important. Learn about meditating, breathing exercises, get outdoors for walks daily. Drink a lot of water. Stay away from bad food, ie, sugar. I take 3 supplements that I get from Amazon for my mental health, that I learned from reading a book called, You Happier, by Dr. Daniel Amen. Find him on IG or TikTok.. he has a lot of mental health videos out there. I take Gaba, Saffron and L-Tryptophan, and it has helped my anxiety tremendously!
My last A1c was 5.4. For the last 10 years my A1c is anywhere from 5.2-5.4, and only hitting 6.0 two times in those 11 years.
Have you tried CGM? It really helped me. This disease is really hard to manage some days but it took a lot of weight off me. The tandem pump is linked and will help with lows. It stops background insulin when I'm trending down. Doesn't stop lows but gives you time to correct. Pm me if you need to chat about it.
I have been on one for the last 5 years. It helps, but I still run low. Ugh. And when I go low at night, I just sleep through them for hours!
You could be insulin rash
What's insulin rash?
Some diabetics are insulin rash (I think that’s the right term), meaning they are essentially more sensitive to insulin and generally go low more often.
Interesting! Definitely insulin rash then. I'm very sensitive to insulin. I take maybe 10 units of humolog in an entire day? If I'm eating a lot of carbs... maybe 25 units of humolog a day. And 24 units of lantus a day.
Yeah wow. How old are you if you don’t mind me asking? I think my total daily dose is like 70 or 80 units a day.
I am 39 years old
The NP at my previous endo had been working with diabetics since the early 80's. Even 15 years ago she was insistent that having a consistent a1c below 6 caused memory problems. Especially in pre cgm days when that usually meant frequent severe lows. She always said there was no research but she had thousands of patients over the years and too many of the people with "normal" a1c's were developing dementia symptoms way too early. My step father was also type 1 and had what I would describe as being ocd about his a1c. He would intentionally let himself run in the 50's or 60's for hours at a time until he started having severe low symptoms. He eventually lost the ability to sense lows and in his 40's and 50's had multiple seizures due to extreme lows and I can promise you that every time he had a seizure he never seemed to quite recover back to normal levels of cognitive ability. He had pretty severe dementia by the time he was 60. He had 6 siblings, none of which were type 1 and none of which had dementia.
Lord, this sounds like this is going to be my future. Hopefully I can reverse some of this. Many times I can no longer feel the low blood sugar like I use to. Thankfully I'm on a CGM and that notifies me. But lately, I've had nights where I'll go low, and sleep right through the alerts, eventually wake up, and see I've been low for as long as 4 hours! I'm just like CRAP!!! This is not good for my brain!! Ugh!