CFRD and hypoglycemia

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Sralidar

New member
Hey everyone, So I'm 23 with CF and have CF related diabetes. I was diagnosed with CFRD at 18 and get pretty crazy spikes and drops in bloodsugar every day. I wanted to put a question out there in case anyone has this problem and might be able to help. I've been getting worsening episodes of hypoglycemia every day and am practically attached to glucose tablets, I'm on hardly any insulin 2.5 u novolog in the morning for breakfast and that's it. I crash several times throughout the day and have to take loads of sugar just to come back up to normal, on the other side I hit 200 pretty consistently as well but never stay there very long. I'm concerned any more insulin would send me into a hypoglycemic coma, but even trying to eat a variety of foods crash all the time. I keep being told that the spiking and crashing is just part of the CF diabetes, but it's gotten to the point where I can't go 2 hours without sugar and food of some sort. Anyone have this problem who might have figured a way around it? Mostly the lows over the highs. (side note, from 18-21 I was on low dose of Lantus, which I was taken off of because I was starting to crash low all the time).
~Brandon
 
S

Sralidar

New member
Hey everyone, So I'm 23 with CF and have CF related diabetes. I was diagnosed with CFRD at 18 and get pretty crazy spikes and drops in bloodsugar every day. I wanted to put a question out there in case anyone has this problem and might be able to help. I've been getting worsening episodes of hypoglycemia every day and am practically attached to glucose tablets, I'm on hardly any insulin 2.5 u novolog in the morning for breakfast and that's it. I crash several times throughout the day and have to take loads of sugar just to come back up to normal, on the other side I hit 200 pretty consistently as well but never stay there very long. I'm concerned any more insulin would send me into a hypoglycemic coma, but even trying to eat a variety of foods crash all the time. I keep being told that the spiking and crashing is just part of the CF diabetes, but it's gotten to the point where I can't go 2 hours without sugar and food of some sort. Anyone have this problem who might have figured a way around it? Mostly the lows over the highs. (side note, from 18-21 I was on low dose of Lantus, which I was taken off of because I was starting to crash low all the time).
~Brandon
 
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jpatapow

Guest
I'm 25, I've had CFRD since I was 20. Based on what you said, I would suggest eating more complex carbs. Glucose tablets and candy don't do anything, especially if you barely do any insulin and are still seeing drops. They are simple carbs and will only keep your sugar up for an hour or so. It sounds to me like you have a very mild case. What does your diet consist of?
 
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jpatapow

Guest
I'm 25, I've had CFRD since I was 20. Based on what you said, I would suggest eating more complex carbs. Glucose tablets and candy don't do anything, especially if you barely do any insulin and are still seeing drops. They are simple carbs and will only keep your sugar up for an hour or so. It sounds to me like you have a very mild case. What does your diet consist of?
 
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mmmtat

New member
I can relate. I have lows more than highs, and I have to eat ALL the time, but at the same time food makes it worse because it sends me into cycles of spiking (200) and then dropping really fast (40). I was put on 1/2 unit of novolog with my biggest meal of the day, but even that was too much (they even had to give me the children's pen, because the adult pens don't have half units). Now I don't take any insulin.
Anyway. The only thing I have found to help, is cutting caffiene out of my diet. I know it sounds weird, and my doctors said there have never been any studies regarding caffiene and low blood sugar, but if it works for me then go for it.
I went from being in a constant, daily, hourly struggle of low sugar, to only having the issue once or twice a week.
It didn't matter whether I ate simple sugars, complex carbs, mixed with protein, etc...I tried everything and was still in this constant swing.
I hope you find something soon that helps you, cause I know it sucks to be in a constant low sugar crash.
 
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mmmtat

New member
I can relate. I have lows more than highs, and I have to eat ALL the time, but at the same time food makes it worse because it sends me into cycles of spiking (200) and then dropping really fast (40). I was put on 1/2 unit of novolog with my biggest meal of the day, but even that was too much (they even had to give me the children's pen, because the adult pens don't have half units). Now I don't take any insulin.
Anyway. The only thing I have found to help, is cutting caffiene out of my diet. I know it sounds weird, and my doctors said there have never been any studies regarding caffiene and low blood sugar, but if it works for me then go for it.
I went from being in a constant, daily, hourly struggle of low sugar, to only having the issue once or twice a week.
It didn't matter whether I ate simple sugars, complex carbs, mixed with protein, etc...I tried everything and was still in this constant swing.
I hope you find something soon that helps you, cause I know it sucks to be in a constant low sugar crash.
 
S

Sralidar

New member
Hey,

Thanks for the responses.. So yes, I don't have caffine of any sort really, I'm practically allergic to it. I have a reasonably high carb diet, pastas and breads a lot, along with a much smaller fat intake from meat, which seems to help some, but regardless of what I eat I typically spike 200 + and drop to 50 in a very short time, and the only thing that helps at all is things like ham along with what ever I'm eating, seems to slow the crash a bit, but the problem I ran into with that is if I catch it during a crash or even before it just slows the absorption of the sugar so i'll crash to 65 and 15 glucose tabs later i'll be at 80, of course an hour after that i'll be at 220.. So yeah.. I've gone as high *rarely* as 360 for a short amount of time, but typically go between 60 and 220 every day many times, and the 2.5u of novolog to cover the morning I still hit 180 or so but 3 hours later i'm taking 5 glucose because the insulin is still working and I'm trying to recover all throughout the day it seems.. I typically crash the hardest late afternoon a couple hours after lunch around 4pm every day, usually end up taking 6 glucose *no insulin* just to pull up from that dive. The only strange thing to me, and it's definitely the only thing that keeps me sane with it Ha, is the fact that I dont wake up with lows in the night, so from what i understand the liver is holding the glucose stable over night but during the day its all over the place and always crashing.
~Brandon
 
S

Sralidar

New member
Hey,

Thanks for the responses.. So yes, I don't have caffine of any sort really, I'm practically allergic to it. I have a reasonably high carb diet, pastas and breads a lot, along with a much smaller fat intake from meat, which seems to help some, but regardless of what I eat I typically spike 200 + and drop to 50 in a very short time, and the only thing that helps at all is things like ham along with what ever I'm eating, seems to slow the crash a bit, but the problem I ran into with that is if I catch it during a crash or even before it just slows the absorption of the sugar so i'll crash to 65 and 15 glucose tabs later i'll be at 80, of course an hour after that i'll be at 220.. So yeah.. I've gone as high *rarely* as 360 for a short amount of time, but typically go between 60 and 220 every day many times, and the 2.5u of novolog to cover the morning I still hit 180 or so but 3 hours later i'm taking 5 glucose because the insulin is still working and I'm trying to recover all throughout the day it seems.. I typically crash the hardest late afternoon a couple hours after lunch around 4pm every day, usually end up taking 6 glucose *no insulin* just to pull up from that dive. The only strange thing to me, and it's definitely the only thing that keeps me sane with it Ha, is the fact that I dont wake up with lows in the night, so from what i understand the liver is holding the glucose stable over night but during the day its all over the place and always crashing.
~Brandon
 
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jpatapow

Guest
What is your sugar like if you don't take any insulin?
 
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Sralidar

New member
If I don't take any in the morning I just hit a slightly higher 200 value, instead of 200 or so I'd hit 250ish, but that can change daily, but even without insulin then I'd still crash after pretty hard, I was told because of an overreaction of the pancreas without natural glucagon to keep it from going low.
 
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Sralidar

New member
If I don't take any in the morning I just hit a slightly higher 200 value, instead of 200 or so I'd hit 250ish, but that can change daily, but even without insulin then I'd still crash after pretty hard, I was told because of an overreaction of the pancreas without natural glucagon to keep it from going low.
 
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imported_Momto2

New member
Hiya, I had a very similar problem (highs between 200-300), and my low spikes would cause me to have seizures. What solved the problem for me was eating at least 2 servings of protein for breakfast and very little carbs or fruit. Certainly no fruit juice, only high fiber lower sugar fruits if I was going to have any at all. Two hours later, some more protein and veggies with it. Still no carbs. Starting around lunchtime, I can have some carbs, but no sugary stuff. By about 4 in the afternoon, I can eat carbs and I dont react to it. It was all very strange, but it worked.....no more spiking, no more seizures, no nothing. Now I am on a almost no carb diet, very high in protein and veggies, some fruit, no added sugar at all. My CFRD is completely gone after bugging me for about 15 years. I also lost some extraneous weight and started exercising heavily, which really seems to help regulate my sugar levels. I dont know if any of this info will help you, but I would certainly try no carbos or sugar before lunch, all protein/veggie/low fruit. I'd stay away from juice, it can be deadly for blood sugar spikes. Good luck. I know how frustrating it can be!

PS according to the tests, my pancreas is non-functional, but I dont take enzymes or insulin. Somehow my body and I have worked out a truce : ) Weird though........
 
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imported_Momto2

New member
Hiya, I had a very similar problem (highs between 200-300), and my low spikes would cause me to have seizures. What solved the problem for me was eating at least 2 servings of protein for breakfast and very little carbs or fruit. Certainly no fruit juice, only high fiber lower sugar fruits if I was going to have any at all. Two hours later, some more protein and veggies with it. Still no carbs. Starting around lunchtime, I can have some carbs, but no sugary stuff. By about 4 in the afternoon, I can eat carbs and I dont react to it. It was all very strange, but it worked.....no more spiking, no more seizures, no nothing. Now I am on a almost no carb diet, very high in protein and veggies, some fruit, no added sugar at all. My CFRD is completely gone after bugging me for about 15 years. I also lost some extraneous weight and started exercising heavily, which really seems to help regulate my sugar levels. I dont know if any of this info will help you, but I would certainly try no carbos or sugar before lunch, all protein/veggie/low fruit. I'd stay away from juice, it can be deadly for blood sugar spikes. Good luck. I know how frustrating it can be!

PS according to the tests, my pancreas is non-functional, but I dont take enzymes or insulin. Somehow my body and I have worked out a truce : ) Weird though........
 
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rubyroselee

New member
I do not have CFRD yet, but I have hypoglycemic episodes constantly. I resort to using glucose tabs quite often because I'm on the go and do not have food on me, and I do not go anywhere without them. I know it has a lot to do with my poor diet - I have two little kids and work full time, so finding time to grocery shop and plan out my meals with quality foods just doesn't happen for me. I find that if I eat a high-protein, low-sugar diet, my sugars tend to stay leveled out better. But if I go more than 3 hours without eating, I start to feel crappy and it usually turns into a hypoglycemic episode. It's really frustrating. But from what I've heard, this is a common occurrence in CF and just another thing we have to deal with. I definitely think that a good diet helps a lot.
 
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rubyroselee

New member
I do not have CFRD yet, but I have hypoglycemic episodes constantly. I resort to using glucose tabs quite often because I'm on the go and do not have food on me, and I do not go anywhere without them. I know it has a lot to do with my poor diet - I have two little kids and work full time, so finding time to grocery shop and plan out my meals with quality foods just doesn't happen for me. I find that if I eat a high-protein, low-sugar diet, my sugars tend to stay leveled out better. But if I go more than 3 hours without eating, I start to feel crappy and it usually turns into a hypoglycemic episode. It's really frustrating. But from what I've heard, this is a common occurrence in CF and just another thing we have to deal with. I definitely think that a good diet helps a lot.
 
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