CFRD and FRUSTRATED!

[ladybug]

OK, so I've been in this CFRD study for a year to see if insulin, pill, or nothing is better for putting on muscle mass, right? Well, I always had/have HUGE issues with hyperglycemia! I'm soooo tired of it! Pretty much everyday, if I dont' eat like every hour, my blood glucose plummets. It is especially bad when I drink Starbucks lattes, have regular soda, etc... I DO take insulin (fast acting Lispro) with such things, and it was always my understanding that if you take the inuslin right away, it will sort of stabalize your pancrease so it doesn't kick out as much insulin over time. I thought it kind of gives your pancrease a "break" and eventually, overtime, it evens out. Well, I've been on insulin for 1 1/2 years now, and it still jumps all over the place! The highest its been is like 280 2 hours post-pasta. And, it plummets to 45-55 every now and again. I'm just tired of it.

Can anyone shed some light on why their docs have said this happens? And, if it happens to you, what do you do? How do you deal with it? Everyday that goes by without hypoglycemia, I think, "wow, I felt great today!"

I even have to eat a candybar and/or fruit before any workout (like right before) or my glucose drops. I know this is normal, but even if I just ate a big dinner one hour ago, I still have to force myself to eat again if I'm going to the gym. Ugh.

 

[thelizardqueen]

I'm also on Lispro, but I take my insulin after I eat because I never know how much I'm going to eat in one sitting, and don't want to worry about either taking not enough or too much insulin before a meal. I also struggle with low sugars sometimes - I sometimes cut my does in half so that I don't go low! That being said I wonder if its the LISPRO that is making me low? Lispro starts to work within 5 minutes, and is at its highest performance 2 hours after taking it, then it goes out of your system. Regular insulin stays in your system for 4 hours, and starts to work within half an hour. Maybe the lispro is starting to work before you've eaten and digested your food? That being said, I've also been told that CFRD sometimes means your pancreas is working and producing some insulin, but not enough, and that once and awhile you can go through stages called a 'honeymoon stage' where your pancreas will decide to work on its own, and you don't have to take as much insulin.

I can think of a few times where I was low most of the night, and had a snack before bed: bag of chips and some juice, and decided to not take insulin. I went to bed with my sugar sitting at 15 (canadian # - not sure how american's convert their #s) and woke up sitting at 2.3 (again, american # readings are different).

 

[anonymous]

You are right, its getting on my nerves too!!!
During my last vacation in Thailand they had a big breakfast buffet. I took fresh vegetables, some cheese,fish, bacon and one plate of fresh fruits(pineapple, papaya, watermelon, dragonfruit) and one small bowl of cereals(Smacks, rice krispies, cornflakes) and I had to take 19/20 units of insulin for it otherwise my sugar would have jumped up to 300 or more. The insulin works for about 3 hours. After about 2 hours I had to start to eat bananas, chocolate and so on to avoid the sugar rushing down...and mostly I did have to take no insulin or only 2 units for Lunch (rice,curry/shrimps).
For these "lots-of-sugar-things" we need lots of insulin at once, but a little bit later the sugar is gone...and the insulin still there...

Uli,43,Germany

 

[ladybug]

Uli,
That's exactly how I feel! I only take 1 unit per 45-60 carbs! (which is super low... the average is 1 unit per 15 carbs). So, my question is, should CFRDers who don't jump up to over 250 really often (although we do sometimes), really need insulin? I mean, will blood sugars jumping up a few times a week really hurt as much as constantly having your body plummet because you took insulin? I guess I'm just confused. CFRD is soooo different than Type I or II, and I guess I just don't know if for those of us who get hypoglycemia really ought be on insulin? I don't want to lose my vision, damage my nerve endings, etc.... but, are the odds all that great with CFRD that we will do this to ourselves by not taking insulin? I mean, usually people really hurt their bodies with diabetes and not taking insulin cause they go high ALL the time, right?

Ugh. I don't know. I don't understand it. It just doesn't really seem like "diabetes" should be the term to describe it in my case. Maybe a "faulty pancrease", but I don't know if it should be treated like a Type I or II diabetic. What do you think?

 

[anonymous]

I think it depends on the time your sugars stay high without insulin and if this is for several hours it will be dangerous in the long run. The other thing is, that you will probably not gain weight or even loose weight without the insulin. Sometimes a "normal" Type II Diabetes seems easier to me like our special one...."just" not eat carbs and getting better...
Maybe you could drink some juice or coke instead of eating something, when you´re already "full", but need sugar again!
The other thing is that the sugar goes into the blood more slowly, if you eat fat with it (and take the right amount of enzyms too), so if your insulin is working very fast, it might be nothing left two hours after (fat) pasta and so the blood sugar is raising.
My insulin works round about 3 hours, so I do take another "shot" about 2 hours after a meal (with much carbs and fat) and try to avoid the raising.

Uli,43,Germany

 

[thelizardqueen]

I find that I'm taking insulin about 2 hours after eating as well to keep my sugars at bay sometimes. I guess it all varies on what it was I ate before.

 

[ladybug]

I've actually LOST weight since being on insulin. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Why am I such a weird duck?

 

[thelizardqueen]

I only lose weight if my sugars run high. When they are normal or low I put weight on.

 

[Claire17]

Hi Sonia,<br>
One of the things that makes CFRD different from types 1 and 2 is
the timing. Many people with CFRD still make some insulin, but
because of CF-related blockages in the pancreas, the
insulin is released later than a normal person's. So if
you have a meal and cover it with  fast-acting insulin, your
blood sugar stays in the normal range. But 45 min to an hour
later, some of the insulin your body produced in response to the
food finally gets out of the pancreas and into your blood
stream and causes you to crash. This might be the cause some of the
low's you talked about. My endocrinologist told me about this, but
she said there hasn't been enough research done on CFRD, nor is
this effect known by most docs.<br>
<br>
What has really helped me control all my lows was getting an
insulin pump. Some people automatically would say, no way, not for
me, but I love it. It  is super easy: no syringes to
carry around, and you can give yourself tiny, tiny amounts. I
thought it would be like having an mini-IV all the time, but it's
not. Here's how it works--the pump has a reservoir with one type of
insulin (usually lispro). You program a really low dose called a
'basal' as a background for all day. This acts similar
to long-acting insulin, only it's much more consistent. Then
whenever you eat, you program the pump to give you a little more.
The cool thing is, you can program it however you like, with any
kind of timing, and really small doses. The pump itself is
about the size of a pager. The only reason I got one is because a
friend who has type 1 and goes to the Joslin Diabetes Center
absolutely loved hers. I asked my doctor to try it and I've loved
it ever since. It takes a couple weeks of adjustment but is
definitely worth it in my opinion. Just a thought to look into.<br>
<br>
Claire<br>
30, CFRD since 1998ish<br>
<br>
<br>
<br>

 

[Ender]

I have the same problem...see it is mostly only for my breakfast meal. Everyother thing i eat during the day seems to be ok with me with, it's wierd.

So try this. For the first meal of the day, eat only protein....like eggs and bacon...or a protien shake with say some nuts, anything with a high level of protien and very little carbs.

It should stabalize it for the morning...and then if you eat balanced meals later on....it should be ok.

Another good trick is to eat a protein bar or half a protein bar between meals, to stabalize your blood sugars.

Also not all carbs are created equal, but you probably know this. Processed breads and pasta tend to digest fast and spike your blood sugar, while stuff like oatmeal, sweet potato and whole grain breads release glucose a lot slower...so while your insulin in your blood stays a bit longer, you still have some left over gluose for it to use, not plummeting you down to no mands land.

Man do i hate that feeling though! The worst ever!

Eat regularly, try those tips and you should be pretty good....

Oh and try to have at least one good protein source with every meal or snack...to balance out the carbs.

Good luck

Kiel

 

[NoExcuses]

What % of CFers have CFRD?

 

[anonymous]

I´m afraid most of us will get it some time...I don´t think there will be much cfers over 40 without cfrd.

Uli,43,Germany,cf/cfrd

 

[kybert]

saw something then that said 43% of cf patients over 30 have diabetes. i dont know if thats accurate, seems a lil high to me.

 

[thelizardqueen]

I was told that 10% of CFers get Diabetes. This is what I was told by a few doctors.

 

[catboogie]

sonia,

i was going to suggest something to you: since it seems like you don't need that much insulin, maybe you should consider switching to a long-acting insulin instead of the short-acting stuff? it's worth asking your doctor about.

i do both kinds, but my insulin needs are much higher than yours i think. the long-acting is like the "basal" dose the insulin pump gives.

when i first got diabetes i was on nph and regular insulin. with this i only did 2 shots a day--nph and regular in the morning (they can mix so just one shot) which covered my breakfast (reg) and lunch (nph). then the tail end of the nph and my evening shot of regular would cover my dinner. might be something that would work for you & enable you to do fewer shots and have less time with low BS.

laura

 

[coltsfan715]

Hey there,
I used to always get lows when I first started taking insulin about 6 years ago. i had to simply reduce the amount of fast acting insulin I was taking. Now when I get lows it is normally an insulin induced low - meaning I have miscalculated the amount of insulin I was supposed to take and took to much. I normally get the hypoglycemic symptoms about 1-2 hours after eating in these cases.
I also get low blood sugar if I go for prolonged periods in the sun and/or without food.
I have gotten to the point where I know the symptoms my body produces when my blood sugar is at different levels without having to check my blood sugar. So I am able to get a snack if I need it (normally OJ or a soda or chocolate and/or crackers). If I need to check my sugars to take more insulin if it is too high.
Even though you may experience lows I would not pursue getting off insulin completely if you are havng very high sugar levels. One of my docs told me that with our B.S.s if they are high they can cause increased inflammation because our bodies think we are sick and start to fight an infection that isn't there. It could ultimately make life alot more uncomfortable for you, not to mention the losing weight and fatigue and everything else that comes with high blood sugars.

As for what % of CFers have CFRD I have heard it is something like 20%, but I am not sure.

Lindsey

Oh and also I was told by a doc that eating fried foods like french fries when you have low blood sugar is not the best - you can eat them but have a coke first or something not fried. For some reason the fried foods take longer to absorb intoour system so you may not get the relief from the low blood sugar when you need it.

 

[anonymous]

When you eat fat and carbs together, the fat slows down the process of the carbs going into the blood.

Uli,43,Germany

 

[ladybug]

Thanks for all the suggestions, guys!

Hmmmm... the docs have mentioned long lasting, but think it would be bad for me... who knows why? maybe cause I do spike with some meals right away, and my pancrease seems to kick in later whenever it feels like it.... long would be bad for that cause the long would still be in there when my pancrease decides to work.

As far as eating carbs and fat.... I do that all the time! I always eat a bunch of peanuts when I drink milk, soda, juices, and also when I eat fruits and veggies. Or, I add cheese to it. For example, I will eat a donut in the morning and then eat a handfull of nuts and a couple slices of cheese for protein. Doesn't seem to make one bit of difference for me. I still go low within and hour or two. Ugh.... Sorry if I sound negative, its just that I've tried the things you talk of that help you, and they just don't seem to be the "rule" for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I was told that at some point I will have to take insulin. Right now I just monitor my sugars. While on prednisone a couple weeks ago I took insulin for the first time. I'm back off now. I will say this and take it for what its worth because I know some of you don't like this product, but Mannatech makes something called Ambrotose which seems to have helped my Blood sugars stay lower. I know other diabetics who've had the same results.

John 26 cf

 

[anonymous]

Thats the problem Sonia!!!

Eating fat and carbs together: after 1-2 hours there is not enough sugar in your blood for all the insulin, so it drops down
The sugar goes into the blood more slowly with fat, but your insulin goes in faster!

Uli,43