hypoglycemia in CF

jaimers

Super Moderator
thank you for posting this! all my blood levels always show that i'm not diabetic but i keep having these "episodes" and the doc couldn't really figure things out so this makes sense!
 

Mistyjo

New member
I'm afraid Jasey has hypoglycemia. The past two mornings she has slept in and had to be woke up. This is very rare for her. One morning we couldn't wake her up. I picked her up and she flopped around like a rag doll. I was going to call squad when she made a noise and started coming out of it. Now I'm terrified to let her sleep. We were out of town all weekend(of course ) and couldn't go to our local ped. Tomorrow I am taking her in. Any thoughts? Or experience with this?
 

rubyroselee

New member
Misty,

See if you can get a glucose monitor to see if that is what is really causing her symptoms. Hypoglycemia is very common in CF, but just to be sure it's not something else, check her sugars when she's having episodes. Let us know how the appointment goes.
 

saveferris2009

New member
I have had these episodes since i was 7, that I can remember..... that makes it 23 years. If I ate regularly I found I would be OK.

Now with CFRD things are different, but it's clear that pancreas endocrine impairment is widespread in CFers LONG before CFRD is diagnosed.
 

Havoc

New member
My dietitian said to me once that if you're going low you're also probably having spikes. As she explained it, people with CF are usually very sensitive to insulin (although because of atrophy and fatty replacement of the pancreas, we may not produce as much of it). So, you have a spike and then eventually your pancreas gets around to dumping enough insulin into your blood. Being highly sensitive to it, it causes a low. I have not researched this extensively, so this is only 2nd hand information from my dietitian.
 

mamerth

New member
I have lows every so often. I stay clear of simple sugars and eat a protein and a fat with my complex carbs. That seems to help greatly.... then sugars down much slower. Once in a while I get a random surprising low (after doing everything by the book). My diabetes doc said that sometimes it just happens. Our pancreas doesn't work the greatest and it will go low for what seems like no reason at all. She told me to always be prepared for low blood sugars.

I have found that steady, not intense, exercise has evened out my blood sugars and my body is able to deal with the foods I eat so much better. I get gotten less highs AND less lows... they are more between 110-130. I can't say that my CFRD is gone but so much better controlled.

The one thing my diabetes doc told me was to never use candy and pop to get my blood sugars back up after a low. She told me that it causes the sugars to spike and then fall again.... you ended up right where you started... low. She told me that fruit juice and a few peanuts is the safest. It allows your sugars to rise slowly but safely and you are less likely to spike and then fall again. (The protein slows things down). Orange juices works awesome!!!

When I did my stress test a few weeks ago they immediately checked my sugars and gave me orange juice. No low blood sugars!
 

imported_Momto2

New member
I've had issues with hypoglycemia since I was about 20. I registerer as low as 30, and thats when I start hitting the seizure line. (Yes, I have seized several times from LBS). Finally figured out what was going on and began to recognize the symptoms. I get irritable and then quite aggressive and REFUSE to eat when my BS gets super low. A couple minutes before I seize, I get the coppery taste of blood in my mouth. At this point, it I have a glucose pill or some juice and can sit and totally relax, I can avoid a seizure. I have found that I CANNOT eat just carbs and fruit for breakfast, I will shoot up over 250, then drop like a stone and seize. I must eat protein, no sugar, no juice, only very small amount of carbs, for breakfast. Then, I can go 5 hours with no problem, even with intense physical exercise. By about 3 in the afternoon, I can eat carbs only if I want, and no spiking. Go figure. Any other time and I have to have protein with whatever I eat, unless its only vegetables or a very high fiber fruit. I spent months tracking my food and taking my blood sugar levels every 30 minutes to figure this system out. Seriously sore fingers! BUT, no seizures for over a decade. : )
 

stevehof

New member
I have had hypoglycemia all my life. It almost always occurs these days late in the afternoon well after lunch and just before dinner. I wasn't able to confirm it until the doc prescribed a glucose meter when I did a dose of prednisone for 10 days. My blood sugar peaks two hours after lunch at around 150 to 175. If I even excerise moderately in the afternoon my Blood sugar will then drop below 60 4 hours after lunch. This happens even if I'm careful to eat a high protien lunch. This does not happen after breakfast or after dinner. I have been eating a light snack about 3 hours after lunch to keep from having the low blood sugar 'attack'...:^)
In the morning before breakfast my blood sugar is about 80 most of the time. So, do I have CFRD or some sort of reactive hyperglycemia followed by hypoglycemia?
In any case, I'm just about to call my GP doc about all this but I thought it would handy to understand better what CFRD is before I begin a dialog with him. The results of my Google search didn't didn't exactly make clear to me the differences between regular diabetes and CFRD.
 

Mistyjo

New member
Jasey's blood glucose level two hrs after breakfast today was 77. She ate French toast and syrup. I thought this was a little low considering what she ate. If it was 77 after, I wonder what it was before breakfast? I can't handle another morning where I can't wake her up. Her pediatrician wants her to see an endocrinologist so now I'm waiting to hear from them. I refuse to do fasting at home with her now!!
 

JustDucky

New member
Before I became diabetic, I was actually hypoglycemic, quite frequently. I recall an incident when I was working as a CNA on a peds unit, I suddenly became very clammy, shaky and dizzy. The nurse took my sugars and it was 43. That was my first real scare with it, I was about 23 at the time, 10 years prior to my CF dx. I had to eat frequently and in small portions to keep my levels acceptable. I wonder how many of you were hypoglycemic before becoming diabetics? My doc said to me that hypoglycemics were more apt to become diabetics, I have to research this, but I find it interesting. Thanks for the articles, they are very informative!

Jenn 40 wCF
 

JohnnaMarie

New member
Thank you for sharing your story. I have reactive hypoglycemia too. I also have the most drastic drops in the Am. My dietician has me drinking a protein shake for a couple of hours in the morning to get past the danger zone. Thank you for posting!
 

rubyroselee

New member
JohnnaMarie- That's what I do as well, a protein shake 2 hours after breakfast and it works wonders!

Mistyjo- It does sound like she probably spiked and then had a bit of a reactive hypoglycemia episode. Hopefully the endo shed some light and keep checking her sugars so that you have a better idea of when the lows happen.
 

Mistyjo

New member
Endocrinologist called and wants us to test her at 3am, as soon as she wakes up and once during day 2hrs after a meal. They want us to start ASAP.
 

imported_Momto2

New member
mistyjo, sounds like very wise precautions. Frankly, if your daughter isnt needle phobic, I'd do it more often. I have found that pricking the dorsal side of the finger (near the cuticle) seems much less painful and you do get enough blood. let us know how it goes please. Blessings to your family.
 
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