Testing beyond OGTT?

C

cindylou

Guest
Hi all,

I've got a question for you guys today! I have always had hypoglycemia (my mom has similar issues and it's not uncommon in CF, so I've never been surprised!). In recent years, I can tell that my sugars have gotten more "unstable" - both lows and (what feel like) highs. Also, I've always had a small bladder and ALWAYS woken up at least once a night to pee, but in the past few years I've considered myself lucky if I am only getting up twice a night (versus 4 or 5 times!). I eat a very healthy diet and take good care of myself, which of course helps a lot, but I've definitely noticed issues. Two years ago my OGTT came back positive for insulin resistance/glucose intolerance. I figured it meant I was on the road to diabetes, but not there yet.

A few weeks ago I started noticing people on different CF forums talking about getting diagnosed with CFRD after PASSING the OGTT. I was in the hospital last month and due for my test, so I brought the subject up with my doctor. She essentially brushed off my concerns and said that the OGTT is the gold standard in CF, and that it usually picks up CFRD before insulin is even needed. When I did my test my number was actually perfect (110), so I figured that everything was fine and that dramatically reducing my refined sugar in the last 2 years has made enough of a difference to bring my sugars back into the "normal" range. All the nurses were amazed by my great number and they all said it was better than their OGTTs, etc....

But then this morning I was reading on here and again noticed several people talking about getting diagnosed with CFRD after passing the OGTT. After being so totally brushed off by my doctor, I'm not sure if this is something I should pursue or not. My biggest concern is feeling like my bloodsugars are more unstable than they were before (my lows and highs are both really hard to crawl out of once they hit, if that makes sense), and being up at night so much to pee. I do deal with daily fatigue, aches and pains, etc., but I also have other issues (chronic fatigue syndrome, fibromyalgia, hypothyroidism, low iron, etc.) that cause those, so I couldn't exactly call that a "symptom." I usually do ok at maintaining my weight. Overall, I don't necessarily feel like I AM diabetic, so I'm just not sure what to do!

Part of me is tempted to just take my doctor's word for it, trust my great OGTT number from last month, and call it good until next year - but the other part of me is wondering if I really should push harder for longer monitoring. If I do, and it's negative, I'll feel pretty stupid. On the other hand, if there is a real issue I need to be aware of, I'd kick myself for not knowing. On the other other hand, based on the doctor's response last time, I'm not sure I could even convince my clinic that more testing is worth having.

So I'm curious to know what other peoples' experiences were? What were your symptoms? What led you to get testing beyond the OGTT? What were your numbers like on the OGTT?

Thanks!
 
C

cindylou

Guest
Hi all,

I've got a question for you guys today! I have always had hypoglycemia (my mom has similar issues and it's not uncommon in CF, so I've never been surprised!). In recent years, I can tell that my sugars have gotten more "unstable" - both lows and (what feel like) highs. Also, I've always had a small bladder and ALWAYS woken up at least once a night to pee, but in the past few years I've considered myself lucky if I am only getting up twice a night (versus 4 or 5 times!). I eat a very healthy diet and take good care of myself, which of course helps a lot, but I've definitely noticed issues. Two years ago my OGTT came back positive for insulin resistance/glucose intolerance. I figured it meant I was on the road to diabetes, but not there yet.

A few weeks ago I started noticing people on different CF forums talking about getting diagnosed with CFRD after PASSING the OGTT. I was in the hospital last month and due for my test, so I brought the subject up with my doctor. She essentially brushed off my concerns and said that the OGTT is the gold standard in CF, and that it usually picks up CFRD before insulin is even needed. When I did my test my number was actually perfect (110), so I figured that everything was fine and that dramatically reducing my refined sugar in the last 2 years has made enough of a difference to bring my sugars back into the "normal" range. All the nurses were amazed by my great number and they all said it was better than their OGTTs, etc....

But then this morning I was reading on here and again noticed several people talking about getting diagnosed with CFRD after passing the OGTT. After being so totally brushed off by my doctor, I'm not sure if this is something I should pursue or not. My biggest concern is feeling like my bloodsugars are more unstable than they were before (my lows and highs are both really hard to crawl out of once they hit, if that makes sense), and being up at night so much to pee. I do deal with daily fatigue, aches and pains, etc., but I also have other issues (chronic fatigue syndrome, fibromyalgia, hypothyroidism, low iron, etc.) that cause those, so I couldn't exactly call that a "symptom." I usually do ok at maintaining my weight. Overall, I don't necessarily feel like I AM diabetic, so I'm just not sure what to do!

Part of me is tempted to just take my doctor's word for it, trust my great OGTT number from last month, and call it good until next year - but the other part of me is wondering if I really should push harder for longer monitoring. If I do, and it's negative, I'll feel pretty stupid. On the other hand, if there is a real issue I need to be aware of, I'd kick myself for not knowing. On the other other hand, based on the doctor's response last time, I'm not sure I could even convince my clinic that more testing is worth having.

So I'm curious to know what other peoples' experiences were? What were your symptoms? What led you to get testing beyond the OGTT? What were your numbers like on the OGTT?

Thanks!
 
M

mmmtat

New member
I'm one of those who passed all my OGTTs with no abnormalities. I would request an endo, and a week long dexcom trial. That is how I was diagnosed and put on insulin. It's a continuous meter, and while it is not as accurate as finger sticks, it shows you your patterns through the day, and would reveal if you are going high (and low too).

I think because our pancreas' still produce some insulin (mine just has really bad timing), it's totally possible to pass an OGTT and still be diabetic.

I was getting so tired of the lows (no idea I was going high), that I pushed and pushed my CF clinic for an answer, and they finally referred me to an endo. The endo initially diagnosed me with reactive hypoglycemia, but the only thing you can do for that is change your diet, which I had already done and was still having lows. They finally did the dexcom, and saw I was going high pretty much everytime before I went low.

They also then decided to explain to me that insulin could actually help my lows, by keeping me on a more even keel. It's a work in progress, but I'd rather be diagnosed and work out the treatment then wonder why I feel like crap all the time.

Goodluck!
 
M

mmmtat

New member
I'm one of those who passed all my OGTTs with no abnormalities. I would request an endo, and a week long dexcom trial. That is how I was diagnosed and put on insulin. It's a continuous meter, and while it is not as accurate as finger sticks, it shows you your patterns through the day, and would reveal if you are going high (and low too).

I think because our pancreas' still produce some insulin (mine just has really bad timing), it's totally possible to pass an OGTT and still be diabetic.

I was getting so tired of the lows (no idea I was going high), that I pushed and pushed my CF clinic for an answer, and they finally referred me to an endo. The endo initially diagnosed me with reactive hypoglycemia, but the only thing you can do for that is change your diet, which I had already done and was still having lows. They finally did the dexcom, and saw I was going high pretty much everytime before I went low.

They also then decided to explain to me that insulin could actually help my lows, by keeping me on a more even keel. It's a work in progress, but I'd rather be diagnosed and work out the treatment then wonder why I feel like crap all the time.

Goodluck!
 
M

mmmtat

New member
Also, just a thought, you might go to walmart and buy a relion meter, and try testing yourself if you feel low, to see if it's a true low, or also, might try testing one or two hours after a carby meal. My endo said if you ever hit 200, you are diabetic, but I've heard other people's doctors have different standards.

If you've never tested, it might be worth seeing, because then you could take your meter in and show your doctor "look there is a problem". My dietician (different clinic than my current one) told me about five years ago to get a meter to see if I was really going low. I did, and I was, but when I ran out of the strips it came with, I stopped testing because they are expensive, and I didn't have perscription.

Anyway, I took out that old meter a few weeks ago and saw the numbers, I was hitting 250+ a lot more than I was reading low, but at the time I didn't know that was bad. So basically...as far as I can tell, I went undiagnosed for *at least* 5 years, who knows how long really. And all that time I was getting my yearly OGTT.
 
M

mmmtat

New member
Also, just a thought, you might go to walmart and buy a relion meter, and try testing yourself if you feel low, to see if it's a true low, or also, might try testing one or two hours after a carby meal. My endo said if you ever hit 200, you are diabetic, but I've heard other people's doctors have different standards.

If you've never tested, it might be worth seeing, because then you could take your meter in and show your doctor "look there is a problem". My dietician (different clinic than my current one) told me about five years ago to get a meter to see if I was really going low. I did, and I was, but when I ran out of the strips it came with, I stopped testing because they are expensive, and I didn't have perscription.

Anyway, I took out that old meter a few weeks ago and saw the numbers, I was hitting 250+ a lot more than I was reading low, but at the time I didn't know that was bad. So basically...as far as I can tell, I went undiagnosed for *at least* 5 years, who knows how long really. And all that time I was getting my yearly OGTT.
 
S

saveferris2009

New member
Yup. Get a diabetes meter, test yourself 4-6 times a day, and see what you see. Eat regularly.

An OGTT is what your blood sugar is like at that point in time. It doesn't mean that tomorrow that same sugar drink you had wouldn't produce the same result.

As your lungs change from flare up to non, or vice versa, the inflammation can make you more insulin resistant. As your pancreas becomes more damaged, it can produce less insulin.

GO with your gut - test your blood sugar for a week, 2 hours after your 1st bite of each meal, and right upon awakening and bring the results to an Endo.

After my experience the past few months, I'm going to ask the CFF what it's deal is with this whole OGTT protocol. It clearly is giving MANY people a false sense of security and is causing unnecessary infections/lung damage due to undiagnosed CFRD.
 
S

saveferris2009

New member
Yup. Get a diabetes meter, test yourself 4-6 times a day, and see what you see. Eat regularly.

An OGTT is what your blood sugar is like at that point in time. It doesn't mean that tomorrow that same sugar drink you had wouldn't produce the same result.

As your lungs change from flare up to non, or vice versa, the inflammation can make you more insulin resistant. As your pancreas becomes more damaged, it can produce less insulin.

GO with your gut - test your blood sugar for a week, 2 hours after your 1st bite of each meal, and right upon awakening and bring the results to an Endo.

After my experience the past few months, I'm going to ask the CFF what it's deal is with this whole OGTT protocol. It clearly is giving MANY people a false sense of security and is causing unnecessary infections/lung damage due to undiagnosed CFRD.
 
C

cindylou

Guest
If you get a response from them, I'd be very interested to hear it!
 
C

cindylou

Guest
If you get a response from them, I'd be very interested to hear it!
 
S

saveferris2009

New member
Sure. In the meantime, you need to take care of YOU. Test your sugars - OneTouch will give you a meter for free with an Rx:

https://www.onetouch.com/offers?utm_source=DISP_ONETOUCH_HOME&utm_medium=OneTouch&utm_campaign=2011DRTV
 
S

saveferris2009

New member
Sure. In the meantime, you need to take care of YOU. Test your sugars - OneTouch will give you a meter for free with an Rx:

https://www.onetouch.com/offers?utm_source=DISP_ONETOUCH_HOME&utm_medium=OneTouch&utm_campaign=2011DRTV
 
J

JustDucky

New member
I was also one of those people who passed my OGTT but am diabetic. I tested my sugars several times a day to establish a pattern and there were times I was running very high and then I too would crash. First I was put on Prandin, an oral hypoglycemic and my sugars still were difficult to control.....until I was put on insulin, Lantus 10 units at HS (sleep time) and novolog on a sliding scale. Ever since I was put on Lantus, my sugars have been so much better and the need for coverage isn't too frequent ( only when I splurge on some serious carbs like cake, candy etc). I am glad my doc decided to treat me because of my sugar trends and not because of my OGTT results or I would be a mess today.

Jenn 40 wCF
 
J

JustDucky

New member
I was also one of those people who passed my OGTT but am diabetic. I tested my sugars several times a day to establish a pattern and there were times I was running very high and then I too would crash. First I was put on Prandin, an oral hypoglycemic and my sugars still were difficult to control.....until I was put on insulin, Lantus 10 units at HS (sleep time) and novolog on a sliding scale. Ever since I was put on Lantus, my sugars have been so much better and the need for coverage isn't too frequent ( only when I splurge on some serious carbs like cake, candy etc). I am glad my doc decided to treat me because of my sugar trends and not because of my OGTT results or I would be a mess today.

Jenn 40 wCF
 
C

cindylou

Guest
Okay, so after a couple days of feeling like the last thing I wanted to do was run out and lance my finger for a week, I have had a bad day blood sugar wise and it's convincing me that maybe I should listen to you guys. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Ha! So I'm looking into getting a monitor. I think I will get one in the next week or so and at first just test if I FEEL high or low - I don't want to test for a solid week yet because I just started Kalydeco, which could potentially change things up or at least muddy the waters. I'll probably give the drug a few weeks to work in my system and then do a week of testing several times a day, and if I find something fishy, take that info to my doctor.

So, since I'm such a newbie... when should I test??? For those of you that diagnosed themselves with CFRD in this way, when did you test yourself?
 
C

cindylou

Guest
Okay, so after a couple days of feeling like the last thing I wanted to do was run out and lance my finger for a week, I have had a bad day blood sugar wise and it's convincing me that maybe I should listen to you guys. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Ha! So I'm looking into getting a monitor. I think I will get one in the next week or so and at first just test if I FEEL high or low - I don't want to test for a solid week yet because I just started Kalydeco, which could potentially change things up or at least muddy the waters. I'll probably give the drug a few weeks to work in my system and then do a week of testing several times a day, and if I find something fishy, take that info to my doctor.

So, since I'm such a newbie... when should I test??? For those of you that diagnosed themselves with CFRD in this way, when did you test yourself?
 
S

saveferris2009

New member
1. Kalydeco won't mess with your sugars. I've been on it for 5 weeks and I know others who have been on it too. No making excuses! Your lungs are going to deteriorate if you don't control this and negate the progress Kalydeco may do for you. Waking up 2 times at night to pee is not normal. Ever. 2. In terms of testing - test right when you wake up, 2 hours after your 1st bite of b'fast, 2 hours after your 1st bite of lunch, 2 hours after 1st bite of dinner. Don't eat within those 2 hours. Set your cell phone alarm to remind you when those 2 hours are up to test. 3. I'm a newbie at all of this too - I just started insulin two days ago. So I know it's hard, it sucks, and it's unfair. But trust me, you will regret permanent lung/kidney/eye/nerve damage if you don't get sugars under control. Put on those big girl panties and test! You can do it. I pass out almost every time I get blood tests and I need ativan every time I get a PICC line - I am the ultimate WEENIE. I promise, if I can test my sugars, you can. HUGS! You can do this <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
1. Kalydeco won't mess with your sugars. I've been on it for 5 weeks and I know others who have been on it too. No making excuses! Your lungs are going to deteriorate if you don't control this and negate the progress Kalydeco may do for you. Waking up 2 times at night to pee is not normal. Ever. 2. In terms of testing - test right when you wake up, 2 hours after your 1st bite of b'fast, 2 hours after your 1st bite of lunch, 2 hours after 1st bite of dinner. Don't eat within those 2 hours. Set your cell phone alarm to remind you when those 2 hours are up to test. 3. I'm a newbie at all of this too - I just started insulin two days ago. So I know it's hard, it sucks, and it's unfair. But trust me, you will regret permanent lung/kidney/eye/nerve damage if you don't get sugars under control. Put on those big girl panties and test! You can do it. I pass out almost every time I get blood tests and I need ativan every time I get a PICC line - I am the ultimate WEENIE. I promise, if I can test my sugars, you can. HUGS! You can do this <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cindylou

Guest
Ha, your message made me smile!!! Thanks so much for your concern - it means a lot to me (and motivates me!). You don't have G551D, do you? The reason I am not wanting to test until I have a few weeks of Kalydeco in my system is because I do have G551D, and the jury is still out on whether or not Kalydeco used for G551D would help regulate blood sugar. Mostly I just want to avoid learning that my sugars are crazy, only to have them improve a few weeks down the road. Like I said though, I think I'm going to get the monitor now and start at least testing when I feel high or low.

One other question - what should I be looking for? What is a "normal" fasting number? I know 80-110 is "normal" after food, but I'm not sure what normal is for fasting.
 
C

cindylou

Guest
Ha, your message made me smile!!! Thanks so much for your concern - it means a lot to me (and motivates me!). You don't have G551D, do you? The reason I am not wanting to test until I have a few weeks of Kalydeco in my system is because I do have G551D, and the jury is still out on whether or not Kalydeco used for G551D would help regulate blood sugar. Mostly I just want to avoid learning that my sugars are crazy, only to have them improve a few weeks down the road. Like I said though, I think I'm going to get the monitor now and start at least testing when I feel high or low.

One other question - what should I be looking for? What is a "normal" fasting number? I know 80-110 is "normal" after food, but I'm not sure what normal is for fasting.
 
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