Weight gain before CFRD dx?

M

MCGrad2006

Guest
So In recent months, I have had (what I consider) a pretty significant drop in lung function. Last year I thought I was feeling bad...in and out of the hospital, the whole bit. So in August was my last hospitalization. From then I felt GREAT! I got 1 cold in January and got over it essentially. Due to my doctor being out of town my regular three month check up was cancelled (was supposed to be Dec.) and I finally got around to seeing him I think February 8...5 months after my hospitalization. My PFT's at the end of that hospital stay were 86% and I was feeling crummy still (long story...long IV...water under the bridge now). So then in February, I was down to 79%! What? I was feeling great! I was able to do stuff and work and everything. My doctor was obviously happy I was feeling so good, but concerned with the PFT's. So I started Zyvox for 2 weeks, then levaquin for two weeks.

Levaquin didn't do anything, in fact my cough got worse on it...so then we started IV's for two weeks. After the two week course of IV's, My PFT's are down even lower (77%, but only once and the other tries were 74-75%). I am starting to get concerned, because I do feel pretty good. Not coughing much, not really much for exercise tolerance, but thats normal for me.

My question is have any of you ever experienced weight GAIN before CFRD? I know CFRD can lower lung function, but I thought it was usually weight loss with CFers. I ask this because, I wake up a lot at night sweating...it's not soaking wet, have to change clothes/sheets kind of sweat, but enough to wake me up and I notice. In addition to my lower PFT's, I have put on some weight in the last six months, maybe 8-9 lbs. Digestion has been pretty steady, maybe a little more exhaustion, but I chalked it up to being on IV's.

Please let me know your experiences. (I apologize if this post seems unorganized, I had it all ready to go this morning and then the website was down for maintenance...so this post is a bit less eloquent! LOL)
 
M

MCGrad2006

Guest
So In recent months, I have had (what I consider) a pretty significant drop in lung function. Last year I thought I was feeling bad...in and out of the hospital, the whole bit. So in August was my last hospitalization. From then I felt GREAT! I got 1 cold in January and got over it essentially. Due to my doctor being out of town my regular three month check up was cancelled (was supposed to be Dec.) and I finally got around to seeing him I think February 8...5 months after my hospitalization. My PFT's at the end of that hospital stay were 86% and I was feeling crummy still (long story...long IV...water under the bridge now). So then in February, I was down to 79%! What? I was feeling great! I was able to do stuff and work and everything. My doctor was obviously happy I was feeling so good, but concerned with the PFT's. So I started Zyvox for 2 weeks, then levaquin for two weeks.

Levaquin didn't do anything, in fact my cough got worse on it...so then we started IV's for two weeks. After the two week course of IV's, My PFT's are down even lower (77%, but only once and the other tries were 74-75%). I am starting to get concerned, because I do feel pretty good. Not coughing much, not really much for exercise tolerance, but thats normal for me.

My question is have any of you ever experienced weight GAIN before CFRD? I know CFRD can lower lung function, but I thought it was usually weight loss with CFers. I ask this because, I wake up a lot at night sweating...it's not soaking wet, have to change clothes/sheets kind of sweat, but enough to wake me up and I notice. In addition to my lower PFT's, I have put on some weight in the last six months, maybe 8-9 lbs. Digestion has been pretty steady, maybe a little more exhaustion, but I chalked it up to being on IV's.

Please let me know your experiences. (I apologize if this post seems unorganized, I had it all ready to go this morning and then the website was down for maintenance...so this post is a bit less eloquent! LOL)
 
S

saveferris2009

New member
have you done an OGTT? Have you done a blood sugar diary of pre and post meals?

My OGTT came out normal but my post-meal sugars are high.

But I have had weight loss, not gain. Definitely do a blood sugar diary to see what's up.
 
S

saveferris2009

New member
have you done an OGTT? Have you done a blood sugar diary of pre and post meals?

My OGTT came out normal but my post-meal sugars are high.

But I have had weight loss, not gain. Definitely do a blood sugar diary to see what's up.
 
M

MCGrad2006

Guest
I have started the daily log. My problem is I munch throughout the day A LOT...so its hard to get a good idea of how I tolerate the sugars within a meal. Know what I mean? In the mornings the past few days, I have been fine, between 84 and 109. Last night before bed I was 210...is that REALLY REALLY high? (Disclaimer...I had a pasta dinner and ice cream, i know, not a good choice).

From what I read before when I have had issues, normal is 80 to 120. So 210 would be way off, but I also thought I have read on here about people who have sugars in the 400 and 500 range.

The reason I ask for weight gain is because I know non-CFer's who are overweight tend to have diabetes...and if CFRD is a combination, then could it potentially go both ways (weight loss in some, weight gain in others)?
 
M

MCGrad2006

Guest
I have started the daily log. My problem is I munch throughout the day A LOT...so its hard to get a good idea of how I tolerate the sugars within a meal. Know what I mean? In the mornings the past few days, I have been fine, between 84 and 109. Last night before bed I was 210...is that REALLY REALLY high? (Disclaimer...I had a pasta dinner and ice cream, i know, not a good choice).

From what I read before when I have had issues, normal is 80 to 120. So 210 would be way off, but I also thought I have read on here about people who have sugars in the 400 and 500 range.

The reason I ask for weight gain is because I know non-CFer's who are overweight tend to have diabetes...and if CFRD is a combination, then could it potentially go both ways (weight loss in some, weight gain in others)?
 
L

lilmac1177

New member
<span style="color: #3366ff;">anything over 180 is when you start peeing out your calories (not good)<img title="Undecided" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-undecided.gif" alt="Undecided" border="0" />
 
L

lilmac1177

New member
<span style="color: #3366ff;">anything over 180 is when you start peeing out your calories (not good)<img title="Undecided" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-undecided.gif" alt="Undecided" border="0" />
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MCGrad2006</b></i> I have started the daily log. My problem is I munch throughout the day A LOT...so its hard to get a good idea of how I tolerate the sugars within a meal. Know what I mean? </end quote>
Ya, this was very tough for me too when I had to do a log. But do your best to only eat every 2 hours, so you can get a good idea of what's going on. I really struggled with this, but you'll get the hang of it.

<div class="FTQUOTE"><begin quote>Last night before bed I was 210...is that REALLY REALLY high? (Disclaimer...I had a pasta dinner and ice cream, i know, not a good choice). From what I read before when I have had issues, normal is 80 to 120. So 210 would be way off, but I also thought I have read on here about people who have sugars in the 400 and 500 range. </end quote>
80-120 is fasting. 2 hours after your first bite of a meal should be less than 140, according to the CFF. So that's high for sure - you might benefit from insulin. But see if it's a pattern for sure.

<div class="FTQUOTE"><begin quote>The reason I ask for weight gain is because I know non-CFer's who are overweight tend to have diabetes...and if CFRD is a combination, then could it potentially go both ways (weight loss in some, weight gain in others)?</end quote>
Type II diabetes exists because those who are overweight have insulin resistance - their pancreas produces an adequate amoun tof insulin, but their body cannot use the insulin efficiently due to the extra fat. Diabetes doesn't make them gain weight - they have diabetes often because of the weight. The only thing CFRD has in common with Type II diabetes is that we are chronically inflammed (due to bugs in our lungs), so we can sometimes become a bit isulin resistant.
Type I diabetes occurs because the pancreas doesn't produce insulin. Over time, with CFRD, our pancreas becomes clogged with mucus and some beta cells can die, therefore the pancreas doesn't produce adequate insulin for us.
So I would be careful about equating weight gain/loss with type I or type II diabetes. If your sugars are high after a diary of 5 days, then that's really the best way to tell.
For myself, I was literally diagnosed 2 weeks ago with similar #s to you. I was getting high 100's and low 200's, which is considered to be catching the very onset of CFRD. CFRD can kind of go in fits and starts at the onset, so catching it at this stage can be a bit tricky but also very very beneficial for your body and you mentioned for lung function, energy, etc.
Keep us posted. I am starting insulin next week and although I'm not thrilled about it, I am definitely looking forward to my lung function to maybe go up a bit more and to feel better.

Take care!
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MCGrad2006</b></i> I have started the daily log. My problem is I munch throughout the day A LOT...so its hard to get a good idea of how I tolerate the sugars within a meal. Know what I mean? </end quote>
Ya, this was very tough for me too when I had to do a log. But do your best to only eat every 2 hours, so you can get a good idea of what's going on. I really struggled with this, but you'll get the hang of it.

<div class="FTQUOTE"><begin quote>Last night before bed I was 210...is that REALLY REALLY high? (Disclaimer...I had a pasta dinner and ice cream, i know, not a good choice). From what I read before when I have had issues, normal is 80 to 120. So 210 would be way off, but I also thought I have read on here about people who have sugars in the 400 and 500 range. </end quote>
80-120 is fasting. 2 hours after your first bite of a meal should be less than 140, according to the CFF. So that's high for sure - you might benefit from insulin. But see if it's a pattern for sure.

<div class="FTQUOTE"><begin quote>The reason I ask for weight gain is because I know non-CFer's who are overweight tend to have diabetes...and if CFRD is a combination, then could it potentially go both ways (weight loss in some, weight gain in others)?</end quote>
Type II diabetes exists because those who are overweight have insulin resistance - their pancreas produces an adequate amoun tof insulin, but their body cannot use the insulin efficiently due to the extra fat. Diabetes doesn't make them gain weight - they have diabetes often because of the weight. The only thing CFRD has in common with Type II diabetes is that we are chronically inflammed (due to bugs in our lungs), so we can sometimes become a bit isulin resistant.
Type I diabetes occurs because the pancreas doesn't produce insulin. Over time, with CFRD, our pancreas becomes clogged with mucus and some beta cells can die, therefore the pancreas doesn't produce adequate insulin for us.
So I would be careful about equating weight gain/loss with type I or type II diabetes. If your sugars are high after a diary of 5 days, then that's really the best way to tell.
For myself, I was literally diagnosed 2 weeks ago with similar #s to you. I was getting high 100's and low 200's, which is considered to be catching the very onset of CFRD. CFRD can kind of go in fits and starts at the onset, so catching it at this stage can be a bit tricky but also very very beneficial for your body and you mentioned for lung function, energy, etc.
Keep us posted. I am starting insulin next week and although I'm not thrilled about it, I am definitely looking forward to my lung function to maybe go up a bit more and to feel better.

Take care!
 
T

TreasureGoddess

Member
Ask if you can see an endocrine doctor that specializes with CF patients or talk with your cf team if they handle CFRD. My son's been pre-diabetic for a while with sometimes no symptoms at all and sometimes major sugar crashes. What they're doing for my kiddo is they have some kind of 24 hr reader thing going on for 5 days and we also track food journal & do 3-4 finger pricks/day to check with the meter. It's a very thin little tube (like an itty bitty iv tube) under the skin on his upper back butt cheek (also done on stomachs but he has almost no body fat), it is attached to a little button looking thing that records 24 hr data for the 5 days. It's taped and not noticable at all.
The endocrine dr's can use this data as a better sense of what's happening with Joe's blood sugars. We've done 2 of those glucose tests in hospital when he was sick, which showed ok fasting & 1 hr readings but high 2 hr readings. This is supposed to give a better idea of his overall insulin levels and such.
Good luck!
 
T

TreasureGoddess

Member
Ask if you can see an endocrine doctor that specializes with CF patients or talk with your cf team if they handle CFRD. My son's been pre-diabetic for a while with sometimes no symptoms at all and sometimes major sugar crashes. What they're doing for my kiddo is they have some kind of 24 hr reader thing going on for 5 days and we also track food journal & do 3-4 finger pricks/day to check with the meter. It's a very thin little tube (like an itty bitty iv tube) under the skin on his upper back butt cheek (also done on stomachs but he has almost no body fat), it is attached to a little button looking thing that records 24 hr data for the 5 days. It's taped and not noticable at all.
The endocrine dr's can use this data as a better sense of what's happening with Joe's blood sugars. We've done 2 of those glucose tests in hospital when he was sick, which showed ok fasting & 1 hr readings but high 2 hr readings. This is supposed to give a better idea of his overall insulin levels and such.
Good luck!
 
I

imported_Momto2

New member
I gained about 20 lbs...ack! Now I have to be very very careful what I eat (I lost the extra weight through very heavy exercise and diet) or I'll put it right back on in a second.
 
I

imported_Momto2

New member
I gained about 20 lbs...ack! Now I have to be very very careful what I eat (I lost the extra weight through very heavy exercise and diet) or I'll put it right back on in a second.
 
M

MCGrad2006

Guest
Hey guys, just a little update.

When I DO NOT snack, my sugars are fine! LOL. The last few days have not been high at all, until last night before bed. I had hot chocolate and a few cookies and 2 hours post was 168....then this AM was 74.

The problem is I can't NOT snack. I can't go that long without eating. So then when I start snacking again, I know my sugars will go up. GAHHH!

Thank you Amy, your post makes a lot of sense and really helps me to see what I need to do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MCGrad2006

Guest
Hey guys, just a little update.

When I DO NOT snack, my sugars are fine! LOL. The last few days have not been high at all, until last night before bed. I had hot chocolate and a few cookies and 2 hours post was 168....then this AM was 74.

The problem is I can't NOT snack. I can't go that long without eating. So then when I start snacking again, I know my sugars will go up. GAHHH!

Thank you Amy, your post makes a lot of sense and really helps me to see what I need to do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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