CFRD Question

[anonymous]

Hello! I feel like I am in the land of lost with this cystic fibrosis diabetes stuff. This is my daughters (16 w/cf) dilemma. She tested positive for glucose intolerance a couple times now. Her results are around 250 to 300. A couple of times at fasting she has levels around 120. So we tried taking her to a local diabetic doctor who has experience in CFRD to see what we need to do. They took an average of her blood sugar levels in addition to checking her ABIC (something like that) which was 5.6 and said she is fine no treatment necessary. Yahoo! No insulin are anything. Though I worry, because the problem we have is her appetite is the pits, she eats very little throught the day which is great for the blood sugar number since there is little to test with, but at the same time when she does eat her numbers are over 250 and stay that way for quite some hours. Plus she does has a tendency to get real low numbers (I believe due to lack of eating) around 45. So needless to say, of course when you average 300 with 45, the numbers look great, but I worry that can't be good for her body and her lungs. So far PFTs are still great, she is holding her weight (but that is another story, because she is so stopped up, another reason why she isn't eating much). So all and all I am trying to tell myself that all is okay.

Any thoughts would truly be appreciative. I checked so many websites and been able to read about it, but nothing on how it is treated. If the average is under 200 than nothing to worry about? The other side of things is we can't even get the test strips to monitor any more if needed, so again, nothing to worry about???? (Of course, I constantly worry, but if this is okay, then perhaps I am doing my typical "making mountains out of mole hills" thing).

Thank you so much.

Christi (mom to three teenagers, one w/cf)

 

[anonymous]

Hello! I feel like I am in the land of lost with this cystic fibrosis diabetes stuff. This is my daughters (16 w/cf) dilemma. She tested positive for glucose intolerance a couple times now. Her results are around 250 to 300. A couple of times at fasting she has levels around 120. So we tried taking her to a local diabetic doctor who has experience in CFRD to see what we need to do. They took an average of her blood sugar levels in addition to checking her ABIC (something like that) which was 5.6 and said she is fine no treatment necessary. Yahoo! No insulin are anything. Though I worry, because the problem we have is her appetite is the pits, she eats very little throught the day which is great for the blood sugar number since there is little to test with, but at the same time when she does eat her numbers are over 250 and stay that way for quite some hours. Plus she does has a tendency to get real low numbers (I believe due to lack of eating) around 45. So needless to say, of course when you average 300 with 45, the numbers look great, but I worry that can't be good for her body and her lungs. So far PFTs are still great, she is holding her weight (but that is another story, because she is so stopped up, another reason why she isn't eating much). So all and all I am trying to tell myself that all is okay.

Any thoughts would truly be appreciative. I checked so many websites and been able to read about it, but nothing on how it is treated. If the average is under 200 than nothing to worry about? The other side of things is we can't even get the test strips to monitor any more if needed, so again, nothing to worry about???? (Of course, I constantly worry, but if this is okay, then perhaps I am doing my typical "making mountains out of mole hills" thing).

Thank you so much.

Christi (mom to three teenagers, one w/cf)

 

[JazzysMom]

It is impossible (I do mean that literally) for a regular Endocronologist to know how to treat CFRD. The only similiar that they know is the pancrease is involved & the sugars are not stable. The rest is different & because it can affect other aspects of CF its important to find someone who has dealt with CFRD. I know for me that is near impossible to have someone local. I suggest you check with your CF office & get a referral. I am hoping that your CF office is somewhat close & that the referral will also be somehwat close. Its not always easy to find the specialists CFers need. The CF throws a wrench into treatment of a lot of things. Good Luck!

 

[JazzysMom]

It is impossible (I do mean that literally) for a regular Endocronologist to know how to treat CFRD. The only similiar that they know is the pancrease is involved & the sugars are not stable. The rest is different & because it can affect other aspects of CF its important to find someone who has dealt with CFRD. I know for me that is near impossible to have someone local. I suggest you check with your CF office & get a referral. I am hoping that your CF office is somewhat close & that the referral will also be somehwat close. Its not always easy to find the specialists CFers need. The CF throws a wrench into treatment of a lot of things. Good Luck!

 

[Dustin82]

Well I have CFRD and my levels were around 240 and they put me on insulin but they knew something was wrong with me I could not gain weight and my PFTs were goin down. But in ur case ur daugther is not losing weight or her PFTs are not goin down. But I would say talk to ur CF doctor and Iwould figure he would send u to a person that deals with CFRD. And dont be scared of insulin and stuff it is hard at first but u get used to it and it is easy. I am glad they discovered that i had CFRD because now I am gainin weight again and PFT are goin back up just wish they could have found it sooner. It is better to find out now and do something about it now then find out for a few months and lose weight and have ur PFT go down. Dustin 23 CFRD

 

[Dustin82]

Well I have CFRD and my levels were around 240 and they put me on insulin but they knew something was wrong with me I could not gain weight and my PFTs were goin down. But in ur case ur daugther is not losing weight or her PFTs are not goin down. But I would say talk to ur CF doctor and Iwould figure he would send u to a person that deals with CFRD. And dont be scared of insulin and stuff it is hard at first but u get used to it and it is easy. I am glad they discovered that i had CFRD because now I am gainin weight again and PFT are goin back up just wish they could have found it sooner. It is better to find out now and do something about it now then find out for a few months and lose weight and have ur PFT go down. Dustin 23 CFRD

 

[thelizardqueen]

The only thing I can add to this is that if her sugars are going from high to low - that is not good for both her diabetes and CF. I would say talk to your CF specialist, and see if they can recommend you to someone who specializes in CFRD.

 

[thelizardqueen]

The only thing I can add to this is that if her sugars are going from high to low - that is not good for both her diabetes and CF. I would say talk to your CF specialist, and see if they can recommend you to someone who specializes in CFRD.

 

[anonymous]

Thank you so much for your responses. Truly appreciate this so much. I asked about a referrel for a doctor who specialize in CFRD, the nearest one to us is about 5 hours away. So, I am thinking of trying to set something up this summer for us to go there (have to figure out how I can get the insurance to work and all). Between the stomach issues and this I feel so lost. Lung wise, well...we are okay, but...this is sort of strange, but I am grateful, but nervous at the same time. If she doesn't do her treatments and she does her pfts, they are always great, in the upper 80s low 90s. If she does her treatments, specially CPT, her numbers are in the 70s. So she likes to keep her numbers in the upper 80s to low 90s, so the CF Respiratory therapy doesn't fuss at her so treatments are not that great. Does that make sense?

Again, thank you so much for helping me.

Have a great day!

Christi (mom to three teenagers one w/cf)

 

[anonymous]

Thank you so much for your responses. Truly appreciate this so much. I asked about a referrel for a doctor who specialize in CFRD, the nearest one to us is about 5 hours away. So, I am thinking of trying to set something up this summer for us to go there (have to figure out how I can get the insurance to work and all). Between the stomach issues and this I feel so lost. Lung wise, well...we are okay, but...this is sort of strange, but I am grateful, but nervous at the same time. If she doesn't do her treatments and she does her pfts, they are always great, in the upper 80s low 90s. If she does her treatments, specially CPT, her numbers are in the 70s. So she likes to keep her numbers in the upper 80s to low 90s, so the CF Respiratory therapy doesn't fuss at her so treatments are not that great. Does that make sense?

Again, thank you so much for helping me.

Have a great day!

Christi (mom to three teenagers one w/cf)

 

[JazzysMom]

Sometimes with CPT or any airway clearance depending on the person you can have bronchial spasms. Mine come when I "force" the cough. I also had to lower the frequency on the vest from their normal recommendations. The original therapist in our office pushes for 5 coughs after each segment, but by the time I do the 3rd I can feel my airways spasing & closing up. The newer therapist dont push that (especially if you have my problem) since they feel the idea doesnt apply to everyone. So this might be why her PFTs are lower after treatment. If would be interesting to compare different time frames of pfts like before & after, but 15 minutes after, 30 minutes, 60 minutes etc to see how long before her airways calm down. I would bet that is the problem! Just my opinion based on experience!

 

[JazzysMom]

Sometimes with CPT or any airway clearance depending on the person you can have bronchial spasms. Mine come when I "force" the cough. I also had to lower the frequency on the vest from their normal recommendations. The original therapist in our office pushes for 5 coughs after each segment, but by the time I do the 3rd I can feel my airways spasing & closing up. The newer therapist dont push that (especially if you have my problem) since they feel the idea doesnt apply to everyone. So this might be why her PFTs are lower after treatment. If would be interesting to compare different time frames of pfts like before & after, but 15 minutes after, 30 minutes, 60 minutes etc to see how long before her airways calm down. I would bet that is the problem! Just my opinion based on experience!

 

[anonymous]

I had CFRD for two years when I had problems with my lung transplant. now that I have new lungs once again and since I exercise on a regular basis for a minimum of one hour, I no longer take insulin and my numbers are very steady. I had to slowly stop the insulin because they had me on so much in the hospital. I find if you have a meal a half hour before workout and push on the carbs she might gain weight. For me to see a difference in my numbers, I must exercise for forty five minutes of aerobics non stop. If I push about seventy to one hundred miligrams of carbs I tend to go to two hundred and that is when I must focus on the aerobics. AFter forty five minutes of intense traiing I go back to 124. It is true you can skip on the insulin if you exercise regularly. The only thing that this will apply to are people with mild to borderline diabetes. IT sounds like your daughter will do much better if she worked out. Getting a glucometer is free with most insurances and testing strips also.

Risa

 

[anonymous]

I had CFRD for two years when I had problems with my lung transplant. now that I have new lungs once again and since I exercise on a regular basis for a minimum of one hour, I no longer take insulin and my numbers are very steady. I had to slowly stop the insulin because they had me on so much in the hospital. I find if you have a meal a half hour before workout and push on the carbs she might gain weight. For me to see a difference in my numbers, I must exercise for forty five minutes of aerobics non stop. If I push about seventy to one hundred miligrams of carbs I tend to go to two hundred and that is when I must focus on the aerobics. AFter forty five minutes of intense traiing I go back to 124. It is true you can skip on the insulin if you exercise regularly. The only thing that this will apply to are people with mild to borderline diabetes. IT sounds like your daughter will do much better if she worked out. Getting a glucometer is free with most insurances and testing strips also.

Risa