cfrd/impaired glucose tolerance

[TonyaH]

Does anyone have information or experience with a glucose tolerence result only slightly above the 200 score that the CFF uses as a diagnosis for cfrd? Did your clinic recommend treatment, or were you able to just watch things?

 

[TonyaH]

Does anyone have information or experience with a glucose tolerence result only slightly above the 200 score that the CFF uses as a diagnosis for cfrd? Did your clinic recommend treatment, or were you able to just watch things?

 

[CheriD]

you can probably manage with diet and exercise if you are diligent about checking your sugars. sometimes abx or steroids can bump your numbers up. if your A1c, the long term blood sugar "score" was also high then may be able to use the oral meds they have now. my care team tried to have me on insulin during NTM treatment but i kept crashing because i was working out so much. finally gave up on the insulin and managed with diet and exercise. when off the drugs, everything went back to normal. dont fret just yet. get a meter and learn about what your body is doing. knowledge goes a long way in dealing with the "new" things of CF.

 

[CheriD]

you can probably manage with diet and exercise if you are diligent about checking your sugars. sometimes abx or steroids can bump your numbers up. if your A1c, the long term blood sugar "score" was also high then may be able to use the oral meds they have now. my care team tried to have me on insulin during NTM treatment but i kept crashing because i was working out so much. finally gave up on the insulin and managed with diet and exercise. when off the drugs, everything went back to normal. dont fret just yet. get a meter and learn about what your body is doing. knowledge goes a long way in dealing with the "new" things of CF.

 

[dbsholes]

I have learned much about CFRD since I was diagnosed, at age 37, in 2004. My endocrinologist is adamant that ALL people with cf should take small levels of insulin for a wide variety of reasons - although I certainly understand that if someone had suggested to me that in addition to the regular treatment regimen for cf I also had to stick myself with a needle once a day I would have been less than open to the idea. In hindsight I can see how beneficial it would have been.

First of all I would say that if you have elevated blood sugar levels at this point you are very likely on your way to becoming CFRD. It's not your fault, has nothing to do with your diet or exercise, and you can't really prevent it.

Like CheriD above, when I first began using insulin I my blood sugar crashed all the time. And yes, it certainly is possible to control blood sugar through diet and exercise - this is what most doctors want their type2-diabetic patients to do. For me, it took some time to figure out the right kind of insulin at the right dose for my particular situation. What was most interesting to me is that the insulin made me enzyme-sufficient for the first time in my life and I gained weight. Additionally, my lung functions improved - without ANY other changes to my exercise or treatment regimen.

My recommendation for you is that you educate yourself as much as possible. CFRD is like a hybrid of Type 1 and type 2 diabetes - it doesn't fit either category exactly. At this point I consider myself more Type 1 - insulin dependent - because my blood sugars will easily go into the 200-300s without insulin. I don't think exercise can control that type of elevation. I use a pump for my short-acting (bolus) insulin (that which I use to cover what I eat) and I use an injection pen for my long-acting (basal) insulin which is supposed to help equalize the highs and lows.

I agree that you should find out what your A1C is - the three month average of your blood sugars. Non-diabetics will always be lower than 6. I was most recently 8.1 which indicates that I need to do a better job of managing my blood sugars. I've been as high as 10 and as low as 5.2 in the last seven years.

If you feel like talking and at least learning what my experience has been feel free to call me at 303-882-6070. All in all CFRD is just another aspect of cf and needn't be treated like a separate disease - just cause for another line of treatment.

Best,
David Sholes
Bennington Vermont

44 DDF508; diagnosed at 8mos; CFRD since '04; 83% most recent PFTs.

 

[dbsholes]

I have learned much about CFRD since I was diagnosed, at age 37, in 2004. My endocrinologist is adamant that ALL people with cf should take small levels of insulin for a wide variety of reasons - although I certainly understand that if someone had suggested to me that in addition to the regular treatment regimen for cf I also had to stick myself with a needle once a day I would have been less than open to the idea. In hindsight I can see how beneficial it would have been.

First of all I would say that if you have elevated blood sugar levels at this point you are very likely on your way to becoming CFRD. It's not your fault, has nothing to do with your diet or exercise, and you can't really prevent it.

Like CheriD above, when I first began using insulin I my blood sugar crashed all the time. And yes, it certainly is possible to control blood sugar through diet and exercise - this is what most doctors want their type2-diabetic patients to do. For me, it took some time to figure out the right kind of insulin at the right dose for my particular situation. What was most interesting to me is that the insulin made me enzyme-sufficient for the first time in my life and I gained weight. Additionally, my lung functions improved - without ANY other changes to my exercise or treatment regimen.

My recommendation for you is that you educate yourself as much as possible. CFRD is like a hybrid of Type 1 and type 2 diabetes - it doesn't fit either category exactly. At this point I consider myself more Type 1 - insulin dependent - because my blood sugars will easily go into the 200-300s without insulin. I don't think exercise can control that type of elevation. I use a pump for my short-acting (bolus) insulin (that which I use to cover what I eat) and I use an injection pen for my long-acting (basal) insulin which is supposed to help equalize the highs and lows.

I agree that you should find out what your A1C is - the three month average of your blood sugars. Non-diabetics will always be lower than 6. I was most recently 8.1 which indicates that I need to do a better job of managing my blood sugars. I've been as high as 10 and as low as 5.2 in the last seven years.

If you feel like talking and at least learning what my experience has been feel free to call me at 303-882-6070. All in all CFRD is just another aspect of cf and needn't be treated like a separate disease - just cause for another line of treatment.

Best,
David Sholes
Bennington Vermont

44 DDF508; diagnosed at 8mos; CFRD since '04; 83% most recent PFTs.

 

[TonyaH]

Thank you both very much. This question was asked on behalf of my son who will be 14 next week. He had his first GTT on Wednesday and his doctor called me yesterday to let me know his 2 hour was 253. We are waiting for an appointment with endocrinology. His fasting level was just fine. (110)
I have to agree that I don't think daily insulin would go over very well with Andrew! Of course, we would do what we have to do. But his test doesn't seem so high that that would be necessary. Also, it doesn't look like he has a problem with lows...just highs. I have SO much to learn! I'll probably be asking more questions of you both in the coming weeks.

 

[TonyaH]

Thank you both very much. This question was asked on behalf of my son who will be 14 next week. He had his first GTT on Wednesday and his doctor called me yesterday to let me know his 2 hour was 253. We are waiting for an appointment with endocrinology. His fasting level was just fine. (110)
I have to agree that I don't think daily insulin would go over very well with Andrew! Of course, we would do what we have to do. But his test doesn't seem so high that that would be necessary. Also, it doesn't look like he has a problem with lows...just highs. I have SO much to learn! I'll probably be asking more questions of you both in the coming weeks.

 

[carmick]

I think he would be fine watching things. For the past year or so I have been checking my blood sugar after meals a few times per week but not receiving treatment. My OGTT was high (241), but my sugars after meals are relatively normal. They go up if I am sick, but otherwise they haven't been much of an issue. I follow up with the diabetes clinic every three months because they figure that if I am pre-diabetic now, it's only a matter of time. This way, if I start having higher sugars regularly, they can start me on treatment right away.

 

[carmick]

I think he would be fine watching things. For the past year or so I have been checking my blood sugar after meals a few times per week but not receiving treatment. My OGTT was high (241), but my sugars after meals are relatively normal. They go up if I am sick, but otherwise they haven't been much of an issue. I follow up with the diabetes clinic every three months because they figure that if I am pre-diabetic now, it's only a matter of time. This way, if I start having higher sugars regularly, they can start me on treatment right away.

 

[dbsholes]

I don't want to throw a wet blanket, but I think a 253 two-hour result puts him squarely in the CFRD range and probably warrants insulin therapy. That's a full 100+ points higher than a non-diabetic.

Should be very interesting to see what the Endocrinologist has to say. One important thing I learned years ago is NEVER to allow doctors to say "well, for someone with cf this is okay". NO. This type of statement is based on a belief that cf will kill us before anything else does, which is no longer the case. Look at the number of folks on this site who are in their 50s, 60s, 70s, and even a few in their 80s. CF is no longer an automatic death sentence so the best thing you can do for your son is insist that his "numbers" be compared against a non-cf population. People with CF need to be concerned about all the other health problems that effect the normal population. And I'm adamant that a 253 2-hour GTT is too high.

One thing to know about CFRD is that we are not insulin-depleted. Our bodies DO produce insulin - in the pancreas (the same place that our digestive enzymes are supposed to come from) - but the RESPONSE to elevated blood glucose is sluggish. It's like our insulin-secreting glands are distracted and don't notice that our blood sugar has gone up and then go "oh my gosh! lets release some insulin!" So yes, without insulin he will probably come down to normal range eventually, but in the meantime having blood sugars in the high 100 and 200 range is causing organ damage that won't show up for many years. Renal failure and blindness are the two most significant potential problems of long-term high blood glucose levels. I came down with CFRD at age 37; your son is fourteen, which means there is a much longer period for organ damage to occur.

Again, the most important thing you can find out is what is your son's A1C. A simple blood test that can be done in the office with results in less than ten minutes. This tells all. Higher than 6: diabetic. Lower than 6: non-diabetic.

David Sholes
Bennington Vermont

 

[dbsholes]

I don't want to throw a wet blanket, but I think a 253 two-hour result puts him squarely in the CFRD range and probably warrants insulin therapy. That's a full 100+ points higher than a non-diabetic.

Should be very interesting to see what the Endocrinologist has to say. One important thing I learned years ago is NEVER to allow doctors to say "well, for someone with cf this is okay". NO. This type of statement is based on a belief that cf will kill us before anything else does, which is no longer the case. Look at the number of folks on this site who are in their 50s, 60s, 70s, and even a few in their 80s. CF is no longer an automatic death sentence so the best thing you can do for your son is insist that his "numbers" be compared against a non-cf population. People with CF need to be concerned about all the other health problems that effect the normal population. And I'm adamant that a 253 2-hour GTT is too high.

One thing to know about CFRD is that we are not insulin-depleted. Our bodies DO produce insulin - in the pancreas (the same place that our digestive enzymes are supposed to come from) - but the RESPONSE to elevated blood glucose is sluggish. It's like our insulin-secreting glands are distracted and don't notice that our blood sugar has gone up and then go "oh my gosh! lets release some insulin!" So yes, without insulin he will probably come down to normal range eventually, but in the meantime having blood sugars in the high 100 and 200 range is causing organ damage that won't show up for many years. Renal failure and blindness are the two most significant potential problems of long-term high blood glucose levels. I came down with CFRD at age 37; your son is fourteen, which means there is a much longer period for organ damage to occur.

Again, the most important thing you can find out is what is your son's A1C. A simple blood test that can be done in the office with results in less than ten minutes. This tells all. Higher than 6: diabetic. Lower than 6: non-diabetic.

David Sholes
Bennington Vermont

 

[carmick]

Just because you have a high GTT does not mean that you need insulin treatment. If your blood sugar does not spike after meals then you would be doing yourself harm by opening yourself up to hypoglycemia if you took insulin. Even the A1C won't tell too much because it is artificially low in CF patients. They should get it done, but it's only an indication of what's going on in day to day life, just like the GTT.

Based on my experience, the main thing for now will probably be monitoring his blood sugar after meals. Fasting blood sugar doesn't tell much either since, like David said, we do produce some insulin and it will componsate overnight. You really need to check after meals and come up with a treatment plan based on those numbers. Make sure that you have an endocrinologist has experience with CF patients. Some treatments are not appropriate for CFers. If his sugars are high, your son will probably be put on insulin, but there are a couple of pills that may be options as well.

 

[carmick]

Just because you have a high GTT does not mean that you need insulin treatment. If your blood sugar does not spike after meals then you would be doing yourself harm by opening yourself up to hypoglycemia if you took insulin. Even the A1C won't tell too much because it is artificially low in CF patients. They should get it done, but it's only an indication of what's going on in day to day life, just like the GTT.

Based on my experience, the main thing for now will probably be monitoring his blood sugar after meals. Fasting blood sugar doesn't tell much either since, like David said, we do produce some insulin and it will componsate overnight. You really need to check after meals and come up with a treatment plan based on those numbers. Make sure that you have an endocrinologist has experience with CF patients. Some treatments are not appropriate for CFers. If his sugars are high, your son will probably be put on insulin, but there are a couple of pills that may be options as well.

 

[TonyaH]

Thanks everyone,
You have given me alot to ask our doctors about. Carmick,, I do expect to be told we have to monitor things. That won't come as a surprise. I wish the hospital would call me back with an appointment date. I just really want to know what the future holds.
I want to thank you for giving me different perspectives. I love the advice not to let CF overshadow the importance of controlling blood sugar issues. I have to remind myself make this a priority always and not let it slip through the cracks, especially during exacerbations. We are seen at a great hospital (UNC) and I know the endocrinologists will work well with our pulmonary team.
I guess the real bummer I'm feeling for my son is that he is kind of young to be dealing with this. He also has ABPA and chronically cultures pseudomonas and mycobacterium abcessus, so CFRD would just be one more strike against him as he matures. But, we will take things one day at a time.

 

[TonyaH]

Thanks everyone,
You have given me alot to ask our doctors about. Carmick,, I do expect to be told we have to monitor things. That won't come as a surprise. I wish the hospital would call me back with an appointment date. I just really want to know what the future holds.
I want to thank you for giving me different perspectives. I love the advice not to let CF overshadow the importance of controlling blood sugar issues. I have to remind myself make this a priority always and not let it slip through the cracks, especially during exacerbations. We are seen at a great hospital (UNC) and I know the endocrinologists will work well with our pulmonary team.
I guess the real bummer I'm feeling for my son is that he is kind of young to be dealing with this. He also has ABPA and chronically cultures pseudomonas and mycobacterium abcessus, so CFRD would just be one more strike against him as he matures. But, we will take things one day at a time.

 

[dbsholes]

Caryn, I have never heard or been told that the A1C is artificially low in the cf population. I'm looking around the internet and have gone through my CFRD book, but I'd be interested to know your source. I Learn new stuff every day even though I think I know it all. I just heard about cf-related liver disease for the first time today.

I still believe an A1C will provide Tonya a good snapshot of what is going on with Andrew. If it's elevated then she can be pretty certain he's either diabetic, or pre-diabetic and moving in that direction.

FYI - My endocrinologist - the aforementioned individual who believes that ALL cf patients should be on low-dose insulin therapy regardless of their diabetes status - also believes that insulin treatment can keep pre-diabetics from going over the edge. This is something that both you and Tonya might want to talk about with your respective endocrinologists.

Tonya - I've often thought that having a child with cf would be more difficult than actually having it myself. I have a healthy eleven year old daughter and her troubles bother me FAR more than my own. I have had long conversations about this issue with both of my parents and I have easily determined that my having cf was definitely harder on THEM than it was on me. So keep that in mind. Humans (and especially children) are very good at adjusting to their own situations and I'm sure Andrew is no exception. Parents on the other hand have a very difficult time watching their kids "suffer". I understand both perspectives. Yes, he will probably feel sorry for himself from time to time and get angry - especially when he's sick and during the tumultuous teenage years. But if he's like me he'll also learn to use it to his advantage. I recall faking a stomach ache when I was fourteen -in January 1981 - so I could stay home and watch Reagan's inauguration, as just one example. So try not to worry about him too much. Yeah, it does suck, but as I've told many people, cf is better than a lot of diseases where you really have NO control over what it does, such as MS, MD, ALS, and most cancers. We really do have a lot of control over the progression of cf in our bodies, and one of your most important jobs as a cf parent is to help Andrew grow up to fully understand this.

If you haven't already, you might consider having Andrew meet some healthy adults with cf. When I was his age the oldest person with cf I ever met was twenty-eight, and he wasn't in great shape. Now there are many many older people doing quite well. It might be beneficial for him to meet some. I talk to a lot of pediatric patients and their parents through my clinic in Albany.

David Sholes
44 DDF508; CFRD; AND ABPA too!

 

[dbsholes]

Caryn, I have never heard or been told that the A1C is artificially low in the cf population. I'm looking around the internet and have gone through my CFRD book, but I'd be interested to know your source. I Learn new stuff every day even though I think I know it all. I just heard about cf-related liver disease for the first time today.

I still believe an A1C will provide Tonya a good snapshot of what is going on with Andrew. If it's elevated then she can be pretty certain he's either diabetic, or pre-diabetic and moving in that direction.

FYI - My endocrinologist - the aforementioned individual who believes that ALL cf patients should be on low-dose insulin therapy regardless of their diabetes status - also believes that insulin treatment can keep pre-diabetics from going over the edge. This is something that both you and Tonya might want to talk about with your respective endocrinologists.

Tonya - I've often thought that having a child with cf would be more difficult than actually having it myself. I have a healthy eleven year old daughter and her troubles bother me FAR more than my own. I have had long conversations about this issue with both of my parents and I have easily determined that my having cf was definitely harder on THEM than it was on me. So keep that in mind. Humans (and especially children) are very good at adjusting to their own situations and I'm sure Andrew is no exception. Parents on the other hand have a very difficult time watching their kids "suffer". I understand both perspectives. Yes, he will probably feel sorry for himself from time to time and get angry - especially when he's sick and during the tumultuous teenage years. But if he's like me he'll also learn to use it to his advantage. I recall faking a stomach ache when I was fourteen -in January 1981 - so I could stay home and watch Reagan's inauguration, as just one example. So try not to worry about him too much. Yeah, it does suck, but as I've told many people, cf is better than a lot of diseases where you really have NO control over what it does, such as MS, MD, ALS, and most cancers. We really do have a lot of control over the progression of cf in our bodies, and one of your most important jobs as a cf parent is to help Andrew grow up to fully understand this.

If you haven't already, you might consider having Andrew meet some healthy adults with cf. When I was his age the oldest person with cf I ever met was twenty-eight, and he wasn't in great shape. Now there are many many older people doing quite well. It might be beneficial for him to meet some. I talk to a lot of pediatric patients and their parents through my clinic in Albany.

David Sholes
44 DDF508; CFRD; AND ABPA too!

 

[TonyaH]

Okay, so here's the scoop after today's appointment....

We saw the endocrinologist who works with our CF team. Loved her! Andrew and I both walked out of the hospital feeling like this was the most natural thing in the world.

He is to test morning and night for three months. Within these three months she is going to get updates on his numbers and then decide on a need for insulin.

I did ask her about A1C and, like the research I did online, she said that A1C is a good number to have because it can give indication to increased glucose impairment over time, but that it is not a good diagnostic tool in CFRD because of the way CFers red blood cells constantly turn over, so A1C usually gives a false low.

I was quite impressed by the way the hospital taught Andrew to test, and even had him test MY sugar level so he could practice and allow me to feel what it was like. David, I appreciate your last comment about all of this being harder on parents than the patients. I've never been on your side, but I can tell you from my side, I try really hard not to coddle my children. I'm the parent who would hold a baby kicking and screaming about a shot to just get it done because it is what was best for them. We do what we have to do, you know? But I'll honestly say the daily testing thing was stressing me out a bit for Andrew's sake. Finger pricks can hurt more than shots. But after today's appointment I am so relieved by how manageable this all is, and so thankful (and proud<img src="i/expressions/face-icon-small-smile.gif" border="0"> to see how 'okay' he is with everything. So far so good!

But at the end of the day, the parent is just the parent. Yes, we worry and take our role as decision makers and rule enforcers seriously, but it's because we know the load all of you carry. If you can do all you do to keep your bodies at their best, the least we can do is worry a little! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks everyone for your insight. It really helped me prepare for today's appointment!

 

[TonyaH]

Okay, so here's the scoop after today's appointment....

We saw the endocrinologist who works with our CF team. Loved her! Andrew and I both walked out of the hospital feeling like this was the most natural thing in the world.

He is to test morning and night for three months. Within these three months she is going to get updates on his numbers and then decide on a need for insulin.

I did ask her about A1C and, like the research I did online, she said that A1C is a good number to have because it can give indication to increased glucose impairment over time, but that it is not a good diagnostic tool in CFRD because of the way CFers red blood cells constantly turn over, so A1C usually gives a false low.

I was quite impressed by the way the hospital taught Andrew to test, and even had him test MY sugar level so he could practice and allow me to feel what it was like. David, I appreciate your last comment about all of this being harder on parents than the patients. I've never been on your side, but I can tell you from my side, I try really hard not to coddle my children. I'm the parent who would hold a baby kicking and screaming about a shot to just get it done because it is what was best for them. We do what we have to do, you know? But I'll honestly say the daily testing thing was stressing me out a bit for Andrew's sake. Finger pricks can hurt more than shots. But after today's appointment I am so relieved by how manageable this all is, and so thankful (and proud<img src="i/expressions/face-icon-small-smile.gif" border="0"> to see how 'okay' he is with everything. So far so good!

But at the end of the day, the parent is just the parent. Yes, we worry and take our role as decision makers and rule enforcers seriously, but it's because we know the load all of you carry. If you can do all you do to keep your bodies at their best, the least we can do is worry a little! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks everyone for your insight. It really helped me prepare for today's appointment!