Extremely Unhappy with CFRD Care

[mmmtat]

Hey All,
I'll try to keep this history as brief as possible: I was diagnosed with CFRD in September, with a week long continuous meter revealing highs. I was undiagnosed for at least 5 years because my A1C is normal (it has been 6.0, 5.5 and 5.3 in the past year), and my OGTT comes back normal.
I was started on novolog juniors pen (so I can use the half units), with a carb ratio of 1:50 with all meals (4-6 meals a day).
I noticed my numbers getting significantly higer from Janury-March, so I went into see my Endo (Recommended by my CF doc as the best endo in the area (Phoenix - Big city) for CFRD).
My Endo said I was doing great. I asked about concerns of hitting 250+ with each meal? No concern, "hitting 200 once or twice a week is to be expected" ... I pointed out it was happening with every meal....they blew past this.
I asked about possibly adding levemir/lantus. No, my nighttime numbers stay normal, so that's not needed.
I asked about waiting more than 15 minutes inbetween insulin injection and eating (I currently wait 15 minutes)...they said more than 15 minutes would be dangerous.
I asked aboutlimiting carbs...No, no, no, CF comes first (I really don't want to limit carbs, but I did geniuinely ask because I'd give it a go)
I was pretty much disgruntled when I left. I am concerned, but also don't know where I would get a second opinion, since this doc is apparently the go-to for CFRD.
I have been asking around diabetes forums, and they have suggested both a morning does of levemir to prevent my meal highs, and even out my numbers (I go low A LOT, even before adding novolog). Or they have suggested getting a pump so that I have a more steady stream of smaller doses of insulin, in order to prevent both my highs and lows, and keep me on an even keel.
Any thoughts whatsoever? I don't know if I should ask about a pump, seeing as they though all my other ideas were bad. They didn't even want to see me again for four months. I'm pretty frustrated, I feel like ***** all day long. If I don't eat breakfast, I do alright until around 2pm when I get hungry...but if I eat breakfast (which is healthier and I would like to do)...it sets me into this terrible cycle for the whole day, and I feel like crap.
I don't want a pump, or just another injection for that matter (referring to the possibility of adding levemir) but...if it would make me feel better, I would do it.
I'm very active (normally, not lately), and not being active is putting a strain on my relationship with my husband, and my overall mood and self happiness feelings. My lung function is 90-100%, so I really feel it's the food/blood glucose issues that are getting me down, and I feel like my doctors aren't hearing me. I asked for a second opinion at CF clinic and they said "We trust your endo".
Also, as a sidenote, my dietician said that any BG over 144 was feeding my pseudomonas and would lead to more infections and shorten my life...I would really like to keep my BG under this, to prevent such complications. But my Endo says anything under 200 is alright.

 

[mmmtat]

Hey All,
I'll try to keep this history as brief as possible: I was diagnosed with CFRD in September, with a week long continuous meter revealing highs. I was undiagnosed for at least 5 years because my A1C is normal (it has been 6.0, 5.5 and 5.3 in the past year), and my OGTT comes back normal.
I was started on novolog juniors pen (so I can use the half units), with a carb ratio of 1:50 with all meals (4-6 meals a day).
I noticed my numbers getting significantly higer from Janury-March, so I went into see my Endo (Recommended by my CF doc as the best endo in the area (Phoenix - Big city) for CFRD).
My Endo said I was doing great. I asked about concerns of hitting 250+ with each meal? No concern, "hitting 200 once or twice a week is to be expected" ... I pointed out it was happening with every meal....they blew past this.
I asked about possibly adding levemir/lantus. No, my nighttime numbers stay normal, so that's not needed.
I asked about waiting more than 15 minutes inbetween insulin injection and eating (I currently wait 15 minutes)...they said more than 15 minutes would be dangerous.
I asked aboutlimiting carbs...No, no, no, CF comes first (I really don't want to limit carbs, but I did geniuinely ask because I'd give it a go)
I was pretty much disgruntled when I left. I am concerned, but also don't know where I would get a second opinion, since this doc is apparently the go-to for CFRD.
I have been asking around diabetes forums, and they have suggested both a morning does of levemir to prevent my meal highs, and even out my numbers (I go low A LOT, even before adding novolog). Or they have suggested getting a pump so that I have a more steady stream of smaller doses of insulin, in order to prevent both my highs and lows, and keep me on an even keel.
Any thoughts whatsoever? I don't know if I should ask about a pump, seeing as they though all my other ideas were bad. They didn't even want to see me again for four months. I'm pretty frustrated, I feel like ***** all day long. If I don't eat breakfast, I do alright until around 2pm when I get hungry...but if I eat breakfast (which is healthier and I would like to do)...it sets me into this terrible cycle for the whole day, and I feel like crap.
I don't want a pump, or just another injection for that matter (referring to the possibility of adding levemir) but...if it would make me feel better, I would do it.
I'm very active (normally, not lately), and not being active is putting a strain on my relationship with my husband, and my overall mood and self happiness feelings. My lung function is 90-100%, so I really feel it's the food/blood glucose issues that are getting me down, and I feel like my doctors aren't hearing me. I asked for a second opinion at CF clinic and they said "We trust your endo".
Also, as a sidenote, my dietician said that any BG over 144 was feeding my pseudomonas and would lead to more infections and shorten my life...I would really like to keep my BG under this, to prevent such complications. But my Endo says anything under 200 is alright.

 

[sheanna]

Hi Maggie,
I just wanted to reply because I completely understand how you feel! I've had several different CFRD doctors since I've moved around a bit, and there is a wide range. Strangely, my most lenient one was the one who watched my BG when I was in the hospital, and she thought all was peachy keen- even the 200's.
However, I would suggest not just going to the 'CFRD' doctor- any good endocrinologist (or clinician) should be able to handle CFRD. We may be a little different than regular diabetics, but diabetes should be treated on a case-by-case basis anyway. Just shop around!
To me, a good clinician is available, accessible, and also knows about your needs as an individual. I've also found that folks with diabetes themselves (such as my current clinician) will better understand your frustrations.
Here's what you need to know: Unlike Type I diabetes, ours comes from pancreatic insufficiency, meaning that depending on your level of pancreatic damage, it still may function a little. It sounds like you are like me, in that your pancreas produces enough basal insulin to 'reset' your levels overnight, and we're really lucky for that! However, when it comes to eating big meals, it just can't handle it, and that's where insulin comes in.
I found that adjusting to CFRD took almost 3 years for me, as it took a long time to develop completely. I went from just lantus, to very small amounts of novalog, and I now use a pump at about 1:8 ratio. I think the pump was the best thing I ever did, especially when you are only doing a few units of insulin at a time.
All that said, I would recommend EXERCISE. I know it's hard to get out there initially because high BG's just drain you (all I want to do is sleep), but once you do, you'll start to feel better in 1-2 weeks. Because of my diabetes, I started running/going to the gym 3-4 times a week, so I see it as a blessing in disguise.
Try your best to be active, and find something fun you like to do! I promise it will pay off very soon.

Oh yeah...and remember you're your best expert- do what is right for you and screw them all <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have a 90-pound twenty-something nutritionist who wants me to gain weight, a urologist who wants me to lay off protein, an endo who would like me to eat mainly protein. If it was up to them I'd sit around and drink water all day. My solution: a mainly vegetarian, healthy diet with few processed carbs. Works for me!

 

[sheanna]

Hi Maggie,
I just wanted to reply because I completely understand how you feel! I've had several different CFRD doctors since I've moved around a bit, and there is a wide range. Strangely, my most lenient one was the one who watched my BG when I was in the hospital, and she thought all was peachy keen- even the 200's.
However, I would suggest not just going to the 'CFRD' doctor- any good endocrinologist (or clinician) should be able to handle CFRD. We may be a little different than regular diabetics, but diabetes should be treated on a case-by-case basis anyway. Just shop around!
To me, a good clinician is available, accessible, and also knows about your needs as an individual. I've also found that folks with diabetes themselves (such as my current clinician) will better understand your frustrations.
Here's what you need to know: Unlike Type I diabetes, ours comes from pancreatic insufficiency, meaning that depending on your level of pancreatic damage, it still may function a little. It sounds like you are like me, in that your pancreas produces enough basal insulin to 'reset' your levels overnight, and we're really lucky for that! However, when it comes to eating big meals, it just can't handle it, and that's where insulin comes in.
I found that adjusting to CFRD took almost 3 years for me, as it took a long time to develop completely. I went from just lantus, to very small amounts of novalog, and I now use a pump at about 1:8 ratio. I think the pump was the best thing I ever did, especially when you are only doing a few units of insulin at a time.
All that said, I would recommend EXERCISE. I know it's hard to get out there initially because high BG's just drain you (all I want to do is sleep), but once you do, you'll start to feel better in 1-2 weeks. Because of my diabetes, I started running/going to the gym 3-4 times a week, so I see it as a blessing in disguise.
Try your best to be active, and find something fun you like to do! I promise it will pay off very soon.

Oh yeah...and remember you're your best expert- do what is right for you and screw them all <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have a 90-pound twenty-something nutritionist who wants me to gain weight, a urologist who wants me to lay off protein, an endo who would like me to eat mainly protein. If it was up to them I'd sit around and drink water all day. My solution: a mainly vegetarian, healthy diet with few processed carbs. Works for me!

 

[musclemania70]

I was put on Levemir from the very beginning with my Novalog. I have rarely been over 200. You should try a long-acting insulin. I take mine before bed.

 

[musclemania70]

I was put on Levemir from the very beginning with my Novalog. I have rarely been over 200. You should try a long-acting insulin. I take mine before bed.

 

[mmmtat]

I did ask about long acting, but they said I don't need it...I am going to have to get a second opinion

 

[mmmtat]

I did ask about long acting, but they said I don't need it...I am going to have to get a second opinion

 

[mmmtat]

Shea -

Thanks so much for your prospective. I've spent the last month trying to talk to as many people as I can, and I think I finally feel like I know enough about the disease and possible treatments to know that I need to talk to a different doctor.
I was exercising quite regularly for about two years, but fell off the wagon a few months ago. I really feel the difference.
I appreciate your input, it gives me hope that with a more flexible doctor who is willing to try different options, I might actually get this controlled and feel better.

 

[mmmtat]

Shea -

Thanks so much for your prospective. I've spent the last month trying to talk to as many people as I can, and I think I finally feel like I know enough about the disease and possible treatments to know that I need to talk to a different doctor.
I was exercising quite regularly for about two years, but fell off the wagon a few months ago. I really feel the difference.
I appreciate your input, it gives me hope that with a more flexible doctor who is willing to try different options, I might actually get this controlled and feel better.

 

[franzie2984]

Hi,

Sorry to hear about your troubles: my diabetes doctor (a new one) recently told me that with CF sometimes it is best to take your insulin after you eat. My blood sugars tend to rise after I eat, like yours... To prevent this I guess it may work better if you eat first and then take insulin since our pancreas is so sluggish it kicks in a bit sometimes but too late (this way the insulin meets the carbs at the correct time). I am sure this isnt the best for everyone, but it helped me. Not sure if the rationale makes sense (It didnt reallly to me..lol) but maybe you can try it and see if it helps? I also have a half unit dosing pen which can help with those who take small amounts of insulin to take the correct dose.
I also notice a difference with some carb restriction. The CF doctors are always telling us not to restrict anything, but if we are eating carbs that we aren't even processing, eating less and having control over them has to be better right? If you dont' need to gain a ton of weight I can't see the damage in tweaking your diet in a way that is still healthy and works for you but helps you mangage diabetes better?
I think they are hesitant to give you long term because you said you go low a lot already. Long term insulin typically increases incidence of hypoglycemia. However, I am not sure about whether it would be a good idea or not. Definitely you need more information!

 

[franzie2984]

Hi,

Sorry to hear about your troubles: my diabetes doctor (a new one) recently told me that with CF sometimes it is best to take your insulin after you eat. My blood sugars tend to rise after I eat, like yours... To prevent this I guess it may work better if you eat first and then take insulin since our pancreas is so sluggish it kicks in a bit sometimes but too late (this way the insulin meets the carbs at the correct time). I am sure this isnt the best for everyone, but it helped me. Not sure if the rationale makes sense (It didnt reallly to me..lol) but maybe you can try it and see if it helps? I also have a half unit dosing pen which can help with those who take small amounts of insulin to take the correct dose.
I also notice a difference with some carb restriction. The CF doctors are always telling us not to restrict anything, but if we are eating carbs that we aren't even processing, eating less and having control over them has to be better right? If you dont' need to gain a ton of weight I can't see the damage in tweaking your diet in a way that is still healthy and works for you but helps you mangage diabetes better?
I think they are hesitant to give you long term because you said you go low a lot already. Long term insulin typically increases incidence of hypoglycemia. However, I am not sure about whether it would be a good idea or not. Definitely you need more information!

 

[franzie2984]

Just thought about it and if your blood sugars are normal except for after you eat, perhaps your carb/insulin ratio is a bit off. Perhaps you just need slightly more insulin with meals?

 

[franzie2984]

Just thought about it and if your blood sugars are normal except for after you eat, perhaps your carb/insulin ratio is a bit off. Perhaps you just need slightly more insulin with meals?

 

[rockinINgc]

I know where you're coming from on your CFRD issues. It is always the best idea to have multiple opinions. I personally got lucky having my Pulmonary/CF doctor, a dietitian, and an endo all trying to figure things out during a 2 week hospital stay. With sugars of 200+ it is likely you should have a long acting like lantis. I am normally under control, the one day I missed my lantis, I was about 250 all day even with humalog. I was told by my dietitian that being that high will obviously effect weight gain, and can even cause infections to grow better.

 

[rockinINgc]

I know where you're coming from on your CFRD issues. It is always the best idea to have multiple opinions. I personally got lucky having my Pulmonary/CF doctor, a dietitian, and an endo all trying to figure things out during a 2 week hospital stay. With sugars of 200+ it is likely you should have a long acting like lantis. I am normally under control, the one day I missed my lantis, I was about 250 all day even with humalog. I was told by my dietitian that being that high will obviously effect weight gain, and can even cause infections to grow better.

 

[mwinston87]

adjust your carb counting ratio! my endo told me that you sometimes will just need to adjust that number because your body begins to react differently to the insulin the longer your on it.

 

[mwinston87]

adjust your carb counting ratio! my endo told me that you sometimes will just need to adjust that number because your body begins to react differently to the insulin the longer your on it.