CF related diabetes

[julie61554]

Hi all....I was diagnosed with CFRD last September. When I initially saw my endocronologist for the 1st time, my a1c was 5.8. But I didn't see her until close to 2 months after diagnosis. I had already changed my diet somewhat by that time. And I do realize that a1c in cf is artificially low most of the time. Anyway, I went back for my 2nd visit in February my a1c came down just a tad....5.7. She suggested that I start using the Freestyle Libre Continuous monitoring system so I could start doing fewer finger sticks. So I started using it. I was so shocked to see how high I would peak. I was peaking everyday for breakfast usually to 180 or so. I have highs also during supper although usually not quite as high. There were a few times I saw over 200's. But the odd thing is...MOST of the time I am back to normal within the 2 hour mark. So that is why I didn't know how bad I was actually doing.

Since then, I have spoke to the diabetes educator at the office. They looked at the information from the Libre and decided to just start me on 1 unit of insulin for 30 carbs OVER the first 30 I eat and only at breakfast time since that is when I had the most trouble. The problem is....I rarely eat 30 grams at a meal except breakfast and that is only on the days I strength train. I don't want to use the insulin at breakfast on those days because when I exercise (which is usually 1 1/2 hours) I sometimes drop and usually sip on gatorade throughout my workout. I get an average of 130 carbs a day and that is on the high side.

I am on the transplant list (although on hold at the moment) and they want my weight at 120. This month I have lost about 4 lbs and I think it is because I have cut back so much on carbs. They think I am doing well and don't need insulin with the exception listed above and at that it is only because of my weight. She said her only concern is me not being able to gain the weight needed. I am thinking I do need some insulin. I don't like seeing these spikes and it is stressing me that I can't eat. An example, the other night I had a serving of carrots and some dip....a total of 10 carbs. I was 97 I got all the way to 155 and it didn't come down until going on the 3 hour mark. This afternoon, I had an atkins protein bar with 3 net carbs....I went from 85 to 127. Now I know in that instance it isn't high, but for 3 grams of carbs to effect me like that I think is bad.

Is there anyone here with CFRD that is willing to share how they are keeping their numbers under control? Should I be concerned? or are these numbers really not high enough to be concerning? Like I said it is the 1 hour mark or so that I am peaking so high but at two hours.....MOST of the time I am back under 140....usually high 120's to mid 130's. However, to gain weight I really think I need more carbs and I know I can't eat more without going higher. I have tried eating more fats and proteins but I'm just not able to gain anything.

Any input or suggestions anyone may have are very welcome!

Thanks!

Julie

 

[kenna2]

Your numbers are not that high at all. The thing to keep in mind is that your CF is also playing a huge factor in your high readings. Your body is fighting an infection and blood sugar numbers usually run higher when an infection is brewing. Another thing is when you're running high during the day, if it's a normal trend it could just be how your body works. For me around noon my sugars are always in the 200s, no matter what I do. For your strength training days, I'd skip insulin if I knew I would start running low. I was told by my diabetes doc that a low blood sugar is much more damaging than a high and you can always do more insulin to bring a high down.

 

[mom2two]

I'd like to reiterate what Kenna2 said; your numbers are not that high at all. Eat the food you need and insulin for it, conservatively on weight training days. And 200 is not that high. I will go up to 450 if I dont keep a careful eye on things. (darn that prednisone!)

 

[julie61554]

Thank you both for your responses. I guess my numbers aren't bad...I just know anything over 140 is not normal so I was using that as my guide. I just worry about doing damage to organs, etc. I thought anything over 140 did that. I am still fairly new to all of this so I guess it will take me some getting use to. Thanks again for your input! It's much appreciated!

Julie

 

[stylecomfy]

Hi Julie, my CFRD manifests very similar to yours (my peaks are maybe a little higher but they come down just as quick, and my hba1c is always normal).

I have learnt that CFRD is not the same in all patients with CF. In the beginning stages it can be this frustrating yo-yo effect of quick highs and lows, and as it progresses it becomes more like "typical diabetes" where the sugars stay high. Prednisone (used post transplant) of course makes the glucose levels much higher and requires serious treatment adherence.

However just because it is mild, it doesn't mean it should be taken lightly or that treatment won't benefit you. We don't have the same risk as people with chronic highs, BUT in the 2 hour gap in which you have the highs, instead of converting the glucose to energy, you lose some of the glucose into the urine. This can lead to weight loss. I have experienced that I feel really unwell and lethargic whenever I have a high followed by a low, even when I compensate with more carbs...this lasts for hours and I only feel normal again the next day. I also get the symptoms like thirst if I have a particularly bad eating day.

In terms of treatment, my CF drs have all told me to ignore typical diabetes advice and use a small amount (1-2 units) of fast acting insulin as needed, in order to get the full benefit of eating carbs. If you are currently losing weight, this may benefit you. Insulin also helps with building muscle (google it, it's fascinating).

However, as much as I want to be on board with the insulin, I have not had great success with it because I eat small portions all day long, so I always battle with the timing and get lows regularly. So I have gone through patches of trying with and without. I have come up with some things that seems to have helped me without insulin:

* MCT oil, added to starchy or carb heavy foods, and especially 1st thing in the morning into my coffee before I eat anything. MCT oil is a very simple oil, neutral tasting and is easily absorbed without enzymes. The fat slows down the glucose hit drastically (in my experience) so you can still eat the carbs, but they speak of the high is lower and happens over a longer period
* I use stevia in my coffee as I have just generally found all the extra pure sugar is too much
* Try have protein and fat with everything (cheese with your fruit, high fat yogurt instead of low fat etc.)
* Pasta is awesome! It has a much lower-GI than most other starches like bread and potatoes. Not everyone knows this. And if you add a richer sauce you slow it down even more. Anyway I'm a fan, it's been a great food for me to eat and I always feel good afterwards.
* Healthy food in the morning, junk food in the afternoon/evening. In the afternoon and evening I have enough food in my system to buffer the carbs so IF I want sweets or refined carbs, I eat them later in the day
* No cereal or bread for breakfast. I CANNOT have bread or any type of cereal for breakfast, regardless of how healthy it seems. But I have it as a snack, it causes a high but not as dramatic as if I would eat it for breakfast when my gut is empty.

Good luck, let us know if you find any good tips.

 

[julie61554]

Hi Julie, my CFRD manifests very similar to yours (my peaks are maybe a little higher but they come down just as quick, and my hba1c is always normal).

I have learnt that CFRD is not the same in all patients with CF. In the beginning stages it can be this frustrating yo-yo effect of quick highs and lows, and as it progresses it becomes more like "typical diabetes" where the sugars stay high. Prednisone (used post transplant) of course makes the glucose levels much higher and requires serious treatment adherence.

However just because it is mild, it doesn't mean it should be taken lightly or that treatment won't benefit you. We don't have the same risk as people with chronic highs, BUT in the 2 hour gap in which you have the highs, instead of converting the glucose to energy, you lose some of the glucose into the urine. This can lead to weight loss. I have experienced that I feel really unwell and lethargic whenever I have a high followed by a low, even when I compensate with more carbs...this lasts for hours and I only feel normal again the next day. I also get the symptoms like thirst if I have a particularly bad eating day.

In terms of treatment, my CF drs have all told me to ignore typical diabetes advice and use a small amount (1-2 units) of fast acting insulin as needed, in order to get the full benefit of eating carbs. If you are currently losing weight, this may benefit you. Insulin also helps with building muscle (google it, it's fascinating).

However, as much as I want to be on board with the insulin, I have not had great success with it because I eat small portions all day long, so I always battle with the timing and get lows regularly. So I have gone through patches of trying with and without. I have come up with some things that seems to have helped me without insulin:

* MCT oil, added to starchy or carb heavy foods, and especially 1st thing in the morning into my coffee before I eat anything. MCT oil is a very simple oil, neutral tasting and is easily absorbed without enzymes. The fat slows down the glucose hit drastically (in my experience) so you can still eat the carbs, but they speak of the high is lower and happens over a longer period
* I use stevia in my coffee as I have just generally found all the extra pure sugar is too much
* Try have protein and fat with everything (cheese with your fruit, high fat yogurt instead of low fat etc.)
* Pasta is awesome! It has a much lower-GI than most other starches like bread and potatoes. Not everyone knows this. And if you add a richer sauce you slow it down even more. Anyway I'm a fan, it's been a great food for me to eat and I always feel good afterwards.
* Healthy food in the morning, junk food in the afternoon/evening. In the afternoon and evening I have enough food in my system to buffer the carbs so IF I want sweets or refined carbs, I eat them later in the day
* No cereal or bread for breakfast. I CANNOT have bread or any type of cereal for breakfast, regardless of how healthy it seems. But I have it as a snack, it causes a high but not as dramatic as if I would eat it for breakfast when my gut is empty.

Good luck, let us know if you find any good tips.

Your post is very helpful. My trainer actually recommended MCT oil to help me get extra calories. Do you use it mixed in your meals? Is there a reason you use it in your coffee? Also, can you tell me where I can find it?

I have cut out all added sugars. The only sugars I am getting are natural, like in milk, fruits, vegetables. On days I strength train, I usually eat 1 serving of oatmeal cooked in 1/2 whole milk and a tsp. of cinnamon. Then I add 1 tbsp. of butter and 1 oz of almonds. I use to eat this every morning until I realized I was getting to 190 or so then I changed to only eating it on my strength training days. I eat about 30 minutes before my workout and that seems to control the spike. Also, I then can usually eat lunch with not much change in blood sugar at all. I have more trouble on the days I only do cardio. I guess because it isn't as intense and not as long. I can't strength train every day though because my muscles (and myself) need to recover. This may seem like a stupid question but does it seem like your pancreas has to "wake up" in the morning?

I have noticed I don't have too much trouble with past and I use only wheat pasta anyway. I switched to brown rice and that doesn't seem to affect me as much. Also, for my coffee I switched to Monk Fruit Sweetener. I also use heavy cream for the creamer. For bread, I was using Ezekiel 4:9 which is supposed to be low glycemic. But it does still spike me somewhat. I noticed however that Thomas Lite Whole Wheat English muffins don't spike me as much so I switched to using those in place of bread. They are 25 carbs and 8 grams of fiber. I read somewhere they were better for diabetes.


Thank you again!

Julie

 

[stylecomfy]

Hi Julie, I do mix it into all sorts of food, about a tablespoon at a time. I use in my coffee especially in the mornings, because I'm very groggy in the mornings and MCT Oil has (supposedly) good benefits for brain function right away...some call it "fuel for your brain" so teamed with the caffeine I like to think it kick starts my day. I do add milk in the coffee as well and stir it...to me the consistency and taste is fine. I don't like the typical "bulletproof coffee" made with butter that they promote on the banting diets, I think that tastes disgusting.

As for buying it, try a health store or they sell it on Amazon. Just search for MCT Oil. I suggest you get a slighter more pricy product and get the actual oil, not the "MCT Oil powder" ...the powder gave me a lot of stomach discomfort and heartburn and I get no side effects from the oil.

Re the waking up of the pancreas...I know EXACTLY what you mean, it's like it's too slow for the food? But I think it is more likely that our pancreas is always slow due to the clogging and the damage, but the absorption of carbs on an empty stomach happens quicker and therefore it feels out of sync. So if you can do things to slow down how fast the carbs are digested, then the pancreas has a better chance of "sending" the insulin in time. (LOL not sounding very scientific here but you get the idea hopefully).

 

[julie61554]

I have another question if anyone knows the answer.....I went ahead and used the insulin for breakfast this morning as the doctor had recommended (I am not exercising today). I wanted to see how I would do using it at breakfast. I had oatmeal with milk, butter, and almonds. It was 40 total carbs. The doctor told me for breakfast to use 1 unit over the first 30 carbs and then 2 if I had over 60. I was a bit nervous using it in the morning since I haven't done that yet so I only dosed 1/2 of a unit. I still got to 180 which is what I usually do without insulin. Now this is probably a stupid question, but I don't know....when you use fast acting insulin at a meal, does that totally replace the insulin your pancreas would produce to lower your glucose or does it still put out insulin as well? Thanks!

Julie

 

[kenna2]

It depends on the person. The insulin you do when you eat (short acting) is for the carbs you eat to cover only. You should have a sliding scale for additional insulin to do if your sugar goes above normal range to do to correct for a high blood sugar on top of what you ate. It sounds like you don't since your sugars are not that high anyways.

 

[julie61554]

It depends on the person. The insulin you do when you eat (short acting) is for the carbs you eat to cover only. You should have a sliding scale for additional insulin to do if your sugar goes above normal range to do to correct for a high blood sugar on top of what you ate. It sounds like you don't since your sugars are not that high anyways.

Thanks for the information. My doctor never mentioned anything to me about a sliding scale. I go see her next week so hopefully I can get answers to my many questions. I think the CFRD may be getting worse as it seems that the more carbs I cut, the higher my blood sugar is. For the past week I have been having less than 100 grams of carbs a day and the numbers have been running higher. Do you all try to watch your carb intake? My center keeps telling me I need to get about 250 a day but I don't know how that is possible if I am to control my numbers with diet.

Thanks again!

Julie

 

[stylecomfy]

Hi Julie, I do think the sliding scale is for more severe CFRD meaning they need long acting insulin to cover their baseline and then the short acting insulin on top of it with meals.

I have anecdotally heard that when healthy people cut carbs, their bodies also react more sensitively to carbs when it is reintroduced so I do not think it would necessarily mean that you are getting worse, your body just becomes more sensitive...however many things can affect your sugars, illness, other medications, hormones etc. or sometimes it just fluctuates with no real explanation. If you are experiencing a big change it is of course always good to speak to your doctor. And if you can't control it with diet, then you probably will benefit from the insulin.

Regarding your other question about replacing the function of your pancreas...I think if you add 'artificial' insulin, your pancreas will produce less because it does so in response to sugar levels in the blood (injecting insulin, causes lower sugar level which will send fewer signals to your pancreas)...at least that's how I understand it. Good luck, keep us posted on your progress.