Help! Newly diagnosed with CF related Diabetes

[RachElizza]

At my clinic appointment yesterday I was informed that my blood work from three months ago indicated that I have CF related Diabetes. I was shocked that they waited until my clinic appointment to tell me instead of letting me know when they received the results. I was even more shocked when I was told I could not get an appointment with an endocrinologist until October. Which makes me feel like its not as big if a deal as I originally believed. Does CF related diabetes not impact you much? I'm pretty confused.

In short, I would like some advice on changes I need to make. I do not know anything about CF related diabetes.

I have been exhausted, light headed and had many dizzy spells recently. According to my clinic nurse practitioner that come with diabetes, but she did not give me any information on how to treat it.

Are there any helpful online resources you have found?
How did you change your daily routine and diet to accommodate the diabetes diagnoses?

 

[bcl0328]

I have not changed my diet at all. I carb count everything I eat and bolus (give insulin) based on what I eat. You don't really feel the impact of diabetes unless you have years of high blood sugar then you might feel tingling, numbess, loss of vision. Right now if your sugar is high you might feel tired, go pee a lot, and feel bad in general. It is a lifestyle change but you get used to it. Low blood sugar is not fun either.

If you really want control then limit carbs, no soda, etc. Whenever I don't eat carbs I don't have to take insulin. But I like to eat anything and everything since we need a hearty diet. I've had it for 8 years without issue yet.

The reason they are thinking it's not a big deal now is because your pancreas is still probably making a little bit of insulin and eventually it will wear off. By then you should really get on insulin and check your sugars daily. Don't let them run high.

I don't know how many people on here know about Reddit but I go to http://www.reddit.com/r/diabetes/ and http://www.reddit.com/r/CysticFibrosis/ for any questions and answers.

It is mostly trial and error, learning yourself.

 

[RachElizza]

Thank you! Reading this made me feel much better. I am downloading the Reddit app now!

 

[Gorf]

I found out I had it when in for a clean out with antibiotics a few years ago. At that time I was drinking and eating what ever I wanted. My sugar level was so high it would not read on the meter, they had to do a blood test. Started me on 4 shots of insulin that day. The next day all I changed in my diet was diet pop(pop is evil) I only needed one shot that morning and the next day none, when released was put on pills for it, also took cinnamon pills over the counter(natural sugar metabolizer), have since then had to transfer to insulin with the progression of my diabetes. I still eat most things I want just control with the insulin, but still stay away from the soda pop. I have since learned to know the foods I eat and activity level to know how much insulin to give myself. If you ever go on steroids of any type they will shoot the sugar levels up. It takes a little time to learn but it comes natural to me know. 48 year old male with CF. DDF508.

 

[RachElizza]

Gorf,
It's amazing the difference taking soda out if your diet can make! I hope to be able to change my diet to avoid usuing insulin if I can. You mentioned activity level, how does that coincide with diabetes? Can you still be as active as you want? Does it help to be more active?

 

[Jet]

I went a long time without insulin. I was able to regulate my diet and excercise well enough. Eventually my pancreas stopped producing enough insulin. It helps to be active because excercise burns carbs.

 

[CrisDopher]

I am alarmed that your doctors are not taking action on this quickly or effectively. Your first phone call Monday morning should be to your CF clinic and ask for a blood glucose stress test to be set up, or some other confirmation diagnostic test. They CANNOT tell from a single blood test coming back with high numbers if you have CFRD or not. MY CF doc was all over it when I had some bloodwork during IVs coming back with high glucose and she ordered followup blood tests every few days for a couple of weeks until she was satisfied this wasn't a fluke. When she mentioned the high blood sugars the first time and thought it might be CFRD, that jived with my increased thirst of the last few months and increased urination. Those had crept up on me slowly enough I hadn't actually noticed; but getting the confirmation of high blood sugar clarified that!

Your second call should be to the endocrinologist asking for an immediate initial appointment - remind them that you are newly diagnosed, and that this is not a mere checkup. You need tools and advice. Ask them at least to set you up with an appointment with a diabetes educator who can give you a blood glucose meter and show you how to use it and advise on good diet.

Now. before these appointments happen, you need to start tracking some things by writing them down. Start tracking these things TODAY and create a record you can take to the doctors - they can't diagnose or treat you in a vacuum information and you can't manage your possible diabetes without information, either. You will track: a) everything you eat and everything you drink, including portion sizes and carb content. It is slowing going at first, but there are many sites and apps to help you look up carb content of foods and drinks. Calorie King is probably the best app for iOS. b) note every time you drink and how much c) every time you pee and how much [are you getting up in the middle of the night to do so? Is that unusual for you?] d) any weakness, dizziness, tingling, hyperactivity, etc. Do not significantly vary your caffeine intake - whatever you normally consume, keep consuming it steadily - it is part of your baseline for how you feel.

It is critical to get your hands on a meter ASAP. Track your blood sugars. If they are reading high, then you must reduce carbs or take insulin or exercise more and probably all three. By getting a meter right now, you can start keeping a log that will prompt your CF doc &/or endocrinologist to get you on the right insulin sooner rather than later.

Let me emphasize that waiting until October for a first appointment with the endo is NOT an option. Find a different endo if you have to. (I am not happy with my own endo for precisely the reason of not being able to see her in a reasonable time frame and am looking to switch.) There are no reasons to delay proper treatment and every reason NOT to.