Diagnosed with CFRD yesterday.

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AprilCF2009

New member
Well I got the call I was diabetic yesterday. My fasting blood sugar was 103. Not to bad. After I drank the glucose and waited two hours it was 292. Apparently thats high. I dont know much about diabetes.
im going to an endocrinologist next week.
So what am I to expect? What is a good food plan I guess. And foods to avoid
and exercise is good I hope?

I have meal prepped for a year now workout daily at the gym.
I dont even like sweets pop candy cake chocolate ice cream none of that yuck. And I dont even eat bread or noodles.
so I dont understand what went wrong :/ is this considered type 1?


What is your daily regimine with insulin and checking blood sugars.
help lol

Im not really that upset because i hear its common and I guess I was kind of expecting it. I am very compliant with my medications. Is it possible to live a long healthy life with diabetes if its managed properly? My lung functions are high about 77-81% and weight is good. So just making sure I can live with this.
 
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Printer

Active member
You may not need to do anything different than you are doing now except one injection per day. Relax until you talk to your endocrinologist.

Been there done that. Good luck.

Bill
 
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vbs420

New member
When I was diagnosed, I had two doctors telling me two different treatment plans. One was the pulmonary dr at clinic, the other was the endo at clinic. Sadly, they are also married.

The entire experience of diagnosis and establishing treatment regime was so maddening, I once just walked out of a session to cool off. They told my wife "that happens all the time". I returned a half hour later and they acted as if nothing had happened!

But my situation was hopefully extremely unique.

Here is what I would recommend you do:

Take the time to research and understand what diabetes is, both type 1 and type 2. CFrD is its own beast, but also presents itself in ways that most others understand as type 1.

Between now and your endo appointment, become prepared!! Start with a food / exercise / sleep journal, and write down as much detail as you can muster.

Get a glucometer and strips! Test yourself when you wake up, when you go to bed, before you eat or drink (anything but water, coffee or tea without condiments), and then again two hours after you eat or drink.

Even if you don't know how yet, count the carbs. Most food labeling includes carbohydrate amounts. Don't be misled, you want the total carb amount, not the sugar amount; that sugar amount only represents ADDED sugar, not naturally occurring sugar; that is captured in the carb amount.

As well, notice the fibre amount (also as a sub group of carb). The amount of fibre has a direct relationship to carb.

During this pre-endo time of journaling, don't change anything, just record data.

Everyone is different, but I would suggest to be very wary of any suggestion to medicate with anything made for type 2. This includes most "single shot" insulin, and any type of pill.

These meds assume two things: you're ignorant and complacent about your health, AND you don't want to and will never change your daily or lifelong habits of eating and exercise.

Anything other than short acting / rapid onset insulin is going to frustrate you. But you've got to do the work to establish the habits to know that other half of your pancreas, and work with it to live a *normal* life.

Send me a DM if you want to chat.
 
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jmiller1

New member
I had a similar result with last years GTT. However I have since made a few key switches in my diet and haven't needed insulin. I eat mostly "Paleo" and have gotten my fasting sugars under 100 and my post-meal sugars within normal range. Of course conduit your doctor but I wasn't ready to jump to insulin without first monitoring my daily sugars when I was paying closer attention to how I was eating my sugars/carbs.
 
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AprilCF2009

New member
I appreciate all your replies. I guess I don't understand the whole Diabetic Thing. I really appreciate all the information provided Vbs420.
I can't afford a glucosmeter and strips that about 150$-200$ I think i should wait until my Endo so i can get a prescription to cover the costs. I am going to definetly make a journal. thank you!
 
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imported_Momto2

New member
I was just diagnosed 5 months ago. They started out having me test my blood sugar when I woke up, right before a meal, one hour post meal, and two hours post meal. Yes, this means like 12-14 sticks a day if you do snacks. I started out with 3 shots per day of short-acting insulin (novolog, anywhere from 2-6 units, I take about 1 unit per 15g carb) and counting carbs for each meal and covering that. After I got a pretty good handle on things I added an early-afternoon 24 hour insulin shot (Lantis) to the mix (which really only works for about 18 hours, right now I am at 4 units). My sugars used to be 140 at wake up, 250-350 1 hour post meal, and always over 200 2 hours post meal. During the night it would hang out in the 150-200 range, even though I hadnt eaten. My diet at the time was almost NO sugar, low carbs, but high fruit, veggies, and lean meat, and pretty much no fat. After the insulin, my wake-up sugars are about 100, 140-180 1 hour post meal, and between 80-130 2 hour post meal. So a HUGE change. My endocrinologist, who specializes in CFRD, is happy with these numbers. My last A1C was 5.5. I have to be super careful of hypoglycemia so I cant up the acute insulin or I crash. I highly reccomend keeping a very detailed log of what you eat, when, how much, and almost hourly blood sugars (except nighttime where I would get up and take it 1-2 times). Once you have that data, it makes it pretty easy for the endocrinologist and you can cut back on the testing somewhat.
 
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shay

New member
My daughter has CFRD. My biggest recommendation is to find a endocrinologist that is familiar with CFRD since it is different from both Type 1 and Type 2. First steps will probably be a lot of blood sugar testing to see where you are now. Then you can come up with a plan to bring your sugars back to as close to normal as possible. Sometimes this will involve insulin right away. Sometimes dietary and exercise can keep you on track for a while. Everyone is different and it seems to be a progressive thing. You can absolutely live with this. It just becomes one more thing to watch. It sounds like you have a good healthy diet and exercise program to begin with so you can work your blood sugar management plan into that. It takes some learning, but you can do it!
Best,
Shay
 
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vbs420

New member
If your insurance covers CGM, I highly recommend going with that; you will get a reading every 5 minutes! Far more accurate than just test strips and finger pricks every few hours.

Please correct if I'm wrong: aren't glucose meters free with purchase of test strips? And 100 strips is ~ $60 - $75 depending on brand.

I'm in Vancouver BC (Canada). If your prices are different, I would be interested in knowing by how much.
 
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ChungGustafson

New member
Well you need to be relaxed till visiting endocrinologist. CFRD stands for Cystic Fibrosis-Related Diabetes which is considered as a unique type of diabetes (not same as normal diabetes condition). Their diagnostics and treatments are not the same. It has some features of type 1 and type 2 diabetes both. Due to scarring in the pancreas, CF patient do not make enough insulin. Insulin is one of the common medications to treat CFRD.
 
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smfuller

Guest
I don't know a while lot either but my daughter who is 7 has CF and is being tested for Diabetes as well. So I'm trying to learn as much as I can. From what I've researche'd CFRD isn't necessarily because you eat bad and aren't exercising but rather it's brought upon specially because you have CF which is why it's not really the same as Type 1 and Type 2. You're pancreas has a harder time getting insulin out due to the sticky secretions in the pancreas. Good luck to you though. It's a learning journey. :)
 
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