diabetes anyone? helppppp

[billiewoolley]

Heyyy!
I'm quite new too this, yet i had an account yearssss ago. Im a CF sufferer and have been all my life (was diagnosed at birth), I do not however have Diabetes yet though.
Ive read up symptoms on the internet, but i'd rather here from an actual CF with diabetes and what symptoms there are..

I've recently been thirsty alot throughout days, defiantly been going the toilet more often (even throughout the night which i rarely do) and sometimes get shakes after i've had a high insource of sugar shall we say. Had a test a few months ago at the hospital along with 476634 other tests, and it said I haven't. But I know i'll get it eventually, just wanted too know when some people got it, how they realised they did, maybe had similar symptoms too?

Thank youuuu!

 

[Printer]

The normal blood test that is given to everyone, DOES NOT work for CF patients. The only test that is effective is the fasting glucose. With your symptoms, you should request it.

Bill

 

[baco623]

I have both cystic fibrosis and CFRD (cystic fibrosis related diabetes). I was diagnosed with CF at birth and CFRD when I was 13. First just because you have CF doesn't mean you will get CFRD. In all the research I have done it is my understanding that about 40% of people with CF will develop CFRD. In the summer of 1999 I starting getting very thirsty, very tired, not hungry, agitated, pale and lost about 15 pounds in about 2 months. My mom took me to my pediatrician on the first day of 8th grade and my doctor knew immediately I had CFRD, those are the symptoms that I had. It took them about a week to stabilize my blood sugar in the hospital and I was sent home. That was 13 years ago. I am 26 now and I have to admit I'm still not really good about not eating sugar but I'm trying. My recommendation would be to go to your doctor, explain your symptoms and have them run a hemoglobin A1C. its a blood test that detects what your overall blood sugar has been for the past 3 months. That is the test they used to diagnosed me, I'm not sure if things have changed in the 13 years since I've been tested but just be open and honest with your doctor about whats going on. If you want to talk more about it please feel free to PM me any time. Sending you lots of love and positive thoughts!!!

 

[jjnorthport]

I was diagosed with CF at birth and CFRD at 20. I remember being thirsty all the time at this point in my life. The clinic nurse tested my urine with a test strip that revealed sugar in the sample. They did a long glucose test which required me drinking a very sugary beverage and blood draws at regular intervals. they determined me to be diabetic. Diabetes also runs in my family. I learned how to take care of myself and eat so I don't have any problems. I'm 48 now and doing great. Hope this helps a little.

 

[bcl0328]

I was diagosed with CF at birth and CFRD at 20. I remember being thirsty all the time at this point in my life. The clinic nurse tested my urine with a test strip that revealed sugar in the sample. They did a long glucose test which required me drinking a very sugary beverage and blood draws at regular intervals. they determined me to be diabetic. Diabetes also runs in my family. I learned how to take care of myself and eat so I don't have any problems. I'm 48 now and doing great. Hope this helps a little.

What do you eat normally? I find it hard to get rid of carbs. My A1C was 6.7 but I know every time I eat my sugar will spike and come back down.

 

[SoyaSauce]

I got CFRD when I was 17, I started getting symptoms very very slowly months before, but I ignored it like I did with my lungs, the thirst turn slowly from a little bit, to the point I needed to drink constant fluids, to peeing on myself, and my final crash of unbelievable 69 lbs for a 5'4 women.

Unfortunately for me, because I let it go, I become full blown CFRD, and it was the most horrible thing ever, I was very close to going into coma with a blood sugar over 900, was hospitalized with pneumonia in the mix as well, I stayed in for month in half, and I made slow but awesome recovery, which changed my outlook with CF as well.

I am now happily on a insulin pump for the past 8 years, I will always need insulin, but the trade off great muscle and excellent weight and more aware of what I put into my body....a blessing in disguise. GET TESTED, and pay attention don't wait ! Amazing, my lungs and lung function made it through that period, which even amazed the Drs.

 

[bcl0328]

I got CFRD when I was 17, I started getting symptoms very very slowly months before, but I ignored it like I did with my lungs, the thirst turn slowly from a little bit, to the point I needed to drink constant fluids, to peeing on myself, and my final crash of unbelievable 69 lbs for a 5'4 women.

Unfortunately for me, because I let it go, I become full blown CFRD, and it was the most horrible thing ever, I was very close to going into coma with a blood sugar over 900, was hospitalized with pneumonia in the mix as well, I stayed in for month in half, and I made slow but awesome recovery, which changed my outlook with CF as well.

I am now happily on a insulin pump for the past 8 years, I will always need insulin, but the trade off great muscle and excellent weight and more aware of what I put into my body....a blessing in disguise. GET TESTED, and pay attention don't wait ! Amazing, my lungs and lung function made it through that period, which even amazed the Drs.

What do you mean let it go? I don't think there is a way to stop CFRD. The thick mucus will damage your islets in the pancreas no matter what.

 

[SoyaSauce]

What do you mean let it go? I don't think there is a way to stop CFRD. The thick mucus will damage your islets in the pancreas no matter what.

Yes you are absolutely right, once CFRD sets in there not really any way to stop it, because of the damage to the pancreas. By what I said, "I got myself into trouble by ignoring it", I meant perhaps in the early stages of mine, I could have helped preserve some beta-cell pancreas insulin function, by limiting my diet from alot of very high carbs, and some insulin shots in-between or at meals only, as by ignoring the high sugars, you have a tendency to stress the pancreas insulin cells, like a type 2, because it detects so much blood sugar, the pancreas tries to correct it. That's just a theory, I can't prove true, but its very possible.

 

[bcl0328]

Yes you are absolutely right, once CFRD sets in there not really any way to stop it, because of the damage to the pancreas. By what I said, "I got myself into trouble by ignoring it", I meant perhaps in the early stages of mine, I could have helped preserve some beta-cell pancreas insulin function, by limiting my diet from alot of very high carbs, and some insulin shots in-between or at meals only, as by ignoring the high sugars, you have a tendency to stress the pancreas insulin cells, like a type 2, because it detects so much blood sugar, the pancreas tries to correct it. That's just a theory, I can't prove true, but its very possible.

If that is true that would piss me off a lot. Doctors never say why they do a test. Just that you need it done. If it was true, would they have told me to diet and exercise like a pre type 2? I doubt it. They want us to eat everything and anything, sacrifice other parts for the good of our lungs. I am stuck with CFRD forever and I hate it.

My only "control test" is that my brother and I were very similar and he never got CFRD. He ate anything and always had soda for a drink. Who knows...

 

[SoyaSauce]

If that is true that would piss me off a lot. Doctors never say why they do a test. Just that you need it done. If it was true, would they have told me to diet and exercise like a pre type 2? I doubt it. They want us to eat everything and anything, sacrifice other parts for the good of our lungs. I am stuck with CFRD forever and I hate it.

My only "control test" is that my brother and I were very similar and he never got CFRD. He ate anything and always had soda for a drink. Who knows...

Man, I can't agree enough, I sent you a PM,

 

[jjnorthport]

First, I'll tell you my meds, 70/30 insulin in the morning and regular insulin at dinner. I really don't eat a normal breakfast or lunch. I have buttered toast and a protien shake for breakfast. A banana, yogurt, and granola bar for lunch. Snacks in between and a normal dinner, all the while keeping in mind the sugar content of what I'm eating. Learn how certain foods effect your sugar level and eat accordingly. Ask your endocronologist for advice and he will adjust your meds to fit.

 

[Christina.R]

I was diagnosted when I was 17 on my routine screening that my CF clinci did. Now they basically tell me to dial up my insulins per meal (Humalog) and eat what I want when I want (I'm counting carbs) but I still try to look for low or no sugar meals. Rice cakes are evil (High glycemic index, send me through the roof everytime I eat them). If you're worried now best to get tested, a fasting test might be enough if theres family history. Also if your doc has you on antibiotics, that can make you tons more thirsty! Are you doing HTS? Or any inhaled steroid like Advair or Spiriva? those can make you thirsty too

 

[SoyaSauce]

Just to say, please don't get 'sugar' and "carbs" mixed up, that's a bad diabetic myth and seriously confusing for some. It COMPLETELY confused me when I was diagnosed because I like everyone else thought actual "sugar" was the problem and took me time to understand.

Anything with "Carbs" is what rises your blood sugar- NO MATTER what. 'Sugar' is a form of CARBS. It can be in the form of simple piece of "healthy " bread to your typical piece of candy, the are both carbs and rise the blood sugar, sometimes both EXACTLY the same rate, even though they are in different forms! Going "low sugar to zero sugar "on meals really means nothing, you should look for "lower' carbs foods if you want to see a better numbers.

-Christin R. , Next time you have a rice cake, those are semi- high carb, - 15 grams average carb for 1 like Quaker oats, if that's the brand you have, - Try eating them 10-15 minutes AFTER you take your insulin, the problem is not the food, it how fast you are absorbing it, the rice cake is getting broken down fast then the insulin being absorbed into the blood stream, and hence you have this weird swing, either that, or your carb factor needs fix.

You should be able to enjoy anything you want, and NOTHING is to be avoided, you just have to match up with insulin.

 

[Christina.R]

My statement regarding low to no sugars in my meals is true, I dont add excess sugar to my meals or coffee, or drink regular pop or excess fruit juices, but I do try to keep my meal's ratios of medium carbs and fats with high protein whenever possible. Sorry if I didnt make this clear, I should avoid end of the night posting!

 

[DebbieS]

I'm fairly new to CFRD, having only been formally diagnosed with 'pre-diabetes' in the latter part of 2010. I'm in my mid-30's.

I insisted it was full-blown diabetes based on my symptoms. Very thirsty, fatigue after heavy carb meals, and despite my usual food intake I was slowly but surely losing weight. It seems my diabetes got triggered because of the prednisone I was taking for allergy inflammation.

A1C is not the best test for determining CFRD because it averages your sugar levels over the last few months prior to taking the test. So if you have numbers ranging from 70-200, for example, it'll show a normal or pre-diabetic reading! I'm on a low dose of prednisone and my sugars range from 90- 220, yet my A1C was 6.4. A glucose tolerance test (GTT) is far more accurate.

I insisted on taking insulin because of the symptoms. Now am on the insulin pump and I'm fairly happy with it. Because gaining weight is a priority for me now, I can't do simply proteins, fats and low-carb foods. Remember, enzymes are used to break down the fat in our foods and you can only have x amount of enzymes within a 20-min time frame. So I aim for complex carbs, proteins, max amount of fats, and frequent meals. You need to see what works for you if you do find out its CFRD.

As far as I know, they're expecting most pancreatic-involved CF people to eventually have CFRD. Because people thankfully live longer these days, they couldn't properly gauge this phenomenon in earlier studies.

Follow your instincts. Please ask the doc for further testing if you feel something's truly off track. Seems like you've got your finger on the pulse, and who knows, you may not have or even ever have CFRD! I wish you much good health and success.

 

[rmotion]

First if you suspect it then you need to be proactive. Eating loads of sugar is bad for anyone. It is safe to assume that CF's we have glucose issues way before we are clinical. Top that off with a strong sense of denial on our parts and you are giving yourself a disadvantage. Get a cheap glucose monitor and start doing some research on how sugar affects blood sugar. Adding insulin to your regime before you are diagnosed with CFRD is an approach I wish I took. It sucks but be proactive about it and face it head on, its not so bad.

 

[bloggymom]

I have what my docs call pre-diabetes. Here is my advice to you....

Eat lots of whole grain carbs, brown rice, and avoid sweets (No SWEETS). Also drink 6-8 glasses of water. I have found if I get dehydrated even a little bit my sugars go out of wack (especially the next morning). I am able to eat fruit (except for bananas) and all kinds of vegetables... even ones considered carbs.

Count your carbs. Ask your diabetes doctor how many carbs you should eat at snacks and at meals and stick to it. The only time I let myself eat more carbs is when we go to Olive Garden and I only eat maybe 10-15 more grams than I would normally eat... and then I drink lots of water after the meal to slowly lower my sugars.

I downloaded an application for my I-phone called Calorie King. It helps you count your carbs and know serving sizes. Now when we eat out I know if I can eat the entire plate or only half. If I don't count carbs I either eat too much or not enough and bad things can happen. Counting carbs is huge!!!

Another thing is to exercise. Check your sugars before and after. My best friend after exercising is a glass of juice and peanuts. Oh, yeah... eat protein with your carbs. They will help your body deal with the carbs better and you sugars may be more even with the protein.

I have started exercising 3 days a week, continuing to count my carbs, drink my correct amount of water and try to keep my stress level down and I hardly have issues with my sugars. I do have days where I can do everything right and my sugars do crazy things.... it happens.

Hope this helps!!!

 

[BreathinSteven]

What do you mean let it go? I don't think there is a way to stop CFRD. The thick mucus will damage your islets in the pancreas no matter what.

I'm not sure the mucus is the issue here... Though -- I don't know the mechanism by which the islet cells become ineffective... My vague understanding is that the thick mucus tends to screw up ducted glands - exocrine glands... There are ducted glands in the pancreas that produce enzymes that help digest fats -- there are also ducts in our liver that can get blocked/messed up -- and naturally, the airways in our lungs are more-or-less, a big duct system... Insulin is produced in our pancreas by islet cells, and those are ductless glands -- endocrine glands. They would not be blocked by mucus, as they don't have ducts to clog/block... Someone else mentioned that CFRD is not an inevitability - that it occurs in around 40% of us CFers. Though I honestly could be full of crap here -- I don't think that the mucus impacting our pancreas' ability to produce digestive enzymes has the same impact on our ability to produce insulin in our islet cells. (Though, I don't know why they eventually become ineffective in some of us...) I received two new lungs right around my 40th birthday -- I was NOT diabetic before that. My diabetes was caused by the drug cocktail I was on post-transplant. I don't know if it was aggravated or influenced by some lurking, latent CFRD -- but the thought amongst my clinic and endocrinologist is that mine was drug related and not CFRD. I had pancreatic insufficiency very early on -- when I was 6-7-8 years old, but never showed signs of diabetes. Love, Steve

 

[bcl0328]

I'm not sure the mucus is the issue here... Though -- I don't know the mechanism by which the islet cells become ineffective... My vague understanding is that the thick mucus tends to screw up ducted glands - exocrine glands... There are ducted glands in the pancreas that produce enzymes that help digest fats -- there are also ducts in our liver that can get blocked/messed up -- and naturally, the airways in our lungs are more-or-less, a big duct system... Insulin is produced in our pancreas by islet cells, and those are ductless glands -- endocrine glands. They would not be blocked by mucus, as they don't have ducts to clog/block... Someone else mentioned that CFRD is not an inevitability - that it occurs in around 40% of us CFers. Though I honestly could be full of crap here -- I don't think that the mucus impacting our pancreas' ability to produce digestive enzymes has the same impact on our ability to produce insulin in our islet cells. (Though, I don't know why they eventually become ineffective in some of us...) I received two new lungs right around my 40th birthday -- I was NOT diabetic before that. My diabetes was caused by the drug cocktail I was on post-transplant. I don't know if it was aggravated or influenced by some lurking, latent CFRD -- but the thought amongst my clinic and endocrinologist is that mine was drug related and not CFRD. I had pancreatic insufficiency very early on -- when I was 6-7-8 years old, but never showed signs of diabetes. Love, Steve

The cause of CFRD is multifactorial. Pancreatic fibrosis due to inflammation secondary to obstruction of pancreatic ducts eventually involves pancreatic islet cells. There may also be an intrinsic functional abnormality in CF islet cells. Insulinopenia is a key feature of CFRD and results from the destruction of islet cells. There are, however, other changes in intermediary metabolism that increase insulin resistance. There may be some intrinsic metabolic adaptations that cause this, but systemic inflammation, again, plays a role in increasing insulin resistance which can lead to CFRD.

 

[Angela65a]

Hi there I became a diabetic at 21 24 years ago, nearly 25(ive just turned 48), ive cf too, no children. I do 3 inslin injections a day, id love to tell you its a lot easier cf/diabeties, but sorry its very hard, ive to do my blood ie test about 7 times a day as I drive and need to so so careful when you drive. I live in Northern Ireland by the way. Hope you don't get it not everyone with cf does. A.