Diabetes Question for CFers

[Kay]

Hi Everyone--

I am a bit new to this discussion board but I have a few questions. I am in for a clean out right now and unfortunately the doctors have come to the conclusion that I may have diabetes now. My blood sugars have been really high (over 400 and sometimes even in the 600s), and they haven't been able to stablize them enough for me to go home. I was wondering if anyone else was in or has been in a similar situation. They have been giving me insulin but it seems to be taking a long time for things to come around. It looks like I am going to have to be putting a lot more work into monitoring my sugars with carb counting and checking the levels themsevles. Has anyone got any good tips to make this an easier process...not only for me but for my parents. I think they are taking a little bit harder than I am, the last 2 years have not been so good and this is just one more thing to add to the list. I know I didn't want to accept the idea that one more thing has to be watched and more medicine taken but there is nothing I can do to stop this. Any and all advice/guidence would be helpful, esp since I am new to this part of the disease.

Thank you,
Kathleen 21 w/cf

 

[anonymous]

Dear Kathleen...My first time even looking at this site...My son...23...has cf. He is actually in for a "clean-out"..."tune-up" as i write to you..went in yesterday. He developed diabetes about a year & 1/2 ago...had high sugar levels for about 6 mo when he was dx with diabetes. At that time his sugar was very high..even in the 700's...very scary for us as well as him...he hates needles!
Anyway...at first it did take time for his sugar levels to improve...couple of weeks...BUT they did improve...the docs have to kinda get an idea of how much insulin it takes to bring it down without "bottoming - out" your sugar. Then with the help of the patient...and family...make a "game-plan".

He had to go through an adjustment period (and it was difficult for him to accept the fact that he had developed diabetes on top of everything else)...difficult for us too (Mom & Dad).

Let me encourage you and your family that with the help of good doctors...you can get the diabetes under control...and maintain control!!!
It is a daily task, however...and you cannot let your guard down...keep on keeping on!!!

I still have a lot to learn myself (and so does our son) about CF related diabetes...it is different than the regular type I and type II diabetes. as in you cannot put someone with CF on a restricted diet - (from our experience). My advice on the line of diabetes health care would be to find a GOOD Endocrine doctor who is knowledgeable about CF that is willing to work "with" you in developing a plan that is personalized for your specific needs and that fits your lifestyle. I'm sure that you also are talking with a nutritionist as well while you are in - as they are very helpful!!

Again...let me encourage you and your family...I'm sure you are a beautiful young lady and God does have a plan for you...
I invite you to email me and let me know how it goes...email address is dmrt99@bellsouth.net.

(I am 41 y/o, my husband is 44 y/o...and we also have a daughter, 20 y/o ... w/o CF) I will keep you in my prayers.
Sincerly,
Marie .....Psalm 46: 1-3

 

[JazzysMom]

I dont have "official" CFRD, but I had gestational diabetes (insulin dependant) while pregnant & extremely high sugars while on prednisone. Because of my weight loss watching my diet was nearly impossible so I used insuling again. It took a bit to get the right amount. One time while in the hospital my sugars were over 600 & I thought the nurse was going to faint. LOL. I didnt think anything of it except the orders for my insulin didnt have a coverage for that high so we had to adjust the orders in case it happened again. Which it didnt. Although my sugars are under control (without insulin no, but off the meds too) I still try not to overdose on carbs at one time because I still have major sugar crashes if I do. Even tho my high sugars are in normal range. Unfortunately its a game a lot of times & you have to figure out what works for you. For many CFers its even harder because you have the calorie factor to maintain weight. If you can find and endocronologist (sp?) THAT specializes in CF you are way ahead of the game. The one I went to said she knew about CF etc, but when push came to shove my CF worries overrode the diabetes so I listened to my CF doctor on some issues relating to the diabetes. There is a difference between a diabetes association with the pancrease (like my endocronolist was doing) & CFRD due to pancrease. Too many other factor to consider.....Good Luck!

 

[Kay]

Thank you both for responding it is good to know I'm not the only one going through this! I am in for a clean out right now too. I thought I was only going to have to stay a few days and then do the rest of my treatments at home, but because of the sugars I had to stay. They decided to have me carb count is this something you do as well?? It is somewhat tedious but I guess it is the best solution for me right now. I am on pred 30mg (I was on 40 for months), this is the beginning of a very slow taper. I just hope that coming off the pred will make this diabetes situation easier, because at first they thought that was what might be causing the high sugars. We now know it is probably not but hey I can pray for a miracle...haha.

I hope all the CFers are doing well and that Marie your son's clean out goes well.

Kay 21w/CF

 

[spicyone18]

I do the carb count as well, that is what has worked best for me. Blood sugars can be a real pain in the butt sometimes. When I was diagnosed with diabetes my sugars where in the 900s, and I too was on steroids at that time. They were surprised I was still walking and talking! I haven't been on steroids in years cause they obviously shot my sugars to high, now that I do the carb counting they are much better controlled.

 

[Kay]

Courtney--

Do you have to carb count every time you eat...I am talking snacks and meals? It is such a pain, I eat a lot throughout the day and I don't like the idea that I have to take a shot eveytime I eat something. Also does the carb counting get easier?? I have a book to look stuff up in and there is a web site but I can't see myself doing this at a resturant and in the middle of the cafe at school. Aaahhhhhh this is so new so I feel like I am doing it wrong and I will never get the hang of it. My sugars are still above 200 after I eat and I double check the carbs numerous times. Did it take you a long time for your sugars to be normal...or at least close to normal? I have to do a correction factor when my sugar level is above 150 plus cover the carbs at meals, it is a lot I just hope it will get easier.

Thanks for your help!

Kay 21 w/cf, cfrd

 

[kybert]

<blockquote>Quote<br><hr>I just hope that coming off the pred will make this diabetes situation easier, because at first they thought that was what might be causing the high sugars. We now know it is probably not but hey I can pray for a miracle...haha.<hr></blockquote>

i dont want to get your hops up incase your sugars dont go back to normal by themselves but i can tell you now that is probably IS the pred. i dont know why you docs would say otherwise unless you were showing major symptoms before the pred. if the steroids are whats causing it then your sugars will go back to normal when you are completely off them. if not, then your sugars wont be as extreme as when you wer on steroids.

in regards to taking so long to get the sugars right, it does take quite some time. they start off with small doses of insulin and increase it a little bit everyday until they get the right dose. unfortunately steroid induced diabetes usually takes a hell of alot of insulin to control so 'it' will be slow.

i never carb counted but i did adjust the dosage to what i ate through trial and error so i guess you could say that it some kind of simplified form of carb counting. carb counting/insulin adjusting is much better than a fixed dose and having to eat according to that dosage. you will get used to it and you will end up knowing how much to take for particular foods without much thought.

 

[JennifersHope]

Prednisone is the cause of me needind insulin as well.. If I am on a low base of steroids then I can just take the antidiabetic pills.. (Metformin) but any dose of Pred above 20 and I need insulin.. I used to just do regular insulin with the sliding scale.. It doesn't work that great.. and I have started doing more or less carb counting and then giving myself the insulin......

Jennifer

 

[spicyone18]

I carb count with everything I eat and drink other wise it throws me off. I also take lantus (long acting) insulin in the morning. It does take some time to get used to like in the begginging I had to measure everything but now I can look at my plate and know how much insulin I need. My diatitian told me about calorieking.com and on that website you can look up almost any resturant say like Chik-fa lay, so if you know your going to lunch there you can look up the meal you'll get and see how much carbs a perticular meal has then you can do the insulin before hand. Anyway it does get easier, but it take time too.

Good luck

 

[Kay]

I got the book calorieking and I frequent the website when I am not too sure of what I just ate at certain places. I also take lantus in the morning. It is good to know that I am not the only one on this crazy ride, it is new for my family and I so we were totally confused. We have friends that have diabetes and they don't have to carb count or anything so it was very strange at first. I am getting used to it though, I started giving myself the insulin which is a big step for me. You would think I would be used to needles by now. Thanks for all the encouragement and support, it is a HUGE help!!!

 

[imust]

Hi Kathleen,

My name is tim, I am 40 and I have CFRD. I am using an insulin pump to help control my sugar levels. I have been giving myself insulin for about 5 years and I know i probably should have started earlier because I used to feel like I was riding an elevator when I was standing still. I started using the insulin pump on november 11th 2005 and I have learned so much about how things work but I still have a lot to learn. I count carbs all the time but with Cf you can't limit the carbs or you will have trouble. We burn too much energy to try to limit the carb intake therefore the insulin helps balance that out.
There are so many things to learn about simple carbs and complex carbs and how they digest using pancreatic enzymes in our bodies. I learned real quick that you have to have a doctor that knows CF and how it affectes diabetes because as with most everything else people with Cf are not the same as "normal" diabetic patients.
Carb counting is pretty easy once you get used to it. Reading the labels on products and figuring out the portion size is the key. Fast foods are incredibly hard to figure out even though they give you the information on the internet, (sometimes it is not exactly right) If I don't know the value I stay away from it.
Let me know how things are going , if you get a chance.

 

[thelizardqueen]

I carb count with every single thing I eat and drink - otherwise it throws me off completly. I take insulin with every meal I eat, so that sometimes means taking 4-5 shots a day, and then extra shots when I'm high. It does get easier with time though - just be vigilant about it.

 

[anonymous]

My daughter has problems with her glucose levels anytime she is on steroids. Once she comes off the steroids they adjust back to normal. Something else you may want to look at is the IV meds they are using for your tune up. The last time my daughter had her tune up and was on steroids her glucose levels went well over 500 (which was high for her even with steroid use) and they couldn't figure out what was going on at the time. I got to looking at her IV meds they were bringing in and everyone of them was mixed with D5W (sugar water). I brought this to their attention and they started mixing the meds with N/S and this brought her levels down.

 

[JazzysMom]

U had to point out that her meds are being mixed with sugar water! When I was in the hospital & on IV steroids (first time ever with steroids) my sugars went to 555 (should have bet that #). I thought the nurses were going to faint...haha! The first thing they did was change my iv mix from sugar water. I didnt have to bring it to anyones attention! Well actually the first thing was give me insulin, the 2nd was change the solution!

 

[anonymous]

You are definitely not alone with the diabetes. I was diagnosed when I was 17. I think I had every single symptom of diabetes when they finally diagnosed me. I had gone to the dr with complaints of different symptoms they just never put it together til almost a year later. By the time the figured it out I had lost about 20 lbs (they thought I had an eating disorder when I first started losing weight - it took me breaking down in tears saying something is wrong with me figure out what it is before they admitted to the hospital for testing) which unfortunately I have to this day - 5 years later- still not been able to gain back. My blood sugar was at 379 when they admitted me to the hospital. I was not on any steroids or anything at the time and hadn't been for years. I carb count to give my insulin, but my endocrinologist told me that there is no need for me to stick to a diet since I am insulin dependent I just need to control my blood sugars with the insulin. This way hopefully I can gain some weight back.

I have been on Prednisone once since I was diagnosed and the side effects were awful. My blood sugars were out of control and nearly impossible to control. Normally I take relatively small doses of insulin, but when I was taking te Prednisone I had to give myself three and sometimes four times the normal amount of insulin.

Also one thing that I have ad problems with the last few admissions to the hospital is apparently the nurses/pharmacists in the adult hospital don't read my chart to see I am diabetic and double check my medication. A yr ago I was admitted and ended up getting violently ill over a three day period where I was hunched over the toilet throwing up pretty much constantly. They had all my meds (I was on 3 dif meds at the time) mixed in Dextrose (Sugar Water) instead of Saline. Once they mixed everything in Saline I started to feel a whole heck of a lot better. Unfortunately the Dextrose/Saline situation has happened on several occasions since I switched to adult care, now it is the first thing I check if I do not feel well when in the hospital.

Another thing I experience, which I don't know if it is just me or not, but I always have higher B.S.s when I am actually in the hospital. I do less there then I do at home so I am not moving and working off the sugars I would normally burn, so my insulin doses are normally a bit higher in the hospital vs. when I come home on IVs.

It definitely does get easier though. I don't even think about giving my shots and checking my sugars anymore. Before I was compulsive about it and freaked out over the needles. Now it is like second nature. Best of luck to you in getting everything under control. My mom had a hard time handling it at first too. She hated that I was having to go through yet another "thing". I just told her that we knew something was wrong and at least now we know what it is and we can take care of it. If you don't know what it is you can never treat it, so yeah it kind of stinks but at least they were able to identify the problem <img src="i/expressions/face-icon-small-smile.gif" border="0"> before you got real sick from it.

Best of Luck,
Lindsey
23 w/CF and CFRD

Sorry for the long winded post <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennifersHope]

Same thing happened to me .. my antibiotics were all mixed with dextrose.. My sugars were continually through the roof.. they just kept telling me it was all the steroids I was on.... which was true..but putting a few liters of dextrose in may have had something to do with it.... Thankfully the home nurse that did my evaluation before I went home from the hospital picked up on it and switched me to normal saline..

Jennifer...

 

[littledebbie]

What happened with Kay? Was it the pred or was it the real thing? Kay, update please.

 

[thelizardqueen]

Same thing happened to me - I went in to hospital for surgery 2 years ago, and they had my meds mixed with sugar water. I was in hospital last year for a kidney infection, and you guesses it - they had me on sugar water too.

 

[JohnnaMarie]

Kay:

You could try lots of excersise if you can. I am not sure of your physical condition besides crazy high blood sugar. My mom has a friend that has to run several miles each day to keep her blood sugar undercontrol and that is with insulin as well. But the running does get it down for her. I sincerely hope that you can find a way to get this under control. I wish you the best!!