Cf related diabetes

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Gemsi
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Date Joined Feb 2007
Total Posts : 1050
   Posted 1/20/2015 8:50 AM (GMT -6)   
So, 2 weeks ago was my annual review. My blood results have come back from my glucose tolerance test and it shows my 2 hour blood sugar to be high again. It's 14, so yeh pretty high. 2 years ago it was 12 then last year it was 5, so normal.

Those who are now fully diagnosed CFRD, were were your GTT tests up and down like this? The other year further investigation with the stabby machine and the food diary showed my levels were OK and they said infection could be the cause of iffy levels. I'm hoping it'll be the same this time, just got a new stabby machine to test with.

Has anyone else had this experience? I've been losing weight quite quickly recently and am now on skandishakes. I'm just a bit worried about it all.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 5915
   Posted 1/20/2015 12:06 PM (GMT -6)   
Hi Gem, your subject line caught my eye and after looking a bit online, I found this: www.cff.org/LivingWithCF/StayingHealthy/Diet/Diabetes/.

I don't understand the specifics in the differences between a person with CF and diabetes/blood sugar problems and a diabetic who doesn't have CF, but if it's about blood sugar, then just know that carbohydrates will raise your blood sugar. Potatoes, rice, bread (anything made with flour), anything made with sugar of course will all raise blood sugar levels.

I hope you get control of this and that your doctors are knowledgeable about treatment, etc.

cool
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 1/20/2015 2:48 PM (GMT -6)   
As far as I'm aware over here they don't discourage you from eating anything you just have to make sure you take the insulin to match it. I've been instructed not to change my diet only to add more to it and 4 sugars in my coffee, high sugar pop and crisps is still the plan as my weight keeps sinking. Because of mucus in our pancreas the ducts that allow insulin production eventually get blocked so it's a case of not enough insulin getting through. But it's somehow not the same as type 1 or type 2 it's like a weird mix of both. That's mostly what I've picked up about it over the years. Mostly I'm just hoping the GTT is wrong and that a food diary will show that. I'm not sure how knowledgeable our doctors are but our dieticians are fantastic and we do have access to a diabetic nurse aswell.

Thanks for the link Lanie :) I'll go take a look at that now. Im so worried though like getting diabetes is one of my fears, I'm very needle phobic and I'm not sure how I would cope.....Though it would also automatically enable me to get free prescriptions so I suppose there is a plus side to it. :P
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 1/20/2015 3:00 PM (GMT -6)   
Oh ok, so I knew a bit of that info. Didn't know diabetes could cause weight loss though, and excessive tiredness is me all over and has been for a few months. Lung functions still OK though.

Now I'm torn between researching more or not...... Do I arm myself with info or not.

Hope you're ok Lanie.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 5915
   Posted 1/20/2015 3:57 PM (GMT -6)   
I don't know, Gem. I can only tell you what I know about how insulin and the lack of it can affect us. When the body is working properly, insulin helps the glucose running around in our blood stream to get into the cells so it can be used for energy. However, if the glucose can't get into the cells, then the body is usually tired because it can't get energy and it starts using fat and muscle (the latter in extreme cases) to survive, and this does cause weight loss but not in a good way because essentially, the body is devouring muscle to survive. In the meantime, the blood sugar levels are extremely high and this can become critical. That can only go on for so long before serious health problems arise. All this can happen if there is no insulin available.

So, when the pancreas cannot produce insulin, or if it can't produce enough, then insulin needs to be part of a person's therapy on a regular and daily basis.

Now, how diet affects all this is that carbs need insulin to be escorted into the cells for energy and if there are too many carbs, then they are stored for future need (and this can be 'fat'). The more carbs eaten, the more insulin needed but if insulin in lacking and carbs are eaten, then the blood sugar levels sky rocket.

This is why a low-carb regime is best for any diabetic because it will help keep blood sugar levels closer to normal with less medication and even less insulin.

But - here is where I do not know if having CF complicates this. I would think that these general facts about blood sugar are true for everybody. I do think it's a good idea for you to look into this further because high blood sugar is not a good condition for anyone.

Best of luck. (Yeah, I'm fine, just older. mad )
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 1/21/2015 2:38 PM (GMT -6)   
Thank you for your information Lanie, it is very helpful. It's give me an idea of some questions I could be asking if my food diary does show I'm diabetic. :)

Gem
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 2/20/2015 1:06 PM (GMT -6)   
Gemsi, Steroids, antibiotics, an infection, stress -- they all can elevate your blood sugar temporarily (matter of days, or weeks)

My annoying problem right now is my pancreas ocassionally puts out a spurt of insulin. So I dose like I normally would, and what has worked many times before, but THIS time I go severely hypoglycemic. Most annoying.

As an aside, the teeny needles for injecting insulin dont hurt at all :) MUCH less than getting blood to test your sugar level.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 2/22/2015 6:54 AM (GMT -6)   
Hi there wiley,

Well it turns out the gtt was a blip. The 5 day food diary and blood sugars all were OK. They think that with me having an infection and I've been having anxiety attacks going to the hospital anyway and it took 4 attempts to access my port!! Then my body was probably trying to control so much that having to control insulin too was a big ask, especially getting loaded with a bottle and a half of lucozade all at once.

So I'm fine for another year when they do another gtt. Going into hospital on Tuesday to start iv antibiotics to treat the infection so hopefully my weight should return when my bodies not fighting so much. :)

Thank you for your reply. It does sound really annoying to be going hypoglycemic aswell! Can you feel when your bodies going to do that so you can prevent it happening?
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 2/22/2015 3:12 PM (GMT -6)   
Gemsi, Ugh, sorry about the hospital visit. Cant you start stuff at home?

Glad to hear your gtt was fine :)

I can easily tell when I'm getting hypoglycemic. I get fuzzy-brained, sweaty, and finally if I really dont get a clue, about 1 minute before I seize I get the coppery taste of blood in my mouth. Yummy. NOt just for breakfast any more! But seriously, once I figured out the symptoms, I'm very good at getting on top of things and preventing it from getting too far.

HOpe Tuesday goes well!!!!!
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 7/13/2015 9:29 AM (GMT -6)   
Gemsi, Just keep a close eye on the blood sugar. I went for a year without being diagnosed and my body was in such inflammation flux that I permanently lost a TON on lung function. (from 59 to 41% and with NO infections during that time, just inflammation). Doesnt sound like too much, I know, but for me its the difference from being able to do a triathalon to needing oxygen to do ANYTHING. A simple flight of stairs and my oxygen sats tank. So dont let it sneak up on you!
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/14/2015 3:53 AM (GMT -6)   
Hi Wiley,

I don't have another GTT planned until next year. I know what you mean about lung function, even though I have high functioning lungs at 90+% a drop of 10% can feel like I'm being choked of air. Currently I'm sat in the 70's, just rang the hospital to check when my appointment is because I feel like death warmed up. My erythema Nodosum has also flared up big time and I can't do anything except sit on the sofa as all my joints are inflamed. Might do a couple of random blood sugars to see if they're wobbly. I only finished IV's like a month ago so I shouldn't be needing them, but they've marked me down as possibly needing a bed as something isn't right.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 7/14/2015 7:51 AM (GMT -6)   
Gemsi, I assume with a sat in teh 70's you are on oxygen? If not, you seriously need to get some! Brain damage starts happening below 88. Do you keep a POC around?

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/15/2015 5:02 PM (GMT -6)   
Wiley, I meant my lung function was sat in the 70's not my saturated oxygen. If it was my SPo2 that was in the 70's I'd be rushing myself to A+E. I never desaturate below 95%.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 7/17/2015 1:11 PM (GMT -6)   
OK, that makes a lot more sense. I desat quickly below 88 when I sleep and do any physical activity and have a few times measured high 70's and low 80's briefly, before I got the oxygen on... NOT fun. My FEV is hanging out in the low 40's now.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos
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