CFRD symptoms?

[abloedel]

Hi All:

I did a search but really couldn't find a thread on what I was looking for (probably me so sorry if I'm rehashing old info)...BUT...I was wondering, what are the symptoms of CFRD in adults? I am pancreatic insufficient, currently take enzymes, but lately am starving again about 30 minutes after I eat, get lots of headaches, have night sweats, and have other symptoms that are not "normal" for me. Losing weight too, but wouldn't say "rapid" weight loss...maybe 3-4lbs a week.

I'm on antibiotics (again - haven't been off of them for longer than a 5 week stretch this year), but I don't think these are causing my new symptoms. (am currently taking Doxycycline)

Just wondering if there's a list for CFRD symptoms somewhere as most of what I can find is Type 2 diabetes, which I understand to be quite different.

As always, any help or direction is appreciated!

Thanks - Amy

36 w/CF

 

[johngwisc]

A quick google search brought up this handy informational page:

< <a target=new class=ftalternatingbarlinklarge href="http://www.diabetesuffolk.com/Complications/Cystic%20fibrosis.asp">http://www.diabetesuffolk.com/Complications/Cystic%20fibrosis.asp</a> >

Of course, ask your doctor. Good luck.

 

[miesl]

I was just at a CF conference, and I have a list of the symptoms at home.

I know that excessive thirst and urination is one of the more serious symptoms.

When was the last time you had a oral glucose tolerance test? Do you have a glucose meter? If so, what is your fasting blood sugar?

-Michelle

 

[abloedel]

Thanks for the link...that was some good information to have.

I think the only time I ever had an oral glucose tolerance test was when I was pregnant with my daughter (17 years ago). Is that a test I should ask for?

Thanks

Amy

 

[miesl]

Your clinic doesn't do the ogtt? Ours includes it in the yearly studies. I think they start testing people when they're 8-14, earlier if they have symptoms.

I would say to ask your clinic at the next visit.

 

[anonymous]

I was just diagnosed in March with CF...so still learning what tests I should ask for and what's normal/not normal for me.

I will ask for one next time I go to clinic!

Thanks...

And, sorry - I forgot to sign in...

Amy

 

[candigirl]

I was diagnosed with cfrd in 1996 I was 19 I think... anyways one of the symptoms I had was really bad leg cramps at night for about the first two weeks, then thirst, frequent urination... and i was very irritable for no reason. One night I started to have the worst stomach cramps that felt like my period had came, but I knew I just had it and knew that was not it . So I went to the emergency room, they said the pains was the sugar spilling over into my urine. My blood sugars were 700 and something..... those are just a few of the symptoms that I can remember so I hope that this information will help you out . good luck Candi

 

[anonymous]

Hi,
as some of your symptoms could be because of diabetes, you should call your doctor as soon as possible and ask for testing it. There are also blood tests they can do plus the oral glucose tolerance test. Better not to wait until your regular visit when loosing weight and feeling bad .

Uli, Germany, 43, cf/cfrd

 

[miesl]

After looking at my conference materials, I have to side with Uli... you should call your clinic.

Unexplained weight loss is a symptom of CFRD. Other symptoms are a drop in PFTs, increased thirst and increased urination. The other symptoms they list are ones that apply to growing kids.

If you're losing 3-4 lbs a week, and you're eating the same or more... it's probably bad.

-Michelle

 

[Dea]

When I was diagnosed with CF related diabetes 7 1/2 years ago...I also was losing weight fast. I dropped 10 pounds in one week...UGGHH! I also was very thirsty and had frequent urination. I also was very very tired alot. My symptoms went on for a couple of weeks before I went to the doctor. The symptoms are pretty much the same as a "normal" diabetic, however the way of treating it is different. But if you worry at all...you should definitely call the doctor...and be checked! The test is the glucose tolerance test...the same test you took when you were pregnant. I agree not to wait until your next clinic date...you should call the doctor and let him know that you are concerned about it. Good Luck and Take Care!
Dea
32 w/CF and CFRD

 

[abloedel]

Thanks for everyone's responses...I have an e-mail into my clinic nurse now, so I'll update you all once I hear back from her!


Amy

36 w/CF

 

[anonymous]

Get to go in for a glucose tolerance test next week....woohoo....sounds fun....NOT! Anyway, they did tell me they've only done one random on me (blood work) and it was normal, but that "doesn't mean I don't have CFRD". Guess it doesn't mean I do either...so, I'm sure like every other test known to CF kind, the results won't be immediately available, so...once I get those, I'll post again!



Amy

36 w/CF (sorry - forgot to login again)

 

[JazzysMom]

Enjoy the cocktail for the test>>>LOL. Its good that you are having it done. Better safe then sorry. It took a good 10 days for my doctor to get the results, but I had the test done by me (way up in the country) & my doctor is in the city so I dont know if that delayed it or not.

 

[abloedel]

I hope it doesn't take that long...but, I know on some of my specimens...it's usually at least that long before we get any results...ugh! Anyway, the clinic nurse said it could explain nearly all of my strange new symptoms. The strangest one (to me anyway) seems to be that if I don't eat dinner that night before, then I puke til noon the next day (as I'm doing yet again...4th time in 3 weeks) and no...I'm NOT pregnant! (To those who want to be - sending you fertility vibes). I didn't eat dinner last night because my stomach was killing me! My stomach doesn't hurt now, except for when I puke.

Amy

36 w/CF

 

[abloedel]

Been a fun week with my stomach and puking and all. We tested for pancreatitis via a blood sample. Amylase levels normal, Lipase was low...so ruled out pancreatitis.

I am going tomorrow (Friday) for my glucose tolerance test. Wish me luck. I know I'll be feeling terrible after not eating or drinking for so long, and then having them take blood on top of that! I hope we can figure out what's causing these symptoms I am having though!

On a positive note, I finished my last round of IV antibiotics about a month ago, and my PFT's had only bounced back to high 40s to low 50s. We have now added a daily xopenex treatment to the mix, and my PFT's are now in the high 50s and seem to still be climbing!

Amy
36 w/CF

 

[abloedel]

I had my glucose tolerance test yesterday...basically, they told me I'm definitely insulin resistant, but not yet so badly that they can give me insulin. Apparently your levels have to be at 200, and mine were at 177...so, I'll begin monitoring my glucose levels daily, trying to eat every two hours to keep glucose levels more even, and we'll repeat the test in 3-6 months, depending on what my daily monitoring shows. That test sucked...I nearly passed out at the end of it, thought I was going to puke through most of it (did when it was over), and one of the techs had to stick me 8 times to get one of the blood draws. REALLY looking forward to a repeat. Today I look like an IV drug abuser since my arms are so bruised from all of the sticks and blood draws.

Does someone with "insulin resistance" always progress to CFRD? If so, are there things I can do to slow the progress?

As far as my stomach problems, with the exception of the above, they have pretty much ruled out the remaining basic CF related stomach problems, but the nurses at the clinic told me we are getting a GI specialist, so as soon as he/she starts, I'll be one of the first ones to see him/her.