"Mandatory" glucose tolerance testing?

[SaraNoH]

Okay, obviously not really "mandatory" but it sure feels like it. I had an appt at the CF clinic yesterday and was told off by the RT for not doing the glucose tolerance test they had ordered a few months before. Why? Because the last test I did was a DISASTER, like horrifically, emotionally scarring, and I refuse to do another for awhile. I was told then that my clinic is starting to order "mandatory" glucose tests every year for anyone over the age of 14. I've never heard of this ever so I wanted to know if anyone else has had. Apparently the foundation is wanting the clinics to do so?

A big reason I'm against the constant testing is because I'm worried, so some level, that the constant bombardment of high levels of glucose is going to do something to my pancreas (I know, I know, it's counter productive and it most likely doesn't but still, it makes me uneasy). I asked if I could just monitor my sugars periodically and report back, to which the doctor said she was okay with, so I'm thinking I'll do that for awhile. I just really, really, really hate that test and am not 100% trusting of the clinic I go to.

 

[BikerEd]

Okay, 1) where do you go that you have trust issues (that’s a problem right there) 2) Mandatory – really please explain to me what part of my CF diagnosis made me your slave. 3) If they are saying the foundation is demanding it tell them to kiss your ass. I was a “lab rat” for years and never once was it a demand by the foundation, a request from the foundation, a request from a clinic for a study, but demand? Never. That being said the Foundation, my doctor, my clinic could demand that I stay home for a week and ride my motorcycle, drink beer and hang out with my friends, while never turning off football or baseball, you’d find this guy pulling weeds and mowing the lawn (oh I hate yard work, unless it’s my veggie garden). But all seriousness you need to have a conversation with you CF doc, and you Primary GP if you have one and come to an agreement to what you want from you treatment and what your willing to sacrifice for your treatment. Well that’s my two cents. Best of luck.

 

[Printer]

Glucose will not hurt your pancreatis but mucus will. They want to test you for CFRD. If you have a pancreatis problem (mucus building up on the pancreasis) then you are on track for CFRD. You are NOT doing yourself a favor to refuse this test.

I know, been there, done that.

Bill

 

[Mammahuff]

At our clinic they started testing at 10 years. I'm actually glad they do that. I think it will help in the long run being proactive.

 

[Ratatosk]

DS gets glucose testing each year, but hasn't had the glucose tolerance test yet. My friends whose kids go to U of MN and are about the same age 7-10 years old, just started having it done.

 

[LINDASTAYINALIVE]

You have the right to REFUSE any test you want, I do it all the time. It pisses my docs off, but it's me going through these tests not them. The sugar water makes me feel so sick, I hate it! Just remember it's your life and you have rights to your body. Good luck!

 

[dsheldon]

They started doing "mandatory" glucose testing at the CF center I go to about 7 or 8 years back, and I'm very glad they did, because the second time I had it done, I tested postitive for CFRD. I would never have suspected myself (in fact, ironically, that test was rescheduled at the last minute and I jokingly said to my mom as we were leaving "ha, I probably have diabetes and they just pushed back treating me for it!"), and it wasn't severe enough at the time that I would have noticed much based on at-home glucose monitoring. Of course you can refuse any test, as LINDASTAYINALIVE mentioned, but it is to your absolute benefit to have it done, just like any other "mandatory" blood test or spirometry testing. And as for your fear of the glucose from the test affecting your pancreas, well, if you DO have diabetes, then you've got that glucose bombardment constantly!

 

[BreathinSteven]

I agree that they're probably concerned about CFRD... I believe that they now want to catch that earlier, or catch that you're headed in that direction, to see whether they can do anything about it before you're diabetic... One of the bad effects of constant high blood sugars is that it can help infections flourish... I'm post lung transplant and when I was transplanted, 12 years ago, they didn't pay as close attention to high sugars and early diabetes -- now they're all over it immediately post surgery. Constant high blood sugars inhibit healing, and add fuel to a growing infection -- both not good things when our lungs are generally harboring infection...

I agree with lindastayinalive, to an extent... We do have the right to refuse any test or treatment. We also have to be wary of pissing our docs and clinics off too much. We're bound to piss them off now and then -- but where we have to be wary is if it becomes a consistant part of our charts -- or if we regularly get notations that we're doing things, or not doing things AMA / against medical advice... If you ultimately need a lung transplant -- the center you're considering, the center that is evaluating you as a candidate, may look at that and deem you to be a non-compliant patient... I've been aware of patients who have not been listed at centers because of that -- so you do have rights to your body and what you do with it, or have done to it, but be aware that those rights come with responsibilities and consequences...

I know it's a pain in the fanny -- maybe you could negotiate with them to do it every other year or something like that... I hope you get what you want... Love, Steve

 

[Printer]

You have the right to refuse any test but you need to know that you do so at your own peril.

CYSTIC FIBROSIS RELATED DIABETIS is no joke, and you could pay a very dear price for your refusal.

Bill

 

[Ratatosk]

You have the right to refuse any test, but IMO this is an important test to have. You also have a right not to be tortured during a procedure. DS has a terrible fear of needles so we DO ask that the techs be patient and kind. DH always reminds me that we are the customers, that we pay for this service and therefore shouldn't have to put up with rudeness and inferior care.

 

[bigstar]

I feel like a rat lab as well so i justify your anger and refusal totally! I used to have the same fears as well:
-I was afraid of needles - God i still am
-I was worried about the results
-I felt i was being tortured with this whole procedure
-i thought that all this sugar was causing me harm

But i had to get used to it. The procedure has now been a little simplified. They draw blood just twice. Once before you drink the glucose and once after 2 hours. Because when i first started doing the test they did it every half an hour (4-5 times) which is horrific. Moreover my doctor suggested that i replace the glucose which made me vomit, with the refreshment Lucozade which is actually pleasantly drinkable. Plus i try to relax, get it out of my mind, do other test at the meantime so that my anxiety doesnt affect the results. The first time they did it to me i kept crying the whole 2 hours and the results where borderline but havent been again since then. Thats my two cents.

PS I still feel like a rat lab when they make me do DEXA scan every year. I live in Greece and i sunbathe 3 months a year. I take Vit D supplements as well so its higly unlikely that i have signs of osteoporosis on the age of 23. Too much radiation for nothing.

 

[BikerEd]

Bigstar:

What’s a DEXA scan? Also I don’t mind a Glucose test once a year, I’m border line. And do “random” testing of my sugars once a month, By random I throw a dart at a dartboard and the number I hit is the date I start testing for a week, 3 times a day once before I eat, once after at (or close) 30 minutes and then again, once to one and a half hours. Oh, those testing are random throughout the day (again dartboard).

 

[TheDude92]

I'll be the first to admit that it is one of my least favorite tests to do. I make clear to them though I'll drink the syurp if they draw it through my port. Really they do not object that request. I say make request's to them that will make you at ease with them doing the test. If you have a implanted port ask them to draw it through there if you are leery of perifial blood draws but just don't refuse the test because of one bad experience. Your running more of a risk not taking the test and getting checked for CFRD on a yearly basis then just blowing it off completely.

 

[SaraNoH]

I don't have any problems with needles etc (but the next person who tries to draw blood from my wrist will get punched in the face). My big reason for not wanting the test RIGHT NOW is because I had a faulty one done summer 2011 at the hospital. Basically the test was done incorrectly and they misdiagnosed me with CFRD and the next 24 hours was insane, trying to figure out if I really did have it, who messed up, who we needed to talk to etc. I hadn't even told my parents yet and the diabetes education nurse came in with a fresh needle and bottle of insulin and plopped down in front me, talking all cheerily when I'm all of 18 and trying to handle the majority of my medical crap.

I'll do the test, just not now. Maybe next year or so when I'm done with school and get settled. I was just put off by the whole, "well if patients don't comply with what we say the foundation dings us and it makes us look bad" thing. We left the clinic a long time ago for a reason, and I'm not going back because I want to. I can't see my pulmonologist anymore because I'm too old and the clinic is my only choice. So sometimes I feel like a second-class customer because I haven't been "loyal", thus the lack of trust on my part.

 

[Printer]

Sara, you tell them. Who the hell do they think they are? If you have CFRD or if you get CFRD that is your business and if you die, you die. Someone will post a notice here asking that we will pray for you and you will have a nice funeral. Your friends will all say how wonderful you were. They will talk about the great fight that you put up befure CYSTIC FIBROSIS KILLED YOU.

Whatever you do, don't tell your parents. They may want you to live and at age 18 you are smarter than they are. Hell you are smarter than everyone.

My question is, why did you post here? You know more than all of us.

 

[bigstar]

Printer please dont be ironic please. I really sympathize with the pain the panic and the denial. Sara if you have your doubts ask them to repeat the test. Ask for nurses and doctors who can actually be cooperative and talkative. Explore every possibility, you have the rught to know, you have a right to the best treatment available.

 

[LouLou]

Here are some things I do to make the OGTT easier:
1) It is hard and time consuming, try it with a kid...not worth the hassle so although I like to hire babysitters for more fun stuff than OGTT, I suggest hiring a babysitter so you can make it all about you.
2) Bring a sweatshirt, a pillow and a book. And juice and a protein snack (peanut butter crackers) for afterwards - leave it in the car so you won't be tempted.
3) Don't get it done at clinic. Get the order (make sure they write how many MG's of glucose they want you to drink so there will be no question).
4) Make an appt for first thing in the morning by your home at questdiagnostics.com
5) Report for the appt. and request blood be drawn from a butterfly.
6) I go out to my car and make sure to report back in at least 5 minutes before my next scheduled draw. Don't rely on them to remember you, though they will have an alarm that will go off in the back to come get you. I go up to the window and tell them I am due at X time to be drawn so they call me back in time.
7) After it's all done...treat yourself - go out to lunch, get a pedicure, what ever will make you happy. You have done well!

 

[Printer]

Bigstar:

I think the word that you are looking for is SARCASTIC not IRONIC.

Bill

 

[SaraNoH]

Sara, you tell them. Who the hell do they think they are? If you have CFRD or if you get CFRD that is your business and if you die, you die. Someone will post a notice here asking that we will pray for you and you will have a nice funeral. Your friends will all say how wonderful you were. They will talk about the great fight that you put up befure CYSTIC FIBROSIS KILLED YOU.

Whatever you do, don't tell your parents. They may want you to live and at age 18 you are smarter than they are. Hell you are smarter than everyone.

My question is, why did you post here? You know more than all of us.

Dude, what the hell is your problem? You're just making yourself look like an ass and people don't appreciate it. Not everyone has "I'm in the CF club" tattooed to their foreheads so chill. It's sad to see that a stupid disease can turn someone so bitter.

Thanks for the replies from everyone else though. There's just some things you want to discuss with others who get what it's like.

 

[Printer]

Sara:

I was right, you are smarter than everyone. God bless you.

Bill (not Dude, he is the other guy)