View Full Version : That's excessive!
Scratch
06-30-2008, 07:44 AM
New nurse this morning saw me before seeing my doctor today. I asked for the test strips RX to be refilled, she asked me how many times I test per day. I told her 8 to 12 times, usually 10 or more.
"That's excessive!"
Umm, no. I have to test before going to bed, test after waking up, test before meals and after meals, I'm fairly active so I often need to test to monitor my activity, I need to test before I go to drive a vehicle.
I said if doing so allows me to keep my HbA1c results between 5.6 and 6.0, then I'd very much like to be able to continue that even if it means my fingertips are always somewhat sore.
I felt very stern and I sort of lectured her. Aye yi yi.
DCaplinger
06-30-2008, 07:48 AM
Good for you. My doc wanted me to do 4 a day. When I told him I'd do it at least 6, he was happy. When I got my strips, he only filled it for 4, so I had to call in a request to get the order for 8 a day, just in case. Of course, I have extra, but it's better to have more than you need, than to run out when you need them.
I'm hoping to get in the 5 club in the next 6 months. Right now, I've gotta get below 8. Hehehe.
Regards,
Scratch
06-30-2008, 07:56 AM
I've had days where I've gotten by with 6 tests -- 1 upon waking up, 4 for 2 meals, and 1 before going to bed. I tend to think 6 are the bare minimum for intensive therapy like basal/bolus, definitely need 8 if you want the person to have 3 meals a day with pre- and post-meal testing.
But man, when that cure comes, I will not miss testing at all.
DCaplinger
06-30-2008, 08:18 AM
I totally agree with 8 a day, if you can remember to take it 2 hours after eating... that's my problem.
As far as a cure, I don't think we'll see one for Type 1, at least, not in my lifetime. I don't mean to sound pessimistic, but how do you cure something that's dead? However, there is always the transplant... that's the next best thing to a cure.
I agree there could be a cure for those who are going through the cell kill off, to keep the killing from occurring, but once they are gone, what is there to cure? The cells must be replaced. I've always been curious what is to keep the body from attacking transplanted cells. The answer, medication. So if we can take medication to keep our immune system from killing transplanted cells, then why can't we take that same medication to keep it from killing our own cells?
Regards,
Scratch
06-30-2008, 08:24 AM
Actually, there's very good evidence that the beta cells are constantly regenerating. Evidence of this is the fact that long term type 1s will still have low c-peptide values indicating trace insulin production along with Dr. Faustmann's research where the NOD mice were cured after the autoimmune attack was disrupted.
It very much looks like if a way is found to kill the killer T-cells, type 1 diabetics will be cured. There might be some complicated and difficult situations for some, but all that needs to be found is a way to get our immune systems to stop killing the beta cells that are regenerating.
Cormac_Doyle
06-30-2008, 08:33 AM
Foreign cells or tissue will trigger an immune response;
Similarly ... implanting new beta cells isn't going to help as long as you have large amounts of GAD antibodies ... the antibodies will destroy the new tissue.
Any T1 cure is dependent on two factors
1. Creation of new Beta cells that appear to be native to the host (these can be created via Stem Cells)
2. Disactivation/elimination of the GAD antibodies
gettingby
06-30-2008, 08:39 AM
If I told my endo that I was only checking 4 times a day, he would think I have lost my mind. He wrote my script for 8-10/day but sometimes I check more. Obsessive? Maybe. But in the long run, it's worth it !!!:D
Scratch
06-30-2008, 08:42 AM
Foreign cells or tissue will trigger an immune response;
Similarly ... implanting new beta cells isn't going to help as long as you have large amounts of GAD antibodies ... the antibodies will destroy the new tissue.
Any T1 cure is dependent on two factors
1. Creation of new Beta cells that appear to be native to the host (these can be created via Stem Cells)
2. Disactivation/elimination of the GAD antibodies
I'd say any cure is dependent upon fixing the immune system.
I think there is good strong evidence that if you do that, then the body will regenerate all the beta cells it needs, and those will obviously be native. Now if only we can keep the immune system thinking they're native if that can be done. It might be possible that if the immune system fixing idea works, then there'll be people who may have to be cure multiple times in their lives depending on how prone the immune system is to getting confused and attacking the beta cells.
Umm, no. I have to test before going to bed, test after waking up, test before meals and after meals, I'm fairly active so I often need to test to monitor my activity, I need to test before I go to drive a vehicle.
...and if you feel "off", and after correcting a hypo.
I said if doing so allows me to keep my HbA1c results between 5.6 and 6.0, then I'd very much like to be able to continue that even if it means my fingertips are always somewhat sore.
I felt very stern and I sort of lectured her. Aye yi yi.
Been there, done that;
Good for you!
Actually, there's very good evidence that the beta cells are constantly regenerating. Evidence of this is the fact that long term type 1s will still have low c-peptide values indicating trace insulin production along with Dr. Faustmann's research where the NOD mice were cured after the autoimmune attack was disrupted.
Interesting. I'd wondered why new beta cells wouldn't regenerate... and the above mechanism sounds more plausible.
FWIW, I think I'll have a fasting c-peptide run along with my A1c this coming Thursday. I'm curious to establish a baseline; although I suspect I know what the results will be, I'd like some hard data.
It very much looks like if a way is found to kill the killer T-cells, type 1 diabetics will be cured. There might be some complicated and difficult situations for some, but all that needs to be found is a way to get our immune systems to stop killing the beta cells that are regenerating.
...without shutting down the rest of the immune system.
A friend suggested that I might get a pancreas transplant. Uh, no. Even if it were affordable and I met the criteria, having to shut off my immune system does not sound enjoyable.
Subby
06-30-2008, 09:23 AM
New nurse this morning saw me before seeing my doctor today. I asked for the test strips RX to be refilled, she asked me how many times I test per day. I told her 8 to 12 times, usually 10 or more.
"That's excessive!"
---
I felt very stern and I sort of lectured her. Aye yi yi.
Good on you. I've often wondered, where is that button marked "Give short term type 1"?
The one that gives this person diabetes for a week and see how many tests they take, to maintain the same control and quality of life. Once faced with the complexity of walking that BG tightrope through all those fun, unique factors we all enjoy, I'm betting the attitude adjustment on being tight or pedantic with the strips would be pretty sudden.
sprzepiora
06-30-2008, 09:41 AM
I totally agree with 8 a day, if you can remember to take it 2 hours after eating... that's my problem.
I bought a Timex wrist watch, it has a timer function in it which has helped me to remember.
davef
06-30-2008, 09:44 AM
I wish that Nurses/Doctors would look at peoples results before they say the patient is doing it wrong. I can't believe any medical person would comment on how often a T1 tests, us T2's can get away with less testing but I as I understand it, that's not really sensible for a T1. Even as a T2, I test about 6 times daily so that I can remain in control. Good for you speaking up and holding your corner.
poodlebone
06-30-2008, 09:52 AM
New nurse this morning saw me before seeing my doctor today. I asked for the test strips RX to be refilled, she asked me how many times I test per day. I told her 8 to 12 times, usually 10 or more.
"That's excessive!"
My CDE thinks I test too much. "Obsessive" is the word she uses. I test a minimum of 10x a day but it's usually around 14. Every time she writes me a new prescription for strips she just kind of looks at it and shakes her head, but she's never refused to write for what I want.
I just started the CGMS and she said she hopes it will curb my obsessive testing.
I bought a Timex wrist watch, it has a timer function in it which has helped me to remember.
Frequent testing is habit-forming. For me, it's a matter of remembering that it's not yet time to test again. ;)
My CDE thinks I test too much. "Obsessive" is the word she uses. I test a minimum of 10x a day but it's usually around 14. Every time she writes me a new prescription for strips she just kind of looks at it and shakes her head, but she's never refused to write for what I want.
Hello, fellow member of the "5% club"! You don't have much "wiggle room" before going hypo. Testing and profiling is very important for tight control.
I wonder: Americans are more likely to drive automatic transmission-equipped vehicles than people from other countries. Is the pedantic/tight-control mindset better accepted in other parts of the world?
Scrabblechick
06-30-2008, 10:05 AM
I test 5-6 times per day. I know that's how I became a member of the 5 percent club! A T1 should be able to test whenever, for whatever reason. No questions asked.
Evermont
06-30-2008, 11:10 AM
I know of a T2 who tests 5-6 times per day. The thing is, he's not willing to do ANYTHING differently based on the test results. He'll happily gorge on some fries or potato chips, down a couple twinkies and a coke, then blink twice at the 322 on his meter and fetch a bowl of ice cream.
For this guy testing once per day is too many times.
It all depends on what you're willing to DO about the test results, not how many results you see.
shiftzor
06-30-2008, 11:17 AM
I test 5-6 times per day. I know that's how I became a member of the 5 percent club! A T1 should be able to test whenever, for whatever reason. No questions asked.
I totally agree, it annoys me every time a doctor gives me a comment like that. I have an average of 7 tests a day for the past 306 days and my control has only improved the more I test. I should test more often it’s just I can't get the strips, I will have to be dead set on getting them next time and refuse to leave until I get my prescription changed.
lilituc
06-30-2008, 12:42 PM
I only think it's obsessive if it *is* obsessive. I mean, if you're testing compulsively and not doing anything with the information, sure, but who does that? I wouldn't think many people. I think when people say you're being obsessive, they're often really just saying that they couldn't imagine testing that many times a day. But isn't it odd how they're generally the people who think your control should be better?
I love my endo, but her nurses are always kind of a crapshoot (and there's usually a new one every time). They usually ask me if I test my blood sugar (lol), how often I test (8-15 times a day), and then generally have a negative reaction to that. They say things like, "your control is so good, why are you testing so much?" It's like no one can put together that you have good control BECAUSE you test so often and they think that the only reason to test so much is if control is bad. Recently someone told me to say, "wow, your pancreas checks your blood sugar thousands of times daily, so your control must be really bad." (I think that's technically incorrect, though).
That reminds me, though, at my endo appointment last week, the nurse said, "hm, Type 1. So are you having any highs or lows?" :eek:
I know of a T2 who tests 5-6 times per day. The thing is, he's not willing to do ANYTHING differently based on the test results. He'll happily gorge on some fries or potato chips, down a couple twinkies and a coke, then blink twice at the 322 on his meter and fetch a bowl of ice cream.
Gah. I'd be angry -- with a capital "P" -- if I hit that. Since DX, I've gone above 300 once... and that was due to panic gorging during my first sub-60 excursion. (Yeah, I was only a couple days into this game. That mid-50s reading certainly seemed scary at the time!)
I only think it's obsessive if it *is* obsessive. I mean, if you're testing compulsively and not doing anything with the information, sure, but who does that? I wouldn't think many people. I think when people say you're being obsessive, they're often really just saying that they couldn't imagine testing that many times a day. But isn't it odd how they're generally the people who think your control should be better?
Interesting. I'd never bothered to draw the connection between the "you're obsessive" and "your control should be better" camps... but there is substantial overlap.
It's like no one can put together that you have good control BECAUSE you test so often and they think that the only reason to test so much is if control is bad.
Wasn't it Rockefeller who said something along the lines of, "That which is watched improves"?
Recently someone told me to say, "wow, your pancreas checks your blood sugar thousands of times daily, so your control must be really bad." (I think that's technically incorrect, though).
I like that.
That reminds me, though, at my endo appointment last week, the nurse said, "hm, Type 1. So are you having any highs or lows?" :eek:
*blinks*
*blinks again*
shiftzor
06-30-2008, 01:35 PM
That reminds me, though, at my endo appointment last week, the nurse said, "hm, Type 1. So are you having any highs or lows?" :eek:
You should inform her that you usualy enjoy a spot of golf however when confronted with questions like this you feel a bit down.
It all depends on what you're willing to DO about the test results, not how many results you see.
I agree with what you are saying.
I don't know how much I could do with 12 test results. When I test, I gain information about the next time I eat - to not eat or eat more - depending on the test.
Therefore, I maybe do 4 tests per day. Prior to breakfast to see how night worked out and see if I need a bit overage to cover, plus I do the basal lantus at breakfast. Then I do lunch, but rarely test then as I am at work, but usually I cover enough so that if I feel a bit low, I can cover with a bit of snack. Then dinner - to see how my guessing went since lunch. Sometimes I check at bed time to see if there is correction needed. But I test so that I can see what I need to do - that is the purpose of testing.
Also, has anyone checked what insurance costs for test strips? For me, the test strips are the most expensive insurance item covered - just huge moneymaker for Lifescan and others. They are more expensive than my insulins and syringes combined. Therefore, I want to conserve (a bit scotch/irish here). After all - you guys that test willy nilly 12 times per day are the ones driving my insurance costs beyond affordability for me and others. Oh, well - if I can't afford testing, I take insulin and try to see what I can do, and then... I die. btw, that ain't happenin' soon.
What did you guys do when strips were not around? - i.e. testape - ahhh, the good old days... or the test tube and reagent tabs - even better...
After all - you guys that test willy nilly 12 times per day are the ones driving my insurance costs beyond affordability for me and others. Oh, well - if I can't afford testing, I take insulin and try to see what I can do, and then... I die. btw, that ain't happenin' soon.
That's offensive on at least two counts:
"Willy nilly"? Perhaps that is valuable information used to profile meals, correct more frequently, et cetera. Perhaps that prevents long-term complications, which have their own costs.
Consider that their are uninsured people who pay for test strips out-of-pocket. Maybe your "disaster" scenario is already reality for others.
What did you guys do when strips were not around? - i.e. testape - ahhh, the good old days... or the test tube and reagent tabs - even better...
As a recently-DXed person, I can only speculate that I'd have had to run my blood sugar higher... risking more long-term complications. Perhaps the historical track record from that approach is a reason that diabetes is such a black mark amongst insurers.
The uninsured among us could counter with, "You folks who only test a few times per day, have higher A1c readings, and more long-term complications are the ones who have made diabetes so expensive to insure."
And precisely where does that get us? I posit that waging war on fellow diabetics is divisive and accomplishes nothing productive.
Consider the goal: Living as "normal" of a life as possible, with a minimum of complications. If you can do that with less testing, great. I'd love to get there. Until then... I test frequently, and remain uninsured.
TenderVittleS
06-30-2008, 11:07 PM
I agree with what you are saying.
I don't know how much I could do with 12 test results. When I test, I gain information about the next time I eat - to not eat or eat more - depending on the test.
Therefore, I maybe do 4 tests per day. Prior to breakfast to see how night worked out and see if I need a bit overage to cover, plus I do the basal lantus at breakfast. Then I do lunch, but rarely test then as I am at work, but usually I cover enough so that if I feel a bit low, I can cover with a bit of snack. Then dinner - to see how my guessing went since lunch. Sometimes I check at bed time to see if there is correction needed. But I test so that I can see what I need to do - that is the purpose of testing.
Also, has anyone checked what insurance costs for test strips? For me, the test strips are the most expensive insurance item covered - just huge moneymaker for Lifescan and others. They are more expensive than my insulins and syringes combined. Therefore, I want to conserve (a bit scotch/irish here). After all - you guys that test willy nilly 12 times per day are the ones driving my insurance costs beyond affordability for me and others. Oh, well - if I can't afford testing, I take insulin and try to see what I can do, and then... I die. btw, that ain't happenin' soon.
What did you guys do when strips were not around? - i.e. testape - ahhh, the good old days... or the test tube and reagent tabs - even better...
Yeah I'm sure the complications from non-controlled diabetes aren't driving up your insurance costs either, jeez!:confused:
KarenBC
06-30-2008, 11:15 PM
Even as a T2, I test about 6 times daily so that I can remain in control.
Thank you davef - I was wondering if I was being excessive in testing 4-6 times a day as a T2, so it's good to hear that other type 2's test this often. It sure helps to keep a good check on what types of things cause or don't cause a spike.
I've noticed that if I feel like I'm not being as in control as I'd like to be...I'll do the ostrich thing for a few hours...and not test. Then I tell myself grow up and get on with it, and it's usually not as bad as I was fearing to start with. Humans!
viranth
06-30-2008, 11:50 PM
I have no limits on how many I can test per day, so I'm at about 8-10.
Now that I've been sick, I tested maybe every hour, so my fingers got a beating there for a few days. But now that it seems things are starting to go back to normal, I test every 3 hours.
If I feel different or if as I'm going low, I test.
People may call it obsessive or whatever they want, but whoever says that chances are they don't have diabetes. I want to be in control, and not let the BG take control of me.
In response to the very first post!!
I GET THAT ALL THE TIME!!!!!!! I also test 8-10 times a day!
grrr...I also kinda start the whole...well I need to test before this, after this, when I do this, if I'm low...blah blah blah.
gesh! some people =P
Subby
07-01-2008, 07:32 AM
What did you guys do when strips were not around?
Um... die faster?
LancetChick
07-01-2008, 10:46 AM
After all - you guys that test willy nilly 12 times per day are the ones driving my insurance costs beyond affordability for me and others.
What an a$$. When I was testing as infrequently as you test, my blood sugars fluctuated quite dramatically, and even though my A1c's were in the low 6's, I had blurry vision with constant floaters and a recurring blind spot, frozen shoulder that wouldn't allow me to back my truck up without extreme pain or sleep in a comfortable position, and arthritis that drove me nuts. Now I test 15x a day (roughly every hour that I'm awake, and sometimes more often than that), I log everything that affects my blood sugar, and my A1c is in the 4's, my blood sugar is stable and I have REVERSED the retinopathy, frozen shoulder and arthritis. There is no way in **** that I am going to go back to suffering the effects of diabetic complications just so that you can save some money.
Oh, and good luck with complications yourself. Hope you have good genes!
poodlebone
07-01-2008, 11:14 AM
When I tested less frequently (5-6 times a day) I'd miss those sudden lows I'd get. Believe me, the cost of an ambulance ride & ER visit can buy a whole lot of test strips. Some people might be able to "guess" at insulin doses but I'm very sensitive to insulin and am hypo unaware. I'll test as much as I feel I need to.
Consider that their are
Ack! That should have been "there", not "their". Bad Eddy!
Petruchio
07-01-2008, 11:21 AM
I am a T2.
I know T2s can test less and get away with it. I still test 5 times a day.
Fasting
2hrs after Breakfast
Before Dinner
2hrs after Dinner
Bedtime
Finally, I am getting control of my numbers. The 2 hour tests tell me how the meal effected me. Then I know if I can eat that meal or not.
Testing = Living
Yeah I'm sure the complications from non-controlled diabetes aren't driving up your insurance costs either
Nope - not my insurance nor your insurance.
I have been doing insulin for 34 years - since age 22 - I try to keep my visits to the "professionals" to a minimum. No major medical stuff here - I try to stay away from the guys that want to practice on me (medical practice?).
I am still appalled at the cost of strips - just an amazing cost item that doesn't do as much as insulin or a syringe does. Keeping in touch with what your body feels like and is telling you can do almost as much in terms of information as a test strip - cost? - a bit of learned sensitivity and carefulness. That is the type of cost I can live with - insured or uninsured.
Also, I am sorry that you understood what I said as offensive, Eddy. Please forgive me for providing offensive material toward you. Thanks.
I am still appalled at the cost of strips - just an amazing cost item that doesn't do as much as insulin or a syringe does.
Yes...
Keeping in touch with what your body feels like and is telling you can do almost as much in terms of information as a test strip - cost? - a bit of learned sensitivity and carefulness. That is the type of cost I can live with - insured or uninsured.
I'd like to get to that point. And, many times, my guesses are spot-on, within 5 mg/dL. Alas, enough times I'm wrong that I'd have shot a unit or two of insulin when I was at 70 (destination: 35 or lower), or sugared up when I was at 150. I still need the hard data feedback.
Also, I am sorry that you understood what I said as offensive, Eddy. Please forgive me for providing offensive material toward you. Thanks.
Thanks. Not sure what else to say, but thanks.
P.S.: It seemed to be a hornet's nest in general for those who test frequently.
vulnerable26
07-02-2008, 05:23 AM
My last doctor would refuse to write me a script out for any more than 3! I explained to her many times I do not feel comfortable taking the amount of insulin you say I should take with only 3 strips a day. So i ended up buying them out of pocket, and you know how pricey that can be!
When I got my new Dr she wrote me a script for 10 times a day I didn't even ask. I told her my last Dr only would give me 3 and she got upset and said "why would someone want to punish you for taking care of yourself, I want my patients to test how many times they want to, that is why I always write a script for 10 a day, if they want more than that is great!"
I really do not understand why Drs and insurance companys are refusing to pay or write scripts for testing a lot. You think they would rather pay for the test strips then pay for the complications later!
Subby
07-02-2008, 08:44 AM
Keeping in touch with what your body feels like and is telling you can do almost as much in terms of information as a test strip - cost? - a bit of learned sensitivity and carefulness. That is the type of cost I can live with - insured or uninsured.
Evidently, you've hit a really good source of information, to make such grandiose claims for every other diabetic out there as to how their diabetes interacts with their body. They all get these dependable warning signs that will provide equal information to 4+ BG tests, right?
Oh, hang on. Have a look around - ANYWHERE - and you'll find out that some diabetics get similar effects going up OR down. Some don't feel a thing until they are close to DKA. Some diabetics feel fine sitting high as a kite for years on end (and the end draws nigh...). Many will feel the effects only once they have moved out of ordinary range and its too late to correct and maintain good control.
Hang on, there is just a little of that information in this thread, right after your post. Congratulations on holding onto your bitter, miserly little theory despite information right under your nose.
shiftzor
07-02-2008, 08:55 AM
Nope - not my insurance nor your insurance.
I have been doing insulin for 34 years - since age 22 - I try to keep my visits to the "professionals" to a minimum. No major medical stuff here - I try to stay away from the guys that want to practice on me (medical practice?).
I am still appalled at the cost of strips - just an amazing cost item that doesn't do as much as insulin or a syringe does. Keeping in touch with what your body feels like and is telling you can do almost as much in terms of information as a test strip - cost? - a bit of learned sensitivity and carefulness. That is the type of cost I can live with - insured or uninsured.
Also, I am sorry that you understood what I said as offensive, Eddy. Please forgive me for providing offensive material toward you. Thanks.
I don't really understand what the costs have to do with anything, yes you may have to pay towards them and yes your insurance may have to pay for them but it doesn't mean your health should suffer because of it. Your health is worth billion times more than anything money can buy. You only have your health once. You of all people should know that better than most, losing your health is not something you can recover from. Look at how diabetes affects your health, what is so different about diabetic complications? Yes you may not have all of your health but you should at least try to hang on to what you have left.
Cloudedbrains
07-02-2008, 02:41 PM
If I relied on my body to tell me how my diabetes was doing - I'd be dead right now :(
I have several other serious health conditions besides diabetes, in fact the treatment for one caused the diabetes, and because of medicatins fot the others I dont feel hypo's or high's at all - without testing many times a day I would be in big trouble :o
But through regular testing I have gained control and got my hba1c down from 13.7 to 5.3% in under 2 yrs :)
So listening to your body works for you, please dont assume it will work for everyone !!
UpNorth
07-02-2008, 03:23 PM
Hello, fellow member of the "5% club"! You don't have much "wiggle room" before going hypo. Testing and profiling is very important for tight control.
I wonder: Americans are more likely to drive automatic transmission-equipped vehicles than people from other countries. Is the pedantic/tight-control mindset better accepted in other parts of the world?
I'm a control person, so i drive a manual car :T And if i tell my doctor i test more than 10 times per day, i'll just get the answer "just test as much as you feel you need" I'm usually testing at least 6 but mostly 10-12 times daily... If i'm having one of those rare "i don't want to have diabetes" days, i might just test in the morning, before lunch, before dinner and before bed and guess the rest of the day... Quite often I just feel what range i'm in and when i test then, my feelings can be quite spot on or at least close enough.
wastcougr
07-02-2008, 04:41 PM
That reminds me, though, at my endo appointment last week, the nurse said, "hm, Type 1. So are you having any highs or lows?" :eek:
OMG. That makes my blood boil... I had a similar experience with some form I was filling out at my DOCTOR'S OFFICE a few years ago (I no longer see that doctor, although I doubt it was HER form alone). You were supposed to mark which ailments you currently had, and they had, "Diabetes (High Blood Sugar)" on the form. I wrote in, "And LOW blood sugar, too! Diabetics get the fun of BOTH!!!" I was angry enough about it that I pointed it out to the unsuspecting and innocent receptionist that felt, I'm sure, now that I reflect on the situation, like a deer caught in the headlights of an oncoming freight train at full-speed. :motz: Oh well.
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