Veterans vs. noobs


#41

Well said, David.

And IHOP is a great place to get pancakes. :grin:


#42

I[quote=“Dave26, post:36, topic:57589”]
I won’t consider the trial valid for passage to vethood unless he ditches the glucometer and sticks to pee strips for testing as well. :wink:
[/quote]

Well, to be fair, the two shots of R and NPH per day stuck around for a good 15-20 years after glucose meters became available. So I don’t think one necessarily needs to use Dark Ages technology to get the full experience. But limiting testing to four times a day would be good (no one tested between meals or overnight back then).


#43

I think I’m becoming convinced to actually give this a go. I have everything I need and nothing but time on my hands. Just trying to identify the goals and rules of the experiment…

And it would give me a good excuse to rotate my stock of R and NPH a bit


#44

I think I got my first one about 3-4 years in, maybe 1986 or thereabouts. So yeah. But I think we do have to take a hard line on carb counting. None of that stuff before Lantus/Novolog MDI. Exchange diet all the way!


#45

3 bread
3 meat
1 milk
2 fruit
2 free


#46

Yes, no carb counting, and no corrective shots between meals. If you screwed up at breakfast and ended up at 300, you didn’t get any additional insulin until dinner. And that was a sliding scale correction, no correction factor.


#47

And yet somehow all of those who did this archaic protocol for so many years are the ones who are now in old age and the increased longevity data is coming from. Maybe someday 50 years from now we will look back and realize we had it all wrong and they were doing it better all those years


#48

I don’t think it was better. I had pretty tight control all along, keeping my A1c around 7% (so, if I’d been in the DCCT, I would have been the tight control group), but it came at the expense of one or more severe lows each year (“severe” meaning I needed help). I’m in my 30s now and, while I don’t have any diagnosed complications, I’m definitely not as healthy as most of my peers. I’m also the only one that I know of, out of the cohort of kids I grew up with, who has no complications. (I also suspect the only reason I don’t have retinopathy is because my retinas are severely damaged to begin with and don’t have a normal blood vessel structure.)


#49

My endo says that in professional circles there has indeed been debate whether MDI is worth the effort and expense over R/NPH in light of of emerging long-term data showing they aren’t markedly different in terms of outcomes. I pointed out that this is true only because quality of life isn’t considered an “outcome”–they’re certainly different in terms of what they’re like to live with. She said she would quote me on R/NPH as the “Eat now or die!” regimen next time she’s in on one of those discussions.


#50

I agree about quality of life. Overall, A1c levels haven’t improved much, but then recently there’s been debate about how reflective of control that really is. The biggest difference is that life was utterly regimented. I didn’t experience my first skipped meal or sleep in on a Saturday until I was in my mid 20s. And if R and NPH were still common, these forums would be filled with people asking about strategies for being able to eat brunch with friends or eat a late dinner because they wanted to attend an early event of some sort. Not to mention, nasty low would be much, much more common. You don’t often hear about people being unable to be woken in the morning, but when I was a kid and teenager such things were common.


#51

My daughter was diagnosed only about 3 years ago; even with the pretty amazing technology we utilize (Dexcom, pump with “rapid” acting insulin analogues), managing her T1D is a constant and sometimes draining process. I sleep through the night only 5 nights per year, when she is at D-camp. The remainder of the time, I attempt to manage her BG levels constantly, remotely when she is not physically in my presence.

I cannot even begin to imagine (and TBH, don’t want to even try to imagine) what this endeavor would have been like in the not-so-distant pre-Dexcom/R/NPH days. My hat is forever off to Jen’s parents and all the other “back-in-the-day” parents of children with T1D!


#52

Well that’s always the problem… quality of life is impossible to quantify in terms of expense… particularly when a third party is paying for it… and it’s all relative as well and a matter of perspective.

I have no doubt that my quality of life would improve if everyone who reads this mailed me their life savings-- but that doesn’t make it a reasonable request does it?

Ultimately each of us as individuals are best equipped to make those decisions ourselves within our own priorities— unfortunately the system that exists is based on driving the costs sky high out of the reach of the end consumer and then requiring a third party payer— a model with a lot of these problems


#53

In BC (and perhaps other Canadian provinces), insulin analogues are only partially covered because of that very argument. There’s been no proof (in the literature) that it’s worth the extra expense, so if people want to use them, they have to pay 30% of the cost (as opposed to getting the older insulins at no cost). Having said that, Lantus is (to my knowledge) 100% covered, and the same may also be true of Levemir, perhaps because studies have shown that NPH has something like a 50% variable rate of absorption…

I think costs do even out. If you pay more up-front, it’s very likely to reduce costs later on or reduce other costs. Have there been any studied looking at the rates of severe hypoglycemia requiring 911 and/or hospital visits? I"m guessing that’s reduced substantially in the past 10-20 years compared to 20-40 years ago. Also, I think that the insulin analogues are probably the reason that most of us long-term people on this forum do not have serious complications like kidney failure or severe vision loss. Who’s to say that this would be the same outcome if we had all stayed on R and NPH rather than switching over for the past 15-20 years?


#54

It’s hard for a vet, because we remember so much about past care. Test Tape, Clinistrips, Lente insulin, successfully having a child before home blood testing was available, not to mention no A1Cs, glass syringes with steel needles that had to be sterilized between use, being a teen before diet soda was offered and no disposable syringes…

I was ten at diagnosis in 1962 and Christmas will be 55 years. My perspective comes from years of experience, some good, some bad. I have had a very different experience as a T1 from most of the Tu folks…longevity only.

Hopefully my experience will help the newly diagnosed.


#55

Well this has turned into one of those good ol’ days threads so I will chime in because it is fun. :slight_smile: I am closing in on being a 30 year noob.

I am with Jen that on the two shots a day R/NPH regime Sam should qualify for a glucometer, but you can only get one that takes 60 seconds to test. You will need a large lancet to get enough blood to cover the entire test strip pad and at 23 seconds you get a beep so that at 20 seconds you blot that test strip on tour blotting paper. At that point you pretty much know the result based on the shade of blue the test strip turned. And with the size of the meter you need a huge case (i still have my case for my Glucoscan 2000).

I had suprisingly good control on R/NPH and the exchanged diet. My best A1C ever was on this regime, a 6.2, but (wait for it)… You were probably having too many lows :smile:. Usually I ran in the high 6’s and low 7’s with the odd higher result. BUT my life sucked big time. I always had to eat on a schedule. I exercised on a schedule. Socializing with friends was hard - hey want to do xyz at 5pm? No sorry I have to eat dinner at 5:30 or I will die… When we would go to a restaurant we would have to beg the wait staff to serve me on time because I was a diabetic (the word at the time, not my preference) and then have a back-up for the reataurant meal in the car just in case the meal didn’t come.

On the exchange diet I measured EVERYTHING… meaured protien choices, measured fat choices (mmmm… 1 tsp of butter one fat choice… but it doesn’t cover the two slices of bread… oh well spread it really thin then ARGH!). Until my parents re-did their kitchen a few years ago my exchange diet poster was on the inside of one of the cabinets. Will have to track that down so Sam can use it. As a teen I have to admit when the dietician let me have 7 starch choices at diner (105g of carbs plus the 2 milk choices plus the 2 fruit and vegetable choice - holy carb fest batman!) I was over the moon happy.

Anyways… the endo suggested before I left the pediatric care program to try this 4 shots a day thing that was in the DCCT. My mom thought it would be way too much work (hind sight is 20-20). So when I went to an adult endo, just before university in the mid 90’s I switched to R / NPH MDI on a sliding scale. It was the most liberating thing ever… that changed my life completely. So much gain in quality of life for an extra two shots a day. Hey I can sleep in and skip breakfast for the first time in a long time - awesome!

Now of course my A1Cs were not as good on R/NPH MDI (a lot more low 7 than high 6) but I could live a NORMAL LIFE!!! when I figured out carb counting on my own in the later 90s, life became easier but probably less well controlled as I wasn’t measuring the 1 tsp of butter in my one fat choice and eyeballing more.

…anyways since going to Humalog and later to Levemir the quality of life is MUCH BETTER but the a1c results are still the same or maybe a bit worse because I amd not as strict as I was with the two R/NPH shots a day. The recent big change for me has been the CGM. I expect to shave 1 point off the a1c based on my CGM averages and I feel much healthier.

My only complication came this August when the eye doctor dectected the first-ever tiny bleed in one eye. The retina specialist really downplayed it (nothing to worry about, you are in good control, for 30 years of diabetes your eyes look fantastic) Unfortunelty I did not share his optimism and have been thinking about the worst outcomes and trying to get the average blood sugars much lower. I was feeling low for a month. It was a bit of a kick to the gut for me and a reminder that there are complications lurking but I am working through it and feeling better now, especially after finding this group.

I am looking forward to getting my a1c done next week to prove to myself that things are getting better! :smile:


#56

My mom (T2) and I did that! I’d forgotten.


#57

Memories… Circa 1966
I think all of my glass syringes are broken though:)


#58

Anyone who DOESN’T recognize that these are testing URINE not blood is by definition a newbie!


#59

Also, those high urine sugars reflect blood sugars from 4 or more hours before the test was done! A “4+” could happen as the person was experiencing a severe hypo reaction–another fine lesson for this old nurse! We learned thru experience to treat the symptoms and draw blood for glucose–then wait an hour or more to find out we made the right (or wrong) decision.


#60

Or you could consider my great-great aunt’s (pre-insulin discovery) breakfast meal of bread, burned black then scraped clean, with a cup of weak tea (no milk). Granny couldn’t recall how long she followed the diet before she expired…