Discussion in 'Parents of Children with Type 1' started by Lakeman, Jul 12, 2013.
If you could get normal blood glucose numbers do you think there would be significant benefits?
I am not sure why you feel the need to ask this? Do you really think that anyone would say no?
That depends. At what cost?
(I have a sneaking suspicion we are about to be enlightened as to the benefits of an insanely low-carb diet or supplements, or some other nonsense.)
The intent of the question is/was not to sing the benefits of any approach or to ask if people would want normal blood glucose numbers.
The intent is to ask if the benefits would be significant. E.g. would the reduction in future complications be nominal or great? What benefits might we expect? Would some complications respond more than others...?
LOL, me too! It sounds like the beginning of an infomercial that's on at 2 in the morning!
If our kids had normal blood glucose levels they'd be...non-diabetic. Why would you expect them to have diabetic complications?
There are some complications that could result from the autoimmune system even if BG is normal, such as gastroparesis which can occur even without D. However most of the commonly known complications to eyes, kidneys, and nerves, and macrovascular disease induced by sustained high BG have been shown to decrease in likelihood at lower average BG levels and lower variability. Dr. Aaron Kowalski of the JDRF gave a speech a few years ago in which he said that A1C's in the 5% range can reduce risk to near zero. IMO it's worth keeping BG in the nondiabetic range when possible.
I think there would be significant benefits to daily life now, not just the decreased risk of future complications. Just imagine how much better normal blood sugar numbers must feel compared to lows, highs or fluctuations. I know there are parts of every day (often significant parts) that he just feels yucky even though his endo considers his control very good.
Where's the "DUH" button?
Think of all the time we spend bringing up lows, re testing, bringing down highs, re testing, worrying, trying to figure out what caused the lows and highs, worrying, the kids feeling rotten, worrying....so yeah, normal would be nice...
Edited to add: It kind of upsets me that you would even ask that question here. I don't get it. It's what we all pray for.
Absolutely, although my dd would still have T1D so there would still be no guarantee that she would completely avoid all complications. And the price she paid emotionally to achieve that kind of control would no doubt be very high, at least with the tools available to us now. For us, management is about balance....in everything. Quality of life is no less important just because we can't attach a number to it.
First thanks for replying to the question. I thought I was clear but obviously not since others interpreted it differently.
So, yes, with the tools we have now, and yes our kids would still have diabetes, and yes we need to consider the cost of following a regimen.
I agree that there would be no guarantee that all complications would be completely avoided. But what I am hoping someone here knows is is an estimate of how much complications might be avoided.
It has been out for a while but I just read an article on the results of the DCCT study which basically said that complications can be reduced by huge amounts using multiple injections or a pump compared to conventional treatment. Here is one paragraph from an article on that:
"As first reported in 1993, intensive therapy reduced the early stages of eye, kidney and nerve complications by as much as 76 percent compared with the conventional therapy."
Without seeing the study I have to make some assumptions about what they are comparing. It seems that they are comparing MDI or the use of a pump to twice daily injections. Then they are saying that for every hundred people who had the complications listed 76% less had such complications. But that is not really the comparison I want. Its great that our kids will have less complications than people who used twice daily injections.
But there is a whole lot of room in there between the amount of complications twice daily users experienced, some number that is 76% smaller, and normal which presumably is close to zero.
So, if our kids had blood glucose numbers that were more or less normal would the reduction in complications be significant?
For us, the things that would need to happen to achieve perfection would not be worth it IMO, he would have to give up things he loves in order to achieve perfect numbers. Sports for one.
Because the risk of complications for any one individual can't be really pinpointed, I don't believe you can realistically calculate an exact %. If it was only about BG levels, it might be possible. Even the A1C is not that exact because, as we all know, 2 people can have the same A1C but not have the same level of control...one has SD & %CV that varies widely throughout the day, while the other has less variability.
Unfortunately, what we can't really measure is how much emphasis genetics have over the risk of complications. Example: My maternal grandmother is the only known family member with D. (What's unclear is what "type" of D she had. From all accounts she was dx'd in DKA, actually comatose & was placed on insulin immediately.) She lived a long life (age 90 at death, from pneumonia), with no complications. There was no way to measure her control back then....no A1Cs & no meters. She tested urine every morning & recorded the results, then took her usual single injection. Doses were only adjusted at her 6 month appts. The last 5 yrs of her life, she was placed on a 2 injection per day regimen. My FIL was dx'd T2 20+ yrs ago. His A1C over the last 10 yrs or so has varied between the high 5s & the high 8s, due in part to never receiving any sort of education on insulin use/action or the role nutrition plays in his treatment. He now has neuropathy, retinopathy, & his one kidney is beginning to fail. The other was removed due to a cancerous tumor 2 yrs ago.
Which genes have been passed to my dd? Will she live a long life free from complications like my grandmother, or will she develop complications in her 30s? There's no way to know for sure, of course. I can control the insulin/food/activity in hopes of keeping a tight range & increase the odds of success, but there are so many other variables involved...age at dx, hormones, illness, effects of emotions etc...that are completely beyond my control that when it comes down to it, as a PP said it's a crap shoot. And to make it even more of a guess, we have to keep in mind that as parents we can control our kids while they're living in our homes, but once they're on their own the control becomes their choice & responsibility. If we push them & restrict them now, will they keep that same control....or will they rebel completely & choose to ignore their D long enough to negate any good we've done?
The DCCT studies have been ongoing, & were a big topic at the ADA Scientific Sessions last month. You might try searching for the DCCT/EDIC results, which is what the study is currently known as.
Gary Scheiner's summary of the sessions is available
Page 4, The Puberty Connection, has some interesting info about complications & age at dx.
A good summary of the DCCT/EDIC study over the last 30 yrs can be found here
Registration is required, but it's free.
"The original DCCT, which involved 1441 patients with type 1 diabetes, demonstrated that intensive glycemic control -- resulting in a mean HbA1c of about 7% -- reduced the risk for retinopathy, nephropathy, and neuropathy by 76%, 50% and 60%, respectively, compared with the conventional-treatment group, whose HbA1c averaged about 9%."
An A1C at 7% is NOT a "normal" non-D A1C, so while keeping BGs in normal range might further reduce risks, in the grand scheme of things is it worth the extra stress on both the family & the CWD? That's for each of us to decide.
Well now that is close to the question I am asking. But more simply I only want to know what the risks are.
So how is anyone to decide for themselves if the risk of higher than normal blood glucose is not known?
I will check your links to see if the question is answered there. Thanks for your response.
Having normal blood sugars would make a day to day difference in my life before we get into any discussion of complications. High and low blood sugars have been affecting the quality and quantity of my sleep for seven years. Sleep would be a significant benefit all by itself.
In terms of long term complications, I have little hope that even my 6.0% A1c will prevent diabetes from doing ANY damage to my body; it is only in studies on late stage complications that control seems to make a huge difference. Of course, late stage complications are plenty important. I do wonder whether the lack of cpeptide makes a significant difference in developing complications, and also about metabolic memory. And of course, there's the question of whether or not minor complications matter significantly.
I think for me, making the best attempt I can to manage my blood sugar is worth it because I've met with so many diabetics who have major complications and who feel guilty and responsible. I want to be able to say that I did the best I could.
As all have said " Of course a normal A1c is desired" ! But you are right in your questions, yes all the research shows normal BG levels mean no damage to ones health. But all T 1s have to balance their quality of life with the the long term issues....this is a huge emotional issue for the one with T1 to deal with every day over their life. I have had this disease for over forty years and believe me that question occurs to me every time I eat a bit too much, do not exercise, over correct a low at two in the morning so I can sleep without another CGMS alarm till six, or run higher than optimal while driving my kids to school so I do not have to stop and correct while driving or run a bit high while watching my kids ballet rectal so I do not have to leave before her solo etc. You all get it... I would love the AP for all these reasons alone. As a T1 there is also the issue of what too much insulin in your system might do, so while you need boatloads of insulin to stay in range does all that extra insulin have some issues. It is just no win, so the studies say get as low as you can without going crazy. Right
I did NOT say a normal A1c is desired. The question was about normal blood sugar levels, which would be so much more than a normal range A1c it isn't funny.
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