Hi, Can anyone tell me the stats re type 1 complications. Over 40 now and when you tell people have had diabetes 28 yrs feel they expect me to keel over anytime. 40 doesnt feel that old but in diabetes terms feels geriatric. Beginning to be drawn in to worrying about whole thing especially around blindness and heart stats in type 1s or maybe even just some reasuring words may help. Thanks, Chris
In case this helps, there are members here who’ve had diabetes longer than 28 years & are healthy without complications. One is a Joslin Medalist (an award given by a well-known US diabetes center) who has had diabetes for 50 years & is complication free.
Personally, I think stats can be quite misleading & unnecessarily frightening. To say that X number of people will potentially develop X complications at a certain age after having diabetes for certain length of time doesn’t tell the whole picture. Stats don’t show how well people have managed this disease & the level of medical care they’ve received.
Stats do underscore that lower A1cs are our best route to avoiding complications, if you feel yours is too high. Hard not to worry & this is ever present in my mind, but I just keep doing my best to keep A1c down. And, I hope & cross my fingers a lot, too!
The DCCT found fairly high rates of complications in t1s after 30 yrs. More recent studies show that with more intensive management, rates are markedly lower (http://www.medscape.com/viewarticle/707131).
Have had Diabetes for almost 36 years and so far few complications. Thyroid is a bit off kilter and on smallest dose of meds and I only recently felt some tingling in one foot but it comes and goes, mostly not there and my stomach has never worked quite right but my Dr. has said that if after so many years (can’t remember the number) if you don’t have complications you probably won’t. I think good control is key and I think some people are just prone to complications. Just my guess. If you’re good after 28 years and keep up the good control then I don’t think you should worry too much. Hope this helps some. I recently have been worrying a bit more about the same thing. Mostly due to getting older too I think.
Thanks Barb, your info was helpful. Confusing part i find is that they give us a reduced lifespan of 5 to 10 yrs which means i should live to ave age of around 70. And as type 1 is usually juvenile started why is 20, 30, or 40 yrs such a surprise to people. Chris
I think, Chris that the statistics such as reduced lifespan, etc are based on everyone, whether they ignore their diabetes or have excellent control. So I think the reassuring part of it is that we do have choices in how well we maintain our blood sugars (to a degree, of course), so that means we have control over the outcomes. I know there are no guarantees but the better control we have over time the less chance of complications.If I was into studies and statistics about diabetes I would want to read those studies, like mentioned above that took A1C into account!
Hi, Chris!
Studies do show a correlation between years with type 1 diabetes and increased complications. As others have pointed out. people with lower A1Cs seem to fair better. The "best’ group in the DCCT trial had average A1C of 7.08 (but that’s only an average, and only for duration of study).
Genetic tendencies toward certain complications–family history of high triglycerides and other forms of heart disease, family history of cataracts (separate from diabetes)–can mean that you carry more risk for those issues on top of the added risk of these things because of diabetes.
But the more I get involved with social networks, the more I run across people in their 30th, 40th, 50th year with very few problems.
I don’t tend to use the term “complications free,” because long-livers with diabetes usually have a few subtle signs (such as the background retinopathy I closely monitor). Sometimes I suspect those are just to help us keep on keepin’ on with as tight control as we can safely achieve.
For some reason, eye complications and nerve damage/amputations tend to get all the attention, but really it’s heart health (macrovascular) and kidney disease that are of greatest concern when it comes to life expectancy. That’s why, in addition to glucose control, it is so critical to make sure blood pressure, blood lipids (cholesterol and triglycerides), eye health, and kidney health are frequently and closely monitored.
Best wishes and I look forward to continuing this conversation for the next 20, 30, 40 years or so!
I agree, with 40 years and only the thyroid thing, I feel there is not a limit if I take care of myself. There are stats coming out now that show that T1Ds, with experience (20+ I think) who are tightly controlled have FAR less complications than those with less years under their belt and are not tightly controlled.
I you keep on going and screw the stats. Chris is right, we have so much on the way of insulins, pumps, BG meters, CGMs, etc, the stats are getting blown out of the water.
Oooh–thanks for the new t-shirt slogan
Type 1: Screw the Stats
Here is an article with the info that was published in July '09.
http://www.boston.com/news/health/blog/2009/07/post_27.html
Nathan said it best in that piece: “The challenge we have going forward is to make this even easier and [more] accessible so there isn’t anyone who misses out on the opportunity to live a long and healthy life,” he said.
My understanding is that T3s are those who care for and/or live with the T1D challenge along with the T1D. The are not the occasional person or non-D that we encounter.
The Type 3 are our friends and family.
My T3 husband knows quite a lot about diabetes:)
I recently read about T3 as a newly recognized type of diabetes.
“Scientists have found that insulin is also produced within the brain. This has led to the recognition of diabetes type 3 in 2005. Diabetes type 3 is when the brain stops or reduces the acceptance of the brain’s secreted insulin within the brain’s cell receptors.”
Some researchers think this may be related to Alzheimer’s. Now, we have more to worry about than just our pancreas.
My endo claims that diabetics have bad short term memory. Scary!
You wrote that you expect to live to age 70 because the statistic claims that T1 have a reduced lifespan of 5 to 10 yrs. Well, the good news is that the official numbers are incorrect. The generation around 40 will get much older. The only exact figures are used by companies insuring peoples pensions and comparable products. They calculate very accurately because the life span of their customers is a high risk for them. If the current life span is 75 then you can expect it to be 80 for your generation. Minus the 5 years for T1 our expectancy should be at least 75 years. This is how I like to look at it.
i’ve been T1 for 50 years and i have zero complications. in fact, i’m healthier than most people. So … stop worrying so much. Instead, turn your attention to eating right, exercising and keep close watch on your BGs. I’ve also found that TDD is a very good indicator. I run 30-34 units a day, on average. If I’m in that range numbers are usually pretty good. Lower TDD means even better.
Sorry, what is TTD?
TDD = total daily dose (basal and boluses)
Whether this will make you feel any better or give you something positive to think about, but here goes:
I’ve been T1 for nearly 30 years and am in the UK like you. I went for an annual review at the hospital today and for the first time ever (that’s no exaggeration, believe me), the two diabetologists I saw today said they were very pleased with all my blood results and that I’ve also lost another 2kgs. I thought that HbA1c should be between 6 - 7% (mine came in again at 7.2%, same as six months ago), but there you go, they said they were very pleased and were kind of scratching around to find areas for improvement. I still need to sort out my tendency to have hypos before lunch and I was told to change my needles if not after each injection then at least once a day and not once a week. So with that pleasing report there’s no chance of me ever being considered for a pump according to NICE criteria!
I have and have had complications throughout my life: laser treatment on both eyes about 10 years ago, albuminuria, frozen shoulders and trigger finger.
My mom has a friend who is in her early 70’s, with diabetes since age 12. When she was diagnosed in in the late 40’s or early 50’s the picture for her future looked grim. She did not even have a meter until the 1980’s. at least 30 years after her diagnosis. Had a healthy baby, became and grandma, and is now dying of cancer. Yes, something totally unrelated to DM. I am sure totally unbelievable to her.
I have to think that if there are people out there who have survived 40, 50, 60, 70 years with DM, many of those years were before meters and before designer insulins.Those of us diagnosed after the advent of meters are luckier, right? Also, I remember the days of NPH, and how much harder it was for me to get good control. First Lantus, and then my pump have made it easier. Hopefully, that will help in the long run.
But I do think about the potential complications sometimes, and how it would impact my family. I hope that I get to see my kids grow up, and want to be able to enjoy retirement someday. The one that worries me is the kidneys. Terrifies me.
And yes, I have have people, even/especially medical people, who look at me like I have one foot in death’s door when they hear I have Type 1. Without even knowing what type of control I have.
Diabetes Forecast magazine frequently spotlights people who have been living with diabetes for long, long, long periods of time. Some since they were infants, who are now middle aged and older. You may be able to find some of these stories online. Inspires me, and helps me feel more optimistic about the future.
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