Scared and discouraged

Ugh, you get used to the day-to-day and feel confident you can help your kids live as healthy a life as possible, and then you read articles like this:
4 Times Higher Risk of Death in Young Adults with Longstanding T1D

This also just reiterates to me that blood sugar is not the whole answer to the puzzle. Sure, we can get our son to have as close to normal blood sugar as possible, but I can’t help feeling like we’re ignoring a huge part of the disease process, the inflammatory/auto-immune component.

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Of all people, my OB-GYN clued me into this factor.

Of course, she is the SMARTEST doctor I’ve ever known.

She’s noticed there is an inflammatory connection amongst nearly all the compilation or cormorbid conditions, and diabetes. Before I even went to the endo, or my GP, it was HER order for fasting BG which led to my diagnosis.

And it was she who reiterated that aside from sugar control, the most helpful thing to do as a diabetic is to control ALL forms of inflammation.

So exercise, omega-3s, a little Advil if it can be tolerated by kidneys, or 81 mg of aspirin at night for the heart (in adults!) are helpful.

I have not done research on what are good practices for kiddos in the area of anti-inflammation. But it seems like an important factor to consider for long term health of young and old diabetics.

Perhaps someone else can chime in about anti-inflammatory treatments for the young?

NO on the Advil… it causes a lot of intestinal issues with the villi long term. There are many anti-inflammatory herbs and extracts out there, ginger is a huge one.

And yes once I started getting rid of Gluten for me it has helped tremendously with my sugars and how I feel. You have to treat the body as a whole.

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@Allen3

Yes! I agree!
Gluten can be a major factor in inflammation
Whether or not one is officially Celiac

Acidophilus can also help reduce inflammation

Thank you for pointing out the hazard in Advil!!!

Ugh. I hate reading articles like this. I’m 34 and have had Type 1 for 25 years. I’m exactly the population that study examined. And that study was looking at modern diabetes, not people who lived most of their diabetes life in the dark ages.

I agree completely that there is more inflammation going on that just beta cells. I definitely feel that inflammation is a major issue for me, but doctors just brush it off.

Cardiovascular disease is my biggest diabetes-related fear. This article just reinforces that…

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@Jen
I am remembering you have a cardiologist?

Mine recommended one 81 mg aspirin for me.
Are you on an aspirin regimen?

I think I remember you take a CVD med along with the hyperthyrodic med too.

Just wondering?

The study is really new and the article doesn’t mention if they controlled for … anything? :smile: Does anyone have a link to the typical abstract that includes a bit about the abstract/methodology/summary?

Tia, I really can’t agree with your conclusions here, based on the abstract you linked. Is there more detail somewhere?

Specifically, two significant issues with concluding good BG control is not as effective as we might think:

  1. the abstract does not break down results for the group by degree of control. As such, if all study participants are evaluated together, those with poor control – and concomitantly more problems – will skew the results to look bad for “diabetics”, when the results for those with good or excellent BG control may in fact have far better outcomes, when broken down by BG control.

  2. Those studied are in an age range where their juvenile D experience was still before we had the tools and treatments we’ve gained in the last 20 years that are making a big difference in BG control compared to before. So, when looking at the outcome of 40 year-olds today, who were kids with D in the 70s and 80s before glucometers, insulin analogs, etc., as a measure of the impact of T1D on people that have had it since they were young is not necessarily representative of the outcomes children with T1D TODAY can look forward to when they’re 40.

Given these issues with this study, I’d be careful about drawing any conclusions for prognosis for preset-day young PWD. The situation with current middle-age adult PWD reflects treatment protocols from 30 years ago, not modern treatment protocols.

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The link that says doi at the top of the article should take you to the
journal article. Control group are nearby people from Allegheny County but
I’m not seeing what the average A1C is, likely the cohort is too small to
really stratify by “controlled” or “uncontrolled”

I don’t see a cardiologist. I did see one briefly years ago for episodes where my heart would race for no reason (SVT), but he said that problem is common in young healthy people and often goes away eventually, as it did for me. He said it wasn’t dangerous nor related to heart disease.

I’m currently taking a beta blocker. It’s used in cardiovascular disease but also in a lot of other conditions, such as hyperthyroidism, which is why I started taking it. My GP only plans on keeping me on it temporarily. I’m also on anti-thyroid medication, a PPI due to allergies, and a bunch of allergy and asthma medications. I feel like my body is under a lot of inflammation driven by my immune system, and the side-effects of things like diabetes, Graves’, and allergies.

One other note - the study was sponsored by Lilly – they wouldn’t have an interest in selling statins to PWD, would they??

… Just saying. :wink:

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Thas, I totally agree about that caveat – I’m sure Eli Lilly has a vested interest in getting everyone on statins. On the other hand, this is not the only piece of data showing that blood sugar levels have relatively little impact on CVD risk factors. HEre’s another article with taht conclusion, buried in the middle paragraph of the second page. Beyond this, even DCCT and EDIC suggested that BG is not the whole or even the dominant factor predicting risk of complications such as retinopathy, nephropathy and heart attack and stroke. I need to dig up the study but one pointed out that a whopping 89 percent of the risk associated with T1D complications was not correlated with A1C. That doesn’t mean A1C is unimportant as that small amoutn of risk modifiable by sugar levels actually translates to a dramatic absolute risk reduction. But it means that we’re fooling ourselves if we think that just maintaining vaguely normal blood sugars will prevent complications.

Oh, I’m sure there are other factors - as with anything in life, there are a lot of intertwining systems that affect and are affected by each other. That said, some of these may well be related to the same issues that affect the general population, such as unhealthy environment, unhealthy lifestyle, possibly tainted food supply, etc. Truth is, though, risk factors aside, people who are vigilant with their T1D management are (I would think) more likely to be vigilant with other aspects of their health. For one, they SEE a doctor regularly. In addition, by necessity, they THINK about their health on a daily basis – those alone are things that can, if not reduce risk, certainly provide plenty of opportunity to mitigate those risks – and much sooner than the general population might tend to do so.

The outlook is not bleak.

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Did I miss something? I see that one of the six authors has consulted for Eli Lilly, but don’t see anything about Eli Lilly sponsoring the study.

I don’t think the point of this study was to extrapolate exactly what factors contribute to risk, but rather just to look at the risk in younger adults than are typically included in studies of cardiovascular risk.

And, as usual, I think it’s important to remember the differences between kids and adults at time of diagnosis. I read a study that showed that the autoimmune attack that occurs in kids is more intense and associated with more inflammation than in teenagers or adults. And many studies that look at complications show that younger diagnosis is correlated with more difficult control and more complications.

I don’t think it’s all doom and gloom, but I do think there are aspects of autoimmune diabetes and complication risk that go beyond blood sugar control and that we don’t really understand. People diagnosed as kids and their doctors need to be aware that they face a higher risk of cardiovascular disease at a much younger age than most, especially because right now “cardiovascular disease” is usually not even on the radar for 35-year-olds and their doctors.

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yes, I agree. My son is 2-years-old, so he probably has some of the nastiest or strongest auto-immune stuff going on. So I worry and really really hope they figure out that component soon.

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@Dave26 does have a good point, though. The technology that exists today was only science fiction when I was diagnosed 25 years ago. So, even though BG control is harder in kids and there may be components of diabetes that we don’t understand, I’d keep trying your best and keep up hope (though I know it’s a parents’ job to worry—that’s what my mom says when I tell her it’s ridiculous that she still worries about my health at age 34!). By the time your son has had diabetes for 25 years, in 2040 or so, I’m sure we’ll have tools available that we couldn’t dream of today.

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And remember the old-timers! My great-grandmother was Type 1 and lived into her 90s (admittedly, minus a foot and half-blind, but that only happened in her late 80s). She died in the 1980s: just imagine the kinds of tools we have now compared to what she had (she also lived in the coalfields on the WVa/Va border, which is the poorest region of the country and the unhealthiest).

It’s definitely easy to get discouraged, but there are so many examples of people that live well and long with diabetes as children and adults.

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Well there are things we can do to protect our cardiovascular system… exercise regularly, keep our body weight in healthy ranges, low dose aspirin if indicated, lipid monitoring and management, etc and of course doing our best to manage blood sugars themselves

Certainly this is a higher risk group for cardiovascular disease-- but risks can be managed and hopefully minimized and that’s about the best we can do

I do worry about heart disease, but honestly, the things that scare me the most are the nerve and kidney damage where risk is based on how many years you’ve had the disease and age doesn’t have much effect… gastroparesis, neuropathy, nephropathy. I don’t hear a ton about 25-year-old T1Ds dying of a heart attack but I have seen on here tons of people with neuropathy or nephropathy who seem to have maintained good control for much if not all of their lives. I figure by the time my kid is 50 we’ll have cyborg heart implants or at least lab-grown hearts or something to improve those outcomes, but when he’s 20, he’ll have had T1D for 18 years… long enough to develop all these other conditions, but that probably isn’t long enough for dramatic improvements in overall medical care.