The scale of what we do -- diabetes by the numbers

[Jen]

[quote=“Sam19, post:39, topic:55679, full:true”]
What strikes me about all of this, is that these things don’t seem to be improving with improvements in the technology that should be changing these dynamics. [/quote]

Diabetes has most definitely changed for the better over the years.

In a way, it was “easier” 20 or 25 years ago. Two shots a day, four tests a day, and that was about it. No need to put much more effort into diabetes than that.

Except for the devastating lows (much worse with NPH) that could incapacitate and cause one to pass out in a way that today’s insulin analogues don’t seem to. And the extraordinary highs that lasted for hours after eating (we were told not to test after meals because nothing could be done about the highs). Or the fact that one was literally tied to the clock with meal and snack time. Or that eating out at a restaurant was a major logistical ordeal in terms of figuring out timing and insulin. Or the fact that complications were almost just a matter of time.

Today, diabetes is more work. We have to think about it more often throughout the day and make more micro-adjustments. But the trade-off is control that was just not possible 20 or 25 years ago, far less devastating highs and lows, significantly less risk of complications, greater freedom and quality of life.

@Sam19

Inhaled insulin that works for many better than injected is widely available, but people are largely disinterested.

This may be true if you are in the US. Many on this site are international members where inhaled insulin is not available.

@Sam19

I think we all have a little more say than we are really taking advantage of in how much of a role in our lives this condition really needs to be allowed to possess

For me, diabetes is something that will always take effort. If I back off at all on the amount of daily effort I put into managing it, my blood sugar and A1c deteriorate significantly, even with the latest technology available to me. If I want to keep a reasonable A1c (which, for me, is in the 6s), then diabetes is going to take consistent and concerted daily effort. If I want to aim for an A1c in the 5s (where I have never been), I have to be prepared to put in an even more monumental daily effort. The changes in diabetes technology and medications over the years have changed the type of effort required, and have greatly improved the outcomes of that effort, but certainly haven’t eliminated or even decreased the need for said effort.

I’m not sure how I could “have more say” in the role diabetes is “allowed” to possess in my life. Diabetes certainly doesn’t control my life, it doesn’t limit what I do, I do not think and worry on it every moment of the day, but I have to come to some level of peace with the fact that diabetes does require a significant amount of daily energy and effort to maintain a decent level of control.

[Terry4]

@Jen

I’m not sure how I could “have more say” in the role diabetes is “allowed” to possess in my life. Diabetes certainly doesn’t control my life, it doesn’t limit what I do, I do not think and worry on it every moment of the day, but I have to come to some level of peace with the fact that diabetes does require a significant amount of daily energy and effort to maintain a decent level of control.

Well said, Jen!

I could spend less time on diabetes, but not by a lot. The dividend I get for the time I spend makes it worth it to me.

[Terry4]

I’ve been trying to beat back a trend of over-night highs as well as some post-prandial bumps. The Dexcom Clarity14-day standard day report has helped me shape my effort. This is a longer term trend that I’ve been working on since the beginning of May.

Here’s a shot of the first 14 days of July as a “before” picture:

And the last 14 days as the “after” shot:

I can understand why most people would not be motivated by this. For some reason, it animates me. I feel better.

[Jen]

@Terry4

I can understand why most people would not be motivated by this. For some reason, it animates me. I feel better.

What strikes me every time I come to this site is how much more effort people here put into their diabetes than the average person. I think the average person, especially someone who is not good at math or who is dealing with a lot of other stuff in their life, finds diabetes utterly overwhelming. It takes so much work. It’s really unbelievable. Even with a pump and CGM and eating ~50 grams of carbs a day, I still can’t stay between 4 and 8 mmol/L without concerted effort and continual adjustments (and even with that effort, a day entirely in range is rare). It truly is doing the job of an organ. I use the comparison of imaginging one is trying to control their blood pressure or their heart rate moment to moment, keeping it in an appropriate range at all times and compensating for environmental and internal changes. It would be a monumental task. I don’t think that’s exaggerating at all compared to the effort of tightly managing Type 1 diabetes.

[Judith_in_Portland]

Perfectionist, of course. I think all of us, whether we recognize it or not have a familiarity with OCD symptomology…

But really–how can you NOT?! Our lives depend on it…T1 /T2/Meds/no meds. Obey your meter or shave some years off your lifespan. And if you are watching your grandchildren evolve—it becomes even more a Life Imperative…

My life is ruled by my meter. Period. That’s how it is. First, last, and always…Blessings to all…

[Terry4]

@Jen

It takes so much work. It’s really unbelievable. Even with a pump and CGM and eating ~50 grams of carbs a day, I still can’t stay between 4 and 8 mmol/L without concerted effort and continual adjustments (and even with that effort, a day entirely in range is rare).

Jen, I think one of the downsides of a peer-support medical forum is the natural inclination that we all have to compare ourselves with others. Fate has dealt us many different versions of diabetes. In a way, while we share many traits, our individual version of diabetes is unique to us.

I need to acknowledge that I am retired and don’t need to spend a big chunk of my time earning a living. It is not a coincidence that my personal breakthrough with diabetes control came about one year after retiring. Retirement is a huge advantage for me. Time is a powerful card in the hand I currently play with diabetes. I use it to good effect.

I’ve watched your progress over the years and I think you’ve done a wonderful job within the constraints of your current circumstances. I think a lot of progress in life begins with asking the right questions. Even absent immediate answers, asking the right questions opens up options not visible at the moment. I’m thinking you ask all the right diabetes questions.

Whenever I post successful graphs, I realize there’s a downside for some readers. It’s not intended.

[pancreaswanted]

i wish i could like this 838 times.

[Laddie]

One thing that I don’t ever see discussed here is the difference between men and women when it comes to living with diabetes. Since both you and I have Type 1, Jen, I Googled “Men versus Women Type 1 diabetes.” There is article after article about how women with T1 diabetes have higher mortality and rates of complications than men. They don’t necessarily know all of the reasons but suggest everything from more hormonal issues, poorer medical care especially when it comes to cardiovascular care, smaller vascular systems that are damaged more by high blood sugars, more autoimmune issues than men, and more psychological issues such as eating disorders and tendency to care for others before ourselves.

There is no doubt that many of the ultra-control topics are TuD are dominated by men. Do they have an easier time than we do in achieving flat lines or is it purely coincidental more reflecting the membership mix of TuD at this time? Or do men just like to talk about flat lines more???

I can’t compare my T1D history to yours because I didn’t have BG meters for many of my “high-hormone years” including my two pregnancies and then didn’t have the Internet for many years after that. It never dawned on me that my BG control varied throughout the month based on hormones, but I would have learned about that from other women on the Internet.

At age 64 I definitely have an easier time with blood sugars than when I was younger. Some of that has to be related to hormones. For me a lot of the difference is that like Terry I have more time to focus on diabetes and to live in a routine that allows scheduled walks every day.

We all work with the diabetes that we were dealt. All we can do is keep working at it and get up tomorrow and try again.

[Terry4]

@Laddie – I was not aware of the mortality difference between T1D women and men until I did the google search prompted by your remark. I’ve observed anecdotally on this forum that men seem to have an easier time producing favorable blood glucose data. I wish this weren’t the case. More resource needs to be brought to bear on this issue.

[LADA_lady]

Early after my LADA diagnosis, I read a starling statistic from a Joslin study of CVD in T1 women.

75% of women diagnosed after age 55 as T1 will die of complications of CVD.

Now, it did not say WHEN the 3/4 of this population would die. Perhaps a large portion dies at 95? Who knows?

It did not list specific causes, factors such as weight, diet, stress, exercise, length of time with untreated diabetes, etc.

As in the above posts, the extra factors women face would seem to definitely come into play here.

However, with raised lipid results along with my original T2 misdiagnosis, I was put on notice. 3/4 of women like me have died (during the length of time of this study)
Of heart-related complications.

I was relieved when lipids came back to normal levels after bringing down my A1c drastically.

But this is a progressive condition which does not grant clemency. This is a factor I must throw into the mix. I am statistically, because of my type of diabetes, most likely to die in some kind of heart-related manner.

A second wake up call.

I will try to find this study again, to post.
I am hoping to look at it again, to ascertain if I misread the data.

[Jen]

@LADA_lady

75% of women diagnosed after age 55 as T1 will die of complications of CVD.

This seems like a very specific subset of women… I’ve heard that 3/4ths or 4/5ths of people with all forms of diabetes will die of heart-related conditions (this is why heart disease is my number one diabetes-related fear). Knowing that being a woman with Type 1 diabetes increases the risk of heart disease even more and that it increases the risk of death from heart disease even more compared to men, well, just confirms that it’s something to be concerned about! I think this is one of the most significant disadvantages of being diagnosed as a kid: I don’t know any others in their 30s, besides those of us with long-term diabetes, who are seriously discussing and concerned about their risk of heart disease.

[Sam19]

@Laddie

One thing that I don’t ever see discussed here is the difference between men and women when it comes to living with diabetes. Since both you and I have Type 1, Jen, I Googled “Men versus Women Type 1 diabetes.” There is article after article about how women with T1 diabetes have higher mortality and rates of complications than men. They don’t necessarily know all of the reasons but suggest everything from more hormonal issues, poorer medical care especially when it comes to cardiovascular care, smaller vascular systems that are damaged more by high blood sugars, more autoimmune issues than men, and more psychological issues such as eating disorders and tendency to care for others before ourselves.

There is no doubt that many of the ultra-control topics are TuD are dominated by men. Do they have an easier time than we do in achieving flat lines or is it purely coincidental more reflecting the membership mix of TuD at this time? Or do men just like to talk about flat lines more???

This is very interesting to me. What are your thoughts, @Laddie? I have some thoughts of my own but want to tread lightly and not get into a gender type debate so would like to hear out some other people’s ideas first.

Open question to the ladies on the forum—

Why do you think (based on the info you just provided) women are more susceptible to morbid complications of diabetes than men. Open session please comment.

I’d also be interested to see some macro data like what are mens average a1c levels as compared to women’s across the board-- the question being— are men better controlling diabetes in general and thus suffering less complications (and if so-- why, and how/ can that possibly be improved?). – or are all things being equal women just experiencing more complications because of their physiology. I truly think this is a topic worth exploring.

[anon14259252]

How about starting a new thread, so more people are aware of the discussion?

[Jen]

@Sam19

Open question to the ladies on the forum—

Why do you think (based on the info you just provided) women are more susceptible to morbid complications of diabetes than men. Open session please comment.

I think that it’s probably a combination of the factors @Laddie listed. Probably not all the factors for everyone (not all women have eating disorders or concurrent autoimmune conditions), but all of those factors listed are often either not issues for men or are far more prevalent in women.

@Sam19

I’d also be interested to see some macro data like what are mens average a1c levels as compared to women’s across the board-- the question being— are men better controlling diabetes in general and thus suffering less complications (and if so-- why, and how/ can that possibly be improved?). – or are all things being equal women just experiencing more complications because of their physiology.

I agree, this type of data would be interesting.

[David_dns]

A very interesting (and important) subject indeed.

Back in the dark ages, I was told that middle aged women were more susceptible than any other demographic to getting diabetes in the first place. Of course, they were speaking strictly of T2.

[Sam19]

@CatLady06

How about starting a new thread, so more people are aware of the discussion

That’s a good idea. I really don’t feel like I know enough about the subject to start one myself-- I didn’t even know this was a thing until I read laddies comments. Any volunteers?

[Laddie]

@Sam10 @CatLady06 I just started a new topic by copying and pasting. Maybe you can copy your reply onto the new thread also and same for others who commented.

[davyboy]

I did 27375 urine checks before fingertip glucose meters even became available to us. I purified my glass syringe 16425 times before the disposable plastic ones came out. I used an old-fashioned method of control with the NPH and Regular insulin combo 22082.5 times, for 25 years, before longer acting and quicker acting insulins became available. I thanked a pig four times a day for giving me its insulin. It was 26 years before the first viable pump went on the market. My life has been through amazing changes between 1958 and now, and in two years we will have the first marketable artificial pancreas (AP), to which I look forward with great anticipation.

[Kimball1]

Ug. So sorry and I feel your difficulties. Me too. A whole new challenge like we need one!!