FUDiabetes

Study: Insulin Pumps Decrease Quality of Life and Increase A1c in CGM Users

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pump

#121

Being a woman must really screw things up, because I’m athyroid (hashimotos destroyed my thyroid 35 years ago, I’ve been on l-thyroxin ever since), have bilateral adrenal hyprplasia (medicated with spironolactone), miserable environmental allergies and asthma, insulin resistance, high blood pressure, hypercholesteremia.
And I have no trouble maintaining a sub 6 A1c on MDI.

You women have my sympathy.


#122

I guess maybe being a woman could cause most of it, and maybe I blame other conditions because I resent having so much health crap to deal with in my 30s sometimes. :slight_smile:

I would say the condition that affects my BG the most is Graves‘ disease. According to my endocrinologist, once your thyroid isn’t functional, it’s fairly straightforward to control. With Graves’, it’s constantly going up and down without your body having any control over it. When it’s shifting from normal to high, or high to normal, or normal to low, or low to normal, those are the times it really screws up my blood sugar.

But when I talk about other chronic illnesses and diabetes, I think a big part of it is also time and energy. Some of my conditions, like hypertension and even Graves’, pretty much just need a pill each day and some monitoring every few months. Pretty easy to manage overall. But other issues I have, like my six allergic conditions, visual impairment, some physical issues, and so on, require quite a bit of daily energy and management and also fluctuate quite a bit from day to day. There are days when my allergies are bad and I’m reacting to everything, I’m dealing with things taking longer because I live in an inaccessible world, I’m in pain because my physical issues are acting up, I’m exhausted because something in my blood work is off or because I’ve been up half the night with one or more health issues, I’m just not feeling good because my stomach is upset or my heart is racing, and my blood sugar is crazy on top of that. And so on those days, which are not all that rare, I do tend to think all the other stuff influences the fact that my blood sugar is going haywire.

But then, I’ve never had a sub-6% A1c in my decades of diabetes. So maybe it’s just something genetic.


#123

Jen has a lot of chainsaws she juggles that affect her bg. I respect her tremendously for all she manages and the great attitude and gracefulness she does it with. And when she tells me she has variable basal rates I know it’s the real deal because I’ve seen her try tresiba, and it surely didn’t work for her… so i think she is a perfect example of someone who really benefits from a pump


#124

Thanks for such kind words, @Sam. :slight_smile:

I really like the image of juggling chainsaws. It makes it seem almost cool.


#125

For me, my connective tissue disorder, hypermobile Ehlers-Danlos Syndrome, affects my life in challenging and unpredictable ways. I have multiple joints subluxing every day, including my ribs (which I feel every time I breathe). I can take out my rib if I lean over too far or my hip if I take a misstep. I go to specialized PT twice a week where they put my joints back into place. When my thoracic vertebrae sublux, I also have worsened dysautonomia/postural orthostatic tachycardia syndrome, which makes me tired and dizzy when I stand up and can both increase fatigue and interfere with sleep. I’m unsure still whether that affects blood sugars directly, but I suspect it does. I can injure myself doing even the most basic exercise sometimes, so that’s simply not something I can use for diabetes regulation. I also appear to have a mild case of mast cell activation syndrome, which is highly comorbid with hEDS and makes me I react with skin rashes, GI sx, and sometimes throat/congestion sx to wide range of things, including but not limited to foods with high levels of histamines (many of which I eat anyway, because lower carb is nearly impossible otherwise), the sun, certain insulins, hot showers, and insect bites. I suspect inflammatory reactivity also messes with blood sugars, but it’s hard to tease out. I’ve also yet to meet anyone in any of my online communities with both T1D and hEDS, and none of my specialists have any clue really how they interact nor have any experience treating people with both.

Many people with EDS are on disability, require mobility aids, and have other major challenges in daily functioning. I’m struck by how relatively high functioning I am whenever I go on the EDS forums/facebook groups—I’m entirely ambulatory, I work full time in a career I love, and I have an active social life. It’s exhausting, but I’m determined to do it. It does however mean my spoons, as we say, are very limited, and so sometimes I don’t have the energy or even the f**** to give about my diabetes in a given moment. So no, it’s not just because I’m a woman that my diabetes control is challenging, even though cycles add to the complexity considerably. And just because one person has a number of chronic conditions doesn’t mean they necessarily understand what it’s like to exist as someone else with others (or even someone else’s different experience with the same condition).


#126

I think I bragged too much, my a1c is now the highest in 5 years…6.1%. But that’s still far from bad and I’m not really freaking out just kinda being a downer for a bit as it’s been the highest in years. I figure it’s a combo of too much snacking at night still (I haven’t exactly worked this out yet and it’s been prolly a factor in how my a1c went from 5.5% up to this in a few years very very slowly) and weight gain . I would say possibly not testing enough but when I find it’s normally pretty consistent , I can’t really figure out even if I test a lot what to do different. It could be the weight gain but hard to say. I do feel like I need a snack at night for the mere fact sometimes I just don’t feel like eating dinner, or I eat a late lunch closer to like 3pm or 4 and I don’t feel hungry all day , so I’ve tried to work that into things and have more of a light meal/snack to make up for it. Current plan is to figure out 4 tests a day instead of 3 to see if I’m missing something, but I used to test up to 10 times a day out of pure curiosity and not find anything that really would give me issues. Been a while and not affordable enough (though still cheaper than any CGM options I’d have to pay out of pocket for due to no insurance coverage) .

Regardless , I still feel like I could thank MDI for not having it too bad and I don’t feel it’d be the same with a pump as that was too much number chasing I don’t really encounter. I know this is somewhat offtopic from the current topic, but I feel like it’s relevant to the topic’s original post.


#127

This can also, like everything, change even in the same individual.

Ten years ago I thought the whole “spoon theory” was ridiculous when I first came across it, because I couldn’t relate at all to what it tried to communicate. At the time, in addition to diabetes, I had asthma, a severe food allergy, environemntal allergies, hypertension, and a severe visual impairment.

Ten years and a half-dozen more chronic health issues later, and I live the spoon theory every day of my life.


#128

This is a fascinating thread to have read through (and accidentally stumbled across). As someone who turned 30 years Type 1 late last year and spent many years on MDI using NPH and Regular, before Novorapid and Lantus, then Novorapid and Levemir (way better than NR and Lantus) then a pump 3.5 years ago and DIY closed loop 2.5 years ago, I’ve been there and done that with all the options. Throughout those 30 years I’ve been plenty active.

I think it’s fair to say that CGM makes it easier across the board, and I’ve used CGM with all of the above options. My typical Hba1C on MDI pre-CGM over 25 years was 6.5% to 8.0%. CGM had the instant impact of dropping me to 6% and then on lower.

One thing that hasn’t been mentioned here, and I think it’s an important point that is missing in terms of addressing comfort with pumping and MDI is how you eat and what you eat. Again, having tried most treatment approaches so far, reduced carbs makes MDI a great deal easier to live with, but if you’re not doing that, my experience is that there is a much higher level of variability in glucose levels, and as someone has already said, once the insulin is there with MDI, it’s there.

I think the biggest thing I take away from all of this is that you get out what you put in. Whether MDI, pump or hybrid closed-loop, if you don’t make decisions on top of insulin use, such as food regimen, exercise, how and when you test, etc, management of glucose levels is always much harder. Ultimately, we all have to try out the options and find what works best for us.

And that is not only the insulin delivery system, but also the insulin itself.


#129

Hmmmm. You have my attention.

Thank you for sharing this information. When I did intensive PT all summer during 2017, my body absolutely confounded everyone. They said I had the rib cage of a 70 year old. None of my joint problems made sense from a this-causes-this-causes-this-causes-this perspective…they were (and are) very asymmetrical issues. Their theory was that my body was storing psychological trauma in various joints…but the fact that if I lean over too far, one of my ribs does a weird pop/move thing matches what you mention. My back routinely pops when I breathe. My hip bursitis is only getting worse. My shoulder is starting to go.

So, yeah. You have my attention.


#130

Sorry you are going through all that, and I obviously can commiserate! I used to get a lot of “wow” reactions from PTs before I figured this out and started seeing EDS specialists. EDS is a genetic disorder (or rather, a whole family of disorders) resulting defective collagen, so it can affect joints, skin, and other systems, depending on the type of EDS (some also have a lot of vascular effects, but I don’t have that kind). All of the main types, including hypermobile (what I have) are inherited in an autosomal dominant pattern, so basically, if you have it, one of your parents does too (unless a spontaneous mutation), and your kids have a 50/50 chance of having it. My dad also clearly has it (though his issues are much less significant, which is often true for men), my brother may have it, and it seems like most of my dad’s sisters and one of my first cousins does as well. It was super helpful for me finally getting an accurate diagnosis in understanding so many of my body’s issues that previously didn’t seem clearly connected (but I always suspected somehow must be) and getting more effective symptom management and PT. Happy to discuss more over PM if you want!


#131

I also have a lot of random joint issues. A jaw that has dislocated half a dozen times. Unrelated TMJ issues that really freak out my dentists. A collection of various foot and ankle issues that all compound one another. (The guy who made my first orthotics actually exclaimed, “I don’t know how you can walk at all without excrucitiating pain,” after he assessed me.) Lots of other joints that randomly hurt on and off.

I sometimes wonder if just having long-term diabetes has an effect. But I also have a family history of RA and a borderline positive rheumatoid factor, so that freaks me out a bit as well.

I hope you get some answers for your issues. I know that I often hate mine more than any of my other health issues, because they often interfere the most with everyday life, like walking.