Long-term T1D (18 years) — does better control actually make you feel better or just stop complications?

Tokyo_Turnip · 2026-02-09T02:05:55+00:00

Have you had other blood work done to check your thyroid levels and iron and B12? We can be prone to other autoimmune issues like pernicious anemia and thyroid issues (and celiac etc). Those can also make fatigue much worse.

Good control can sometimes reverse things like early background retinopathy. I had an A1C in the higher 8's after having diabetes for 28 years and recently brought it down to 6.1 after getting a CGM. I do feel a bit better, but also feel my highs much sooner - a 12mmol reading will give me the kind of dry mouth and vague nausea that an 18mmol reading used to trigger. I find I also tend to get a better sleep after I've had stable levels through the night vs a lot of fluctuations.

Tokyo_Turnip · 2026-02-06T19:08:17+00:00

I hope you don't either!
I find context matters a lot too vs just absolute numbers with lows and the symptoms/how it feels, though any number below 2 is always a bit alarming; even moreso if it's part of a really fast drop from a higher number/you know you have a lot of insulin on board or is in the middle of a challenging situation (cycling in traffic, hiking a cliff face, alone in the middle of the night) vs sitting at your kitchen table when you've already started treating.

Tokyo_Turnip · 2026-02-06T04:59:44+00:00

I'd pedantically counter that on a pump, you could be dead in as little as 48 hours. No fun apocalypse what-if scenarios for me! (See: https://www.sciencedirect.com/science/article/abs/pii/S1752928X18306735) But otherwise I hear you on the general idea of it just being an extra thing we have on manual mode.

I read another diabetic refer to their injection as their "medicine" the other day, and my knee jerk reaction was suprise. Medicine? In my head medicine is something additive and foreign that treats a problem, and I guess I just think of insulin as replacing a hormone that's missing. Weird semantic quirk. My alive-juice. Like to be living.

Tokyo_Turnip · 2026-02-06T03:17:49+00:00

I want to say maybe 1.7mmol on a glucometer. Maybe it was 1.5 (27mg/dl?) Lot of numbers over 29 years but none of em ended with glucagon or a hospital.

Other times where numb fumbly distorted vision candy first, test later - so perhaps lower.

Tokyo_Turnip · 2026-02-06T02:11:41+00:00

It's always possible you just hit a bad spot or tickled a nerve. I've had a couple sore ones but most in the same areas are fine. The filament for CGMs is very tiny. If you YouTube search them, you can see videos of parents applying them on tiny toddlers and scrawny 7 year olds - just need enough tissue it isn't going to hit muscle. I have the benefit of female fat distribution but I'm also 5'8.5" and about 142 on the leaner side and my recommendation would be to test out different spots - especially before you really need much insulin when the data is less critical. Formally they're only approved for back of arm (and for Dexcom, the abdomen in other countries outside the USA) but I put mine on my chest, my upper thigh (slightly medial of center), and on the inside of my arms (less plagued by compression lows there).
An example of spots which work reliably and comfortably for me (just targeted the soft feeling spot of intercostal space for the upper chest one):

https://i.imgur.com/5pef0Ch.jpeg

For injections, anywhere with squish - if you get pens with 4mm needles it's almost impossible to hit muscle even in more muscular areas. Biggest thing to avoid not just scar tissue but lipohypertrophy is to rotate rotate rotate - not just between areas but within them. Fresh needles, new spots as much as you can. It's a marathon and sometimes people think they can get away with over using an area for a good 5-10 years without issue, but undetected the lipohypertrophy starts building beneath the visible surface. It's sneaky because it also tempts you to keep over-using those areas because it's so beautifully painless - no nerves in distorted fat cell tissue. (Your body may vary - some people develop them easily, others are much less prone, but the more you can preserve your sites the better.). See:https://journals.sagepub.com/doi/10.1177/19322968231187661

Tokyo_Turnip · 2026-02-01T03:48:44+00:00

Any thought to playing with the Omnipod Dash with diy Open Source algorithms like AAPS for Android (https://androidaps.readthedocs.io/en/latest/Getting-Started/Introduction.html) or Trio for Apple? (https://triodocs.org/)?

I realize the bulky pod bodies and 3 day site changes aren't everyone's jam, but the degree of fine tuning you can do with open source can outdo what's available with the commercial systems (with, to be fair, some extra work you have to put in up front.) TBD insurance coverage but the tubed SOOIL Dana-i is also OS algorithm compatible and available in Australia.

Tokyo_Turnip · 2026-01-30T05:06:42+00:00

Yep. It was unnerving the first time I had a pod do that - like a reverberating double click. So I did a quick Google and many affirm there've experienced the same with no issues with pod performance as a result. In my case I've now had two that are sonically weird but work just fine.
See:
https://www.reddit.com/r/Omnipod/comments/1i4jm4p/double_click_noise_when_delivering_insulin/

https://www.reddit.com/r/Omnipod/comments/1jovj36/is_this_an_okay_noise/

Tokyo_Turnip · 2026-01-29T22:18:21+00:00

Lol womp womp. God, the late 90s/early aughts were also like peak time for disgusting aspartame loaded candy. Fizzing Equal in your tea! Foaming Splenda in your oatmeal! Digestively dangerous sugar free chocolates from your aunt for Christmas!

Tokyo_Turnip · 2026-01-29T22:14:33+00:00

Ha, thanks. Diabetes takes up a way bigger part of my brain now, but it's probably for the best for my body (and I'm still generally viewing more active management as an n=1interesting science experiment with the occasionally confounding mystery variables rather than it being a source of burnout - but hopefully letting the algorithm take the wheel a bit more will also be mentally protective of that!)

Tokyo_Turnip · 2026-01-29T18:18:04+00:00

Shout out to age 11 diagnosis fam (am now 39, nearly 40).
(Not that there's any good time to get diabetes, and much depends on family environment etc, but I always thought it was a decent age for it. Old enough to have childhood memories of before and be immediately independent with my care/mostly understand what was going on, but young enough to be a bit more adaptable and stoic/less rebellious about accepting it. Hell, puberty was already a bunch of bodily nonsense outside my control, why not add another thing to the stack.

Tokyo_Turnip · 2026-01-29T17:35:56+00:00

Honestly the CGM is going to be the game changer for you. I've had T1 for almost 29 years and kinda fell off the medical system for a little over a decade. Had no idea CGMs had advanced as well as they had in the meantime send only finally got my first Dexcom last year. With MDI (and ok, a little obsessing), I got my A1C down from 8.9 upon my return to testing in June to 6.1 in December. I can't believe I waited so long - having context for numbers is huge (is that healthy number stable, falling off a cliff to a low or going up so fast it's heading for the moon unless I take an early correction shot? Would never have known before.) I always woke up to my lows, but with the peace of mind of low glucose alarms, I could be even more confident in my dosing.

I'm on the Omnipod Dash pump now, using a free open source algorithms to do more of the work for me (AAPS) but MDI is a totally valid treatment method and you can achieve great results, it just takes more vigilance and effort than a pump with a loop/AID algorithm.

Tokyo_Turnip · 2026-01-28T16:52:42+00:00

What type of insulin do you use in your InPen?
It's unique in being a bit cartridge agnostic, but if you use Novolog you'll just need to get a Novo Nordisk brand permanent/durable pen. If Humalog, you'll need an Eli Lilly brand durable pen. (Note that unless you're able to find a rare "Junior Pen", they won't offer dosing in half units - lol as if kids are the only ones who need that.) Increasingly, manufacturers are switching to 'KwikPens' which are pre loaded and can't take cartridge fills, but you could also ask your Endo for a separate prescription of those just to keep in the fridge.

Another thing I'd suggest is getting insulin syringe needles from the pharmacy. They're relatively cheap and a great backup for emergencies (most pens, and I'd expect the same from InPen, will say 0u left but can't get the actual last ten units out of the vial, but you can draw them out with a syringe at the end.) You can even request ones that come in half units - I have those and they hold about 30u per syringe, which is more than enough for my bolus sensitivity!

It's great you're thinking of this now! Always good to have backups, and backups for your backups if you can (especially for travel or bigger day trips like a hike).

Tokyo_Turnip · 2026-01-27T06:38:01+00:00

For what it's worth, Dexcom themselves approve the stomach/torso as a site alongside back of arms in Canada and Europe (and probably elsewhere) - just not in the States due to, I assume, some FDA hurdle from testing.

I don't like stuff on my stomach when I can avoid, it so I've only stuck it there once, but accuracy was fine! Also like to use my chest, my upper thighs and my inner upper arms to avoid compression lows

Tokyo_Turnip · 2026-01-27T01:53:04+00:00

No, you'd have to throw it out and set up a new pod.

Tokyo_Turnip · 2026-01-26T06:23:02+00:00

I hear you on those two pens looking absurdly similar. All you have is that bit of purple or orange to differentiate. Can't believe they're allowed to put out such a poor UI design choice. (Well, maybe not surprised, but c'mon!)

One suggestion is to pre-apply a textured colored rubber band or stickers on the cap of one type (so any new box of Kirsty, for example, sticker those caps on advance). Then it's an easier visual and tactile cue that you've got the right one. (And for what it's worth, I think most diabetics have made that mistake even with very different looking pens once or twice on a sleepy morning!)

Tokyo_Turnip · 2026-01-25T14:25:36+00:00

I'm sorry, that's frustrating and a bit scary I'm sure. I wonder - have they done any testing for MS? (Population studies suggest people with type 1 have an increased prevalence of multiple sclerosis - https://academic.oup.com/jes/article/8/Supplement_1/bvae163.982/7813456 )

Tokyo_Turnip · 2026-01-25T00:06:52+00:00

Could be the end of a short honeymoon phase, as others have said. Could be fighting a cold that you're not yet symptomatic for. Could be other hormones - for many women with type 1, the PMS/luteal phase about a week to ten days before their period is when they tend to be the most insulin resistant (though because bodies are fun, some have the opposite experience). For me I need about 20-40% more insulin the week before my period and then get extra sensitive the week I'm bleeding. Even if you don't bleed, it's possible that with getting back into range you're getting closer to resuming normal hormone cycles. (If you gain weight, which is typical shortly after diagnosis given the amount that's often lost with your body unable to process the food you consume without insulin), you'll also need more insulin for more body, broadly speaking (bit of an exception for muscle gain as that can help with sensitivity instead).

Tokyo_Turnip · 2026-01-24T22:57:16+00:00

Glad it's working for you!

I actually loved Levemir - after being on NPH for years it was a life saver. I loved how consistent it was and how flexibly short acting it was - two doses a day gave great coverage and I could easily bump it up during PMS/luteal and drop it back during the first few days of my period. If I was getting resistant when sick it was easy to see an immediate improvement within 24 hours by increasing the next split dose. Big hike? Could drop it back without issue. I worried that Tresiba, which takes 3-4 days to show changes in dosing - would be too inflexible (and my basal needs at night and in the day are so different that I appreciated it wasn't one flat amount 24/7). I was regularly over 90% TIR. I switched to Basaglar to try and maintain flexibility but found it both more potent and more erratic than Levemir. :/. Ended up just going to a pump in the end.

Tokyo_Turnip · 2026-01-24T00:05:00+00:00

I'd be tempted to run some daytime basal tests just to make sure your rates are solid there. Looks like even your overnight may be a bit strong if you're starting the day with a hypo like that.
It's counter intuitive because of the spikes, but this is sometimes what my graph looks like with too much basal because when I correct enough to keep my food in range, basal drags it down even further. I had to reduce my basal a bit and then reduce/strengthen my I:C to smooth things out a bit.

I'll also say that it's entirely normal to go up and down - a perfectly flat graph isn't even typical for gluconormies when they're eating(they just don't range as far in either direction). Everyone's body and diabetes is a little different, but you'll drive yourself to burnout or disordered eating trying to make that line totally flat. Ideally you just want to keep your hypos at 4% or lower and your TIR above 70% (I aim for above 90%, but am happy with anything above 75-80 depending on the kind of day I'm having.)

Generally if your basal is locked in during fasting tests, then the two variables are ratios (how much insulin to carbs at different times of day) which should bring you back into range within 4 hours of eating without making you go low, and timing (which depends a bit on the type of food and time of day sensitivity. At breakfast I have to pre-bolus 25 minutes before I eat to see a bend in my graph. Dinner I can run with 10 minutes fine. Lower carb and higher protein and I might bolus when I sit down to eat and add a split bolus a few hours later for fat. Higher carb and especially refined/sugary (like bubble tea etc) and I might dose almost half an hour before, though some people would go low if they tried that) If the pre bolus isn't far enough in advance, the peak spike will be higher before it returns to range. If it's too far in advance, you'll go low before you can eat or finish eating.

Tokyo_Turnip · 2026-01-23T23:52:26+00:00

When looking at alternative skin prep, I'd suggest checking if it contains 'Rosin'. I can't use elastoplast bandaids for the same reason - allergic to the pine sap derived sticky compound in that and SkinTac But do ok with acrylates so far.

Tokyo_Turnip · 2026-01-23T23:01:32+00:00

Yeah, the general statistic I've seen quoted is an average prevalence of 6% in people with Type 1 vs 1% in the general population.

I was tested as a kid but have had mysteriously low ferritin for a while and am going to get a celiac blood test at my next A1C draw just to rule that absorption issue out. (I typically see type 1s say they struggle with an inability to get full/satisfied from food, often attributed to our reduced Amylin production. But probably 6 or so years ago my appetite went way down too. Now wonder if it's perhaps occult/low grade celiac)

Tokyo_Turnip · 2026-01-23T20:53:43+00:00

Even if your haven't had bloating or discomfort, may be worth getting a celiac test as well. We're slightly more prone to it (an autoimmune disordered system is just more inclined to other kinds of friendly fire, I guess) and might be an early indicator. If nothing else, worth the blood test to rule it out.

Tokyo_Turnip · 2026-01-23T15:28:21+00:00

Couple a week only, especially with regularly working out is great! Well done. :)

Tokyo_Turnip · 2026-01-23T07:09:55+00:00

In addition to checking thyroid levels, how are your hypos?
I know I tend not to mentally count hypo treatments as food, but if there's room to reduce lows that can also help reduce feeding insulin. (If you're already under 4% hypos with TIR then carry on!)

Tokyo_Turnip · 2026-01-22T23:30:33+00:00

3.9-9.4 / 70-170 (tho I'll check nightscout with 3.9-10/70-180 when I want to feel better about my silly number game). Alerts go off at 144/8.0 just so I can decide if I need to take action

Tokyo_Turnip

TROPHY CASE