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0 pointstitusjohnson1y ago0 comments

My partner is a rare example of this. A little over 2 years ago at the age of 37 she was diagnosed as diabetic and put on metformin. The doctor thought it was LADA, or Type 1.5. The then the doctor kinda.... forgot about her? Historically he's been a terrible primary care doctor, just shoves pills and has no discussions so I wasn't super surprised. I'd been asking her to switch doctors for 3 years at that point due to some bad pill prescriptions that sent her suicidal. She was on metformin for 18 months with no meetings with her doctor beyond switching from an instant release to an extended release due to stomach pain. She got really irritated at me for suggesting that she be touching base with her doctor and progressing the care along, so I just dropped the topic and helped with carb counting, meal planning, and paid for a personal trainer.

About 6 months ago she suddenly started dropping weight. Extreme exhaustion (winded after going up a flight of stairs), dropped 30 pounds in two months, she was starting to get skeletal. Still not being active with her healthcare, but when she went under 110lbs for the first time since she was 14, she finally found the motivation she needed to get proactive and quickly found a better team of doctors who diagnosed her with Type 1 and put her on Insulin immediately.

Today we're putting her 2nd Omnipod on her for insulin delivery. She should get a closed loop system soon, I guess the iPhone support for her Omnipod+Dexcom combo is still going through FDA approval. Her new team says she's lucky to be alive at all. They've been going through her extensive medical history, pointing at occasions when she was hospitalized during her menses and saying "here you were going through diabetic ketoacidosis, that's why you were vomiting constantly", "every evening you're going critically low, that's why family thought you were a closet alcoholic", and "on average during the day your blood glucose is far, far too high, that's why you drink and piss gallons of water per day but are never sated".

So... I guess yes you can get lucky and survive, but with symptoms strong enough that it _should_ be caught.

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thecosas1y ago· 1 in thread

You may want to look into Loop [0] or Trio [1] if you don't want to wait for FDA approval on a closed loop system. They have pretty thorough guides, but I know it can be a lot to take on as the person who doesn't have Type 1 and some endocrinologists aren't supportive of the DIY options. That said, both have great communities who are very supportive and helpful, not just with the software. Best of luck to your partner!

[0] https://loopkit.github.io/loopdocs/

[1] https://docs.diy-trio.org/en/latest/

titusjohnsonOP1y ago

Thank you for the recommendations! If I had the condition you can bet your ass I'd be building these, both look fantastic. I'm going to bookmark both so I can take the time to read their docs later -- Diabetes management from the POV of a developer is right up my alley and I see tons of interesting info in there already.

There is no way I'm bringing these up to her, though. For my own self-preservation. Over the last few months we've had a long-running argument about the operation of her Dexcom glucose monitor -- she's been convinced that it requires a continuous, active internet signal to function. Her proof was that every time she went into the basement at work, her Dexcom stopped reporting her glucose levels. When she comes upstairs, then she suddenly gets notified that she's been spiking or dipping for the last hour.

Everything under the sun, included the sun (remember that solar flare the other week? Yeah that was also pointed at as a problem) has been blamed for her Dexcom not informing her of dips and spikes. Yesterday evening her new Omnipod app told her to stop enabling Airplane Mode or BatterySaver, as these toggles interrupt bluetooth communications. She's been turning those on every time she goes into the basement at work to save battery.

It's just best if nothing I have touched or created is involved in any way.

Projectiboga1y ago

Yep weight is a basic vital statistic. Everyone should weigh themselves at least once a week.

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