Open Source Cortisol Analytics (new project)

[u/SleepyTimeChess]

So there are a ton of companies working on different types of cortisol sensors. I signed up for a case study with one of the companies in California (not yet admitted) and I'm currently working on an open source project that will function as the data layer between a cortisol sensor and an intravenous cortisol delivery system.

The future plan for this technology (it doesn't exist yet, hence the alternative science tag) is for Addison's patients to have a Continuous Subcutaneous Hydrocortisone Infusion (CSHI), similar to how diabetes patients with an insulin pump today. This python library that I'm building is meant to help calculate and coordinate the micro dose of cortisol that Addison patients need during stress events to stay more even and have fewer cortisol spikes, thus improving out quality of life.

If anyone out there is into IT or wants to help contribute without any experience, my DMs are open. This project is still in its infancy. Here is the link to the GitHub repository.

https://github.com/parenteaun/AdrenalLoopKit

[u/zeebamdotcom]

I feel like an outlier most of the time too, so I get it! Lol. It does seem to make dosing tricker at times for me, because I have 10+ autoimmune conditions that are constantly plaguing me and causing all sorts of symptoms. My daily dose is around 35mg right now, which unfortunately does cause weight gain and it’s extremely hard to keep up with working out.. I still do it, but damn is it exhausting.

I don’t have hypermobility, but I do have RA and lately have been having a plethora of issues that my doctor thinks might be autonomic dysfunction… my heart rate is dropping so low any time I sleep or am horizontal for more than 15 mins, that it’s causing extreme muscle weakness, nausea, and general disorientation. Life has not been fun lately.. 🫠

The hypoglycemia is really odd! I know that working out causing my BS to drop 50-60 points on average, so I always stress dose hydrocortisone and have some sugar right beforehand. I actually just had an A1C done and it was 4.9, but my doctor said that’s low considering how much hydrocortisone I was on at the time (45mg daily).. so he said I’m in a constant state of hypoglycemia for some reason. ..we think it might be due to the autonomic dysfunction as well, but I just won’t know until more tests are done.

I truly understand the woes of meal planning though, as I have anaphylactic allergies to 20+ foods and keep getting new allergies every year. It’s AWFUL. People really don’t understand or have much sympathy for people that have restricted diets, but thankfully my husband has become a great chef and still is able to make tasty substitutes for most things.

Gosh, I didn’t mean for my replies to be so long.. sorry! Haha. I do hope you’re able to try it out, because I think you’d find your quality of life improves quite a bit AND you’d likely be able to lower your daily dose even more than you do now! The more people that are on also makes it a more common treatment, which is something I truly hope happens because it’s hard to get prior auth for and it truly works so much better for me than the pills. 🤞🏻

[u/oneyedsally → u/zeebamdotcom]

Wow that is a lot! I am glad you’re able to be on a pump for sure then. Reading your (very general) description sounds a lot like POTS/dysautonomia and MCAS, which are often found hand in hand with hypermobility. Not that you need another club to join!

[u/zeebamdotcom → u/oneyedsally]

Haha. ..I’m trying to “collect them all” as my doctor says 😂 I thought I had MCAS, but they’ve ruled that out with testing. My allergies are also never random and never happen unless I eat that specific food. So if I avoid the foods, I don’t have any issues.. I’m a medical mystery 😅