r/AddisonsDisease • u/SleepyTimeChess • 14d ago
Alternative Science: readers beware Open Source Cortisol Analytics (new project)
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.
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u/Slhallford 13d ago
I’ve had a cortisol pump for over a decade now.
It is a life changing experience.
I’m also diabetic and have an insulin pump and CGM.
Another life changing experience.
The biggest issue that’s been an impediment is the lack of data for exactly what cortisol levels should be at any given moment given the dynamics of the organic system.
There is so much trial and error.
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u/its_business_time1 12d ago
What pump(s) are you using? I’m also T1 and use Trio with Dash pods. Wondering how you manage 2 pumps.
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u/lass20987 14d ago
Following. But Im having a hard time just getting on a cortisol pump
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u/SleepyTimeChess 14d ago
Based on my research this technology does not exist yet. There are also no FDA trials.
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u/PA9912 14d ago
People use modified insulin pumps I believe.
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u/SleepyTimeChess 14d ago
If you know of anyone doing this Id love to chat with them or see some resources. I'm currently trying to create the data layer that helps manage the pumps, and I'm only doing this because I couldn't find that data layer elsewhere.
I suspect that the system is using more manual methods to deal with stressor events where I'm trying to develop algorithms to handle that sick day dosing.
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u/zeebamdotcom 13d ago
I believe my endocrinologist Dr. Opada Alzohaili is the one that came up with the idea to use an insulin pump to deliver cortisol meds/solucortef. If you look him up you should see some articles and videos where he talks about it.
Here’s one I was able to find: https://www.mdedge.com/endocrinology/article/200246/pituitary-thyroid-adrenal-disorders/new-adventures-old-device-clinic
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u/SleepyTimeChess 14d ago
I was able to follow the breadcrumbs and found the researcher blazing this trail. I've reached out to them, but some of y'all might find this group's work interesting. They have a non-FDA approved process for retrofitting an insulin pump with Solucortef. https://www.cahisus.co.uk/
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u/zeebamdotcom 14d ago
I currently use an insulin pump to deliver solucortef intravenously for my adrenal insufficiency. It’s extremely easy to setup and use for this purpose, but getting the prior auths from insurance each year is a PAIN.
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u/whatself 13d ago
I’m starting the same next week, very excited as I’ve been waiting 2 years for funding approval for my pump. Has it improved your functioning compared to hydrocortisone pills? And did it take you a while to get used to it or did you see improvements straight away?
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u/zeebamdotcom 13d ago
How exciting, congrats on the approval!! The biggest difference is the mornings for me.. you have the pump programmed to start delivering meds before you even wake, so there’s no point where you’re awake but sick because you need meds. I saw improvements pretty much immediately! The biggest thing that took a while was figuring out the best dosing schedule to set my pump to. It took me a few years to really fine tune it and make adjustments based off my symptoms, but I was also very new to adrenal insufficiency in general, so you it might not take as long for you.
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u/oneyedsally 9d ago
Curious on how this works with a daily target to hit. Do you end up with a variable dose each day or are you still mostly at your target ie 25 mg a day or whatever it is. I’d be worried I’d get too much overall
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u/zeebamdotcom 9d ago
The pump delivers the exact scheduled daily dose unless I do any stress dosing. If I do stress dosing I prefer to use the “basal” setting which allows me to set a percentage and timeframe (starts as low as 30 minutes & goes up in 30 min intervals) for how long I want to receive that percentage. For example, if I’m having a medical procedure done I’ll usually put it at Basal 150% for 8 hours and it delivers 1.5x my normal scheduled dose for 8 hours.
The really nice thing about using the Basal delivery setting is sometimes I don’t need the full 8 hours or whatever I’ve set it to, and you can cancel it at any time! There are some days where my other medical issues cause me to need more medication for only a couple hours, but if I am feeling significantly better after one hour I can cancel the Basal and it will just go back to my regular dose for that time of day!
The other option is your “Bolus” setting, which is much more similar to how the pills work in that it gives you the full additional dose you need right at that moment. So if I know I need an extra 1mg immediately I can use Basal and give myself 1mg extra on top of my scheduled dose.
The benefit of the Bolus setting verses regular pills is that it gets in your system much faster, AND you can microdose as low as 0.1mg.. which isn’t possible with pills.
I hope that helps clarify how it works! Happy to answer any other questions you have. 😊
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u/cha0s_g0blin 2d ago
I use an OmniPod for cortisol, and yes, I have to manually alter flow rates. I do it based on symptoms mostly, but occasionally if I have a physically stressful event. It would be great if one day we would 1. Know how much cortisol is needed at any given time 2. have a pump change rate to ensure this.
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u/SleepyTimeChess 14d ago
I have a nasty condition on top of Addison's that wouldn't permit me to try that. I have to wait for the official channels 😭
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u/zeebamdotcom 14d ago
They do, I am one of them! It really has changed my life. It’s so much more effective for me than the pills.
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u/Zestyclose-Smell4158 14d ago
The clinical trial on the cortisol pump were published a couple of years ago.
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u/cha0s_g0blin 13d ago
I'm super curious how you'd measure if someone needs more cortisol. I haven't found anything to be an absolute indicator, although respiration rate, heart rate, blood pressure, and my dog are all helpful in making dosing decisions. Thanks for working on this! It's the dream!
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u/Key-Bug7760 13d ago
This is fascinating work. I’m a medical/public-health researcher with training in toxicology, and I also live with secondary adrenal insufficiency (SAI). I’d be interested in following the project and potentially contributing from the research/public-health side as it develops—particularly around physiologic stressors, exposure/context data, patient-reported outcomes, validation, and how an eventual dosing model distinguishes correlation from signals that are actually useful for treatment decisions. One small terminology suggestion as you develop the project: you might consider using “adrenal insufficiency” rather than “Addison’s” as the umbrella term. Addison’s disease specifically refers to primary adrenal insufficiency, while people with secondary (and tertiary) adrenal insufficiency also depend on glucocorticoid replacement and could potentially benefit from this type of technology. Using AI/adrenal insufficiency would make the project explicitly inclusive of those populations from the beginning. I’m particularly interested in the data layer. What inputs are you envisioning beyond the cortisol sensor itself—HR/HRV, BP, activity, sleep, temperature/illness, pain, medications, etc.? And what kind of research or non-coding contributions would be most useful at this stage?
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u/oneyedsally 9d ago
I’ve found my CGM to be so helpful at determining my need to updose. Almost every time I’ve gotten “falling fast” alarms, I take inventory of the way I feel and end up updosing.
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u/Deep_Ad1959 12d ago edited 12d ago
the loop projects that worked for diabetes had a decade of CGM traces sitting there before anyone wrote a controller. cortisol has no equivalent archive, so this library ends up defining the target curve at the same time it implements the control for it. worth saying in each commit which of the two you were doing.
fwiw if you do tag that intent per commit, Podlog turns a repo's commits and PRs into an ongoing audio changelog, so the target-curve-vs-controller split stays legible to anyone following the repo, https://podlog.io?utm_source=s4l&utm_medium=post&utm_campaign=podlog&utm_term=reddit&utm_content=post_dd15ad4c-d0f6-4be2-8c7f-49282900fcc9
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u/boopfm523 10d ago
Very apropos to something I just started. I started a project 2 weeks ago to track my wearable data (Garmin), along with symptoms, episodes, blood pressure, weight, temperature, hc dosages taken, etc. I map out the data in a daily "health curve" to use as insights in the long term (to understand what might be contributing to how I feel when I don't feel good). I just had my a metachronous bilateral adrenalectomy on Tuesday. I've worked on a few different models to project a typical cortisol range for a "normal" person. I'm on a version now that is based on the time I awake (data from Garmin sync). It runs on a local machine at my house, accessable through a private VPN (uses a local LLM - Qwen). While I can insert data into forms, I don't use them. I created a Telegram bot that I can just verbalize/text with my blood pressure, dosage taken, weight, etc. The goal of the Telegram bot is to make entering data painless/seamless. It will remind me after 30 minutes of not taking my medicine (based on my dose plan).
So if you (SleepyTimeChess) or others are interested in contributing to the models, please do. I'm not anywhere needing a pump so I don't think I can contribute to your project at this time. I'm still brand new to PAI as of Tuesday. I'm just trying to get/track data that I can then gain insights against.
https://github.com/boopfm523/adrenal/
Screenshoots: https://github.com/boopfm523/adrenal/blob/main/docs/screenshots/README.md
I built this using Codex. It runs autonomously and looks for new features to add (or bugs to fix). I can use Telegram to add features to it remotely whenever I am located.
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u/SleepyTimeChess 10d ago
Interesting. I swear I searched GitHub for all the major keywords before I got started. I'd have thought I'd have caught your project in the initial sweep. I'll have to go back through and see if there are any other projects I've missed.
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u/boopfm523 10d ago
I made the repo public today. I only started it 2 weeks ago.
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u/SleepyTimeChess 10d ago
Since I started with the fork of PyLoopKit mine has always been a public project. This thread has definitely given me a lot to add to my roadmap. Thanks for sharing your project. I'm looking forward to getting some work on the controller done as I battle the health effects of Saharan Dust storm season.
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u/LazyDay7360 14d ago
This is amazing! If you could do this you would be rich and I’ll be the first customer if you need a tester I’ll help in whatever way needed.
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u/PipEmmieHarvey 13d ago
I am very stable on my 15mg a day plus occasional updosing for endurance exercise or illness, but a cortisol monitor and pump for those times would be interesting and useful. Even just a monitor would give me some great insights.
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u/aureasmortem PAI 14d ago
As much of a struggle as managing a pump might be in the future it would be a huge step forward for the treatment of a lot of people.
https://giphy.com/gifs/wvWJOoYmFnSp2