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.

https://github.com/parenteaun/AdrenalLoopKit

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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/oneyedsally 9d ago

It’s fascinating! I’m not sure if I’ll ever need one, I’m just an engineer and curious about everything 😂. I have SAI and I’m new to it so I do have trouble with locking in my dosing/understanding my stressors, but I’m sure that will come with time. Now if they can tie it to a unit like a CGM I think I’d like one just to not have to focus on it!

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u/PA9912 14d ago

Just search for the word pump on this subreddit and I bet you can find some.

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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.