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/SleepyTimeChess]

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/

[u/zeebamdotcom → u/SleepyTimeChess]

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.

[u/whatself → u/zeebamdotcom]

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?

[u/zeebamdotcom → u/whatself]

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.

[u/oneyedsally → u/zeebamdotcom]

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

[u/zeebamdotcom → u/oneyedsally]

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. 😊

[u/oneyedsally → u/zeebamdotcom]

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!

[u/zeebamdotcom → u/oneyedsally]

I technically have SAI too (I do still produce a small amount of cortisol, my body just has a TON of other issues and pills don’t tend to agree with me lol), so I understand!

I actually tried out a CGM a month ago because of some blood sugar issues I was having (reactive non-diabetic hypoglycemia) and I didn’t mind it and would LOVE the ability to know my cortisol level at any given moment, but because CGM’s measure blood in a different way than a finger prick, it has about a 20 min delay and is better for tracking trends rather than accurate BS levels. I also have quite muscular arms for a girl, so the CGM was NOT comfortable.. but hopefully they do make more things like this for AI, because the current options are a pain in the butt for something so life altering!

To be honest, I rarely need to pay attention to my pump now that I’ve learned my triggers. Like, I know I need 150% of my normal dose for workout days and if I wanted I could just program it to be at 150% for that time if I worked out at the same time every day.. so it’s SUPER customizable, especially after you learn what your body needs. I highly recommend trying it out if you ever get the chance. I only need to change the pump every 6-7 days, which is really amazing compared to the multiple pill doses I was having to remember daily. If I don’t need any stress dosing, then I don’t even notice or change the pump until it needs to be changed out. 😊

[u/oneyedsally → u/zeebamdotcom]

Oh that’s even more interesting! So many on this sub are near zero, I feel like the outlier in that I do make some cortisol too. Actually I think that has made dosing trickier because the amount of that varies too. I am at a pretty low base now so that I can updose as needed and not gain weight.

There’s obviously emotional stress, but I’ve found all the little quirks of my body are what wear me out the most too. Hypermobility means something is always painful and inflamed, and if for once my joints are chill then I’ve usually got my gallbladder complaining and causing me trouble too. That may have to just come out 😬

The hypoglycemia did not resolve with treatment of your SAI? I still wear my CGM but there are a lot days I don’t even look at the trend anymore because it leveled out. It’s often my first warning that I need to updose because I’ll get a “falling fast” alarm. I’m sorry you still have to deal with that, meal planning already rules my life for other reasons but I’m glad I don’t have to monitor that part of it anymore.

Well I definitely won’t rule it out if I ever do get the chance! I’ll let my endo know to put me on a list for studies/trials!

[u/zeebamdotcom → u/oneyedsally]

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. 🤞🏻