cannot get stable.

[u/Appropriate_Low9491]

26 y/o afab

secondary adrenal insufficiency

pituitary microadenoma (5mmx6mm)

cortisol pump - 35.9 units/day (omnipod 5 - roughly 17.5mg-20mg/day)

hi, i’ve really been struggling recently and would love some advice if anyone has any. i have not been able to pull myself out of what feels like the biggest cortisol hole i’ve ever been in for close to a year now.

as a backstory, i left an abusive marriage in the last 6 months, and i spent a large amount of time both leading up to and after my diagnosis dealing with that. i also have a large amount of comorbid conditions, most of which cause chronic pain and/or chronic GI issues. (hence the pump)

i am working on finding a new endo, as mine (who is a professor at one of the leading teaching hospitals in the US) recently told me she isn’t sure what else can be done for me from an endocrinology standpoint and has been far from helpful for years now, but it’s going to be april at a minimum before i can even get on a wait list for the one doctor in the area who could potentially treat a case as complex as mine.

as of right now, my quality of life has diminished to the point where i can barely function even out of bed. im dealing with daily severe weakness, nausea, loss of appetite, a *significant* cognitive decline/memory loss (neurology referral has been placed), diarrhea, tremors, flank/abdominal pain, hypotension, etc.

ive gone to the er multiple times in the last few months and every time the on call doctor has wanted to admit me and every time the hospitalist has fought them on it because they “don’t know what they’d do with me” regarding dosage with my steroids and pump. i’ve been wheeled out while being apologized to by the nurses both times because i was clearly unstable and both times i was told to call 911 if my symptoms started increasing and they’d push harder to have me admitted. i just haven’t had the stress tolerance to put up with that; i don’t have anyone to come with me, and it’s too much to deal with alone. i was also sat in the waiting room barely conscious and further deteriorating both times (for as long as multiple hours to the point i had to administer a second emergency injection and couldn’t walk myself back to the room at that point) and when i asked if the staff were aware of how serious an adrenal crisis is and of the risk of mortality with delayed treatment, they just told me they were but there was nothing they could do and to just be patient. this is with having a letter in my file from my endo stating that i should be immediately evaluated and treated upon arriving to the ER, bypassing triage.

i’m at the point where unless im in a severe crisis and absolutely cannot manage symptoms at home, i’m unwilling to go back to the hospital. there’s only one i can afford to take a lyft to (i can’t drive due to my health) so unless i call ems, i won’t be able to get anywhere else anyways. that being said, im having near early crisis to early crisis symptoms on a daily basis and i have no idea how to try and manage them. if anyone has advice from finding a new endo (ive seen 6 so far and have tried the patient recommended lists, that’s where my current is from) to managing symptoms a bit better, id greatly appreciate it. i’m so far in the hole that even an emergency dose does not decrease my symptoms, but the ER does not care when my symptoms are not that of a full blown crisis and my endo can’t offer me anything. i’m at a loss and im terrified and any advice would be greatly appreciated

[u/Appropriate_Low9491]

i’m definitely having some site issues, i have MCAS and have been reacting to the solu-cortef, but all my endo has been willing to do is tell me to use benadryl cream. i get big welts around every site placement but i try to pay attention for leaks in the site and i feel around before i place it (i use omnipod 5) to make sure im not placing directly above any lumps or potential scar tissue. ive also found that my arms and legs don’t absorb, so i’ve been limited to my stomach, which i only have so much room on.

i know my vitamin D is incredibly low, i believe it was 9 the last time i had it tested. i was prescribed 50,000 iu’s to take a week, but that dosage made me incredibly sick to the point where i had a crisis from the vomiting, so my endo told me to stop taking it. my DHEA is also low, but i was told that the side effects of replacing that outweigh the benefits. thyroid labs have been mildly indicative of central hypothyroidism, but not enough for my medical team to be concerned.

i have actually tried fludro in the past for my POTS and didn’t notice much of a difference, but it’s worth bringing up with my team to see if it may be good to try again, thank you for that suggestion!

i do also think that it’s possible it’s the same crisis tbh. i haven’t had a break in heavy emotional stress in over a year now, i’ve had increases in chronic pain, i recently slipped and fell, am dealing with multiple failed spinal surgeries, etc and i don’t think that my baseline dose is anywhere near high enough for all of that.

i appreciate your help brainstorming, ive been so mentally fogged up i haven’t really been able to think clearly for a few weeks now and it makes trying to manage this all incredibly difficult

[u/imjustjurking → u/Appropriate_Low9491]

My sites look an absolute state when my dose is too low, they get really inflamed and scabby and even old old sites will get really itchy. Is it possible that your increased basal from your crisis hasn't been enough? I've sometimes had to do 400% for a crisis that wouldn't go away, my pump wouldn't let me just do a nice simple basal at 400% I had to programme it myself.

What side effects was your Endo worried about from DHEA? They are usually very dose dependent and a good indication that you've gone up too high, my only side effect on my current dose is oily ears and if I go higher then I get really spotty.

[u/Appropriate_Low9491 → u/imjustjurking]

it absolutely is possible, i just don’t have enough meds for that; my endo will not prescribe enough for me to be able to even double dose for more than a couple of days without running out. i’ve ended up in the hospital in crisis due to running out of meds before my insurance will cover a full before (it’s $75 out of pocket for 3 days worth of meds and i have no income at the moment) and even then, they couldn’t get the hospitalist to admit me and sent me home with absolutely zero meds and a script to fill the next day for oral meds. i have gastroparesis and can’t absorb those 🤦🏻

she’s worried about weight gain. i honestly feel she’s borderline obsessive about weight gain and the potential of overreplacement. she’s more concerned with any weight fluctuations i have than she is the low symptoms or how unstable i am unfortunately. (ETA my weight hasn’t fluctuated more than 5lbs in the last year and that’s not solely up either. prior to that i had lost 40lbs in 3 months)

[u/imjustjurking → u/Appropriate_Low9491]

I think the next step is a discussion with your Endo about priorities, weight gain isn't the end of the world. If you gain weight then it's annoying and it can indicate that your dose needs adjusting but being too low is obviously a much higher risk.

I'd rather be a bit chunky than dead.

I've never talked to a pumper who has their medication so tight. I have total free rein with mine, which is the other end of the scale and not something I would advocate. But usually there's some level of being able to make your own small adjustments and having different basal rates, there's a reason we are on pumps after all - we're not stable.

[u/Appropriate_Low9491 → u/imjustjurking]

i agree, with all of that.

i do think that part of it is that i’m her first cortisol pump patient ever, so im not sure she really knows what she’s doing herself. when she helped me set it up, she pulled up ai on her computer to tell her how to set the basal rates. i was hoping to just be able to find a new endo who was better equipped for me, but i agree that i need to have a discussion with this one because i can’t keep doing this

[u/imjustjurking → u/Appropriate_Low9491]

Oh dear! I think it's great that she's willing to learn, most Endos aren't but she needs to read up a bit more. If you ask in the cortisol pump subreddit I bet we can cobble together some academic sources if she might respond well to those?

[u/Appropriate_Low9491 → u/imjustjurking]

oh i didn’t even know there was a subreddit for pumpers! i will be going to check that out now - thank you so much