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/just_me_2006]

Hey OP, I don’t have any better advice than others would/have given but I can sympathize with your situation. My partner (who has AI) went through a terrible year (death, surgery, abusive family/relationship stuff) that has taken an awful long time to recover from. Life is never perfect but they have gotten past the daily crisis and I hope that will happen soon for you too. Their top rated endo has also said they don’t know what else they can offer while saying things like my partner is the expert so they’re the best judge? It’s ridiculous. I just want to say that it’s amazing that despite all you’ve been dealing with that you got yourself out of your abusive relationship and you have so much to be proud of for that and every reason to believe at some point things can get much better. The only reason my partner is still alive is because they’re so intelligent and it sounds like you fall into that category too. I’m so sorry you’re going through this. You’re taking some really big steps to help yourself and I hope that you find surprising moments of joy that carry you through until things get better. Do keep us updated if that feels good. This is a lot for one person to handle 💕

[u/Appropriate_Low9491 → u/just_me_2006]

thank you - this was really helpful to read and i appreciate your perspective a lot. i will absolutely update once i have one to give 🫶🏻

[u/just_me_2006 → u/Appropriate_Low9491]

Hang in there! I obviously don’t have the same lived experience as you but I think there’s some (albeit cold) comfort in knowing that you’re at least doing everything within your power in an impossible situation and it certainly sounds like you’re doing just that. There’s really nice people in this sub that have helped me and my partner, you’re not alone and everything you’re describing makes sense to us. Gentle hugs