Serious issues with medical staff not knowing how to treat Addison's, am I crazy?
Quick edit: I had spliced and paired down some paragraphs before posting this and see that I accidently cut out that my medication is hydrocortisone: so that's what the dosages I mention are for. Sorry about that!
Sorry this is long but it's like 3 major things that have happened and feel really really off to me. I just need some grounding stories or other's experiences maybe.
I have primary, female, middle age, no notable symptoms of perimenopause (literally just spoke to a GYN about those hormones today and she thinks my symptoms are all Addison's related too) I am also missing my thyroid because it rapidly ballooned up and was impeding my windpipe just a few years before my Addison's diagnosis. (It did have nodules on it for around 20 years and major low-thyroid symptoms that whole time that completely resolved upon removal )
A couple years back I was diagnosed with Addison's by an endocrinologist that had 40 yeas exp in the field but has since retired. He obviously loved his work and patients, took his time, and could quote studies and medical facts that were brand-spanking-new from peer-reviewed research and major research institutions etc. He really got me through a lot of wild endocrinology related stuff after years of duds who were like "are you sure it's not in your head?" with my thyroid issues. He caught the Addison's fairly quickly and got me back into really good shape.
Before and after diagnosis, until I took the advice of a bad new Endo last year, I was a thru hiker who dose farm-level gardening. I could work in the sun and hike 25 miles in high altitude terrain with a 40lbs pack and feel good. He had me dialed in after only a few months of a downturn that led to the diagnosis.
I've had several major surgeries since my diagnosis and they went swimmingly with his, what I feel I can safely assume is, standard advice: 100mg [hydrocortisone] in the IV and up-dosing x2 the day before and after, depending on length of recovery factors.
That sounds fairly typical-ish, right? Idk this is relevant though.
I'm in Oregon and more recently moved closer to Portland. I was searching for a new endo here but currently only have Nurse Practitioner that specializes in Endocrinology.
I tried to get an MD endocrinologist at OSHU but her advice, last year, that "20-22.5mg [of hydrocortisone] daily is too high, and that most people with Addison's only need 12.5-17.5 a day, you need to cut your dose." That sounded off to me (the NHS says 20-30 is all pretty typical, right? Or am I crazy?) And, yep, it led to a major downward health spiral. After a few months I could barely walk, my stamina was non-existent, and I believe a lot of my current issues- like EXTREME insomnia (multiple bouts of nearing 96 hours without sleep. I'm lucky if I get 2 hours of sleep a night now with no sleep for a night in-between) I have not been able to be active since lowering my dose. My brain is willing but my body can't.
Anyway, right before she said that- I realized she did not either get, or review, my records. She had started it off asking why I was there, ("I can do a lot but I want to be able to be 100% and I only feel 85%) she jumped in like I had TikTok diagnosed myself and told me I "just needed to eat right, exercise, and take care of my mental health because I was a perfectly healthy adult that probably didn't have addisons at all" (I also did all of those things very well! I haven't eben had depression or anxiety since I was a child!) I was aghast and then we figured out the records thing and she eventually relented, that it was "suspected but not confirmed" (?!?!) and wanted me to retest. My old endo had once said that re-testing after years of supplementation is often inaccurate? He said that a long time ago as kind of an aside but I don't think I'm mis-remembering? Does anyone know about that?
This really worried me so I never went back to her but she scared me that maybe I was too high (I don't even drink coffee or alcohol because I just like feeling "normal" 100% of the time so I'm easy to convince to go low on things) so I tried her advice to see. So, yeah, it took me a while to realize I was getting really bad off, so I eventually talk to the endo NP and she was like "omg 20-25 [hydro] is a totally fairly standard dose, I am completely comfortable with you going up to that again. I think you know your body-plus, yes, all your symptoms sound like you're too low." This was roughly under 2 months ago. The sleep problems stayed on the path or ramping up while everything else seemed to get better.
I got my first colonoscopy 2 weeks ago because I'm still having issues with iron deficiency returning if I don't supplement heavily even after a hysterectomy, (turns out I'm all good in there, yay I guess.) The endo NP and the gastro agreed on a plan that I get a first spot and get IV fluids and hydro started immediately upon arrival. Great plan! The same as my many other way more major surgeries.
I thought I was good after prep that night but, upon getting to admissions, I could barely stand and needed a wheelchair. I told the nurse what was going on and she, literally said "I don't really know what addison's is but when you told them impending crisis, I thought an actual crisis! but thank goodness it's not really like that" I told her it can become one in minutes, let's get it started quickly. After still taking way too long and me prodding her she called the doctor on the phone, who was still driving, who also said to not wait and to get it started. It took over an hour to get any hydro in me. (The doctor saw her injecting me after she arrived her eyes got wide and she said "that should have been done when she arrived") Not only that, before that, !!! that nurse almost injected me with JUST the sterile mixing solution in the top of the solu-cortef but, luckily she was holding the vial next to the filled up syringe, and I caught that the hydro powder was still dry and alerted her that was the actual med, not the sterile mixing solution in the top chamber. She said "I pulled up on the top and nothing happened so I thought this was it" ...!!!... She would have injected me with no med and marked it as administered and I would have gone under like that. While I was already messed up.
Anyway, nightmare, but I got through okay and thought I'd be fine. Felt really good after waking up.
I couldn't sleep again that night and had a BAD cortisol crash feeling upon standing up in the morning: like the one I almost had the day before but faster. Took some hydro, not enough I guess, got a ride to the closest ER to me, since OHSU is pretty far away for an emergency (and because of my past experience with the endo there scared me that I'd be put under her care since she was on my record.) I tried to walk in, realized I could not safely stand upon trying to enter, security gurad rushed and got me a wheelchair and took me up to admissions. Mumbled out I have addisons and it felt like adrenal crash was incoming. Couldn't even call out to them when they called my name to go back. Could barely stay in the chair. Someone saw me attempting to raise my arm and pointed me out to them. They did get me back REALLY fast. Getting a bed to lie down and fluids started helped a bit for a short time. The hydro I had popped upon entering may have kicked in too now that I think about it.
The ER doc comes in, reads my medical history, confirms with me and says "I'm not an endocrinologist but 22.5 mg a day sounds too high, and you had how much yesterday?"
He comes back and said "I spoke with our endocrinologist and we agree that you having it in your IV yesterday, and the extra you took that day, is probably why you can't sleep. So I wont authorize more." !!! "I will run other tests though and I can get you nausea medicine." I told him about my history and how I could always sleep after much higher doses, he knew this wasn't the start of my insomnia, but he just left. A nurse told me he wanted to unhook me and put me back out in waiting and that she could see I wasn't doing well so she was going to push for me to get a room.
Guys, the day of prep and the colonoscopy was only roughly 100mg total over 24 hours, my NP had actually said I'd probably need inject myself with 50 to 100 the night of coloscopy prep but I thought I felt good enough not to, (of course I feel like an idiot now,) and just took it under my tongue.
I was in the ER a few hours. I couldn't even sit up and literally felt like I was on the verge of death by the near end of the stay. The only blood tests they did in the beginning and the IV fluids had stopped working because it wasn't a pressurized drip and I couldn't control my arm to keep it in the right position, The nurses could see how bad I was getting and one finally convinced him to authorize my early afternoon dose of 10mg that I had mumbled out about. That helped a lot and finally allowed me to reach my purse where I took like 20 mg, felt way better, and got myself discharged and the hell away from that place and then took more. I'm now absolutely terrified of the ER but I know I may need to go again (to a different one at least.) I'm on another bout of no sleep and I've had 4 visits with PCPs since. We're trying all kinds of sleep meds, and they're actively trying to get me in with specialists faster, but everything is just slammed here. I also have imaging just to see if I have a pituitary tumor. (Long shot but I have had small vision changes too and different headaches, and have had my eyes checked out by several eye MDs.) Not really asking advice on that, just:
Okay, 20-22.5 mg is not an insane dose, is it? Like I'm not asking for medical advice I just need to hear it again because I'm feeling a little crazy after all that.
Like that ER doctor sounds like he either took limited biased info to a random on-call endo ("hey this chick says she can't sleep and I think her dose sounds high to me") and/or that endo just doesn't really know too much about Addison's, right?
I had back and abdominal pain, I was so spacy and weak, everything in me felt like it was swirling looking for the hydro, my legs were so weak they were giving out. I was so nauseous. My blood pressure was very low even upon arrival (though not critical ever, obviously, I guess) I've had that swirling feeling 2 other times and collapsed and my husband had to shove hydro in my mouth before I could get up. (I now have the solu-cortef and he now knows how to use it)
Do any of you know of any possible steps I can go through if I need to go back to a hospital, like holy crap, what just happened? Like have any of you had experiences where you needed to bypass a doctor and get another? If there a way to get some kind of mediator in a hospital setting? I usually think I'm a pretty capable, calm, easy-to-speak-up person, but don't have a knowledge skillset for idea on how to navigate this happening again.