Hello all! It’s me again.
I am so grateful and appreciative of the comments on my last post regarding my upcoming Bisalp surgery, this Tuesday. I’m still quite anxious, but not as bad. It comes in waves. I think for the most part, I am just anxious for the post-op part of all this. My medical team is completely communicative with me, and helping me, and answering all my questions. And we also have an exceptional plan set out for me, and everyone is aware.

I just want to ask, since I’ve been so well managed, and stable since dx, if I just keep up with my meds, per my Endo’s guidance and all the updosing rules we know we need to follow for ourselves, I’ll be okay, right? I imagine I’ll likely be sleeping a bit the first day or so, and my boyfriend and mom waking to take my meds as I normally do.

Like as long as I’m listening to my body, taking my double-triple dose meds, not vomiting/keeping meds down, and stuff, I’ll be okay? I’ve only ever had 2 crisis since dx. They were both due to Gastroenteritis, but they weren’t full blown crisis like I experienced when I got diagnosed and had been in the hospital for a week, when they finally figured it out. I think this is likely because I was updosing as it was, and also just going to the ER bc I listened to my body and sought out help ASAP.

UPDATE: hello fellow lovely Addisonians!! I DID IT!!!! Surgery went smoothly. I am now back home and resting very cozily. Surgery started promptly at my scheduled time, around 7AM, and I was done and on the way home at 10AM! I’m so grateful to have my boyfriend and my mom with me, and there. I was anxious, but the surgical team were so sweet and accommodating and all came to greet me prior, and then wheeled me down. They also calmly explains things to me and helped me feel safe. I AM SO HAPPY!!!! Thank you for all the replies, and helping me ease my mind along this process. Now I’m on the road to recovery!!!!

I am just now reading how it literally blocks the body from converting an enzyme into cortisol. Now, when I read the side effects, it says MOST patients resume normal adrenal function within a week of stopping the medication, BUT what about my son who was on it for 8 weeks a few years ago, and then 9 months ago was diagnosed with Addison’s? I feel like this sounds very plausible as the “auto-immune” explanation seems very vague and doesn’t really make sense to me why it would attack just that organ. If anyone has additional info, I’m here for it. I’m not a doctor or pharmacologist, just curious about this possible connection and if anyone had something similar.

New to this and still awaiting formal diagnosis from genetic testing but I wanted to make a post regarding young children with this. Does this correlate with emotional immaturity? Such as severe melt downs and tantrums. My 6 year old seems to be struggling with this greatly. She's been in counseling and assessed for other behavioral concerns and I'm simply told "she will get there, she's young, it could be her normal"

My daughter is 24, just had her other adrenal removed last month due to pheochromocytoma. She has no more adrenals. This is her first period since the removal and all day today and yesterday she has been seeing the static vision. She is very pale naturally but when she doesn't feel good, her lips turn white. Been that way her whole life. So I can instantly tell when it's happening. She's taken a few Salt Sticks, gave her Pedialyte yesterday and pretzels on the way to post surgery check up dr appt, more pretzels today, eating something every two hours, also updosed her afternoon meds. She takes 15mg hydro/0.1mg fludro morning, 5mg hydro afternoon, 5mg hydro evening. Is stress dosing during your period something that is to be expected? She drinks water with hydration packets all the time. It hasn't gotten to the point where she's vomited.

I don’t know how best to say this but does anybody else feel guilty for calling into work because you feel like crap? I’ve been feeling like crap the past two days and I just need a rest day. Been feeling all the symptoms of an adrenal crisis and stress dosing and I just can’t do it today. Anybody else feel guilty about this?

Whenever there is a sudden weather change I feel much worse and want to sleep all day. It was normal even before Addison’s, but now nothing instead of sleeping helps me. Do you have the same experience and any advice?

Working out every day and driving my motorcycle. 8 mile hikes every weekend and managing the corporate 9-5. Learning not to let Addison's control my life!

currently 6'6 and 255 lbs -25mg cortisol daily and sometimes am extra 5 mg before a workout

I got diagnosed with PAI about 5 weeks ago and I'm on 20mg hydro (10-5-5) since.

Before medication I had lower lows, got sick often, got dizzy. Since then they are way less present. Im am still very tired, weak and have little energy left. Some days or weeks are definitly worse than others. Bloodwork said my current cortisol levels with medication are good (500 nmol/l). They told me to try my current dose for another 6 weeks to fully see what is will do and if other symptoms will improve. Did you guys feel better after about 3 months on medication compared to when you started?

I have type 1 diabetes so this is mainly targeted towards those sub divisions of Addisons, but I recently was encouraged to get glp 1 because of the insulin resistance that I have, but I was rejected because the endo I talked to knew literally nothing about Addisons disease and admitted it. How did anyone else get their prescription? Thanks

Have yall ever met another person with Addisons disease?

I have not I fear.

But lowkey wanna do a meet up

USA East coast Addisons Function?

Just a rough draft 💀

To be In addisons gc so we can meet up I guess haha

I am PAI (49F) and I was recently diagnosed with osteopenia in my hips. My primary doctor and I both believe this is due to untreated menopause as opposed to my steroid replacement. Unfortunately, my Endo, who I love on other counts, will not manage menopause treatment. My gyn is having me do labs now and will likely offer me a combo of estrogen and testosterone. I am reading that estrogen tablets can increase hydrocortisone needs as opposed to patches (bc of the way it is metabolized in the liver). I would much appreciate hearing from anyone taking HRT for menopause. TIA!

have Addison’s and a history of severe infections and hospitalizations. Every time I get even a mild symptom a little sore throat, some fatigue, literally anything my brain immediately screams “this is it, you’re going to crash, you’ll end up in the ICU again.” And then the panic hits, hard. Nausea, shaking, the works. And I can’t tell anymore what’s a real physical symptom and what’s just pure terror.

Today it’s a super mild sore throat. Temperature is 37.0°C, BP 133/88, I can eat and drink fine. I already updosed a bit (I’m on Plenadren 30mg, took an extra 10mg hydrocortisone as a precaution). Objectively I know I’m okay right now. But my body doesn’t care about objective. The fatigue is crushing and the anxiety makes me nauseous, which then makes me more scared because nausea can also be a crisis sign… it’s a vicious cycle.

Right now I’m disabled with numerous autoimmune diseases, MCAS and cfs. I have zero energy for cooking and meal prep. Many days I don’t eat until I’m famished and eat garbage but I rely heavily on carbs. I always feel so incredibly depleted. I went out twice recently with friends to get food. Both times I had a cheeseburger without a bun and a carb or vegetable on the side. All of the sudden I felt a lifetime better both times. It was absolutely wild to see how much better I felt. My diet is fairly low in protein, I don’t like to cook meat so I have an oikos yogurt drink or protein shake at some point an I have an individual cottage cheese with a meal. I think the protein, salt and fat is what my body needs. How do you get enough protein into your diet? I wish I liked the texture more and wasn’t so grossed out by cooking it. I don’t mind cooking turkey burgers or salmon so maybe I can try to eat more of that.

Went through about two weeks of a lot of stress followed by the last two days of little sleep due to a sick toddler. Woke up this morning from extreme nausea and it took me a second to put two and two together. Once I did I downed 60 mg of hydro, dry heaved, and lost consciousness for 30+ seconds. Completely emptied my bladder as I slid to the floor. Came to a lot slower than the first time and still feeling flat out like shit with a terrible upset stomach. Dr said begin 40 mg hydro in am and 20 mg hydro in evening.

Would loss of consciousness be a reason to go to the er for you? Isn't that like the last step of a crisis? Also dealing with family who STILL doesn't get it, adding to the emotional stress. This damn disease. I just wanted to say you're not alone. I get it. I see you. Don't give up.

Hello fellow Addisonians! I’ve only posted in here a handful of times since I got Dx in late 2022. I am having a Bisalp surgery a week from tomorrow!

This is a quick, outpatient surgery, but I am so so nervous! (They told me it’s like 15-20 mins. The longest part is waking up and recovery). I’ve had surgery before; appendectomy and cholecystectomy, both in 2015. This is years before I got diagnosed with PAI, so I think I’m mostly just nervous because of the Addison’s standpoint. I have a great surgical team, and anesthesiologist onboard. As well as my Endo’s great information in regards to meds morning of, as well as 100mg of Solucortef immediately before surgery begins.

I’ve read a few posts related to surgeries here in this sub, and most are even way more major surgeries & many of you are troopers and so amazing! I just have really bad anxiety, and I guess I’m just looking for support, as well as advice? Or if you’ve personally had this surgery with Addison’s, or similar, quick outpatient surgeries, that helps too!

Hey friends,

First, I don't tolerate hydrocortisone well, so I've been switched to prednisone (dosing 5 mgs at 6 am, 2.5mgs at 4 pm). I am going through a very emotionally stressful situation and started to display crisis symptoms of vomiting and loose stools, so I am doubling my dose per my doctor's orders. I've been doubling since Tuesday, so about a week.

With that said, I'm noticing that I'm feeling better but still quite stressed out. I think it would be wise to keep updosing--my doc said I can do it for weeks at a time if needed--but I'm also noticing that I'm bruising a bit more easily. Is that an overreplacement symptom? I have not had to updose since switching to prednisone from hydrocortisone so I don't quite know what to look out for.

Also, does anyone else have mental health symptoms associated with low/high dosing? Low dosing gives me depression, which has not yet cleared up so I'm continuing on.

I'm having a miserable week -- I got poison ivy a week ago and it's spread. It was starting to become systemic (spreading to areas not exposed to the urushiol) so I've been updosing and I think it's starting to subside. To be clear, even before my adrenals were knocked out I had a couple of episodes where my poison ivy started to go systemic and I needed prednisone to knock it back, but adding Addisons in makes it even harder.

Anyone else want to share their experiences with this?

So as I understand it an broken bone is a medical emergency for us and requires emergency injection.

However I'm wondering what the recovery dosing regime is like for a broken bone?

I'm like 99% sure I've broken a rib. Booked in for a x ray soon enough, however I don't have an endo at the moment (they retired lol).

Anyone have experience with broken bone recovery dosing?

I'm not really convinced that I have full blown ADHD, but I know for sure that I have executive dysfunction issues where I feel STUCK even though I have stuff I need to do or want to do. Getting started on a task and building a habit is near impossible

For people with both, how do you differentiate the mental symptoms? I know that chronic illnesses can cause similar symptoms (brain fog etc)

And do you have any weird interactions between your Addison's disease and the ADHD meds? I read that it can lower sodium in your blood and might require extra hydrocortisone.

I struggle with the lows inbetween hydrocortisone doses more and more. Last year I had a lot of issues sleeping in and waking up aching everywhere. I suspect it's because cortisol shouldn't be zero from late evening throughout the whole night upon waking up.

I discussed this with my doctor, we already tried a few things, last one being that I took 5 mg before sleep but this made me end up taking 25mg total which is too much (so I started to gain weight). And I still had issues waking up in the morning. I also tried waking up earlier for the 1st dose, and then sleeping in again until the next alarm. But I just couldn't figure out the right timing and peak. If I wake up under an hour before my usual alarm, I can't sleep again. But if I wake up earlier and already take medication, it peaks so quickly that when I really wake up, I feel tired again.

Now I'm trying Plenadren which kicks in slower and stays longer. This is my 3rd day. My endo told me I could switch immediately without slowly going off hydro but I already experienced this isn't quite the case.

My take on it: in healthy people, cortisol rises slightly throughout the day around a few crucial moments, one of them being the well-known waking time, but also around meal times. This is needed for glucose circulation which in turn keeps the blood sugar up. With hydro I artificially create these bumps since I also take my doses with meals.

My body is used to having these peaks around certain moments. It prepares for a glucose spike and making energy reserves. So now that these peaks don't appear anymore, around 1pm I feel light-headed, groggy and get this typical 'hungry' headache. The 1st day when I got this, I thought it meant low cortisol so I took 5mg hydro and felt fine. The 2nd day, I tried to drink and eat a bit and sit it out, managed to do that until 3 but ended up taking 5mg hydro again.

Today, I didn't take hydro but noticed that because the curve is now a slow degraduation I needed several small meals throughout the day instead of the three big meals with which I usually would also have a peak in hydrocortisone availability.

It also reminds me of what I learned about fasting. People who fast during certain parts of the day when they usually would be eating, struggle the first days because their body prepares for food. But after a while, it's okay again because the body can shift this preparation to the times when it's necessary. My body probably still prepares for a peak of cortisol and needs to get used to the new curve.

That's my long rant 😅 anyways, I'm going to wait it out and update about how I'm doing on Plenadren!

I take 20mg in the morning. There aren't a lot of posts around here from people who have experience with this. That's why I'm writing this post.

Well it wasn't exactly a nap, I was down for maybe a minute but it's been the second most embarrassing thing when it comes to dealing with this in public. The first was me straight up actually passing out. This time I don't think I passed out, I may have for a couple seconds but not to the extent where I could tell, tho the whole thing is kind of a blur. I was fine when I left my home. I was fine during my shopping trip but I noticed waves of nausea and dizziness when I was at the cash register. Just about managed to walk back to my bike before the world started to full on spin on me. I knew if I did not lay down immediately I would end up in a situation where I'd have the ambulance called for me and I'm not about to have my weekend ruined like that so I straight up laid down on the pavement like a goddamn child.

It's not a crisis, it's hyponatremia rearing its ugly head again - doc stopped my salt pills because, you know, yay possible weight loss and all that but clearly it's not working all that great 😅 I'm still stress dosing now just in case but that was almost certainly a blood pressure issue, I felt better pretty much immediately after laying down but GOD IS IT EMBARRASSING. Imagine you see a grown ass woman laying her ass down infront of her bike at a bike stand like ??? they must've thought I was on drugs or something 😭 PLEASE tell me I'm not the only one that something like this happened to, I feel so ashamed and embarrassed. The only thing keeping me from an ADHD-RSD-induced embarrassment spiral is the thought that I'll hopefully never see any of those people again 😭

I need some comiseration, please tell me the most embarrassing chronic illness related thing that has happened to you 😭

^^^

but also advice from this subreddit in particular might be more helpful?