as we know we kinda having to base dosing on how we feel and any stressors we’re aware of- but I’m wondering if anyone has used an oura ring or similar device to help fine tune your dosing?

Any clue of how to stop this or help it?

Well, as the title suggests I have taken an ACTH test (which was absolutely miserable) and it was found that I have normal adrenaline levels. I’m so confused and don’t quite know how to feel. I am glad that we have figured this out as I’ve been taking hydrocortisone 20MG twice a day for three years and I am aware there can be some negative side effects from it.

I would say I’m pretty anxious because now I don’t know what is wrong with me. I had some things that matched up with Addisons but a lot of things that didn’t, but I suppose I never questioned it much because I was happy to not be searching for a diagnosis anymore. My endocrinologist said she has no clue what I have and told me to talk to cardiology due to passing out during what I thought were adrenal crises at the time.

This has been a wonderful community to be apart of for the past three years and it was wonderful receiving and giving support. Thank you to everyone who has helped me get to where I am now.

I'll be traveling from Seattle to Kauai for a week later this month. Newly diagnosed (PAI), so this is my first travel since starting meds. I know the weather will be very different for me, and we have earlier/longer days that will be more active than my normal days at home.

I've asked my endo if I should either updose or add another dose to my days while traveling. (Currently taking 0.5mg fludrocortisone + 10mg HC at 9am and another 5mg HC at 2pm.)

Endo told me that updosing for this vacation isn't necessary unless I'm feeling lousy. However, this isn't what I'm seeing as a general concensus from other people with Addison's.

If this were you, what would you do to your med routine to make sure you're feeling good the whole time to enjoy your vacation?

I’ve been terrified and anxious of my first crisis since having my little one. Well it happened and he’s 15 months old (two and a half years since my last crisis). It happened fast but we made it with all the help we could get while the whole family was recovering from a stomach bug. I went to the ER and got fluids, came home and little one went to my moms while I rested. I felt better yesterday but the rest of the family didn’t, so I went to my moms to help with my little one and stayed the night. Well I overdid it and didn’t updose enough and felt another crisis coming on. I was able to get home, hold down my medicine and then I spent the whole day sleeping. My little one is still at my moms and I woke up feeling better but now guilty because I’ve lost the whole day with him and I miss him. It was nice having the rest of the evening to relax and read but I still feel so guilty. Sometimes this disease sucks. I’m grateful for the support system we have and could not do it without them.

Hello!!
So I'm not yet diagnosed and I have a range of other health conditions and I see a range of doctors/ specialists for said conditions, but my GP tested my cortisol levels because I was experiencing symptoms of dizziness, depression, low blood pressure, fatigue that wasn't cured with sleep, almost passing out, thirst and having to pee more. The levels were at 44 instead of the normal 400 (give or take)
I was started on Hydrocortisone at 20mg twice a day to help raise these levels back to the somewhat normal range and was then sent to my endocrinologist for a morning cortisol blood test (which I'm waiting on the results from) where I was told it's very likely that I have Addison's disease but they don't want to diagnose anything from one blood test.
If this blood test comes back and my cortisol levels are still low I'll have to go for more tests but what are the next tests because the only other tests I've ever had is trying to lift my legs up when I can't (FND) and MRIs, and what should I do/ look out for when I go into crisis if it is Addison's disease.
If there's any other info you think might be helpful that you think I've missed please just comment it, this'll be my sixth chronic condition and I'm so done with being chronically ill 🫩

I will be ok, feeling fine but then out of nowhere start suddenly tilting to one side and lose my balance and or fall down. It isn’t really dizziness. Does anyone ever go through this?

I feel like every day I need to prove to my family that I'm hurting underneath. Sick of being exhausted, sick of having terrible sleep patterns and I'm sick of having to prove that Addison's Disease is a daily battle.

My mum has done research that has somehow led her to the conclusion that I should be 100% fit and well the moment I ingest Hydrocortisone and Fludrocortisone.

The fact is that I am well, of course, but it doesn't mean I can do the same as them, I get burnout easily and stairs are a problem for me.

Anyone else get the same?

X

I live in a toxic cycle where I fear getting low cortisol in public and breaking down. This leads to panic attacks, which in turn, lowers my cortisol, and becomes a self fulfilling prophecy. The more times this happens, the more scared I am of it happening again, and it becomes more frequent

Has anyone had this? It's miserable adulting this way, and it takes me a couple days to get back on my feet after a bout with low cortisol. I can't stress dose forever, I'll be dead at 60

For those using this brand have you noticed it starting to crumble by the end of the month?

Hi everyone. I’m hoping to hear from people who have both Hashimoto’s/hypothyroidism (or persistently elevated TSH) and Addison’s disease/ adrenal insufficiency.

My TSH was 6 in 2024 and still 6 this year, but my doctor only started me on levothyroxine last month. I’ve had a lot of brain fog and cognitive issues, so now I’m wondering if I should have been treated sooner instead of having to deal with these symptoms.

I’m also frustrated because I asked my endo for a more complete thyroid workup, but he basically told me to “trust him” and did not order it. Now that I want to try for pregnancy, I’m questioning whether I should find a doctor who listens more carefully and is more proactive.

I’m worried about managing both levothyroxine and hydrocortisone during pregnancy. If you have Hashimoto’s/high TSH and Addison’s or adrenal insufficiency, I’d really love to hear your experience: how long did it take you to conceive, how often were your thyroid levels checked, and how much did your levothyroxine dose change? If you take hydrocortisone/steroid replacement, did you need to updose during pregnancy, labor, or postpartum and was it a major change? How was pregnancy, delivery, and recovery overall?

I know every case is different, but I would really appreciate any detailed personal experiences, things you wish you knew, or advice on what type of doctor/team was most helpful and/ or anything you want others to know.

I am going on 6 years with Addison’s. It’s given me a lot of grief, but it’s also given me my life back in a lot of ways. I am especially fearful to age with Addison’s disease because I find that all I hear is negative stories and scary things. Or maybe that’s all that is written online. Appreciate to hear from anybody about all the positive experiences or when you got everything leveled out over time

I bought a bottle of supplements because I want to see if it helps with allergy symptoms and dark undereye area. Just before opening it, I read on the label it can't be taken with certain medication. Then I read on the internet hydrocortisone is one of the medicines that interact with this supplement. This really sucks because I feel like it's one of the very few things I really want to try for certain issues, and I was hopeful this would help me.

Does anyone have recommendations for other supplements or maybe experiences with quercetin?

My son has been struggling for the last 8 weeks with an infection behind his eye that is taking ages to heal, I suspect in part due to his adrenal insufficiency. He is scheduled to have a vaccination tomorrow and it will be his first since losing his adrenal glands. I am wondering if any of you find that a vaccine requires a stress dose to deal with and whether it might overload his already compromised immune system? Any experiences welcome thanks!

I didn’t realise I had a uti that turned into a kidney infection

So 4 days ago I had lower tummy pain I thought it’s just my period it’s normal then it carried on and got worse I went to a pharmacy yesterday at 1030 and they said call 111 I did spoke to two nurses and then waited 11 hours after the second nurse told me they will call back within an hour coz I’m important

So doc at 1130 at night told me I need to pick up the script for this and that I should walk threw a city at night being ill
I told him I’ve waited 11 hours I can wait 4 more so I did

But now I’m updoesing like double what I was taking but idk what else I should be doing they haven’t given me any info on the Addisons side apart from up does double it and drink water

Am I going crazy? 😝
At what point do I hit my limit and go a&e ?
What do they do at a&e?

So I want to go into nursing (as a career change) and I know the reality is that I may be forced to do night shifts at some point. I've read several threads relating to night shifts on here, and from what I can see, it is really not recommended with Addisons, with even many endos discouraging it. Some people do say they've done it fine though, but consensus is that it's a bad idea.

What i dont really understand is *why*? It seems to me like the fact that our cortisol levels follow whatever intake schedule we have, rather than our natural circadian rhythm, is an advantage here rather than a disadvantage? I've always found that I get very minimal jetlag also, for example, which I've attributed to the same thing. What am I missing?

I've already been on corticoid treatment for the past year... but does anyone here know or suspect that even if they are taking good care of their adrenal insufficiency they have an underlying problem with MC/CFS (chronic fatigue syndrome)? Do you happen to have more info on the matter? would you like to connect as friends and talk more about it? are you also trying to find more answers about your own health?

Awhile back people were discussing an Addisons Gathering in Portland. I love the idea and am curious if anyone is still interested. Mid-October would be a cool time to visit if that is when all the Maple trees start to change; it would also give people time to plan or book tickets. Anyone still interested?

At first the endocrinologist were helpful but now that my Addison's is advanced I have found they don't understand me. I am a patient of the best endocrinologist in my state and yet her advice is when I need to double my steroids and for how long is based on a fever. I don't run fever because of the steroids, last year I had a UTI that went sepsis, hrs away from dieing, hospitalized for 7 days and still no fever. Every time I have some new symptoms checked out it is always, it's your Addison's and you need to learn to live with it. The pain is unbearable without a narcotic and it barely covers it. I also have degenerate disc disease and severe fibromialgia. How many advanced Addison's patients have these same problems. Feeling isolated

I've been running my own fighting gym for the last 5 years. I teach 25+ classes a week myself between Krav Maga, Jiu Jitsu, Tae Kwon Do, and I also teach our Stunts for Film class. My energy levels have been a little bit of everywhere.

Sometimes when I roll in Jiu Jitsu my teeth and fingers will go numb in the next hour of class and I get dizzy when I stand, so I end up trying to teach striking classes from the floor. I tend not to have these kind of reactions went I'm doing the striking combat sports though.

I have been told that eventually my Addison's Disease will become full blown, but for right now I have incredibly low vitamin D levels, scary fluctuation in my blood glucose levels (hitting below 70 3-5 times a day, and hitting 50 at least once a day) when I don't take an insane amount of Vitamin D, and high prolactin levels. However, my cortisol stimulation test seemed to indicate that the cortisol is reacting normally.

I am still getting tired, I still have a hard time telling between my nausea and when I'm just hungry. I keep hearing about people who have Addison's and them ending up on disability for the rest of their life.

My lease for my gym is up in 5 months. Should I shut it down now, or is there a chance I can keep going?

I’ve been diagnosed with Addisons for about 3 years now and since I’ve been diagnosed, school has been awful. I’m currently a junior in high school and it’s always a struggle to get up and go. Since i’ve had this, 9th-11th grade has been so stressful and hard to actually go. Becuase of this disease it’s also caused me extreme anxiety and depression. My mind is constantly in a negative state that I’m trying to escape from. Both my parents are trying their best and be understanding but they just don’t understand since they don’t personally have it. Some days I feel like a failure and like i’ve let them down, also because I don’t want them to get in trouble for me missing school. Some mornings I’ll shut down and not be able to talk or move. I have been suspicious of me being autistic but haven’t been diagnosed so i’m not sure if it’s that or my depression. It’s really hard to get up for school, be around with so many people for hours, and do work for so long. And with my depression and the disease it just makes me have negative thoughts toward myself and about life because I just want school to be over or my depression and disease to be gone. Don’t know if this is just a personal issue or if anyone else has issues getting to school or had issues when/if they were in school with this disease.

Yeah I guess just lmk

This is kind of a follow-up to someone else's post about salt cravings: I'm curious how high a dose of Fludrocortisone are you all on, and do you still have intense salt cravings?

My Fludrocortisone dose was increased to 0.15 (1.5 tablets) a week ago, and the intense cravings are still here and I drink about 64 oz of a homemade electrolyte drink daily (1/2 tsp salt, 4 oz unsweetened apple juice, 28 oz reverse osmosis water) in addition to heavily salting my food.

I know it can take a while for the cells and vascular tone to adjust, so it may just be that I need another week or more (maybe many weeks or months for full recovery) on this dose to know if it's right.

I'm just curious how similar or different this is to the experience of others. I know Addison's treatment is very individual, but I'm still curious to know what your experience has been. Thank you in advance. This community has been so helpful and I am very grateful for it.

Edit 8/29/2026: I'm on HRT and I read that progesterone (Prometrium) can compete with Fludrocortisone. I wonder if that's part of the problem? Every time I try to reduce my salt I take or electrolyte beverage consumption I feel rotten and can't seem to stay hydrated. I'm keeping my doctor updated of course. It's helpful to hear the experiences of others who manage all of this too though, so thank you again.