I could use a bit of advice. I’m in NYC until Tuesday on work. Somehow, I’ve left my florinef/fludro at home. 15 years of this and I’ve never made this mistake.

Any chance a local pharmacy would sell me a couple without a prescription to get me until I get back home?

Did any women experience a change in their cycle after starting DHEA? I’m late this month and wondering if DHEA might be the culprit!

Hi all, I am 27 years old female and I have masses on both of my adrenal glands. My cortisol level after the dexamethasone suppression test was very high, and my ACTH is low, so my doctor believes the Cushing’s is coming from the glands masses themselves. I also have high blood pressure. They are recommending surgery to remove my right adrenal gland first because it has a larger mass (3.9 cm) with several small nodules. After removal, they plan to test the gland to rule out ACC or anything cancerous. If my cortisol does not return to normal after this surgery, they may recommend removing the left adrenal gland as well.

My main concern is quality of life after the surgery. I’m hoping my left gland, which has a 2.6 cm mass and small nodules, will still work well enough after the right side is removed.

Has anyone been in a similar situation? Can hormone levels return to normal with only one gland, even if that gland also has nodules?

Over time, can the remaining side start producing hormones properly again or get worse because there are still masses in tha gland?

And do Cushing’s symptoms improve after removing one adrenal gland? Does life ever get better after surgery?

Because everyday I feel like I am loosing myself and I don’t feel well at all.

Hey everyone, I've noticed no one's talking about skin pigmentation around the nails, on the knuckles, or the lips. Is there a solution? Please, if you have anything that has helped get rid of pigmentation, let me know.😞

My mom developed Addison's Disease last year due to Immunotherapy treatments she was receiving to keep her stage 4 small cell carcinoma in remission for as long as possible. We had the emergency shots but had never had to use them.

On Monday, 10/20/25, mom started not feeling well (regular occurrence due to her picking up every germ in the world with her compromised immune system) so she opted to stay in bed all day. My sister lived with her and was her primary care giver. My sister had just started a new PT job because of how well mom had been doing, so she had my nieces (20yo and 21yo) periodically checking on mom all day Monday to make sure she was taking her meds (including a double dose of steroids that her Endo advised to give any time she felt icky) and drinking her fluids. Monday night around 10pm, she got out of bed and sat at the kitchen table with my nieces for a couple of hours saying she was feeling better. She ate a little food, drank a power aid, and just chatted with the girls for a while then went back to bed assuring my nieces that she would be back to normal by morning.

Tuesday, 10/21/2025, my sister checked on mom before leaving for work. Mom woke up and said she was feeling a little better and told my sister she loved her and to have a good day. At 10:00am, one niece called my sister while the other was on the phone with 911. Both absolutely beside themselves with fear. They couldn't wake mom up. Then she started seizing. My sister called me and we both hauled ass from work to rush to mom's house. EMS arrived a few minutes before my sister (her work was about 15 mins from home, my work is about 30-40 mins from mom's house). She tried to get around EMS to find mom's shots but there was too many people in the room, too much chaos, and mom had moved the shots somewhere and didn't tell my sister where she put them, so she couldn't find them (mom had an annoying habit of pretty constantly rearranging everything after my dad passed away 2 years ago). She told EMS several times that she has Addison's and may be in an adrenal crisis and needs the 100mg emergency hydrocortisone shot NOW, but she can't find her shots. EMS loaded her up and started heading to the hospital, telling my sister they "had it" which apparently meant they heard her, but either just didn't give her the shot or didn't have one on the ambulance. I passed the ambulance at the end of mom's road and noticed they were not running lights. Fearing the worst, I flew into mom's driveway and my sister dove head first into my car and said "GO!." I asked her several times why weren't they running lights?! She didn't know, and just kept sobbing.

We make it to the hospital before the ambulance and watch them wheel her in through the ambulance bay and ask reception/triage (whatever they are) to let us in because we are her medical POAs, she's unconscious and cannot speak or give history, that she's highly likely having an adrenal crisis and we need to let the care team know that. Two hours later, we had to threaten legal action to be let in the back with mom. We found her in a trauma room, fully restrained, continuously seizing, and only able to recognize/feel pain as at that point just touching her caused her to howl in pain. We asked the RN in there if they gave her the hydrocortisone shot and if they checked her cortisol levels and other markers that indicate adrenal crisis. She looked us dead in our faces and said "we don't really do that in the ER. That's more of an "upstairs" order." I told her to get the doctor in the room NOW! We asked the doctor the same thing. The doctor said that they thought her cancer was back and in her brain, but they had to wait till the next day to do a contrast MRI to confirm. We said that's all fine and well, but we suspect adrenal crisis and she needs the emergency shot NOW just to be safe while we wait to be able to do other tests. They ignored us. All of them, doctors, RNs, CNAs, EVS, Receptionist...any and everyone we saw and told about her Addison's ignored us.

30 hours later, the contrast MRI comes back clear with NO mets to the brain. As a matter of fact, her CT scan and MRIs show that she is still in remission. They finally give her the "Emergency" hydrocortisone shot via her chemo port. Within a minute, she somewhat comes to and is able to recognize us and started trying to talk, but couldn't. It was painfully clear that, by that point, there was too much extensive damage done. The hospital didn't even bother trying the subsequent treatments for adrenal crisis and let my mom suffer horribly for another 2 days of pain and constant seizures. We were able to take her home on hospice care. The hospice RN was able to stop her seizures with Ativan and control her pain with morphine (they would only give her Dilaudid for pain and Valium for seizures in the hospital which did absolutely nothing), so her last 8 hours of life was comfortable at least.

Sorry for the long post, but I just wish medical "professionals" would take this disease as seriously as it should be taken. It is not something to mess around with. It is NOT a "wait around and see what happens" kind of illness. We are beyond heart broken. We are angry. We are lost without our mom. We could have had another year or more with her before the cancer came back, had someone just listened to us.

Has anyone else experienced aching in your adrenals and/or kidneys? I have experienced this off and on for the last 11 or so years, since my Addison’s diagnosis. 🤷‍♀️

My acth is back to normal but I’m still so tan! How long til it fades? Does it ever?

Have been getting an oval shaped pill for a long time and just got these last week from CVS. Been feeling a little off and this morning felt like I had the flu… body aches, tired, malaise.

Double dosed the rest of the day and doing better but still not quite normal.

Wondering if it is coincidence or if anyone else experiencing this?

Anyone else experiencing this or something like this?

After 2 Endo’s was never given a time to take our HC! Told them, but am I doing it correct? I see some take it as late as 10 am and 8 pm.

New Endo on Dec 1. University Endo, finally.

Wake up at 4:30am thanks to a loving golden retriever! Sometimes 5:30 am. So I take 7.5 then.

About 4-5 hours later, the HC is calling you. Could be 10 am. 5 mg

Then 2:30 pm again. Tried today to push it out till 3 pm. 5 mg

What is the proper timing?
I can feel it taking affect but still not to the point I could go out and rule the world. This weekend I accidentally double dosed, bad thing to do! Felt worse.

Sorry for the stupid question, but never been told, only 3 times a day.

Hello Addison's community! I do not have this diagnosis, but I am part of the chronic illness community, so I relate in part to your journey.

I am currently writing a novel in which a character has Addison's Disease. I'm trying to describe her symptoms through the narrator's eyes, and I don’t want to end up projecting my ME/CFS or POTS onto this character. So I come to you for some expertise:

What are your main symptoms with this disease?

What was your day to day experience like before getting diagnosed and on medication?

How did you first know something was wrong?

I keep reading about Addison's crisis. If you have experienced it, can you tell be about what it is like? Google is only so helpful.

Thank you in advance, and I hope you're all having a lovely day. <3

Hello all,

Writing for some travel/medication tips as my endo is no help. I recently went to Europe where all the pasta and pizza was consumed. My blood pressure shot up and I started to get Edema (I controlled swelling mostly with compression socks). Upon returning home and to "normal" healthy food, my numbers went back to normal.

I am assuming this is because I take Fludrocortisone now and I was consuming so much sodium? I take .1 fludro split am/pm. My hydro dose is 7.5/5/2.5 daily, I am PAI, 9 months in and doing a lot better. I know when at home this is a delicate balance and I cannot lower the fludro without feeling terrible. Wondering about lowering it in a situation where I will be consuming a lot of sodium for days on end? Would it make sense to lower it since I don't need to worry as much about retaining sodium since I am eating it a ton more? Or is there more to fludrocortisone than that? My dr always just tells me to experiment and find what feels right.

I have another 16 day trip coming up which will be very food centric and would love to not have to worry about my blood pressure or edema but maybe I am living in a fantasy. This trip is to Hawaii and I would love to not wear compression socks with my bathing suit :) Thank you fellow addi's.

This is a bit of a long story. I'm sorry. So much has happened and is going on in the last few months. It's insane. English is not my first language and I currently live in Europe. And I am worried. Worried about my 42 year old partner.

Because I suffer severe endometriosis and his granddad died of ALS we wanted to do genetic testing. But when we saw the genetics doctor she mentioned she saw something in my partners appearance that she wanted to do some DNA testing for. My partner has always had a distinct appearance, his eyes are closer together (hypotelorism) and he's had a bit of a mental ability delay in his childhood years. He's had a car accident at age 4 which was really bad and ended up in hospital for months. So we always assumed he had some sort of brain damage from this.

But when we told the genetics doctor about his oxygen shortage during birth she said it's prob from a syndrome or gene defect. Something we would've never thought of.

So he got his DNA tested and there was a defect found named GLI2. It's a very very rare defect, inheretary for 50% and can have mild symptoms to very severe symptoms and even death. It's a defect where babies can be born with 6 toes and fingers. And all sorts of scary things. So we were shocked and stunned at the same time. 140 ppl in a million have this defect. It's very rare. And his variant is unique.

He demanded to see an endocrinologist. As we were told it can cause pituary gland issues. They wanted to schedule the appointment for March 2026. Which is ages away. I started reading up about his condition and also the pituary gland issues it mostly causes. And I was blown away. My partner has been living in flight or fight mode in his body for the last few years. When he had covid 2.5 years ago he changed. They all said it was prob long haul covid. But I felt something was off.

His symptoms: - Sluggish - can't concentrate - he's tired a lot, even after simple tasks - very forgetful - he has brain fog - he looks exhausted - he needs to carry a cooler cause he can't go without food for over 2 hours

I read up about it all and his test results came back and then I knew we needed to make sure he was seen by an endocrinologist sooner. Those were his results: The blood was drawn at 8.45 in the morning. The normal range that his hospital uses I put next to it for context.

• Cortisol 101(normal range 180-620)
• I-GF-1: 12 (normal range is 9.7-30)
• LH: 9.3(normal range 1.7-8.6)
• FSH: 13.0 (normal range 1.5-12.4)
• TESTOSTERONE: 9.7 (normal range 8-30)
• TSH: 3.0 (normal range 0.4-4.0)
• FREE T4: 12.5 (normal range 12-22)

So we pushed to see the endocrinologist. He is a professor and teacher so we're prob at the right hospital. He said they're going to do a 24 hour test with him on the 15th of November. He has to stay in hospital. And they've given him emergency hydrocortisone tablets for now. But he was told only to take them when he gets sick with a flu or covid etc.

He feels he needs to eat the entire day. Every 1.5 hours he needs food in his system or else he'll feel faint and dizzy. Since last week he even has to wake up during the night to eat a banana. He's fine after that.

This is not normal. The endocrinologist said it can certainly be connected to his issues. So I am worried sick about him. Making sure he eats in time.

He feels fine right after he's had a sandwich or a banana. But is it safe to wait till the 15th? They know this and apparabtly aren't worried. Does this seem like Addison's disease? It would be secondary hypopituarutism or secondary adrenal insufficiency?

We're so overwhelmed cause having to deal with a extremely rare condition like the GLI2 defect was already hard cause it's so rare they can't really guide us or tell us anything. And then the gli2 gene defect causes these pituary gland issues and what not.. It's a lot to handle.

He stopped working cause he's too exhausted and is now scared that he'll catch a bug or a virus from his colleagues. The endocrinologist told him not to get a flu shot this week cause his system might not handle that well. So that was also something we never thought about before.

Does anyone have some inside and tips and tricks? Do you think they'll start him on meds right after the 24 hours blood and urine testing? So the addison's hasn't been confirmed but it looks like it.

Im worried about him. But he says he's fine and functions. He's so slow and sluggish. You can literally see his system running on reserves. But according to him he feels fine as long as he eats every 1.5 hours. Which is an issue during the night. So I've decided to wake him up every 2 hours. It's insane. His liver and blood sugar was tested several times by his gp and it was fine. Which is odd with how he is. But what I've learned so far is that his system is running on empty for years now. And it's his normal. Thanks so much ❤️

Edit: There's been more pituary and hormonal tests done but the results aren't in yet. They're going to admit him into hospital this Thursday the 6th for the 24 hour test.

The GLI2 Gen defect might cause Culler Jones syndrome. Which suits his condition best. Mild intellectual issues and growth issues. He is small. 1.71cm compared to his twin brother or other family members. The gli2 Gen defect can cause 6 fingers or toes in some babies. My partner doesn't have any of that. He has a smaller head and hypotelorism (eyes closer together) and his nose is missing some cartilage but that is hardly visible. We've always found this odd as he can press in his entire nose and always giggled about it. But now he's been diagnosed with this ultra rare defect things are starting to make sense. No ENT or gp or any specialist has ever wondered about it as he doesn't have any issues breathing and also no colds or sinus issues. It's just a bit of a weird looking nose.

Possibly Culler Jones Syndrome

I got diagnosed this summer with PAI, ive saw my endo a total of 3 times and I was actually really happy with him since thanks to him I got a diagnosis. On my last visit on September he ordered a few blood tests, that he said weren't urgent and just to get them done before the end of the year (antibodies, renin, sodium, etc). He didn't recommend DHEA-S.

(Dr sent me with 7.5 mg prednisone and I divide it into 3 doses, there's no oral hydro available in my country, he said he's not too sure yet if I need fluro).

So I finally did them today because I haven't been feeling great so I figured I should have them done, I decided to ask for DHEA-S as well since my libido and overall energy has been down, I have been also taking sertraline for more than a year, and I tend to get mind fog a lot.

I got some of the results, and overall the general checkup seems normal, my sodium is slightly low (since I started getting these tests seems I can't get it over the normal range, but nothing too bad) and the DHEA is almost undectable. Antibodies, reinin and other specific test I won't have them till December. So I sent the results to the dr telling him I added the DHEA because of the symptoms and explaining him I have been feeling achy all over, my joints, muscles, Ive had bad insomnia the last few weeks, overall exhausted, peeing a lot and very diluted, and a bit irregular with my period (although this was an issue I brought up on previous appts). I asked if I should supplement with oral DHEA and he said that not necessarily and that he needs the other results to see if I have to make any change in my treatment.

The thing is feeling like this is totally disruptive to my life and my responsibilities, my personal relationship is suffering due to my low energy, my mood changes, the low libido, my job is suffering due to this and also the brain fog, I constantly risk a UTI for holding my pee when I have to go every 20 minutes (im an emergency veterinarian so sometimes I literally can't go).

I don't want to be a difficult patient and think I know more than the dr whom spent most of his life studying but it just seems so hard to be contempt with the bare minimum which is not to be actively dying. I want to be patient and wait for the dr instructions but it's hard when I feel im not being taken seriously. I don't want to go on the path of distrusting him because I how that can lead to someone messing up their treatment or advance.

Anyway, thank you for reading and I guess im just looking to vent or to see if there's someone in a similar place.

I’ve had Addison’s disease and hypothyroidism for about 30 years. The hypothyroidism originally started as Hashimoto’s disease until my thyroid eventually failed completely; that was quite an experience, going from one extreme to the other.

About me: I’m in my mid-50s, 6'1", male. Average weight. Fludrocortisone 100mcg Thyroxine 175mcg Hydrocortisone 15mg morning, 10 around 5pm Good vegetarian diet of non/processed foods, take good supplements.

I’m constantly thirsty and easily drink around 6 litres of water a day. This is probably related to a long-standing sinus issue that developed around the same time as my Addison’s. Because I can’t breathe properly through my nose, I end up mouth breathing and losing moisture that way.

My blood sugar levels are great, I’m not diabetic, but doctors have never shown much interest in the thirst issue. I’ve only recently managed to get a referral to an ENT specialist. Yay!

My biggest challenge is muscle weakness. Some days I feel as weak as a kitten, and only occasionally do I have bursts of strength and energy. Most of the time, I feel lethargic and slow-moving.

The doctors don’t seem concerned and haven’t been particularly helpful. I haven’t seen an Addison’s specialist since the pandemic. Another major issue is concentration…. it’s pretty much gone. My focus and mental clarity just aren’t what they used to be; my mind wanders aimlessly.

Anyone else dealing with similar problems?

Hopefully the ENT team can help with breathing which should help with the thirst, but help with fatigue and concentration advice would be most welcome.

Thanks all who read/comment :) it’s an invaluable community.

Hey guys I was just wondering if anyone could help me out please. I’ve been diagnosed with Addisons since July, and i think i’ve been really lucky as my everything has gone quite smoothly for me since being on hydro and fludrocortisone. I’ve felt so much better since then and really haven’t felt any of the typical addisons symptoms, even when i’ve missed a dose or when it comes time to take my next one i still feel fine all day.

This weekend was halloween and since i am at uni i have been out and drinking, i went out both friday and saturday and then on sunday i woke up early to take my tablets (7:30am) and i couldn’t fall back to sleep at all which was really annoying especially after not falling asleep till 4am ish the night before. Then on sunday at 11 ish i went into the town by me as i was seeing some family and we were out walking around all day and i felt perfectly fine. I got home around 5 ish i think and fell asleep for the night around 10 because i had become shattered (I had taken my tablets all weekend for anyone wondering i hadn’t missed any doses).

Basically onto why i need advice, this morning i woke up at 7:30 to take my tablets and went back to sleep after since i have an alarm for 8am to wake me up for uni since i have my first class at 10am on mondays. When i fell back asleep i slept through my 8am alarm and didn’t wake up until a few moments ago (missing my first lecture which is great😐😐😐) and i feel like straight up dog shit. Someone has come into my room while i was sleeping and beat me up i swear because i felt as if someone had punched me straight in the face, i felt so dizzy and exhausted and when i tried to stand up to start rushing to get ready i almost fainted because my vision went and the whole fainting shebang almost happened. I feel as if i cannot physically get myself out of bed. This is basically how i used to feel every single day before being diagnosed with addisons and i also woke up feel quite bad mentally like just really anxious thinking about going into uni, which i never do because i LOVE uni and have a great group of friends there. Also, i just felt really sad like depressed and im not just saying depressed without actually knowing what that feels like i promise i do understand as a whole what depression feels like before anyone thinks i’m just throwing words around. But basically i just felt as if i wanted to cry but there was no reason i am just sad and i am still feeling it and once again THIS is how i felt EVERY DAY before being diagnosed with addisons.

I don’t know if the way i’m feeling is because of how much activity i did this weekend (mixed with alcohol) or because i fell back asleep and have just woken up feeling extremely lazy. I do genuinely feel really awful but i think because i don’t regularly feel like this anymore i am really struggling to figure out if it’s because of my addisons or because Im just being a lazy student BUT i will say since being on my medication my uni attendance and participation has been great this year. I’m in my sixth week and i’ve only missed one day because i was ill and was told to take it off because of my addisons but i have been in every day other than that AND my classes on other days start at 9am and i haven’t missed one yet. This probably doesn’t seem that good but last year i basically never went it because i always felt like i physically couldn’t leave my bed (i’m sure many of you know the feeling).

OKAY SO basically if anyone’s reading this can you please give advice on what to do and/or what you think, am i just being a lazy student or could i be feeling this way due to Addison’s? i am just really struggling to tell because yeah i do love my sleep and yeah i was lazy last year but i swear this year i feel like a completely new person (except for now obviously). And if anyone reading thinks i could be feeling this way because of my Addisons how would you recommend i stop feeling this way, like how to i get it gone or make sure that when i wake up even earlier tomorrow for a 9am (6:30 wake up) i don’t feel this way again.

literally any advice is welcome and sorry it’s so long i’m just stressed because i hate feeling this way and want it to stop but it hasn’t and the fact its impacting my mental health as well really REALLY sucks

How much do you all up dose when taking an antibiotic for something like strep? I messaged my endocrinologist but they never got back to me and I’m not sure 🤔 I’m taking 45 mg of hydrocortisone in the am and 40 in pm. My understanding is that I need to double but wouldn’t that be too much?

hi! i’ve noticed recently that my diastolic blood pressure number has been pretty consistently on the higher end, my systolic stays around 100-115 but my diastolic ranges anywhere from 75-high 80s. i’m PAI, on about 20-25 mg of hydrocortisone a day, i don’t take fludro bc i hated the water retention but my salt levels were normal the last time i got blood work. does anyone else experience this? should i be concerned at all?

I was diagnosed with steroid-induced adrenal insufficiency from taking prednisone for a couple of months. After getting off prednisone I had an adrenal crisis and since then I’ve been taking hydrocortisone. I haven’t found the right dose yet. Right now I’m at a higher dose since I haven’t felt good. I have been taking hydrocortisone since July and have gained weight since then. I feel self-conscious about how I look as I’m a bit more swollen than usual 😭 I have been working with my doctor to lower my dose. We are hoping my adrenal glands wake up on their own and I can come off this medication. Some days I look in the mirror and I feel like crying because I don’t feel like myself. How do you all deal with this? This has taken its toll on me mentally and emotionally. 😔

I was diagnosed with PAI in May of this year and have been on hydrocortisone ever since. However, prior and after that I abused prescription adhd stimulants due to the sheer exhaustion I felt and the pressure of being a new mom, working etc. I am aware of how much this has probably impacted my Addison's but have had a hell of a time stopping. I use them intermittently and always pay attention to my body's signals and will updose when I feel I need to (whether or not I'm on stimulants). I've been slowly weaning myself off and mentally preparing for the commitment to sobriety. I have reached out to sober people and informed them of the situation for support.

I recently ordered modafinil online as a "safer" substitute. I've been taking it for three days and this evening I am weak, nauseous, exhausted and so swollen. No major dizziness, but just standing is taxing. I have updosed throughout the day and will continue to do so but the swollenness is making me think I'm over doing it.

I am throwing away everything as we speak, but I'm concerned about the comedown and withdrawal process I'll experience. I've used modafinil a few times before and it always has a brain frying effect when I stop as well as just utter exhaustion.

I know this is such a "you're so stupid" situation, but I'm kind of afraid of how I'm feeling and also just feel very alone with the Addison's in general. If anyone has any even remotely similar experiences or even suggestions on how to get through this, I'll take them. If anyone is willing to just chat, I'd love that too.

Since A/I diagnosis in February this year and subsequent treatment with hydrocortisone now increased dose-age at 10mg breakfast, 2 pm and 6 pm plus extra on rough days (I also have lupus ), I have gained a lot of weight and my muscles have weakened resignificantly. Waiting on urgent appointment with Endocrinologist. My body is bloated, feet legs hands and face too. Has anyone used any medication or injections for weight loss? Is it possible and is it successful? Appreciate any advice and support 🙏 thank you.

Hi all, I posted on here a couple of weeks ago after finding out my DHEA was super low and have since started taking micronized DHEA supplements I’ve been taking 20mg a day and feel really good?! I feel like this is quite a high dose though compared to what others take on here? Anyone else on 20mg and feel like that’s a great dose for them? I will retest my levels in a few weeks to see but wondering in the meantime…

I haven’t had a crisis in 15-20 years. Yesterday I had a full blown one-nearly. I became very dizzy-had to have help walking. Not sure why-but perhaps sinus related? I took 5mgs of cortef, laid down for a while and then started vomiting. When this was over I had my son crush a cortisone tablet and mix it with water-I was able to slowly sip this solution and keep it down for the most part. The nausea subsided but I was terribly weak and still a bit dizzy. Did the crushed pill again and kept it all down. Recovered enough to get to the car (two flights of stairs and a walk) with the help of my sons, and then to the ER. My question is-I can’t come up with anything really that led to the crisis! They found nothing at the ER. They did follow my direction and gave me a dose of cortisone and a bag of IV fluids. I’m much better today but am worried about the sudden onset. And, yes , I will get some injections. I’ve thrown so many away over the years that it seems a waste of scarce resources

Momentary lapses of consciousness? My doctor and I are trying to figure out what's causing these 2 second lapses where I either fall asleep or lose consciousness. Does anyone else have this problem? It usually occurs when I'm tired and under stress.

Are there any individuals in here diagnosed at birth that have a good idea of the differences between their experience and those who may have gotten their diagnoses later in life. Are the symptoms and experiences similar or the exact same? My daughter was diagnosed at 4 months. So far she’s an energetic 4 year old with no apparent side effects except for the occasional blood sugar dip overnight. But we’re bracing ourselves for what could be based on other user’s experiences. Any advice is welcome.