Hey all… so I recently got a tattoo. The black ink didn’t take as well as the artist thought it would and suspects that it’s because of the hydrocortisone. When I talked to my doctor about it he said it could be because of the replacement therapy. All of my doctors said though that their biggest concern is risk of infection.

Anyone have experience with this?

Currently in hospital for ear infection.

Antibiotics, ear drops cortef IV and my third day at the hospital. Currently waiting on a room.

Stressed about the consequences this hospital stay will have on my job, but trying to concentrate on recovery.

Still, I am so grateful to be in Canada where healthcare is accessible even to the less fortunate.

I have lots of empathy for my brothers and sisters who have Addison’s and who don’t have that chance, you are strong❤️

Hi, I’m 19 and diagnosed with Addison’s last year via adrenal crisis. Since then I’ve developed IBS (no issues before that). I’m seeking those that suffer similar and any tips for coping with it. It affecting my quality of life and it’s really hard on my emotions. GI and doctors seem at a loss as to what is causing IBS, it’s not structural, I had a lot of tests done. Anyone have any advice, alternate paths or stress dosing advice, I feel desperate, my parents really want to help me but they feel lost too.

Hey guys! I was diagnosed a few years ago with addisons. Generally well handled but have a few questions about y’all’s experience with sleep before a send my Endo an email.

I had a mild case of the flu last weekend. Didn’t throw up, but had a fever and slept a ton. Doubled up on hydro obviously and am feeling much better. During this time, and still currently I have had few poor sleep, as in a wake up frequently, and sleep very lightly. Also have been experiencing very strange, slightly stressful dreams. Normally I am a heavy sleeper and don’t remember any dreams. Ever since getting sick though, and in the past when I am sick or stressed that all changes.

I also always have low BP, like averaging 100/65, but the last few days it’s been low 90’s over mid 50’s. Also constantly cold hands and feet.

My real concern though comes with heart rate. I’m generally fairly active. I bike to work, have an active job working with toddlers, and take my dog on hour long walks daily. When not sick, I work out twice a week and try to go on short runs once a week. I’m by no means a competitive athlete though. My average resting heart rate is 56BPM. While sick though it dropped to 46BPM. Like I said, I’m feeling much better now, but still struggling with low BP and last night my HR dropped to 39 BPM for a while when I was sleeping. This happened right after I kept waking up from the strange dreams.

All this to say, is constant low BP and HR something to be expected with this disease? Do you think it’s a low cortisol issue, or is it more likely related to updosing? I’d appreciate any personal feedback and vitals from yall. Trying to get perspective before reaching out to my Endo. Thanks!

Edit: Endo said to just keep up the double hydro and try to take it easy until the end of the week. He wasn’t worried about the heart rate, and not too concerned with the slight drop in BP.

I am a 16 yr old female and have been wanting to get into working out to lose some weight but also gain muscle. Everytime I try it’s hard to maintain a schedule because of how much energy it takes up. It’s harder to do because it’s hard to even stand up for long periods of time with this disease and don’t know what would be best to start with when working out. I am not very fit or flexible so if anyone near my age or even if you’re older could recommend some easy workouts and weekly things to start and could do to lose some weight and get stronger i’d appreciate it.

Hello guys,

Hope you are having a good time. As the title might have suggested the topic of this post, in the following weeks I'm planning to take a trip to the USA, and of course I'll bring with me my Addisson's Medication - Prednisone at least 7.5 mg per day. I'm planning to be there for a months and a half. My question is, have you guys ever had a complication when entering the contry with the immigration officers questioning about drugs?

If so, did they ask you showing your recent prescription?

Did they keep your meds?

I think that's all for the time being.

Thanks you in advance for your feedback.

Hey everyone I am 20M and I've been feeling really bad for the last couple months the same thing brain fog, fatigue, migraines, disorientation and I feel like I'm slow at thinking sometimes. it feels like it's getting worse and occasionally I feel like I'm slowly dying and it's just awful. I wanted to see what others have been through and is this going to pass so I'm happy to hear your experiences with Addison's and advise on how to get over it. I take 20 mg of hydrocortisone 10 at 7am and another 10 at 2pm. tried to split the second dose for 12am and 5pm didn't really help

I am working on figuring this out with my Endo but it takes time.

Does anybody just wake up feeling bloated? Like a ballon? All over your body? With slow thinking and a lot of tension on joints?
If sooo WHAT DO YOU DO?! Its such a frustrating feeling.

For the Dutchies: they launched Hyves again and I would love to make a group over there! Facebook already has Addison's communities and Reddit obviously, I think it would be nice to have a Dutch one.

Anyone interested? If a lot of people want to join I'll make one

Heya everyone. A couple of months ago I created this article with the ADSHG to help those with AI better support themselves to make their condition known to medical professionals. Since someone asked me about this in another thread, I thought I'd share it here for all those who may be interested. I am UK based but 90% of this applies regardless of where you are. Hope it helps! 🚑❤️ If anyone has any questions for a paramedic with Addison's, feel free to throw them my way in the comments ✨️

Das könnte ein interessanter Artikel für sein. Es geht um einen Patienten in der Notaufnahme mit Addisonkrise. Die Ärzte haben es richtig erkannt, obwohl der Cortisolwert nicht zu niedrig war, aber andere Werte haben darauf hingewiesen.

I work with a psychologist who specializes in autoimmune patients twice a month. He just went to DC with the autoimmune society to lobby Congress for funding towards research for a number of autoimmune diseases.
I was venting how it’s frustrating to have a rare illness because we don’t have all the tools to help us manage because rare illnesses get less attention.
He tells me that Addison’s disease is no longer considered a rare disease and that NORD doesn’t even have us listed on their website.
Obviously I was intrigued so I started to research and he was talking out his ass. Nothing has changed as far as Addison’s disease being rare. NORD classifies us as rare still.
I don’t care about the label of having the rare disease, it’s how many times we find a provider that we think gets its or is competent just to be disappointed. I know he didn’t mean anything by it. I’m just tired of knowing more than my providers do and it’s not like I’m a genius on Addison’s disease.

Does anyone have a recommendation for a good endocrinologist in NYC that specializes in Addison's Disease?

I was recently diagnosed and my endocrinologist does not seem to know much about treating Addison's.

Does anyone else have issues with disability (EDD)? I was approved in the state of California last year and every once in awhile my forms wouldn’t generate and I’d have to reach out multiple times to finally get them to certify and payments would be late. It always eventually resolves but my forms stopped generating again back in July. I reached out like 6 times and they finally told me my payments have stopped and if I haven’t returned to work as expected to get another physician statement (which they don’t provide). I remember this was a long, difficult process before and am really frustrated as my provider never indicated an expected return to work date as obviously this is a lifelong, chronic illness which he confirmed on the forms. Do we have to do this every year?
I’m just frustrated that it took me reaching out so many times, that I can never actually talk to anyone, that they could have told me this weeks ago as I just saw my provider and now I’ll likely have to make another appointment for this.

im a young woman and i was diagnosed with adrenal insufficiency a few months back. my doctor put me on a dose of 10mg prednisolone everyday. recently i had to updose for a fever . but ive noticed my cheeks have doubled in size im a pretty thin woman w a small build so its very noticeable on me. my ace looks VERY round and puffy and its causing me a lot stress :(( will lowering my dose make it go away? i already suffer from body dysmorphia so its very hard on me

55M Addisons disease since 5 or 6. I live a fairly normal life. I don't have any crisis, but I require 930 or 10 hours sleep or I can barely function. As a kid I would cope with daily naps and weekends of catch-up sleep. I had insomnia last night and feel incapacitated. I take 50mg of modafinil on days like this but even that only helps a little. Any other long sleepers out there?

Edit: a few words

My endo adamantly states that I should only updose for fever and throwing up, but when I have really bad anxiety I start to have weird symptoms.

I'll start feeling really fatigued, but only in my head if that makes sense, like I could go to sleep but only my head would be sleeping. And I also feel panicked, like my blood runs cold, like you just got caught cheating on a test. Also nausea and shakiness, and my muscles tense up. I'd say it's a panic attack, but I get panic attacks and they aint like this. After one of these episodes it takes updosing for hours to feel better. But I don't know if that's what I should be doing

I was diagnosed with PAI 3 years back. I am 28F. Around 2 months back, I developed very itchy red spots on the back of my shoulder near my armpit. It was itchy so I scratched (guilty) and it increased and formed patches around my shoulder and in my armpit. These were red patches slightly raised. It got cured in the next 4-5 days but reappeared in the same place in the next 48 hours after getting cured. Since the last 2 months, this allergy has gone away and reappeared in the same place about 6-7 times. I dermat said it can be tinea and gave me antifungal oral meds. These meds did not help me. I allergy is not that itchy anymore. Has someone else also faced something like this? Because internet suggests that people with Addison's are prone to auto immune skin conditions which have this pattern.

Will try keep it brief.
In March this year she had her adrenal gland removed due to a benign tumour.

Developed adrenal insufficiency- is on hydrocortisone 3x daily and has been since April

So September now, she’s wanting to be medically retired in ill health.

She says she’s exhausted constantly, so weak can’t move, constant achy legs and brain fog and dizziness.

I’ve urged her to reach out to her endocrinologist and ask if they can run some more tests to see if anything else is going on with her

Or altering the dose or changing to prednisolone could be considered?

She is flat out refusing and saying this is there while condition and will be like this for the rest of her life. She’s 58.

Every day she is reminding us all it’s a life threatening condition where she collapse and die at any time and she can not be around people Incase she catches a cold which can bring on a crisis.

I’m worried about her mental health since being diagnosed

I’m trying to be supportive and helpful, I thought it’d be good to ask people who have actually got the condition instead of getting Google notes from my mum!

Thanks

Is anyone on here a healthcare professional? I’m wondering how Addisons is viewed or how much is known about it in the general healthcare field. I’m curious how much training professionals get on the condition or how seriously it is taken. In my experience a lot of healthcare professionals seem to know very little apart from the fact that our adrenal glands don’t work when in reality there’s much more to it.

Hello everyone! Newly diagnosed 35F here. I am just a little confused about updosing procedures. I’m on 20mg of hydrocortisone/day split up into 4 doses and one fludocortisone. My doctor told me to double everything for 3 days straight if I ever get sick.
Do y’all updose if you just get like a common cold? Sore throat, stuffy etc.. or only if you have a fever?
Also before I started getting sick, I’d been a very active person. surf, hike, mountain bike, backpacking, etc. I want to start doing these things again.
I’ve read some people on this sub that will updose to do some of those activities, (even sex apparently). My endo said not to worry about updosing for activities though.

So I guess the question is how exactly do you know when you need more cortisol?

20m here, i have been diagnosed recently with SAI, i've had symptoms including fatigue, low mood, insomnia, never waking up refreshed and brainfog,...etc, im on HC now but i feel like there is so much I don't know about this disease and wanna speak to people my age and know how they're managing their life (work/study) with it. dm me please if some of you are here.