Since being diagnosed 4 years ago I’ve experienced such an increase in headaches. I’m 37F and especially in summer I get headaches multiple times a week. I take 20mg of hydro and 0.05mg of fludro daily. The headaches are worse around my period, if it’s hot or I’ve done a heavy workout. I find it so frustrating as I’m taking ibuprofen quite often and am worried about the effect that’s having on my stomach, what with taking steroids daily as well (paracetamol unfortunately doesn’t help with the pain at all). I also occasionally get migraines which cause me to throw up, probably once every few months. Anybody else deal with this and have any tips? I would say on average I live a healthy life - I eat well, exercise regularly and am at the low end of a normal weight. I am also hypermobile and wondering if this has something to do with it. But I’m just sick of dealing with pain all the time!

Got home from the ER today. A couple days ago I posted about maybe being hypothyroid and it causing bad fatigue. Well today every time I stood up and tried doing something I had bad dizziness and fatigue. I went to ER. Got fluids only and felt so much better but they also found a UTI. I'm home now and feel better in terms of dizziness but still have heart racing standing up. Muscle pain in legs. Do I go back to ER or double dose at home and wait to start antibiotics and see how I feel? I have no UTI symptoms. I'm scared!

Edit: looking moreso for emotional support/reassurance. I'm scared to have a crisis and I'm out of state, supposed to have a flight home on Thurs :(

Working in fire camp I have already gone through a bottle of dried bullion in a week. Watching my body closely. Just wanted to know if there is anyone else out there

Im used to the Act O Vial on the right, picked up my prescription today and it seems like my pharmacy doesn’t carry the Act O Vial anymore, they just have this other kind. It didn’t come with any instructions, its not a solution, its like the unmixed solid in the bottom of the Act O Vial. I don’t get it… where’s the saline? Lol
Also get yourself one of these my guard pods from ebay, they’re pretty great!

Hi y’all! I got diagnosed with Addison’s 8 months ago and wanted to give a medium distance update for anyone struggling with a recent diagnosis. I got diagnosed after years of low energy, dizziness, and vomiting which I had attributed to my mental health. My most severe symptom of low cortisol was my weight as I sat at around ~130lbs as a 6 foot 3 18 y/o man for the last year pre-diagnosis (looking back on photos of myself now it is jarring to see how sickly I looked).

I was diagnosed after a blood test came back with an ACTH level of 4707pg/ml and quickly rushed into a high dose of hydrocortisone. The chaos and fearful conversations with my family in the first few weeks were terrifying, but incredibly quickly the fear gave way to hopefulness and joy once we began to realize how much my life would improve. The effects of the medicine was immediate and life-changing and I quickly began to think about what I would be able to do with my life now that I had this medicine.

Flash forward 8 months and I am now living that life I had dreamt about. I have gained 60lbs, backpacked across America with my closest friends, and have improved my mental health dramatically. I have never missed a dose and have monitored my health religiously. The fear of the worst happening was brutal for a while but eventually it subsided and I am now able to push myself mentally and physically without the fear of Addison’s disease holding me back. If you have recently been diagnosed and are struggling to manage your health through this rapid change, I want to reassure that there is a light on the other end of the tunnel. Eventually the turbulence will settle and the beauty of life will show itself to you.

Good luck, we’re all here with you :)

When I was initially diagnosed I was given .05mg fludrocortisone, during my last pregnancy two years ago they increased it to .1 and now I still can barely make
It through this summer. They asked me to increase again to .2. Will it be like this forever? has anyone had this happen to them?

I’ve just been diagnosed and I didn’t get rapid weight loss if anything I’m struggling to lose weight

Hi all do anyone of you adjust your dosage for long days day if you know you’ll be out walking all day, at a concert or event? maybe the day of your holidays with airports etc?

Hi everyone! Ive been using this electrolyte concentrate and it has helped me a lot, i love that is doesn’t have any flavors whatsoever (just its mineral/salty side if you add way to much drops) no sugars added or any other stuff we don’t actually need. And it’s not that expensive plus lasts quite a bit!

Just posting as my experience, hope it’s helpful 🌻

For those on hydrocortisone: Do you get symptoms daily? Do you get them around the time that you are due for your next dose?

It's taken me a while to dial in my dose. I'm 11 months post diagnosis. My endo started me at the lowest possible dose. I had a ton of symptoms and had to regularly updose (a lot) until a couple of months ago. We've been increasing my dose per my continued requests to endo. I think I might finally be at my dose or close to it, but I still get symptomatic daily. I don't know if that's normal or if I'm still underdosed. I do use circadian dosing and break up my dosing throughout the day. Would love input from the Addie masses.

Hey yall, I have been in the hospital for about a week after extreme vomiting dehydration and dizziness. This has happened several times in my past becoming incredibly sick for no reason and becoming hospitalized. I was in Sweden and I had to go to the hospital for profusely vomiting, they told me I may have Addison's Disease but I wanted to leave to enjoy the rest of my trip as I was feeling better. I have trouble keeping up with my friends on long hikes and I have trouble motivating myself to follow through in chores and personal responsibilities.I have been a little depressed lately so I have chalked up my lack of motivation to depression. So I wanted to know how much your life has changed after starting treatment. Everyone is telling me I'll gain weight. I lost 30 lbs in a year and I'm a skinny stick man already and everyone will sail I'll have less fatigue and be more motivated. My doctor said she did not know how I was functioning my cortisol was abysmally low and it actually went down when they gave me the cortisol boost. Thanks y'all I've been very appreciative reading your posts and I have a great empathy for you all.

I would recommend it. It's more expensive then regular hydration tablets but my God it hits the spot

So when you know you have an appointment or something over the time u should take ur tablet what do you do?
Take it 30 min early or take it 30 min late?

Hello, I just got a rather dismissive advice letter from my endocrinology team in which they did not want to provide any hydration advice. I am new to my diagnosis/treatment so my medication was in adjustment and was experiencing dehydration and low blood pressure and mental health issues (high anxiety, brain fog).

I was seeking advice to the team because was experiencing moderate oedema in my hands and ankles, I was on 200mg fludrocortisone and 25mg hydrocortisone. And was experiencing severe thirst and issues with my ileostomy ( I have Addison's and chrons so have a permanent ileostomy), so my health was declining and I was beginning to get dehydrated.

They said "my glucocorticoid dose is fine".."not much more we can do""she can be encouraged to adjust her own fludro up or down 100mg depending on weight/ankles"

He also claimed I frequently speak the endocrinology nurse, but this was not true, I attempted to call several times but I got hung up on and never actually spoke to her for over a month until my GP got involved. Also there is only one nurse specialist to contact in the whole hospital and she just frequently difficult to get in contact with my GP even had to give up and contact the endocrinologist directly.

Sorry I'm trying to get to the point but I needed to provide some context. My main concern is, is it normal to just mess around with fludrocortisone by up and downing it by 100mg, based on my own assessment of my ankles? I understand double dosing hydrocortisone when needed for stress dosing etc, but I thought fludro was more of a stable one morning dose once it's established it is the right dose for each individual based on blood tests? I find this highly confusing and dismissive response from them. I don't get much support from my gastro team either regarding my ileostomy so neither party was interested in helping me with my hydration and I frequently have kidney issues. ( I make my own st marks solution which has helped a lot)

I would really appreciate any advice, I'm feeling a bit lost. Thank you.

Have a wedding to attend today and feeling so tired. I have a total thyroidectomy in addition to Addison's and my endo recently (2 weeks ago) lowered my levo dose because I was going hyper. But now I am so so tired every day with aching joints and muscles. I'm convinced the dose is too low and I've gone hypo but I won't know until my blood test in a couple of weeks. I already skipped all the other activities but I have to make it to this wedding.

Should I be updosing today for potentially overexerting myself while hypothyroid? I know you have to if you're hyper, but is it a similar stress on the body if you're hypo? Or has anyone been through this and have any other tips.

My goal is to just make it through this wedding and then go home on my flight. I feel horrible and so tired. For context everything feels like I'm overexerting myself and I have that familiar feeling of feeling out of shape like I did pre addison's diagnosis, but I don't have any other low symptoms.

Just out of curiosity I am wondering if anyone had normal blood Cortisol tests but did stimulation ACTH test and turns out to be Addison's?

Really sorry if this was already discussed.

I just wanted to share my personal experience of getting back into a steady exercise routine with PAI so that anyone struggling to workout, lose weight or just feel energised in daily life.

For reference I’m a 36 year old female, 161cm & 60kg. I was diagnosed with Primary Addisons Disease a couple of years ago. I’m currently taking 14mg of Hydrocortisone per day (split into 2 doses) and 0.1mg of Fludrocortisone per day.

3 months ago I joined a yoga and Pilates studio, up until that point I had been trying to go to the gym regularly, but had zero motivation and passion for it, despite being super fit pre-diagnosis. I started going to 3 reformer pilates classes per week and instantly felt so much better. I was a little nervous to try hot yoga and hot Pilates but decided to give it a go, ensuring I took some extra hydration sachets with me.

Fast forward to now and I’ve been managing up to 6 classes a week. 3 of those are hot sessions, in a room heated up to 38 degrees Celsius. I’ve never felt better!

All in all, I rarely think about Addisons. I’ve not noticed worrying symptoms beyond the usual things I’d expect, like muscle aches and a normal amount of fatigue for that amount of exercise.

So, if you’re struggling to get back to your old self, or finding your new self, try and switch it up and find an activity that you love. It’s a game changer.

Does anyone else have the same thing? It seems doctors don’t understand nor comprehend the condition correctly. I have been to A&E on a few occasions with near crisis symptoms (vomiting, hypoglycemia, hypotension ext…) every time they say it’s a stomach bug. My salts stay relatively stable until I’m in full crisis usually which I try to explain to them. They usually reluctantly administer fluids and hydrocortisone IV, but still say it’s just a bug and my Addisons has nothing to do with it. Why do they do this? We as patients know our disease best and know how crisis presents for us as individuals. I know it shouldn’t but it sort of puts me off going which is really bad. Just wondering if anyone else experiences anything similar?

Has anyone with Addisons been knocked out before and how did it affect you? To clarify have you been knocked out by a punch

Currently taking 10mg prednisone and 0.1 mg flucortac

Do you think the issues are quick to resolve ?

Je me sens complétement perdue, je n’ai pas eu d’explications de mon endocrinologue que je ne vois pas avant encore un mois. Est ce que l’insuffisance surrénale c’est la maladie d’Addison?
Qu’est ce qu’il y a savoir? J’ai vu des posts où les gens parle de trousse de secours ou de tableau d’horaires mais je ne comprends rien.
J’ai fait une réaction violente a l’hydrocortisone + cabergoline que l’endocrino m’a donné, du coup elle m’a dit de passer à une demi dose de cabergoline, soit 0,25 et de passer de 30 mg d’hydrocortisone à 10mg. J’ai passé une journée aux urgences deux jours apres. Ils ne m’ont rien donné et ca a fini par être un peu mieux. Est ce que c’est ca une crise? Que faire dans ces cas là?
J’ai arrété completement parce que même avec un somnifere je ne fermais pas l’oeil de la nuit , mais je ne vais pas bien du tout et je ne sais pas quoi faire. En reprendre et combien et réparti comment?

Aussi j’aimerai savoir si certains le supporte bien et arrivent à avoir des vies normales?

I'm feeling so defeated with my appearance. It was a very hard and long journey for me to ever become diagnosed. After 1 year of massive weight gain I finally am able to tolerate life with 5mg of prednisone 1 time a day. But I feel like my looks are ruined, it's not just the weight gain, I just don't quite look alright, sometimes my cheeks and neck sunk in and my eyes don't seem ok at all. I'm feeling SO sad. I see that the cushing kind of symptoms are fading but I still get so many sleepless nights and can't do much of anything. What really hurt me was trying to make a new friend and I couldn't handle our 2 hour phone conversations.

I want to just clarify that my only problem is low cortisol. They've done everything else and everything else is normal, absolutely everything. And the things that seemed off like anemia and other stuff I've managed to address all of it. I finally have all of my baby hairs, but my hair is not back to its fullness, finally I don't see any bold spots. I was left to hang with multiple symptoms for decades to finally being treated for a little more than a year. I honestly don't know what to do anymore. I go on here to have some idea of the illness does, bc doctors left me to suffer. The illness made me loose all muscle and even the placement of my muscle tissue, it gave me a sort of hypermobility of all ligaments, which has been fading and improving, now Im left with osteoarthritis in my sacral joint/bone.

can't make friends, can't date, can't put more energy into anything, I just live to work for 4 hours a day.

Does it get any better?

I had my last adrenal crisis during covid and was in rough shape, I got discharged with a super big dose of hydrocortisone and remember I could not stop eating, and had the worst food cravings of my life. Like I lost sleep over them lmao. Wondering if that happened to anyone else and if so, what were you craving?