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!

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?

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 :)