Dealing with Adrenal Insufficiency - Looking for Support

I was also recently diagnosed - secondary AI, caused by a pituitary tumor and use of growth hormone replacement (the tumor also caused growth hormone deficiency - I started taking the growth hormone replacement in 2019). I started taking dexamethasone for it this past Friday night. I could also use any and all advice/ information, as well as social support in dealing with this.

Hi everyone, I have secondary AI after having removed my right adrenal gland last year due to a tumor that was producing high amounts of cortisol. My left adrenal gland has been dormant ( not sure since when) so now I am hydrocortisone dependent. This is all very new and overwhelming, my doctors are not sure if my other gland will ever produce cortisol again. I have lost more than 20lb and muscle mass over the last months and I am dealing with chronic fatigue and body aches. Does anyone deal with similar issues? Any advice on how to deal with chronic fatigue? Thanks!

I also have AI. I was diagnosed at 6 months old. My main medication that keeps me alive is hydrocortisone. If I miss too much each day, I go into an adrenal crisis, which is close to death. However, I haven't had one in over a year. If I feel woozy, I triple my dose. I have a lot of advice to give, so if you have any questions, DM me! 🙂

Hi I was recently diagnosed as well, along with some other issues. I still have to do blood testing to get the best treatment I can.

Hi I was diagnosed last year after collapsing in front of my family with what they thought was a stroke and suffering with blindness for 6 weeks. Finally Endo figured out what was going on, absolutely the most miserable thing I’ve experienced, and that’s saying something. Happy to meet others!

AI is much more complex than I ever could have imagined after being diagnosed. I have a few other medical issues and this by far has been the hardest to manage. My doctor luckily really stressed the importance of staying healthy. She had me wearing masks in large crowds and bringing Lysol wipes onto planes long before Covid was even a thing. Learning how it impacts you and your early warning signs will be key. Even minor things like dental work can be an issue.

Secondary AI here. I'm very upset about it.

Also PAI here! And some other autoimmune issues. Diagnosed in 2018.

Hi there! I have primary Addison’s and have had it since 2014 if you have any questions. I might be able to help lol!

Hi! I’m also an AI patient, my condition is primary AI; how about you? Hope you’re feeling okay! 💕