New Diagnosis of Adrenal Insufficiency. Anyone else?

@bryanf and @sb4ca
I now have Secondary Adrenal insufficiency caused by the 49 days of 40mg prednisone over 1 1/2 yrs ago, unless the Brain MRI this Friday shows a tumor or other abnormality. Since my last post, I was also hospitalized for severe cardiac arrhythmia (bigeminy, pvcs, pacs) dehydration and a 102 temp. I begged the ER to start iv hydration and received 3,000ml in 2 days, 6.2 lbs in body weight of fluid. After bag 2, the cardiac symptoms disappeared and by bag 3, I felt almost normal. My stress level is still high and I feel depressed and like I'm grieving for my former self. I have reached out to a grief, trauma and coping therapist and see her next week. I'm worried that my Endo, whom I do like but who seems young, may not be properly managing my condition and when I ask questions about setting up hydration therapy, he asks his colleagues and they say "it's not standard protocol" but it is MY life. I've taught my whole family how to administer Solu-cortef and wear my ID necklace and bracelet as well as carry a QR wallet card with my entire medical history and specific crisis protocol on there that anyone with a smartphone or tablet can access. Just trying to be prepared but have also been visiting funeral homes and trying to make future decisions, which gave to be made at some point anyway. Hope you both are feeling OK?
Thanks for listening.

I was diagnosed with adrenal insufficiency in May of 2021 after a trip to the ER. I was headed for bed that night and had trouble changing my clothes. My parents saw me an at first thought I was having a stroke. They rushed me to the ER where I spent two days in ICU and three days in MCU. I was suffering from dangerously low sodium levels caused by the adrenal insufficiency. The doctor said I was having an adrenal crisis and could have died if I had waited. I have been to the ER six times since for related symptoms. I was in college and the stress was way too much. It was impossible to manage. I eventually medically withdrew. My current job is not as stressful. It took me a long time to learn how to manage my medication based on what is going on with my life. The worst times are when I have bouts of nausea and subsequent vomiting. This depletes my medicine so I have to keep taking it. At times I just let it dissolve under my tongue so I don’t lose it when I vomit. I have also injected my self on many occasions with Solu-Cortef injections.

I struggle with the very same things. I’ve had several adrenal crises as well. I had gotten very sick about a year ago. My daughters hadn’t heard from me and after a few days had a’ wellness check’ done and found out I wasn’t well at all. I ended up in the ICU for a few days then a step down then a regular room.
The hospitalist said had they waited any longer I would have died. She also told us if I had another adrenal crisis and didn’t get the injection, I could die within 24 hours.
I don’t live by have myself any longer. I now live in a senior living place where they provide all meals, laundry assistance, etc. if I’m not at a meal they check on me. If for some reason I started talking gibberish or didn’t respond while they checked, they have a process to get me the injection and then to ER. I never thought I’d be living in a place like this. People and staff are all pretty nice. It’s been really difficult to go from 2 bedroom apt to a studio. I’m still getting use to it.
Let’s chat some more to connect and see if we can support each other.

@bryanf @babsforshort @sbc4a
Hello,
I wanted to provide an interesting update on my SAI diagnosed in 2/2024. After the roller coaster ride of basically being severely ill all year, multiple hospitalizations and mismanaged steroids, I reached out to an advanced endocrinologist who suggested that I possibly did NOT have AI. Mind you, my dx was evidenced based on labs and scans. On my own, without notifying my doctors because I felt they didn't have enough knowledge to treat me, began researching my ongoing symptoms. I realized that I was being over replaced with steroids and all my symptoms fit with this diagnosis. It was a "catch-22" with my AI. As long as I was on steroids, my pituitary would recognize that my body was receiving them from some source, and would just stay in vacation mode. I began a very slow taper, carefully monitoring my symptoms and making sure I stayed well by protecting my immunity. In December 2024, I requested that all the original AI be run again and for the FIRST time in a year, the labs reflected pituitary action. They were in a normal range! As excited as I was, but still feeling cautious, I had the labs repeated again in February. By this time, I had totally weaned off and again my numbers were
elevated. My advanced endo and my regular one were both shocked but agreed that my pituitary was doing it's job again, and although I was told initially that I would have AI for life, I'm happy to report that my experiment was successful.
I did deal with steroid aftereffects for about 3 months, but compared to having no quality of life in 2024, I'm significantly better now. Wishing all of you hope and a better outcome too.