1. < Diabetes & Endocrine System

New Diagnosis of Adrenal Insufficiency. Anyone else?

Posted by ladyaceintx1 @ladyaceintx1, Feb 27, 2024

My ACTH Plasma Cortisol baseline level is .9 on a scale starting at 7.2, down from 2 weeks ago when it was 1.2.
I had the Cosyntropin Stimulation Test done on Monday 2/26/24 with the pre-cortisol level drawn first, hence the .9 mcg/dl. The cortisol level did not rise to what is considered normal, therefore, my Endocrinologist called and said he is officially diagnosing me with Adrenal Insufficiency, and although the Pituitary Lab panel is next and we are still awaiting the results back from other labs, because my Cortisol is almost non-existent and I've been exhausted for the last several weeks, he is going to start me on an oral hydrocortisone, 15mg AM and 10mg PM, with instructions to double or triple dose in times of illness or stress, an injectable kit and wants me to order and wear a medical alert bracelet or necklace. He also wants me to reduce my workload and stress. How is this possible? I have questions about how quickly my Cortisol level could continue to drop before I start taking the medication and how quickly will my body respond to the medication and what happens if I totally deplete my cortisol level?
Any suggestions, answers or support welcome.
Thank you.

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babsforshort | @babsforshort | Jan 13 8:04pm
In reply to @ladyaceintx1 "@bryanf and @sb4ca I now have Secondary Adrenal insufficiency caused by the 49 days of 40mg..." + (show)
@ladyaceintx1

@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.

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Hi new on here but I have had SAI secondary adrenal insufficiency for 4+ years. It’s a big lengthy amount of learning how to manage the chronic illness as well as advocate for myself since no one knows actually how to treat it. When I was diagnosed for 6-8 months in home I administered 1 fill liter of saline with potassium every day. Yes everyday. It would take 6 hours running on full bolus. During which time I was on an average of 45 to 70 mgs of solu cortef hydrocortisone by injections spaced out about 10 shots a day. I was about 40% functioning and bedridden. I am doing this to let you know that you cannot live without the steroids any longer. I am 67 years old and I my body has been destroyed by mismanaged steroids , supplements, and drs that have no idea now except to say oh too many steroids. Well yes. But too little is my car running out of gas everyday. Sick everyday. Please research the absolute best endos you can find and afford adrenal specialists. I’m here. love to talk anytime.

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