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New Diagnosis of Adrenal Insufficiency. Anyone else?
Diabetes & Endocrine System | Last Active: Jan 13 8:04pm | Replies (11)Comment receiving replies
@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.
Replies to "@bryanf and @sb4ca I now have Secondary Adrenal insufficiency caused by the 49 days of 40mg..."
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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Ok, so if this is secondary to the steroid use, have you been told your adrenal glands will recover? When steroids are used long-term, the adrenal glands start to shut down because the body is recognizing it already has (replacement by prednisone) steroids in place. Usually a person is placed on a long taper off the steroids in order to allow the adrenal glands to start working again. If the taper is not long enough or the steroid use was really high, the adrenals glands need more time to recover. It sounds like this may have happened to you which is a much better prognosis. It is more rare that the adrenal glands will stop making cortisol all together after steroid use but certainly can happen. With the hydration, too much hydration can dilute the electrolytes which often are significantly affected by low cortisol. Low electrolytes would affect your heart among other things. In your shoes, I would listen very carefully to your doctors about excessive fluid.