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I am 21 years old. My nightmare all started in February. I got a bout of what I thought was the flu. Horrible back and joint pain, shaking chills, excessive sweats at the same time, fatigue and muscle weakness, fever that would rise to 101 and then fluctuate up and down, diarrhea, no appetite, and a sensation of being high or in a foggy state. I haven't been right since. I quickly dropped 20+ pounds in the next two months, no matter how much I ate. It all went straight through me (diarrhea) and upon waking, it would feel as if my muscles were atrophying. My hair would come out in gobs in the shower as if I had ripped a chunk right off my head. My anxiety and "fight or flight" got significantly worse. I would have spells of incredibly high heart rate, lightheadedness, shortness of breath, sweating, chills, shaking, nausea, and diarrhea. It was everything I could do to slow my heart rate back down. Physical exercise became impossible, as I was depleted and short of breath by doing the most menial tasks, such as simply carrying clothes back and forth from my room. I developed a perpetual state of mental fogginess and couldn't remember things to save my life. I will almost immediately forget something I just told myself to do. I quickly dropped below 100 pounds, with my lowest known weight being 98. I have hyperpigmented spots on my chin, belly button, knuckles, and in between my legs, along with dark circles under my eyes. I have been to a GI specialist, an endocrinologist, have had an endoscopy, colonoscopy, CT scan on my abdomen, and an ultrasound. Everything came back normal, except a polyp was removed from my colon. I was given Lomotil to help with the diarrhea. I was admitted to the ER at one point after a particularly bad spell (like I mentioned earlier) and having diarrhea (needing to go every 30 minutes to an hour, even if the only thing coming out was bile), was hooked up to an IV, given liters of fluids and sent home, despite looking like I could quite literally die at any second. I have had what seems like hundreds of panels of bloodwork. The first abnormal results we received were both an elevated ACTH and cortisol. June 28th, I was put on a trial run of hydrocortisone - 10mg in the morning and 5 at night to see if it would help me. Within the span of a day I was better. Not completely by all means, but enough to notice a difference. My anxiety and "fight or flight" improved, I have gained a little weight, my hair isn't falling out as much, and the muscle weakness has gotten better. The most recent abnormal results (this past Wednesday, July 19th) have shown both low cortisol and ACTH. My TSH levels are also a bit low now as well, having acquired hypothyroidism since the start of the steroids. The same day, I noticed the brain fog was beginning to return and worsen, as if I were high on something but wasn't and had a total out-of-it feeling. It had not done it since before the start of the steroids. My muscles became very weak and heavy all over again and was unable to do pretty much anything. My guess was that I wasn't on a high enough dosage. The endocrinologist upped the dose of steroids - 10mg in the morning, 5 midday, and 5 at night. I have only been on the increased dosage for a few days but the difference after taking them is like night and day. I have an ACTH stimulation test scheduled for August 8th. I'm unsure of how it will go, but I am nervous. I have honestly no idea what I have. I asked my endocrinologist if I had Addison's and he told me most likely, yes. However, I am confused as to why my ACTH and cortisol was high at the beginning and now are both low. From what I've gathered, ACTH is typically high with Addison's and cortisol is low. Could it be possible to have Addison's with both low cortisol and ACTH and after they both dropped like that? Or could I have secondary adrenal insufficiency instead? I'm completely at a loss and am desperate for answers. If anyone has any potential answers or ideas of what it could be, please leave a comment. I'm at my wits end. Thank you in advance.
Sincerely, confused and exhausted.
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