Unknown disorder, likely adrenal - need help

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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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8 Replies

  • Posted

    I also have had almost constant salt cravings since it started. I'll rarely ever crave sweets. It has since improved with taking the steroids.

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  • Posted

    ACTH can be low in Addisons as mine was. Have you had renin and aldosterone checked?
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    • Posted

      I have not, but I need to. Maybe the stimulation test will be able to show me what I have without more testing though. But idk. I'm willing to if I have to.

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    • Posted

      If ACTH is low and Cortisol is also low it could be hypopituitarism.. I know they were both high at the beginning which would have given symptoms of cushings syndrome weight gain, fatigue, muscle weakness, increased urination etc, because you were producing too much cortisol and too much ACTH..This is why you may be having symptoms of Addisons disease because you cortisol is low.. wait for the test but dont worry to much this will make you feel worse easy enough to say I know
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    • Posted

      I haven't had weight gain though, I had weight loss. Over 20 pounds of it within 2 months. That's one of the confusing parts. The only reason I'm gaining weight now is because of the steroids. And I dread the test but I want to know what's wrong more than anything.

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  • Posted

    Sorry to hear you have had such a rough time.  I was diagnosed in Sept 2016 and had exactly the same symptoms as yourself, weightloss and I lost 2/3 of my hair. Still waiting for my hair to grow back. Like you I had an endoscopy, colonoscopy, ct scans and blood tests and nothing showed up! I was eventually diagnosed with Adrenal Insufficiency 8 weeks after I had a blood test to show my cortisol was below a 100.  After almost a year I am feeling much better but with this condition you are susceptible to all kinds of infections due to the dependency of Hydrocorotisone.  Good to hear you're feeling better now that you're on the Hydrocortisone. I have asked Dr's how I have ended up with low cortisol and adrenal glands that are shot, but none of them can answer that question.  My GP surgery and the hospital initially the cause was the pituitary gland which produces the hormone ACTH which then assists the production of Cortisol from the Adrenal glands, but then they found out that it was Adrenal Insufficiency after all.  I am learning to live with the illness and I hope you do too in time.

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  • Posted

    MadameAphrodite, I like you am also searching for answers... I would like to share my story with you and you can tell me if you think it sounds anything like Addisons because I don't know whether to think it's a Pheochromocytoma (adrenal tumor) or adrenal insufficiency. Over a year ago I developed pvcs, which are better known as premature ventricular contractions (palpitations) I saw cardiologists who all told me my heart is normal and these pvcs are benign so no cause for concern and I tried living with them. I started developing panic attacks and anxiety started becoming a daily thing for me. I fell pregnant last year November and had a difficult pregnancy as I often felt short of breath and my pvcs were worse. My twins were delivered via c section on the 4th of July this year and the day after my surgery as I stood up from the bed my pulse went sky high and I had servere shortness of breath. A CT scan of my lungs were done and came back normal, an echo of my heart was done and came back normal. Two days later I was discharged and that s when all my problems began... i had a rapid heartrate that would jump to 165 170 when standing, i felt dizzy and short of breath, lost 15 kgs in 7weeks along with my appetite. I felt constantly anxious went back and forth to hospitals that kept sending me home with anxiety because all my bloods were normal. I was eventually getting so bad that I could hardly walk due to my heart rate being so high that i was admitted into icu where they could see the rapid unexplained fluctuations in my heart rate and ordered another CTPA scan, bloods and another echocardiogram of my heart which all once again came back normal. My doctor suspected a Pheochromocytoma and ordered a 24hour VMA+METANEPHRINE test and discharged me. When we finally got the results back my VMA+METANEPHRINES were normal but my normetanephrine & normetanephrine creatinine levels were high. They told me they weren't concerned and there was nothing else they could test for. I went home and kept getting worse, going in wheel chairs back and forth to hospitals and none of them wanted to admit me or investigate even though they could see my pulse fluctuating rapidly. Eventually I was readmitted into another hospital where I had a CT Abdomen done as well as a gastroscopy (where they put the scope in your tummy) had another echo done and was sent home with a diagnosis of POTS (postural orthostatic tachycardia syndrome) it makes sense but something keeps telling me there is more to it and something underlying causing the pots and given my history i am suspecting an adrenal tumor or adrenal deficiency. We have re run the VMA which came back normal but the stupid lab didn't add in the metanephrines so now I am re running it. My stress response isn't the same as it used to be getting anxious makes me feel like dying ... I sweat profusely and feel awful. Please if any of you have had similar experiences please share them with me as I am trying to get to the bottom of this. I have two tiny babies that need my love and attention and I feel that this is preventing me from being the mom i always wanted to be.

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