I am 21 years now. I weigh 60 kg and was diagnosed with cyclical Cushing's syndrome at the age of 20. I had an MRI scan for a pituitary tumor in my brain. But, the clinical findings did not match up. I went to a top end endocrinologist who is a professor in endocrinology. I have beard like hair in my chin, upper lip and neck. I have high pulse rate, a moon face, central obesity with sparing of the limbs, stretch marks on my hips and boobs, anxiety and depression, severe PTSD (posttraumatic stress disorder) from 13 years of extreme abuse, acne, hyperhidrosis, fatigue and weakness, severe headaches and cognitive/attention problems that is so severe, because of which I had to quit my job at a cafe. I also have fatty deposits and irregulars periods. Currently, I am on Venlafaxine 300 mg per day following 4 panic attacks and depression. Clonazepam up to 4 mg for panic, Dextroamphetamine, Isotretinoin for extreme acne but nothing has been administered for physical exertion. I get breathless when climbing stairs. I have already been scanned for PCOS, which came as negative. My thyroid function has been erratic, as for the T4 level that I had about 5 years ago was 20. Then, in two years, it dropped to 14. I got it tested two years later after I got sick and it dropped to 7. Now it is hard, because T4 level is back to 20 like what is normal for me. I was not taking my thyroid medication, because at the time I smoked. I have stopped smoking now. I have been chronically ill to the point my muscles are so weak, that whenever I get up I black out, or am shaking uncontrollably. I was a ballet dancer, and I stopped due to the physical demand. Just walking to the letterbox is excruciating my muscles. Though I am young, it makes me feel like a 90 year old. I have done some 24-hour urine samples for cortisol levels, yet they always come back negative. My endocrinologist said that there are chances, but it could take 10 years to find. I cannot wait that long. Are there any pituitaries anywhere else in the body? And if so, and everything comes back fine, how will I get treatment for cyclical Cushing's? Are the pee tests fine? Is there a medication for this illness? It is ruining my life and the ability to act. I know cyclical Cushing's is a clinical challenge as it is not widely documented. Please help.
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Thank you for your response. Even though my condition is cyclic, my symptoms present all the time, and do not fluctuate. What are ectopic hormones? In regards to adrenal issues, is it possible to have undetected adrenal tumors which would be causing these symptoms? Do I require an MRI scan to detect it? If it was not detected, and my results keep coming back negative, does it mean that I will never receive treatment despite having consistently severe symptoms? What symptom management involve if there are no test results that match with my clear physical presenting symptoms of Cushing's?
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