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My name is Alicia and I decided to give this question a shot here. I have been struggling to reach a diagnosis for 18 years now. I am 30. In the last four years or so we have been trying to determine if I am suffering from cyclical Cushing's. 3 consecutive (one a month for three months) 24-hr urine tests back in 2014 were elevated but they were dismissed as "not elevated enough" by every endocrinologist I saw. I also have a tumor that is inside my posterior lobe of the pituitary gland. I was told this is not common and they cannot say for sure what kind of tumor it is. I have an elevated mildly alpha subunit level which is used as a tumor marker which was within normal range only a couple months before the next time it was tested but I was told this was "clinically insignificant". I think you can see where I'm going with this, these doctors are neglecting my issues and I'm getting nowhere. Now, years later, my urine cortisol levels have dropped from a 112 at its highest to a 6 the lowest it's ever been. I was told "I don't know why".
My curiosity is in another level I have come across that none of my doctors seemed to think was odd but I did. I had 17-hydroxycorticosteroids tested twice within only 19 days of each other. The first test (this is done with a urine test) was flagged elevated at 8.9 mg/24h the normal range is 2.0-6.0. 19 days later I had it tested again and it was 1.9 mg/24h. Not a single thing was said about this huge drop from one extreme of high to the next of low. I know 17-OHCS is used as an arsenal function test but I had a new endocrinologist tell me "this test is old and I don't use it anymore". Lol so again my levels were dismissed.
Does anyone know much about this test or have similar results that were actually taken seriously by a doctor? I feel like there's some sort of clue here that they're neglecting.
Any help would be greatly appreciated. (I am in the United States so I apologize if any unit of measurements is it converted!)
Thanks so much!
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