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New with questions


mthrgonenuts

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We have recently taken my son to the doctor for exhaustion, depression, moodiness, odd stretch marks, rapid weight gain, muscle aches, etc. She sent him for blood work. She checked his thyroid, for anemia, and his cortisol levels. She said that she felt sure that it was his cortisol levels because of the rapid weight gain, his round face, and the fatty pocket on his collar bone. On the way home my son mentioned that he thought that it could be Cushing's Syndrome. He had seen it on House. I had never heard of it before. He showed me the info on the web when we got home. It seems to describe all his symptoms perfectly. He has gone from losing weight and running every night to barely being able to walk with the family. So the blood work came back and his cortisol levels were normal. I expected that if it were cushings that they would be off. We go back to the Dr. on the 22nd, and I want to know if I should push for further testing. Please give me some advice.

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Test till you know! Even if you have to pay for 24hr urines out of pocket. If he is cyclic, you may need to test many times to rule it out! Whatever you do don't ignore it, if his gut feeling says he has it, don't stop till you know for sure. I stopped testing 10 years ago. I wasted 10 years of my life living with it, because I listened to doctors that did not know enough about it. It is very rare to find a doctor that knows about cyclic cushing's, or cushing's at all. They are very nervous to test, because they have been told it is very rare, and they are scared to look like fools!!! Scared to the point of meanness! I choose to go to a naturopathic doctor, and payed for: Four 24hr cortisol urines, Four am blood ACTH & Cortisols, and Four midnight cortisol salivaries, out of pocket...to know for sure! And sure enough, two of my 24hr urines were high & two of my morning ACTH's were high. I took those result to the Cushing's specialists, and they continued my testing at that point- "with insurance"! & found I had many highs. Also, it takes a while to learn when to test...write down symptoms on the days he tests. If he is high, use those symptoms to gauge when he is high cortisol again. It gets easier after a while to test because you'll start to see the same symptoms appear on high cortisol days.

Once you have some results in your pocket the specialist will lead you in the right direction! Don't wait 10 years like I did, follow your gut & his, and more than anything else do not be scared to fight the doctors! You deserve to know one way, or another! Mystery diagnosis is filled with people that knew something was wrong, and were deterred by doctors, at times for up to 30 years. At the Pituitary Convention I attended earlier this year, a cushing's specialists told us, "We believe it is 300% undiagnosed!"

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