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Peggy's Blog

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My daughter has Cushings



Hello- My name is Peggy, and my daughter has Cushings. In Feb. she was having a minor surgery done, afterwards the anesthesiologist took the time to come get me from the waiting room to ask if she had ever been tested for Cushings. Bless this man who did not know us from Adam.... He explained someone her age (20) to have high blood pressure without a cause was not normal, she had been tanning but he felt she did not have a normal tanning color, and her round face "moon" shaped. When he said this it was like a light bulb went off. She had been battling with her blood pressure, wt gain despite much exercise and diet, and bruising easily. The following week our family Dr. examined her ordered 24 hr urine for cortisol, dexamethasone suppresion test along with a battery of others, the urine cortisol and blood cortisol were extremely high, but ATCH less than normal. He referred her to a endocrinologist in Waterloo, since she is going to college near there. She was very nice listened to all her symptoms said with how blood work came back looked like might be a adrenal problem. Order more labs along with a MRI of pituitary and CTof adrenals. Labs again returned the same, both scans negative. She told us this was very rare and we needed to be somewhere bigger so referred to University of Iowa Clinics and Hospitals due to thats where are insurance would let us go! For a third time they repeated labs and Ct of abd and pelvis..again results the same. Cortisol levels high urine, blood, and saliva. ATCH basically undetectable. CT again negative. Three weeks ago seen them again, ordered MrI of adrenals and referred to Surgeon. MRI was negative no hyperplasia, no nodules very normal looking adrenals. Endo called my daughter the results and said we dont know what else to do for you, we will be anxious to see what the surgeon has to say...... he offered to take out two normal adrenals!!! We are at a loss..

Now in the past two weeks she has started with nausea, vomiting, headaches daily, rash to chest and neck, bloodshot eyes, and extreme fatigue. Today she called me from college, dizzy and vomiting..

Anyone have any suggestions, ideas, a good endo Dr. or even the same test results.

Thanks and God Bless!

Peggy, Emilys mom


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