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Pursuing an Out and Out Cushings Diagnosis?
They are doing a Urine Free Cortisol check. I took in the records [some even from years ago] where I was diagnosed with the high cortisols and told them how the doctors then considered me as having pseudo Cushings but severe PCOS too. The endocrinologist seemed very knowledgeable. I told him how I was unable to get a pituitary MRI. I think they are paying MORE attention now because of the insane kidney stones and I told them I literally got handfuls of these things. I had a high ACTH which is a marker for Cushings years ago. I hope they can get somewhere. I am getting so sick. So much fatigue I can't even explain it all to you. I'm in bed now by the way. I told him I have felt exhausted. If answers came after this many years it would be nice. He told me my parathyroid levels are normal now and does not see my low Vit D as a present parathyroid issues. My body is so tore up. They have ordered me lymphedema care at home and some occupational therapy too, it is getting harder for me to get tasks done, I am not sure if it's the fatigue, bad balance or what. I am not keeping up. Oh one thing he brought up, is wondering where all my severe lymphedema has come from. That puzzled him. Oh if only I could get more answers after all these years. I know I am not going to last long at this weight. My weight was 519, 5 days ago it was 513, three months ago 486. It always frightens me.
I know there are many women diagnosed with PCOS who find out it is actually Cushings, maybe a few have both.
Anyhow I hope they find the reason for the kidney stones. He did tell me genetic testing was very expensive. I am afraid of this weight and how much I am holding on. I just want the nightmare to be over after all these years.
http://www.medscape.com/viewarticle/565417_3
I am glad you are getting a test for Cushings. It took them long enough! Did the doctor know if your weight gain was water or actual body weight? Does the doctor know why you have so much fatigue? Is this a Cushings symptom? Hope you get some real answers soon and a treatment plan that is right for you.
ReplyDeleteI am glad too. I was diagnosed with pseudo Cushings and had high ATCH and cortisols for years. I told the doctor I was not on any corticosteroids for asthma inhaler or otherwise when I had those tests taken. They are concerned about the level of lymphedema and a nurse pointed out to me this week, how my upper body is far thinner and my right leg then then the rest of my body. [swollen stomach and leg] The endocrinologist actually said to me, "Where is all that edema from, did you have surgery or injury to the lymph nodes in that leg"? and I said no. Edema can come with Cushings and so can fatigue. I hope I do get more real answers. I am getting more intense care now for at least the day to day stuff, because of the leg infections, I'm back with some therapists and nurses. I have to take a urine free cortisol next week. Have had high results before. I do want answers, this has been a long hard road.
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