Tuesday, August 18, 2009
Am I in Charge of my Diagnosis?
I turned in my 24 hour cortisol free urine test 8 days ago. I still have not had any correspondence about my results... Do I call the Kirklin Clinic Doctor or do I call my General Doctor or do they contact me with the results? I already have been made to feel like I am a hypochondriac... begging for this test. I feel like I have been trying to PROVE that I have Cushings Syndrome or something other than I have just gotten huge and disgusting... I wonder if I have heard nothing about the results then it must mean that I am fine. My results MUST mean that it has come back that I am totally healthy. If the test did show that something wasn't right, then, certainly, they (someone) would have called immediately to let me know that I am not perfectly healthy. Well, I guess I will know eventually. I think I will call my Doctor today and see if they can find out the results... I am just rambling I know... I think I am starting to lose faith that something really is wrong with me. I am just FAT and need to get on with my life!
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I vote Cushing's!! Know that you may have to change doctors. We ended up in CA for all three of my Cushies. Hang in there.
ReplyDeleteDefinitely sounds like cushing's. Don't give up! I highly *highly* recommend you see a cushing's specialist. Have you had a pituitary MRI?
ReplyDeleteHello again. Haven't seen you post anything new here, so I just wanted to check in and make sure you're doing okay. I hope your 24 hour urine came back positive and that you are on your way to a diagnosis. But, in case it came back normal, I want to make sure you know that one normal UFC is not sufficient to rule out Cushing's. This tip sheet has been extremely helpful in my Cushing's journey; maybe you'll find it helpful as well: http://www.cushings-help.com/lindap-tips.htm
ReplyDeleteI had to do the blood tests, 24-hour urine tests, and the saliva tests three times each. I had two MRIs, neither of which showed a pituitary tumor. I went so far as to have the IPSS (Inferior Petrosal Sinus Sampling) that came back inconclusive. The initial tests showed a definite increase in ACTH and Cortisol levels and I had all of the symptoms you have, plus some.
ReplyDeleteI had an ectopic ACTH source - a lung tumor which turned out to be cancer. You can see my story at 1974.blogspot.com.
what did your UFC come back as?
ReplyDeleteWell, It has been months since this original blog. I had Gastric Bypass Oct 23, 2009 b/c the doctors all told me I was FAT and that Cushings Disease was too rare. On Nov 11, 2009 I was finally diagnosed with Cushings Disease. I had Transsphenoidal Pituitary Surgery April 7, 2010. It was unsuccessful. I am having a 2nd Pit surgery at Swedish Hospital (all the way across the country in Seattle, WA.) It is tentatively scheduled for July 6th. This neurosurgeon specializes in Cushings Disease. I am praying for a 'cure' this time.
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