Well everyone it has been a rough week and a half after having 3.5 gallons of fluid taken off of me in 48 hrs because of another GODSEND OF A DR FROM OSCHSNERS then having my Cushing’s Confirmation test on Friday along with the MRI of the pituitary gland and other blood work, then my mom bringing me here to KY for my last Summer intensive at Asbury which ends Friday evening, my other BEAUTIFUL GODSEND OF A DOCTOR called me last night as shocked as I was to have the results so soon. We finally have news since we have been trying for a diagnosis since 2011. It is official I do have Cushing’s disease and as rare as it already is I have an even rarer form because it is cyclical. But that didn’t surprise her because she said I had been a mystery and case study to them all since 2011 so it was no surprise.lol We have duplicated every test just to make sure we were on track because of all the oddity’s. Yet every time they have come back triple or more than the cortisol should be. She told me that normal levels of cortisol should be 1.4 or less and at 7:46 am after taking a medication for two days that should have even helped to suppress the cortisol my level was at 8.7. They then did the injection test and after 15 minutes drew blood again and my level had risen to 12.1 while it should have remained the same or had less than 1.0 variation. So my body does not suppress cortisol at all. I went to have the MRI after that, Ben was with me for everything, I love you Ben. They did a different injection there and sent me on my way after taking pictures of the pituitary gland. The Dr. said last night that there is a 4mm suspicious mass on the right side of the gland. That sounds just like the tumor that comes with true Cushing’s disease because they are very small but so is the gland. We still have to make sure that what looks suspicious is indeed that but regardless we do know the source is the pituitary gland. So the next step which she wants done within the next two weeks is a test called Sinus Petrosal Sampling where they draw cortisol from each side of the gland and from a certain vein in your arms and compare to see where the levels are the highest and will show them if that is the tumor which are almost 100% of the time benign. If that on the right side is the tumor she will send me to Vanderbilt in TN because surgery is the only option and to whom she says has the best Neurosurgeons and Pituitary Clinic she has ever worked with and wouldn’t want me going anywhere else for the surgery. So PTL we have a DIAGNOSIS! All this time we knew something was wrong but never could pin point it but God has had his hand in this the whole time. Ben and I have so many stories it would blow you away at how He has been moving in our lives this entire time. Whether the fluid issue resolves itself is yet to be seen but I trust my God He has never failed, never left me nor forsaken me and myself and my family feel such a huge weight has been lifted because we finally know something. I will keep you all posted on the last test and when I will be going to Vanderbilt but thank you all my dear friends and family for your prayers and keep them coming, God moves powerfully through them in His timing and for His glory. Much Love to you all, Carrie and Ben
Posted on: Thu, 22 Aug 2013 00:22:13 +0000
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