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When I finally got diagnosed with Cushings Disease at the end of January 2000, Dr. Weiss decided to put me in the Research Hospital for further tests. He wanted to locate the origin of the problem and determine whether it was in the Pituitary or the Adrenal Glands. I was in hospital for a week. They had to push me in a wheelchair to my room half-way across the campus (hospital) because I certainly could not walk at this point...and definitely not that distance. My first day in, was specifically to get settled in. I had no meds passed, but they did hook me up to an IV where they drew blood from me every half-hour...even while I slept...or tried to. My second day I was to look forward to the Petrosal Sinus Sampling. This one, I could have done without! Although I have had an Angiogram since, (Which is really what this test is very similar to) the Petrosal SInus Sampling was worse than the Angiogram by far. But I had an Anesthesiologist who was quite harsh. He gave me about 20 little injections of what was supposed to "numb" the already quite sensitive area, although he did not wait for the anesthesia to take effect before he began cutting my groin. I felt everything! Once the catheter was in place, however, I could scarcely feel it...until it reached my Carotid Artery, that is. Once it passed the Carotid Artery, I heard and felt everything...all the way up to the release of the CRF Hormone that they used to jump start my Pituitary. It was very hot, and the heat seemed to travel down the length of my fat shivering body that was lying on a freezing cold slab of a table. Once the heat reached my groing area, I really felt like I had to urinate. But that sensation quickly passed, and the heat seemed to release from my toes, and the test was over. I had to spend the rest of my second day in hospital lying flat on my back and perfectly still so as not to rupture the openings in my groin...yes, they did BOTH sides! It was what happened from the third day forward that surprised me. This was when they began low doses of Dexamethizone...for two days...then two days of high doses of Dexamethizone. It may have been the other way around with th high doses first, however, it was the end result that had me baffled. By the time the hospital was ready to release me, I could practically turn cartwheels out the door, and not because I was in a hury to leave...but because I felt so damn good! I had no more joint pain, no more bloating or discomfort, no more difficulty walking...and I lost 13 pounds!!!! I was eating more than I had ever eaten at home, and getting absolutely no rest being in a strange bed and having blood drawn all hours into the night. I mentioned this to the Doc and he responded by telling me it was just that I was in the hospital finally getting some rest and having my feet up that made me feel so good. I tried to argue the point with him stating that I got more rest while at home than in here, and that it had all started after taking the first dose of Dexamethizone...he still defies my comments...I have even asked other Doctors the same question as perhaps a pacifier while you're waiting to get diagnosed or have your surgery. I know it made me feel awesome! It wasn't long before all the pain returned, however, after the Dex was taken away from me....they claim it is dangerous???? How so if it's curing the problem of Cushings? I mean...isn't it simple? Cushing's is merely an overproduction of Corticosteroids in the bloodstream...right? OK 2+2...Dexamethizone sippresses Corticosteroid levels...HMMMMMMMMMMMmmmmmmmmmmmmm???? FOUR!

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If you do some research on glucocorticoid resistance syndrome, a cause of hypercortisolemia, you'll find that it's often treated with dexamathosone.

 

If your body and your doctor disagree, always listen to your body.

 

Share this with your doctor, he ignored a HYOOGE diagnostic clue:

 

http://www.emedicine.com/ped/TOPIC3049.HTM

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Okay, first of all I'm so sorry about all the pain you had to go through at the hospital! Secondly, I'm still not diagnosed and I'm beginning to wonder if I ever will be, but I relate to how you felt after taking the dex. I did a supression test and took the 1mg of dex at 11:00pm one night and had to get up the next morning at 6:30am to get ready and go to the doctor. 6:27am I shot out of bed thinking I'd overslept my alarm! I had more energy that morning than I can remember having in years! It's like I didn't realize how bad I had gotten until I saw for half a day what it was like to have energy again. I wasn't sure if it was a coincidence or if it was the Dex that made me feel that way. Cartwheels is a good way to describe it... I seriously felt like I could finally go on a run and regretted that I hadn't gotten up at 5:30 to allow myself the time before my appointment! (I haven't run in like 4 years). Interesting stuff.

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Hello!I also felt better on the dex. In fact in the last 2 1/2 weeks since I have lost 20lbs went from a shirt size 22/24 to a 18/20 now my pants size hasn't changed a bit :) Grr

 

My cortisol level the day before the dex was 5.5 and then the morning after the pill my sortisol level was 7

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When I went to camp cushie and the last few days was taking the dex pills, I was bouncing off the walls and having the time of my life. My cushie partner did not have the same reaction and we both suppressed. I think it just depends on the person. But I loved it!!! I got to site see and it was pain free.

 

Hugs,

Lorri

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If you do some research on glucocorticoid resistance syndrome, a cause of hypercortisolemia, you'll find that it's often treated with dexamathosone.If your body and your doctor disagree, always listen to your body.Share this with your doctor, he ignored a HYOOGE diagnostic clue:http://www.emedicine.com/ped/TOPIC3049.HTM
I would LOVE to be able to listen to my body...especiallt when the Dexamethizone caused me to lose 13 pounds in only 4 days! What does that tell ya?Thanks for your comments.
Okay, first of all I'm so sorry about all the pain you had to go through at the hospital! Secondly, I'm still not diagnosed and I'm beginning to wonder if I ever will be, but I relate to how you felt after taking the dex. I did a supression test and took the 1mg of dex at 11:00pm one night and had to get up the next morning at 6:30am to get ready and go to the doctor. 6:27am I shot out of bed thinking I'd overslept my alarm! I had more energy that morning than I can remember having in years! It's like I didn't realize how bad I had gotten until I saw for half a day what it was like to have energy again. I wasn't sure if it was a coincidence or if it was the Dex that made me feel that way. Cartwheels is a good way to describe it... I seriously felt like I could finally go on a run and regretted that I hadn't gotten up at 5:30 to allow myself the time before my appointment! (I haven't run in like 4 years). Interesting stuff.
I really do not think it was a coincidence...my doctor tried telling me it was because I had been in the hospital with my feet up and relaxing...HAH! There was no relaxing...it was the DEX that made me feel so good, I positive of it! Not only di I feel like turning cartwheels but I also lost 13 pounds in 4 days!?!?! Dr. couldn't explain that one since I ate better than I had at home for over a year. I would eat something like a small yogurt and get so bloated that I felt like I'd eaten a 10-course meal! Therefore, I could hardly eat anything the rest of the day...maybe a lite dinner. In the hospital, he made sure I ate...3 meals per day PLUS a snack!!! I've NEVER in my life eaten that much.Trust me - IT WAS THE DEXAMENTHIZONE
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