What is Cushings Syndrome
Cushing's syndrome or hypercortisolism or hyperadrenocorticism is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. It may also be...
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I am almost certain I have Cushings. My problems started in June when I began to feel unusually tired. I could spend an entire day in bed. The weight gain started next and came on fast. I gained 40 pounds in 5 weeks (up to this point) and it is all in the waist, with the upper portion of the waist being the "fullest" point. My neck is also thick with a fullness type of feeling. My lower face is swollen, I don't even look like me! I look 12 months pregnant, if it were possible to be that round. Not much change in my legs or arms but my upper back is definitely huge. I look sick. All of this weight gain was while I still continued to try to exercise but I was becoming so tired it was becoming more and more difficult to do. I feel as though I am inflammed in my joints most of the time and sleeping is very difficult even though I am so tired because I cant get comfortable. I am easily winded which is not normal for me. I regularly do cardio exercise. None of my clothes fit and although I usually have low BP, it has raised since the weight gain. I cannot lose a pound I just continue to gain. I am so depressed at the circumstances of my situation and just really hope that the tests I am having done this week will reveal something. I am having a thyriod and metobolic panel done and then a cortisol test done after taking some medication the night before. Is this an accurate test for cushings?
Posted on 07/21/09, 10:07 am |
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i have almost all the same symptoms.. not as much weight or as fast .. after a bunch of drs one finally orderd a 24 hour urine test..i dint take any mediacation first ..he found elevated ketosteriod 17.by product of adrogens. but not cortisol.. still he did order a CT scan of my ovaries and my adrenals..not my pitutary .. if the scan comes back clean im not sure what he will do.. probaly give up..i havent had period in 11 months.. and im sweating so much but im no where near menopause acccording to his test ...im fully expecting that the scan will be clean .. getting to whats wrong with me has been a nightmare.after this i think im going to have to accept i may never know and do the best i can. i hope you get the answers you need and you feel better soon! 
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One of the problems I had getting a diagnosis was that each time they tested me I wasn't putting out the cortisol, but in between testings I was! They finally confirmed it by the growth on my adrenal gland. I had all the symptoms, yet nobody was sure what to do with me the whole time. It has been very frusterating and still is because even though I am now official, nobody still knows what to do with me.
I had surgery to remove my adrenal gland w/ growth, but now we're back to the drawing board and my symptoms aren't getting any better. I need to find a DR. out here in Phoenix who is familar with Cushings. Until then I just keep getting passed around. Next I am insisting on a scan of my pitutary. Even though I've been confirmed they haven't checked.
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I feel for both of your situations. I guess I shouldn't expect quick results, which quite honestly has me scared if this is just the beginning of a long and painful process. I am literally morphing and I really want to feel like myself again.
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If you live in a small town, go to the largest city you can get to in order to find an Endocrinologist. And make sure they are associated with a large hospital in that town. I started out in a small town and it was a oomplete waste of time. Most small town Endo's are used to treating diabetes only. When I would go to my Endo, I would be the one deciding what tests to order when my hormone levels were off. Pretty scary. But if you'd seen the look on their face, you'd have seen relief when I told them what needed to be done.
I also recommend contacting the National Institutes of Health if you have some time off. They usually take about three weeks to evaluate someone, send them home, then contact them and tell them what they want to do. It's the best hospital in the US as far as I'm concerned. I also recommend any of the Mayo clinics and MD Anderson in Houston, Texas. Don't quit on yourself. I've been dealing with this for 32 years. Not Cushings. That lasted about a year. But with the results of "curing" Cushings back in the 70's. I'm not complaining. I'm trying to tell you that you can pull through this. I've seen so many people that have gone back to being themselves again. It is possible. Keep us updated, please. I'm praying for you.
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Thank you for the information. I do think I am going to contact the NIH.
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Let me know how your doing, please. And let me know how contacting NIH goes. Looking forward to hearing from you.
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