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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is it cushings? or am i crazy?
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"for three years i have been having increasingly severe symptoms of a hormonal imbalance. i have had 4 periods in the last three years. originally it was diagnosed as being caused by riperdal and a high prolatin level when my gyno tested my hormones..he also stated my blood sugar was not terrible but not great. i was retested and blood sugar was completely normal..basic symptoms are weight gain especially in my stomach and upper body , face.. and a noticeable hump on my upper back right under my neck ..not really in my legs at all, increasing hair growth on face, absent periods, muscle weakness in legs, a complete lack of interest in sex.. the gyno has given me progestin twice to try to get my period to start and neither dose worked.. all my hormones have been retested and all are in normal range, the only one they did not test was cortisol..the prolatin level is also down and i have been off risperdal for quite a few months now..and obviously i am not pregnant.and the gyno ruled out pcos and insulin resitance.in march i was also diagnosed with catartacts i am only 45 and never been a prolonged course of steroids..both the gyno and the eye dr have recommended i seek the advice of a endocrinologist as my symptoms seem to indicate there may be a high cortisol level..as you may know risperdal has been linked to a high prolatin level and to the development of pituitary tumors.. but these are usually prolatin secreting not cortisol..my family physician is not convinced that i should even be tested for high cortisol.. he is a big believer in stress being the cause of nearly everything..and i do know stress can cause high cortisol .. but my question is .. could stress cause it to actually be high enough to cause a period to stop for 11 months and cause cataracts? and should i seek a different dr who is willing to test the cortisol... i am quite aware that Cushings .. which is what i have found to most closely correspond to my symptoms(including the cataracts) is extremely rare .. i am confused and not sure if i should drop it .. or try even harder to get an answer
Posted on 06/01/09, 09:06 am |
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I would not bother to ask your doctor to do anything (if he's unwilling) unless you need a physician to get in to see an Endocrinoligist. Let the endo order the urine cortisols and see what they have to say. If you have any, take some pictures of yourself before this started. Fight to see what's causing this. As you've no doubt read, high cortisol levels will cause significant damage over time. Good luck, and God bless. 
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thanks for your reply ! i almost feel silly for pursuing this becasue i do know that it is very rare...i sent this post to an ask the expert board and a brain tumor expert said it was so complex it was outside his expertise to answer at all...he also recommended i see and endocrinology expert...i have pictures but they are kind of old...i hate having a picture taken ...the chiropractor i see says what i have so often read ."you don't look like cushings exactly" but i look at everyone's pictures here and on other sites and i do! including the hump..the stretch marks are there but they are pink though .. so everything doesn't match exactly... the main thing is there is definitely a hormonal imbalance and none of the tests they typically do have showed why .. so cortisol is like the only thing left to test! i feel like an episode of mystery diagnoses.. and my husband has said he thinks im just a hypochondriac... but something is causing my body to whack out.. i cant make that up!
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I wish I could give you a definite yes or no, but there is obviously a shift in how your body is carrying the extra weight. When I was at NIH, I saw so many people with Cushings, and we were all different because we were all at different stages of the disease. You could be having female hormone problems rather than Cushings. I don't know, but I encourage you to go to an endocrinologist and ask them for a work up to determine what your cortisols levels are, and if, by chance, they do an MRI of your pituitary, ask the DR. to order it with contrast. A tumor will show up with contrast, while it might not without it. Don't be afraid to ask questions. I took a notebook with questions and had them answer them. They're doctors, not gods. I've known a few that thought they were, but they're not! And I really get sick of hearing about women who are suffering and they keep getting blown off by their MD's. I've decided that if DR's haven't ever heard of it, or don't know how to treat it, they think it'll go away if they ignore it! Go ahead and go to the Endo. And check around to find a good one. Most are basically diabetes DR's. Again, good luck and keep me posted.
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i appreciated all your words of wisdom.. ill be going to a new primary on tues .. ill let him take a look!
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I would like to add that this disease helped in the demise of my marriage. I had absolutely no sex drive and could barely stand for him to even touch me. It was horrible for him and me, too. We are friends now, but if we'd been able to see or talk to people who were dealing with this, we might have stood a chance. Falls under "coulda, shoulda, woulda". But please consider this before it takes your marriage down, too. I'm praying for you and the Dr. you're going to see. Hang in there!
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i addition to having absolutely NO sex drive...which is already taking its toll and another reason im going back to the Dr to try to identify what is imbalanced and have them fix it..my husband insists i am a hypochondriac...i have been to a cardiologist, a gynocologist, and an eye doctor..all of them suggested by my primary..i tried to tell him that i do not shop drs and i am not dx ing myself.. but that yes .. becasue i still have a bunch of unexplained symptoms i do read a lot on the internet! so what ?!..i dont go looking for a dr who will dx what i say i have...and i did have cataracts.. i did have a cyst on an ovary( not related to missed period according to dr) and i did have mild diastolic dysfunction.. and im not making up severe arthritis either! its not my fault...he insists i tell the dr what i have and thats why he orders tests...and that i will never be satisfied with any answer the Dr gives me.. but i say .. they haven't given me an answer yet! and told him ..it can take 3 to 7 years on the average for a serious illness to be correctly dx.. it is not always so straight forward..so yes its taking its toll on my marriage to NOT have an answer .. thanks for sharing your experience with that
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You definitely need to get to a good Endocrinologist, and fast. Men like to be able to "fix" what's wrong. When they can't, it frustrates them to no end. That's part of the problem. He's trying to fix you, too. But it's not something he can fix, and that sometimes makes them feel powerless. Not good for their ego. Plus, on the sex issue, I don't think my husband ever understood that it wasn't about him. He thought I just wasn't attracted to him. I couldn't get him to understand that Tom Selleck could have made a pass at me, and I would have turned him down, too! (Maybe!!) I'm giggling like a school girl right now! Anyway, I'm still praying for a quick diagnosis and for your husband to be more patient and understanding.
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well i went to new primary and he ordered two different 24 hour urine tests...i think more than any symptom the lack of a period for 11 months is what he is focused on ...i have to wait til next week to do the tests becasue i have been taking a DHEA supplement and he wasnt too happy with that ..ooops! at any rate he did say that these tests will catch anything that might be wrong with my adrenal glands .. but i do not think he thought it was cushings by looking at me.. the classic stuff isnt blaring enough.. there is a buffolo hump but its is nt as big.. ect...and the really weird thing is i got the flu early last week and i did lose 5 lbs .. so maybe its not as impossible to lose weight as i was thinking.. but i appreciate the support and just as follow up ill let you know.. thanks for being there
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Let me know what the urines show. And I'm impressed with the doctor already. They didn't jump to any conclusions. Keep me posted!
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i am finished with drs!! whatever is wrong im just going to have to either get so sick its obvious and risk dying or just up and die from it .. there is NO help..i finally get an order for a 24 hour urine test and i end up peeing out twice what i know is the normal amount..im obviously having hormal trouble.. now im sweating my butt off and having chills...and i ask the nurse just what is he testing for .. and she says liver and kidney function..im like What???i have had that and thyroid tests soooo many times.. thats not the trouble.. why why why wont anoyone listen to me.. im sick and im tired of being sick.. i quit i really do.. i am obviously Not going to get any help from any dr..its been three years and no one can say whats wrong.. maybe my husband is right.. im a hypochonriac...i swear i and gong to have my tombstone engraved with the words.. "i told you i was sick you idiots!" the only bright spot is maybe someone will get a lawsuit out of one of these drs if i do die .. and something good will come from it all..sorry i know im ranting but i have no ne to talk to about this. my husband will not even discuss my health issues anymore.. and so i dont even tell him i feel bad anymore.. im alone and sick
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