Dex test normal-could I still have cushings?

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Erm hello everyone (1st time posting in a forum) Basically I'm wondering if anyone has had dexamethasone tests that came back normal but was later found to still have cushings or if anyone had symptoms of cushings but it turned out to be a different condition please? Basically I have been unexplainably big all my life despite healthy diet/lifestyle. I'm loosing loads of hair , i can't build muscle (no matter how many weight lifting sessions i go to), i have a ton of other symptoms and yesterday i got the results back from a CT scan that shows I have cranial atrophy and am only in my 20's. My whole life doctors have been sceptical when i've told them i can't loose weight; one even offered me gastric surgery without even asking about my lifestyle. Recently i finally convinced them to test me for cushings but my cortisol levels came back normal: Could I still have Cushings??? Thanks. x

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  • Posted

    What type of tests did they do? Did they do urine and blood tests? Did all those tests come through negative? Do you have a buffalo hump, moonie face and trunk al obesity? Did you gain excessive weight rapidly or did you gain it gradually? What are some of the symptoms you been having? Since

    They did a scan and they saw shrinkage of you brain, did they use dye for that scan? Are all your symptoms constant or do they come and go? With these answers then I can answer your beginning question of could you still have Cushings.

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    • Posted

      Hi, thank you for your reply.  They just did a single dex test - 2 tablets at midnight then bloods in the morning and cortisol was completely suppressed. But got a letter from the doctor to say he would refer me for a second opinion as he thinks there might be something wrong but he's not convinced it's cushings so will see what he  suggests next.

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  • Posted

    Look up Theodore Friedman cyclic mild cushings disease he's like the expert on cushings and who everyone in the immediate world goes to to try get diagnosis he disagrees with the dexamethasone(says it's useless) and agrees it takes multiple testing to exclude cushings not just one or 2 . midnight salivary s and midnight cortisol bloods are supposed to be the best Drs don't have a clue they really don't . Guaranteed most you see will exclude you with a couple normal tests. A lot of mild/cyclic/cushies tend to produce high cortisol at night and go low cortisol during the day so doesn't show on 24hr urines (as it evens out the numbers ) cushings , unless extreme is suppose to be the hardest of endocrine disorders maybe in all medicine to diagnose so a specialist of specialists is needed it really is disheartening. I have had one high normal, my dex test suppressed very low and 1 normal urine I'm trying to gauge my symptoms on when to do my last urine (i.e. When I feel hyper drugged out of face , speed talk that sort of thing ) before I do it cause that's how I was for 2 straight days and I was coming t the end of it when my blood result was a bit high . Hope this helps x good luck x

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    • Posted

      I also had speed talk...like a speeded up record during my jeckle personality. Very inyeresting..I need to pull out my manuscript I wrote about my Cushing's pathway, so I can list the symptoms I had in 1987 that were bizarre. As the first person diagnosed with Cyclic Cushing in the USA I'm interested in knowing that the Endocrinologists are dropping the ball just like they did 30 years ago, they are arrogant and dismiss your symptoms, but the tumors can be so small it's insane how small to cause such havoc in your whole body. I'm praying that both of you here can find a Dr that will listen.

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    • Posted

      Hi, thank you for your reply. I will have a read about Theodore Friedman. I do feel the doctors are very quick to dismiss cushings because its ''extremely rare'' but if they don't regularly test for it how do they really know. So far they've just done the one Dex test but the doctor i'm going to at the moment says he will request a second opinion before he calls it a day so keeping my fingers crossed i get an answer soon. Hope you have some good luck too.

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  • Posted

    The experts of experts are starting to realise mild cyclic cushings is relatively common in general population but just rarely diagnosed (must be ) cause as you say no one tests for it cause it's too rare(whatever) It's crap it really is . Most Drs endocrinologists will laugh in your face if you bring it up unless your totally obvious textbook case because they are taught that they'll probably never see it ,they really are clueless and if you have a high test they'll just say it's stress or anxiety ! unless all your blood come back high you have a hell of a time . Not to be a Debbie downer or anything but no one ever believes you , get used to it and Drs don't want to take on complicated cases and you just get fobbed off its an impossible situation it really is but at least your getting a referral I would not waste my time with any old endo you need a cushings specialist if there is anyway you can get to one x good luck x

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