YAyyyy seem to be getting somewhere

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Hiya lovely ladies! , I seem to actually be getting somewhere at last although a long road still I suspect . I emailed my London doc after I was told by the idiot endocrinologist here that everything was fine . He stated he was very concerned about my morning elavated cortisol and said I should have suppressed further to 20 not 25 with the after dexamethasone despite my 2 normal urine results he said I need a full work up for Cushings disease at a specialist centre recommending st Barts or somewhere in Edinburgh I'm extatic to finally be taken seriously even my gp was ready to drop me . He has sent a letter about this to my gp with his recommendations . God what a rigmarole and the amount of hoops I've had to jump through it's a joke . But still think I'm gonna have a hell time wait and see !

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  • Posted

    Isnt it amazing how ridiculous it is to get doctors to really listen to you. They all seem to think we are lying about all the symptoms we have. I thought after all the testing did on me in 1989, showing that "Cyclic" Cushings proved that none of us fit the textbook to diagnosis.

    Im thrilled finally one dr is going to push the other drs to do the testing. Im praying for you to finally get the answers.

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  • Posted

    Thank you very much it looks like it must be Cushings hence my (sometimes) elavated labs but I know Drs are so hesitant if you've got some normal ones must be cyclic for sure .Just hope the next doc I see isn't such an a*****e as the ones I've seen in the past .(when I say a*****e I'm being kind lol) London doc is(FFFAAABB) I just can't afford him and all the tests ! If anyone's struggling I would totally recommend he's lovely 😊 keep yas posted 

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  • Posted

    Hooray!  So very glad that you have found someone who knows what they are talking about!  Let's hope that you are now going to get some answers.  Good Luck and keep us posted!

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  • Posted

    Fabulous! So glad someone's taking you seriously.. Fingers crossed for a quick diagnosis & treatment plan xx 

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  • Posted

    Any one in this forum know who to see in st barts in London I'm gonna do research as I don't want another clown dr who is horrible and doesn't know what he's doing ? 

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  • Posted

    hey, that's great news. It's so frustrating when doctors don't listen. hope you find your answer.

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  • Posted

    My sister has a severe form of Cushing's which has included male pattern balding of around 70 percent of head hair..  She's currently on Metopirone but her hair continues to fall.. does anyone on this forum know if this will continue and whether hair hair can grow back???

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