Other sufferers Cushing's Syndrome

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Looking to find other persons with the same condition for discussions

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  • Posted

    Hi Craig, I am a fellow cushings sufferer! I was diagnosed in 2002. Have had every test and scan available but as yet the source has not been found. Happy to discuss anything from tests scans and treatment to day to day living with cushings!
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  • Posted

    Hi

    I have had cushings disease twice now and now they think its comin bk for the third time, anyone else had it three times, I'm so sick of it, I'm only 29! My cortisol is raised again so now doin the saliva test, urine, n dexamethasome. Anyone else have similar story x x

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  • Posted

    Hi i too have just been diagnosed with Cushing's .. My Prof has told me i have to remove my Pituitary gland in about four weeks time , I know nothing about the disease or if in fact it is called a disease , The only reason i initially found out was when i went to the Doctor's whilst doing pump and tone and three abs classes a week but to no avail ... Can anyone advise me if i am allowed to walk i know i cannot gym but a nice long walk sounds heaven at the moment ...
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    • Posted

      Hi, i should think walking would be fine, but don't push yourself if you are breathless or dizzy. Raised Cortisol causes muscle weakness, including heart muscle. Look after yourself.xx
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  • Posted

    Thank you so much Carolyn ....I will be sensible but i really need to get out of the house ..It's driving me crazy sad Ha ha Xx
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  • Posted

    Hi Craig,

    I have recently been diagnosed myself with Cushing Syndrome. I have just this week been told from my CT Scan results that the 'Nodule' is on my lefthand side Adrenal Gland. Im currently waiting on a Appointment to tell me their plan of action and where i go from here - it cant come quick enough! Its all the waiting around and not knowing thats driving me crazy! Its such a long winded process rolleyes

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    • Posted

      Things should get moving now you have a diagnosis.Let us know how you are doing. There is a light at the end of the tunnel! XX
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    • Posted

      Thank you Carolyn - i truly hope so. Its hard to keep the faith and i do try to stay positive but its pushing me to my limits xx
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  • Posted

    I wish you all well ...Update on my condition they removed the adrenal gland plus tumour but sadly mine is Malignant and i have metastatic cancer...I had my Pet Scan last week to find out where my Primary Tumour is and how far it has spread ... Please if in doubt go to the Doctors asap ..
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    • Posted

      My thoughts are with you Eve x

      Did you also have your Pituitary gland removed? All i have been told so far is the size and where it is. They couldnt tell me what i really wanted to know - whether its cancerous or not as my Consultant is apparently away til the middle of next week and he needs to have a look at my CT Scan results and get back to me! Its all very worrying and frustrating.

      Take Care x

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  • Posted

    Hi Caroline ... No just the adrenal gland plus tumour and i was told prior to the surgery that my P
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  • Posted

    Sorry Caroline my pc has gremlins i believe lol ... I was saying that according to my Prof in his opinion it was benign it was only until they did the operation that they realised that this was not the case ..I agree it's very worrying i had never heard anything about this condition prior to my first ct scan ...I just believed i had IBS but this is not the case .. Good Luck Caroline my thoughts are with you Xx
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    • Posted

      Thank you Eve, you also x

      Did you have to wait long for your surgery? What are the next steps now for you, have they discussed anything with you or do you have to wait on more results? How are you feeling/bearing up? (I know its a stupid question) xx

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