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Help I need some advice, I have been told that I have all the symptoms of Cushings Syndrome. My blood levels came back high, so have just done a 2 x 24hr urine collection and a 8mg dexamethrone test, then bloods next day at 9am. My cortisol level dropped to 27 which I dont understand what the levels are. Then I was told my thyroid was 9.7 which again I dont understand. I also have a Adrenal Tumour. Do I have Cushings or not can somebody please help ???? Thanks Julia x

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  • Posted

    Hi Julia,

    As it was so long ago that I had all these tests done,I'm afraid I can't help on your blood results.

    HOWEVER, please look up Cushing's Syndrome,as this can be caused by a benign adrenal tumour (or a benign tumour somewhere else in the body,which is called an ectopic tumour). It's called Cushing's Disease if it's caused by a pituitary tumour.

    The Pituitary Foundation people are brilliant if you want information.You can speak to someone,or leave an email,and someone will get back to you. Tell them you are worried,and don't understand.I really do recommend contacting them.I've even had to recently for advice on my medication.

    I know it can be a very traumatic time.I had tests galore,but in my day,they didn't even suspect Cushing's because it's rare,so didn't diagnose it for 5 years,which was in 1997. Although not nice,the fact that they've suspected it means they'll keep a good eye on you.Good luck.Keep in touch.Gill

  • Posted

    Dear Julia,

    Sorry to have taken so long to reply.  I see that Gill has replied to you.  I did not have an Adrenal Tumour so I cannot help much except to say that I wish you all the best.  Do you have an Endocrinilogist.  Cushings is very rare so not all GPs know quite what they are dealing with.  The confusion is I understand the worst.  I do hope that another member of the group will answer you better.  We are here if you need us.

  • Posted

    Hi Julia. Sorry for the late reply ( Ive been away on holidays to see my dad for fathers day smile ). Its hard to know what the test results mean without ranges included. But i think i may be able to help out. It looks to me that you have high cortisol levels. You have suppressed following dexamethazone so that rules out a pituitary source. You already know you have a benign tumor on your adrenal gland so that is most likely the source of the increased cortisol. I do know that some people live with those benign tumors and never have any issues with them. But if you are having symptoms of high cortisol and its affecting your activities of daily living, them i suggest you speak to your doctor to get a referal to a surgeon. The removal of adrenal tumors is a pretty easy surgury and recovery is relatively fast.

    There are many symptoms of cushings syndrome Weight gain, Unsightly purple striae, increase in blood pressure/ blood glucose to name a few. But the hardest thing about high cortisol levels is the inability to be able to cope with stress levels day after day after day. Your flight fight response is over loaded 24/7 and your body is always ready for action. You cant sleep, you get restless, stress levels go thru the roof even when your not that stressed. My advice is if your not at this level yet, dont let it get to that level. Its not very nice and its the hardest to come out of ( been there done that wish i had noticed earlier what my body was going thru).

    Just make sure your doctor does lots of testing to be sure.... i had 4 months of bloods, urine, dexa over and over n over. I had a pituitary tumor, so different to your adrenal tumor.

    But the best advice i can give is make sure you have support around you. These forums are fantastic for bouncing things off people. Even if you just need a chat..... do so. Someone will answer eventually smile

    See how you go, any questions just ask.


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