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Waiting for tests to see if I have Cushings!

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Em1988
Em1988

Hi I'm 27 years old and have recently seen a different gp. He looked through my medical records asked if I had a buffalo hump and sent me for an appointment at the endocrinology clinic . I'm due to have this appointment at the end of February. I'm nervous to be tested for Cushings but the gp I seen said he is 99% certain that it will come back that I've got Cushings. I've got stretch marks allover my tummy and my shoulders I've ballooned in weight over 4 years from a size 10 to now size 20. I have skin that bruises easily, im always tired and insomnia sets in every night. I have mood swings and facial hair. I've just been diagnosed with PCOS and though that was it. I've got quite a few of the Cushings symptoms I'm just wondering how long it takes to diagnose? And what the process is like to recover from it? Thankyou

0 likes, 7 replies

7 Replies

  • gill43753
    gill43753 Em1988

    Posted

    Hello Em, You're fortunate to find a GP who recognises Cushing's,and in sending you so quickly to an endocrinologist,it should get the ball rolling pretty quickly with tests for it. It often isn't recognised,and many GPs never see a patient with it,so in those cases diagnosis can take years. I know you can't be feeling fortunate at all,but if you have Cushing's it does need to be sorted, so the sooner the better. As far as treatment is concerned,it will depend on what is causing it. Mine was caused by a benign tumour on my pituitary gland. The tumour was removed,and I now live on medications to replace the work the pituitary should be doing,but isn't. Cushing's can also be caused by a benign tumour on the adrenal gland(s), or even elsewhere in the body, known as an ectopic tumour. It can be caused by long time use of steroids too.So you see,the Endo will need to do tests to find all this out .There are very helpful Cushing's patients on here. Find out as much as you can,it does help.Gill
    • Em1988
      Em1988 gill43753

      Posted

      Thanks very much Gill. I hadn't even heard of Cushings until my gp mentioned it and I looked everything up about it online. Was quite scary how many of the symptoms I do have. I just would like to feel normal again and not feel so self conscious about my body. Hopefully this may help me lose weight too. That's if my tests come back as Cushings but by the looks of it, it's going to be the case. Nice to find others with the same sort of problems. Thankyou x
  • vicky61456
    vicky61456 Em1988

    Posted

    Hello Em,

    Soo sorry that you are suffering but really glad that you have a good GP.  The tests do take a long time and some of your symptoms could be from the PCOS or Cushings.  As Gill said there are 3 different possible sorts of Cushings but the tests will show which one you have .  When you know which one it is one of us will reply to you if we have had the same.  I am sure we can all help you.  To be honest it is a long process but eventually the weight will come off.  I was a sixe 24 with a 45" waist when I was finallt diagnosed having been a size 12 model.  I am now back to a size 14 and feeling a lot better.  Take one step at a time.  We are always here if you need us.  Good luck.

    • Em1988
      Em1988 vicky61456

      Posted

      Thanks Vicky, I've always been so body confident now I try to shy away. I've got a massive group of friends and I'm always invited somewhere but it's uncomfortable when you feel so low about yourself. Hopefully once these tests are started I may finally get the answers I need and the help. I'll let you's know what happens once I've been to my appointment. Thanks for replying X
  • carolyn80777
    carolyn80777 Em1988

    Posted

    It took about 6 months from referal and my first cortisol level, a range of blood tests, then a Dexamethasone Suppression test and then an abdominal CT scan which showed an Adrenal adenoma. Then I had to take Metryapone for 2 months, to lower my Cortisol before surgery. Recovery is slow, as you have normal post op recovery and then the body still has to recover from the effects of years of raised cortisol. The changes are quite dramatic after the operation. The weight drops off and you will look like a new woman, which is wonderful. My remaining Adrenal gland has shut down and I take 20mg Hydrocortisone a day. I havd had 2 Short Synacthen tests to see if there is an activity, but alas there is not. I found the insomnia and depression lingered for  about  12-18 months, but as I look back I can see amazing improvement.I'm glad you are on the way to getting sorted out and the good news is,it is treatable.xx
    • vicky61456
      vicky61456 carolyn80777

      Posted

      Thanks Carolyn,  I was just so grateful to have a diagnosis that I tend to forget the names of the tests etc.  So you had insomnia too.  Horrible isnt it?  I like you take 20mg a day, also thyroid tablets and tablets for Diabetes Insipidus.  Thanks again.  Vicky
    • Em1988
      Em1988 carolyn80777

      Posted

      It's great that there's so much help and support on here for others. Aslong as I'm going to start feeling 'normal' sometime in the near future is good enough for me. Thanks for letting me know what to expect xx
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