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Testing Process?

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SophieK97
SophieK97

Hi, I am 19 and I have just been referred to the endcrinology department to be tested for Cushings. I have almost all of the common symptoms and it has suddenly all made sense. I completed a 24hr urine test last week (26.05.16), however the doctor told me that these results take at least 6 weeks to process with the current waiting list. I have an appointment on 29th June at 2:30pm with the doctor from the endo department, however he was reluctant to tell me what tests will be carried out on this day until we have met... Does anybody know what is most likely? He mentioned that it wouldn't be an overnight stay however after reading forums, it seems that most tests are an overnight process? Just a little confused - I want answers and tests that will give me an accurate answer!

Thanks, Sophie.

0 likes, 7 replies

7 Replies

  • brunette85
    brunette85 SophieK97

    Posted

    Hi Sophie. I have been referred to an endo having had a very high morning cortisol and all the symptoms. However I did the dex suppression test & suppressed so they're trying to fob me off. Did you get the 24hr urine cortisol from your doctor?

    Thanks

    • SophieK97
      SophieK97 brunette85

      Posted

      Hi, I was referred to the hospital where the endocrine doctor there requested a 24hr urine test - I have not received these results back yet! He said they could take up to six weeks.  This urine test is the only test I have done so far, all of the other's are to be done on 29th June at 2:30pm..  I am just unsure of what tests they will want to do!

      What tests did you have to do and what did they involve?

      Keep pushing at the doctors I would advise after reading other forums! Apparently it's a long diagnosis process.

      Thanks! Sophie 

  • brunette85
    brunette85 SophieK97

    Posted

    Hi sophie. I haven't had any "official" endo testing. I have all the symptoms and asked for a morning corrisol bloody test. My doc said no way its cushings however my level was 1101 so he referred. The dex suppression test suppressed me to 53 no 50 as meant to but the endo clinic are trying to fob me off. No idea when my appt with endo will be. Suc a kong long process and I know I have this sad
  • vicky61456
    vicky61456 SophieK97

    Posted

    Hi Sophie and welcome to the forum.  I am glad that you have been referred to an Endo as it quite a long and complicated business to be diagnose.  There can be blood tests, an MRI and a physical examination by the Endo.  After I had my MRI the tumour which they thought was on the Pituitary gland was not clearly visible so I had a Petrosal Sinus sample.  Tis determines exactly where the tumour is so that the surgeon knows where to operate.  I am so glad that you are at least on the way.  Don't forget to tell the Endo all your symptoms not just the ones you have read about.  I was only finally sent for tests after I watched a TV programme called Doc Martin.  He mentioned 2 symptoms that I had not told my GP thinking they were "personal problems".  The were excessive sweating and excessive hair growth on my face and body.  it is a difficult thing to diagnose and you ar lucky in that G.P. had even heard of it.  Good luck and please let us know how you get on.  I started the forum so that people would have somewhere to share there problems but never to make a diagnosis.  Take Care.
    • SophieK97
      SophieK97 vicky61456

      Posted

      Hi Vicky, 

      Thanks so much for your reply (and sorry for the late repsonse!). This has given me a better insight and with regards to the sweating... I am terrible for it! I have made a second appointment with the GP for next week so I can go through my symptoms and any other concerns I have, and to really get some feedback about it. 

      I only went to the doctors for a chest infection and so I am truly grateful that she recognised the possibility of Cushings! 

      I will try and keep you updated although I am sure it is going to be a long and laborious diagnosis. 

      Hope you're doing well and thanks again, 

      Sophie x

  • difritz
    difritz SophieK97

    Posted

    Sophie, my son (age 21) has just been diagnosed with Cushing's.  From the first suspicion of Cushing's to diagnosis was a two month process for him, and that was fast in the Cushing's arena.  None of the tests required an overnight hospital stay, but typically Cushie's have their highest cortisol levels at night, so he did many of the tests late and then turned them in to the lab the next morning.

    ​In order, tests he had included 8am serum (blood) cortisol and acth, 24 hour urine free cortisol, three midnight cortisol salivary tests in a row, low dose dexamethasone suppression test (take 1 mg dexamethasone at 11 pm and have 8 am cortisol blood test the next morning), and an MRI of his pituitary gland.  He has also had a lot of lab work to check various hormone levels.  Fortunately for him, all of his levels have come back positive for Cushing's, but many have lows and highs, so often the same tests are repeated many times to collect enough data for diagnosis.

    ​The testing can be a slow and frustrating process, because even finding a tumor is not enough for a diagnosis.  More time consuming is gathering enough high positive tests in blood, urine and saliva to prove a consistently high cortisol level to warrant removing the tumor.  My son has developed many health issues as a result of the high cortisol level in his body.  He now has high blood pressure, type 2 diabetes, elevated triglycerides, many vitamin deficiencies including severely low D, low B12, and low iron, hypothyroid, and many of his hormones are out of whack, so his tumor needs to come out sooner rather than later.  He will be having surgery at the end of the month.

    ​Hope this helps a little.  I wish you the best of luck and hope the diagnosis goes quickly for you.

    ​Diana

    • SophieK97
      SophieK97 difritz

      Posted

      Hi Diana, 

      Super sorry for the slow reply! My appointment with the endocrinologist is today and I guess I am a little nervous.. 

      Thank you for your reply. With regards to your son, best wishes with the surgery. I can see that he has had a lot of time consuming tests to get to this place! 

      I feel as though I might be on the way with the testing then as I have already done a 24hr urine test which is going to be discussed later today with the doctor. I am hoping that I will have some tests done today too but I am very unsure as to what it will be - the doctor was sceptical to discuss over the phone.

      With regards to your sons symptoms, my Dad has low B12 too and so this is something I will definitely mention today now - thank you for pointing that out! I have most of the other symptoms too and so I have created a list to discuss with the endocrinologist today. 

      Thanks so much for your reply it has really helped!

      Hope all goes well with your son; keep me informed!

      Sophie smile

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