Testing for Cushing's.

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Hello, I'm new here and am convinced I suffer with Cushing's syndrome/disease. 

I went to the doctor's (UK), listed my symtoms and eventually the doctor gave in and said she'd have to research what tests actually need to be done in order to diagnose. 

I rang to book an appointment and they said all that needs to be done is a cortisol blood test at 9am...I rang them back today and the receptionist said it came back as normal and no further action is required but I'm not convinced by that. 

My research seems to show that there are quite a few tests and that often 2 tests are done in order to diagnose. I also thought that the blood test was done at 9am after a dose of Dexamethasone at midnight the previous evening. Am I correct or is this precedure normal? What are all of your experiences with diagnosis? 

Thanks, 

Isla smile 

1 like, 14 replies

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14 Replies

  • Posted

    Hi

    I have Cushing disease which is a 1.5mm tumor on the puturity. I went to GP with lots of different symptoms at different times. The one symptom that got me refered was having no periods.after two years of seeing gyno and everyone saying I had pcos I got referred to an endocrinologists and tested.

    What you need to do is be referred to a specialist endocrinologist. Write down your symptoms.

    Typical symptoms.

    Purple stretch mark on adomen

    Fat around middle

    Hard to loose weigh

    Aches in joints

    Bruising easily

    Round face

    Buffalo hump (fat pads by shoulders)

    Lack of libido

    Red face

    Depression

    Insominia

    Extreme fatigue during day and inability to sleep

    Tests.

    24 hour urine sample

    Saliva test

    48 hour dexesomone supression blood test. High and low

    Or over a week low and high dex blood test @ 8/9 am (depends on country,lab at times) actch blood and base test.

    I only did dex tests twice. Its really hard to test for cushings. It sounds like they have done a base hormone test to see if your base cortisol is high. They need to go this at 12am as well, because this is your lowest time of producing it therefore if high, you are producing too much. The dex test only states where the tumour is. Either the puturity or adrenal. This is needed with the atch.

    There is a cycle Cushing which is very rare and hard to catch. It means you have to catch your hormone level when you are on a high. This is easier with urine and saliva test.

    Once these tests are indicating cushings, you need mri or ct scan.

    Join facebook Cushing forum. You will get lots of support and info.

    I hope this hells. It can be a long process getting listened too. Just keep logs of everything and if you have private healthcare use it. GP can be difficult.

    Good luck

    Georgie x

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    • Posted

      Hello, yes I have a lot of these symtoms...it's so agitating because I feel this is a serious issue and no one cares!!!! My blood test cortisol level was 679 if this means anything to you? Thanks for your advice! smile 
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  • Posted

    Hi i had a 9am blood test which was high, now am doing the 24 hour urine test, did you ask what the level was x
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    • Posted

      Hello, I just rang them again and the level was 679. Is this a cause for concern? The doctor has commented that no further action is needed. However, I've booked another appointment with my regular doctor because he usually 'gets the job done'. Thanks smile 
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    • Posted

      did they say the range, if its the same as mine the range went up too 500, which means it is high, mine was 895 x
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    • Posted

      I only spoke to the receptionist of the surgery so she just read what it said on screen so I don't know the range...when she said 679 I thought it was quite high though. Hopefully the other doctor will carry out more tests if I give them lots of evidence x
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    • Posted

      Hi. I thought that was higher than normal. Its worth have further tests. Did you have medication before blood tests or are you on medication, pill? This will have an impact on results.

      Testing for this disease is very much a struggle through gp. U need to get to see a specialist.

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    • Posted

      The only medication I'm on is 75mg/day aspirin because I've suffered with strokes. Okay I've got an appointment with my regular doctor booked and I'll request to be seen by a specialist definetely. Thank you smile 
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    • Posted

      I will. Do you mind linking it to me through here or private message please because I've tried looking and it doesn't seem to come back with anything on Facebook! Thanks. 
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