cushing disease

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hi there im new on here so please someone help

My husband has all the systoms of cushings disease, however his endrologist has done the cortisol and the 24 hr urine test and god knoes how many blood test!!

Afriend who is a pharmacist gave us the symtoms and everything is what my husband has.

He has consistently asked for a ct scan but to no avail does anyone know if it is easier to get a ct scan or an mri scan and which is better and which may show up the problem

thanks

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6 Replies

  • Posted

    Hi, I'm sorry to hear your husband is unwell. The difficulty with mri vs ct scan is it is dependant on where they think the tumour is and other tests like the high dose low dose dexamethasone suppression test will usually guide the docs to which scan to do. If it's adrenal it's normally ct and pituitary is mri. However if one scan doesn't show anything then they may undertake the other.

    Keep asking for further tests. Cushings is not always easy to diagnose.

    Hope you get some answers soon.

    Take care

    Fiona

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  • Posted

    Hi. I agree with Fiona. More tests are needed as this disease is very complicated. Your husband needs to get more tests. These can be saliva, urine and blood. He may show no results on some but thus doesn't mean he doesn't have cushings. It could by cycle cushings. An mri or ct scan may show a tumour but even if they spot this they needs results from test to confirm its causing a problem. Many people have tumours but they don't cause problems. Likewise, scans may not show the tumour as small.

    It can take a long time to diagnose and is an emotional rollercoaster. Where are you based?

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  • Posted

    I am sorry to hear that your husband is unwell.  Personally I had to have a petrosal sinus sampling as the MRI scan was inconclusive.  Your GP may not know much about Cushings.  Most don't.  You do not say what the results of the tests were.  Having started this discussion some time ago it seems sadly that we are being asked to diagnose symptoms.  Has your Pharmasist friend been diagnosed with Cushings?  Each case is completely different, there are not really any standard symptoms that could only apply to Cushings.  Don't give up though, keep asking for a meeting with an endocrinologist.  Best of luck
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  • Posted

    Hi

    Cycle Cushing is where you have high periods of cortisol and low/normal. Its rare, but dies happen. Hard to diagnose.

    Are you on facebook? Join Cushing from it. Its a forum and lots of advice from ppl with or family members. Very good.

    I'm south west based. Mr Grossman in oxford is my consultant. Brilliant. Based in churchil oxford.

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    • Posted

      thanks fo that no not on facebook but will take a note of your consultants name in case we need it, my husband has an appointment next week with his consultant and we will see if he agrees with us, thanks so much for your help
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