How long did you have to wait for results?

Posted , 5 users are following.

Hello. I am currently undergoing tests for Cushings on the recommendation of my Endocriniologist. I have done a 48 hour UFC test and was wondering how long other people have had to wait for the results.  My GP has said that they do not know how long it will take as they have only ever sent one other sample of this kind off before. I have currently been waiting for three and a half weeks and just wondered if this was normal. Thanks.

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  • Posted

    Hi.

    This really depends on what type of Cushings you have as you could be cycle which takes longer. Depends also on your endo as some do uribe, salavia, blood and dexamethsone (can't spell well) test. This can take time.

    From these test they may repeat. If they get high cortisol readings they then need to determine if its tumour (I presume you are not on steroids) and is so where its located.

    However, if you don't get high results, it doesn't mean you don't have it.

    Cushings disease = tumour in piturity

    Cushings syndrome = tumour in adrenals (near kidney)

    Eptopic = tumour else where like lungs or overies etc.

    Your dexamethsone test indicates where tumour could be.

    Then they do MRI but most don't pick up tumours. It's quite a skill so if you have MRI get one with contrast. Ct scan for adrenals but they tend not to do this as many ppl have tumours (1 in 10 apparently) but they don't secrete so therefore no risk.

    Best advice, learn everything and wrote down all symptoms including ones not on websites as I found I had more. You will need to be patient as it can takes months into years before results. I was lucky and was diagnosed and treated in 6 months. But I'd been Ill for years.

    Also, if you have Facebook join the Cushings disease forum but be careful as its world wide and not everyone will have Cushings but will be pushing for it. I've learnt a great deal.

    Also piturity UK website have nurse advice and information. They are very helpful.

    Last bit of advice, have a deep conversation with family member/partner as they will be on this long road. Get them to read up and understand. But also if you live with someone, have trigger word for when you are stressed out and need help/space. You will be irrational, but you need support but also space when things are tough. I found my friends didn't really understand so just kept it to my nuclear family. Friends I just kept at arns length as it made me angry. They were only concerned whether it's cancer or not.

    Once you are treated, look up addisons. I have that now.

    Good luck.

    G x

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  • Posted

    Hi, I do remember that some results took a long time.  I believe that they go to a special lab that deals with these test.  Do let us know what happens.  Georgina is right about tealking to all the family.  It is a very long road but the light t the end of the tunnel is not an oncoming train and you will get there.
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  • Posted

    Speaking from my own personal experience, the road to diagnosis for Cushings is not particularly short. Although once the Endo's start testing for cushing's at least an end is in sight.

    Doctors believe cushings is so rare you " cant possibly have it ".

    So when you send off a sample and it comes back with a high cortisol result, they simply dont believe it could be true. As a result of this they then order more tests and more tests and more tests, as they want to be sure the tests are correct.

    Here's an example of the testing i went through to get a diagnosis. It will give you an idea of what to expect smile

    GP referred me to an Endocrinologist. After taking a thorough history she sent me off for the following tests.

    Month 1 : 24 hr Urine followed by a Midnight saliva then an 8am serum cortisol

    Month 2 : 24hr urine followed by Midnight saliva, Took 1mg of dexamethazone then had blood drawn at 8am for serum cortisol, ACTH, prolactin and a full blood examination.

    Month 3 : Exact repeat of month 2.

    Month 4 : Repeat of same tests again except this time i had 2mg of Dexamethazone instead of 1mg. I also had a head to toe CT scan and an MRI.

    Month 5 : Repeat of Urine saliva and 8am blood tests and sent to hospital for an Inferior petrosal sinus sample test. It was here i was told i had been diagnosed with cushings disease.

    3 weeks later i had my pituitary gland removed.

    It will depend on what your results show as to what tests they will add next. If you have a pituitary source, testing will be different to that of an adrenal source or an ectopic source. But in most cases, the diagnostic process is a relatively long one. And if your unlucky enough to have cyclical cushings its a bit hit and miss with testing. You might get an abnormal result one month and normal results the next. In these cases the Endo's tend to do testing over a longer period of time.

    So in short ....the response to your question is 3 1/2 weeks is just the beginning !

    People here are great to come to for answers to questions. So if you have any questions as your going through the testing process, Please ask. We are only too happy to help smile

    Good luck

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    • Posted

      Hi Debs,  Just to say a huge thank you for contributing.  When I started this discussion it was really just for support but you are so brilliant in being able to help re tests etc.  I know I often ask you to help so I hope you don'e mind.  Like I have said after being tested for every other disease I was just so glad to get a diagnosis of anything!  Thanks again.
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    • Posted

      Support is needed just as much as info if not more so smile. Your contributions are Invaluable. And Im happy to help anywhere i can be it support or info.

      I am actually writing a story about my journey. Its a novel based on facts, but just a story none the less. Will let you know when its finished smile

       

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    • Posted

      That is brilliant.  Do let me know.  I am sure it will be a godsend to those who are wating or who have been diagnosed.  It is hard to write everything on a site, although you do very well!
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