Trying to get a diagnosis for Cushings

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I have not been well for over four years. Every time I have been to the doctors I have been told that my symptoms are due to mental health. The last year I have noticed a more of a change in my health. Uncontrollable weight gain promently on my stomach and face. I have purple marks all over my stomach. I have started to get a jump on my back and my face is always red. I have tried everything to lose weight but lose it from my arms and legs which then make my stomach look worse. I suffer with insomnia and the last six months I have been having terrible muscle pain and joint aches. I have lost my trust in the doctors. What shall I do? Do I demand certain test or just pay privately?

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  • Posted

    Hi Tori,  Sorry you are feeling so bad.  My suggestion would be that you ask to see another GP or ask for a referral to an Endocrinologist.  Some of your symptoms certainly sound like those I had when I was trying to get a diagnosis.  The trouble is that because we are so rare many GP's will never have seen a Cushings patient and I guess some will think that we are just fat women who overeat!  You must get to see someone else.  I don't think you should have to pay to go privately.  Some of the others in the Group may have ideas.  Are you in UK or USA?  Keep us up to date.

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  • Posted

    U need a cushings specialist sadly usually they are private and you may have to travel , do u get anxious not just weight gain but swollen looking face and do you ever feel really hyper like loads of energy talk fast , feel like your on drugs ? If you can afford it you need to see a specialist DO NOt waste your time on local endos it's one of the hardest conditions to diagnose and may not show up in all tests if cyclical which is a nightmare . Most docs will do one blood test and send u home .

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  • Posted

    I was 14 when they finally diagnosed me after years of being so unwell, the only time they started moving was when I was 13 after they sent me to a mental health clinic, I then went back to doctor that dealt with my diabetes and I told her straight to the point of how unwell I was I was so angry and burst out in tears all she told me was "see your depressed, you need mental help" and that I hated school so I was apparently lying to everyone!!! I told her if she didn't start doing any tests then I was going to report her she finally started to do tests Then realised I wasn't lying then shipped off to another hospital over 400 miles away!

    I'm 19 now and I'm experiencing everything all over again, but again my new doctor also doesn't believe me after one normal blood.. but I have a 3mm swelling in my pituitary and they don't want to investigate anymore!

    I can just imagine how you feel... I've experienced it once and now again!!

    Try your best to get them on your side and to start investigating because they didn't with me and that's how I ended up with type 1 diabetes.. basically doctors not doing their jobs...

    hope your okay and something gets sorted soon..

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