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Guest Donna

Please help!!

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Guest Donna

Can someone please help me?  Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?

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It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cushings-patients/ and read old postings from these boards.

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Guest Barbara

Rare....I was told the same thing “you know how rare this is, you don’t have Cushings”. Fought for 7 years and found myself in the OR removing 2 pituitary tumors...CUSHINGS. do your research and don’t give up. Demand to be tested. If doctor won’t do it, find one who will. My doctor said she was told in medical school to “skip the chapter on Cushings aa you will never see a case in your lifetime. 🙄 It’s not as rare as they would like to think.  Good luck

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Responses from Facebook:

Shauna : Heard all that for 4 years before my doc sent me to endocrinologist who took great pleasure in calling my doc to advise and ask what surgeon she should sent me too.


Robyn: I did all the research and my dr did the testing to shut me up. I was right, unfortunately, and do have Cushings. You have to advocate for yourself.


Diana :You will need a variety of tests, if she says just one test, move on.
She's wrong. Find a doctor who is willing to test and not tell you what you couldn't possiblly have.


Maxine: I heard that same bs. Get a 2nd opinion. It might save your life


Sheryl: Get them to check your cortisol level.

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I was also told that Cushing's was too "rare" and I couldn't possibly have it - way back in 1983.  It took me until 1987 but I finally got diagnosed and had pituitary surgery.

Best of luck to you.  If this endo doesn't work out get another one!

https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

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I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.

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Guest Nina

Hi, don't be scared, I had Cushing's, it is rare but very treatable. Keep pushing for a diagnosis, I did my own investigation on line, took photos of before and after and my doctor was relieved we had evidence to give to the correct hospital department. Good luck, there's a lot of people out there to support you.

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Excellent, Donna!  Please let us know how your new endo works out for you.

Best of luck!

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