Should I be tested for cushings? If not, what else should I do?

Posted , 4 users are following.

Hi all I'm new here. I just wanted to some advice and opinions. 

I'm 16, and I'm 5'0-5'2 (I don't know my exact height) and I'm 73kg. I used to be very active, and played sports, and had a normal balanced diet. I've been in and out of the doctors for 2 years. And have been referred to neurologist, but not sure how long that will take. And my symptoms are getting to the point where it's effecting my daily life and stopping me from doing certain things.

Symptoms I am experiencing are: 

* increase in weight, mainly trunk area, I have a really big belly and look pregnant sad slimmer arms and legs 

* Mood swings / irritability 

* Muscular weakness, mostly in legs - thigh and knees

* Big purple stretch marks (mum says they look worse than her pregnancy stretch marks) 

* Headaches (might be tension headaches)

* Fatigue, I need more than 10 hours of sleep, and I still feel tired through out the day, and fall asleep during my classes. 

* Slight buffalo hump, my neck pushes outwards 

* Backaches, I have to sleep on my front because it feels more comfortable (bad posture) 

* Very very dark underarms, including skin folds 

* Acne and spots/ dark marks on shoulders chest and back 

* Excessive hair growth, everywhere!!! 

* Keep waking up during my sleep 

* Fast resting heart rate 

* Concentration problems 

* Sweat a lot 

* Red eye (bleeds in eyes) I have had high bp a few times but not too high 

I am not sure about having a moon face, thought my face is chubby. 


Also about more than 6 months ago I was pre-diabetic, and I took metformin to help aid weight loss and control blood sugar from insulin resistance. I didn't really lose much weight, especially whilst dieting and going to the gym. 

As well as that my blood tests showed I was low on iron, which was fixed with iron tablets. 

Doctors can't diagnose me with pcos as my ultrasound and blood tests don't suggest I have it. 

My doctor has told me to go on a very strict diet (cutting down carbs etc) because he's sure I will become diabetic in the next year or few years. 

Also my doctor doesn't know about a lot of my symptoms, he only knows about my "concerning weight gain", fatigue and muscular pain and irregular periods, as well as the high blood sugar and low iron (which is fixed). 

I'd be very thankful with any advice and opinions on what I should do, especially since it's rare to be diagnosed with Cushing and I don't want to seem like I know better than my own doctor

Ps. I think I have have covered everything I am experiencing here. 

0 likes, 6 replies

6 Replies

  • Posted

    You definately have enough self diagnosis to go to your doctor (preferably an endo dr.) and fight to get the proper testing for cushings. I myself was misdiagnosed and continued for two years with all your symptoms until I was tested again and confirmed that I had cushings. Dont give up. Stay on your doctors until they have exhausted all the test.
    • Posted

      Thanks smile I'm gonna try my best to get the diagnosis that I need and have been waiting for since I'm finally getting my cortisol levels check :D 

  • Posted

    Hi. Does sound to me like Cushing’s, but I’m not a Dr. I would ask to see an endocrinologist & request the 24 hour urine cortisol test & the demaxathone (sp?) suppression test. They’re good indicators of Cushing’s & pretty simple to do. Then they can start investigating where & what’s causing it... Keep pushing as Drs know very little about Cushing’s so will try to avoid diagnoses... Good luck.! 😃

    • Posted

      Thanks! :D I hope in the future doctors can become more aware of cushings to avoid people from thinking there's nothing wrong, when In fact they could be suffering from cushings and allowing it to develop into many other serious health issues. 

  • Posted

    Hi.  You definitely sound to me as if you should be tested for Cushings.  Make a list of all your symptoms as you have with us.  I was only diagnosed in the end because of the sweating and excessive hair growth, things I had not mentioned to my GP.  It is a very difficult disease to diagnose and most G.P.'s will never see a Cushings patient.  Kepp on until you get the correct tests.  You know your body.  The red horrid stretch marks are also an indication.  You will NOT lose weight if it is Cushings no matter what you do.  All the food goes straight to fat.  Re Diabetes, there is a Diabetes Insipidus which many Cushies get.  It is nothing to do with sugar.  It means that you drink a lot and wee a lot.  There is a tablet for this.  But you will still need to drink plenty of fluids to stop getting dehydrated.  Good luck and let us know how you get on.

    • Posted

      Thank you very much. I've been able to fully go through my symptoms with my GP, explaining everything right from the beginning and eventually got a blood test for various different things including cortisol levels, and I hope this is a step forward to reviving a diagnosis, and especially being able to become fit again and fix some of my big insecurities smile I'll let you know how I get on x 

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