Cushing Syndrome......waiting for diagnosis

Posted , 3 users are following.


I just joined this forum to see if i can get some advice and support from others who had had to travel down this path seeking a diagnosis. I have most of the Cushing syndrome symptom. From pounding never ending i might add headaches, debilitating fatigue, massive weight gain were I went from 140lbs to now 200lbs within a course of less then 5 months, easy bruising, slowly healing of cuts and scrapes, body aches, muscle pain and weakness, high heart rate, hair thinning and breaking, lump on the back of my neck, moon face, severe mood swings, axiety, blurred vision and I could go on. Taking a steps back to explain the full story I have had numerous surgeries for ovarian cysts and tumors leading up to a hysterectomy leaving just one ovary that has since stop working and i have been placed on hormone therapy. I am 31 years old. I had some bloodwork done and the first results came back normal levels or cortisol. I had a dexamethasone suppression test and the first one came back normal as well. My PC referred me to endocrinology. They ran more tests. My prolactin and cortisol levels came back elevated. They tried a dexamethasone suppression test again that this one came back abnormal. They have put 2 more 24 hr urine collections in for me to do. I recently had a ct of my abdomen. This came back showing no tumors on my adrenal glands. I am still trying to convince doctors to do the brain ct scan or mri because i honestly feel as there is something abnormal going on. Can anyone relate or offer advice on how to push for the proper testing to try and figure out what is going on. I appreciate any help anyone can offer

0 likes, 3 replies

3 Replies

  • Posted

    Hi did you hear anything about cushings, my daughter is 19 and going through all the test and as the same symptoms as you

  • Posted

    hi ashley i've been looking in to this condition because ive had all symptoms of it for to 4 months & only just realised it could be this via google was a 14 now a 20 belly have the back lump red mark up stomach skin tight & hurts at the slightest cut i was also on hrt but came off them today as i heard if ur on hrt & u go for the cortisol test the it can effect the results & i need to kno asap i've looked in to blood test acth dear but shows all hormone levels & defaults x

  • Posted

    hello everyone,

    I am still waiting on diagnosis. I had another round of blood test in which I too had to stop hrt for 30 days prior to testing. all came back elevated cortisol levels. I had a ct scan and it came back normal no tumors on adrenals glands. I have a mri scheduled for Monday. I have tried to get a normal mri a couple of times but unsuccessful due to my claustrophobia which seems worst since the weight I have put on. I am going in for a open mri so hopefully this is better and I can make it through to get answers. my weight has plateued which it good it increasing more but I can't lose anything no matter what I do. I still ha e terrible headaches, my lump on my neck is larger and hurts really bad, my spine and neck and shoulders hurt all the time. just getting to the strength to get out of bed is a daily struggle. I am always tired and ha e bad brain fog. I am really hoping for so.e answers soon so I can get on the road to recovery. hope both of you get some answers soon.make sure you requested all the blood test urine test, ct scan and mri.

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