Cushing's Syndrome Support Group
Cushing's syndrome is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. Symptoms include rapid weight gain, atrophy of the skin (which gets thin and bruises easily) and others. Patients frequently suffer various psychological disturbances as well. Join the community to get support and find others who know what you're going...
Hello, I am not dx'd yet, however I'm a persistent researcher and have been pouring over information on Cushing's since the endocrinologist was very deterimined during my appointment yesterday. I've felt like crap for a long time and have had hypothyroidism for the last 7 years. The last two summers my thyroid crashed hard, but it hasnt' recovered from this last crash. Since July I've been "working" with my primary who I have deemed an idiot. I've been tested for a number of autoimmune diseases which all come up negative. I've been taking a new medication for my migraines which sorta works. Weightloss advice has consisted of "eat in moderation." Um... I DO! Cut carbs, calorie counting, was working out... since July I have not been able to walk down the hall without getting winded. Even had my heart blown out of my chest to make sure it wasn't heart failure. Nothing... what's more frustrating is that with every test the cute little nurses aide calls in her perky voice saying everything came out fine, we'll see you next year! Um... sorry, sweetheart... it's not "fine" I still have no answers and still feel like crap.
This past holiday I started looking for an endocrinologist once I found out that's who I should see. I found one, but it's over a month to get to see him. Figures. My husband, got a referral to this dr's office from our primary because his blood surgar and cholesterol were a bit off... really? HE got the referral and I'm deemed "fine?"
I know my husband, he's not honest with drs, so I went with. Just happens that I had availability to meet up with him at that time. I saw the name on the dr's office and my jaw hit the floor... this is the guy I wanted to see!!!
We get in and the endo thought I was the patient. No, sorry... you're seeing him... but I WANT to see you!!
Turns out there was a screw up in scheduling and hubby was supposed to see the nutritionist, they cancelled his appointment and the dr wanted to see me so he had his staff check me in. He checked me up and down... ankles (legs swollen), knees (swollen), jelly belly with icky marks (freddy kreuger got a hold of me when I was preggers). thyroid swollen enough to be visibly seen (has been that way for months), the list went on...
Anywhoo... he ordered a test where i take a pill at 11 and bloodwork at 8 and an ultrasound on my thyroid. The more I read, the more these descriptions sound like me... right down to the dying of thirst, headaches, aches and pains, and fat face. I've gained almost 50lbs last summer alone, and before that almost 70lbs over a few years.
Bloodwork is Friday, still waiting for a call back from scheduling on the ultrasound.
What was it like for you guys in this waiting, limbo period where it could or could not be? I just want a flippin answer already.
Take care, Laurie
This past holiday I started looking for an endocrinologist once I found out that's who I should see. I found one, but it's over a month to get to see him. Figures. My husband, got a referral to this dr's office from our primary because his blood surgar and cholesterol were a bit off... really? HE got the referral and I'm deemed "fine?"
I know my husband, he's not honest with drs, so I went with. Just happens that I had availability to meet up with him at that time. I saw the name on the dr's office and my jaw hit the floor... this is the guy I wanted to see!!!
We get in and the endo thought I was the patient. No, sorry... you're seeing him... but I WANT to see you!!
Turns out there was a screw up in scheduling and hubby was supposed to see the nutritionist, they cancelled his appointment and the dr wanted to see me so he had his staff check me in. He checked me up and down... ankles (legs swollen), knees (swollen), jelly belly with icky marks (freddy kreuger got a hold of me when I was preggers). thyroid swollen enough to be visibly seen (has been that way for months), the list went on...
Anywhoo... he ordered a test where i take a pill at 11 and bloodwork at 8 and an ultrasound on my thyroid. The more I read, the more these descriptions sound like me... right down to the dying of thirst, headaches, aches and pains, and fat face. I've gained almost 50lbs last summer alone, and before that almost 70lbs over a few years.
Bloodwork is Friday, still waiting for a call back from scheduling on the ultrasound.
What was it like for you guys in this waiting, limbo period where it could or could not be? I just want a flippin answer already.
Take care, Laurie
The best advice I can give you is to just go to an expert. Who you are seeing is trying to help and maybe he is helping more than any other doctor has, but what he prescribed for you, the dexamethasone suppression test, is not an accurate test for diagnosing cushing's. You need the midnight salivary cortisol test or 24 hour urinary free cortisol test.
it was found as I had fallen off a horse and broke 6 ribs
but my Primary Endocrinologist just missed it!
so I went to get a second opinion and found a better Endocrinologist
but she had to PROVE it was Cushing's and not something else
I was tested repeatedly for 4 months
Repeated 6 24 hour Urine collection tests to measure excessive Cortisol output
multiple tests to confirm ACTH hormone was suppressed
etc
my particular pattern was widely fluctuating levels of Cortisol excess -
so she had to run more tests to get enough data to prove to herself
it was Cushing's not from external influences
it can take a while to get diagnosed as Cushing's is rare.
they dont want to get it wrong
I had to STOP ALL supplements, vitamins, etc for 6 months
they needed to prove I wasn't taking ANYTHING that could be influencing the excess Cortisol
yes, it can be very nerve wracking while you wait for test results.
just do your best to believe you know what is going on
I did LOTS & LOTS of internet reading
it helped me
and getting educated on Cushing's helped me be a better patient and more helpful to the doctor
Hang in there and ensure that the Endocrime does all the tests. I am 1 year post surgery and starting to feel human again but have a long way to go. Strength.