Symptoms of Cushing's - Tests all negative

[COOP7]

I have numerous symptoms of Chushing's Syndrome (weight gain, unatural rounded face, hump in back of neck, hair loss, bone deterioration, night sweats, etc.). However, I was recently tested by my doctor and she said that all my blood tests were normal (except my blood suger was elevated) and that my 24 hr. urine test was normal. I should be happy that my tests were normal, but I know that something is wrong with me. All you have to do is look at me to see that I do not look normal. Should I be re-tested or do these symptoms denote something else? I trust my physician, but feel that perhaps the tests were inaccurate. Does this sound familiar to anyone else? Should I be re-tested? Please help.

You may wanna try having a doctor do a saliva test. I heard saliva test for hormone's is much more accurate then blood. Keep going to different doctor's too, im in the same boat as you right now and i know myself well enough to know that something is wrong.

[COOP7]

[quote=kaytlan;6376]You may wanna try having a doctor do a saliva test. I heard saliva test for hormone's is much more accurate then blood. Keep going to different doctor's too, im in the same boat as you right now and i know myself well enough to know that something is wrong.


Kaytlan -

Thanks for your response. I, too, know that something is definitely wrong with me. I will discuss the saliva test with my physician. Good luck to you in your search for an answer and please let me know how you are doing. If I have any success with a diagnosis, I will let you know.

Hi COOP7,
You may wish to read my little bit that I posted at Tell us your medical history at thread http://forums.wrongdiagnosis.com/showthread.php?t=3983, Anyone like me? Help!
In the list of sympotoms I failed to mention I also had a hump, commonly known as a buffalo hump, on the back of my neck area, and stretch marks appeared on my backside adn top of thighs at teh age of 12, though I hadn't gained weight at that time, and in 1991 had the moon face typical of Cushing's sufferers.
for about five years a lot of focus was on me probably having Cushing's Syndrome, which I didn't. It looks as though I may have GHD, growth hormone defieciency (all the symptomes), but it is yet to be confirmed. Any info I get back from my own tests if positive I will post here to you and on my own thread. My saga has been going on since 1991, so I very well understand the frustration. I hope yours doesn't last so long. GHD in adults is a grossly overlooked condition and can be treated.
Agape, and all the best,
Sam

The most common cause of Cushing's Syndrome is prolonged corticosteroid therapy (such as Prednisone), so that would be my first question ... are you on any corticosteroid/glucocortiod drugs?

If not, it might be possible to get the test redone just to make sure, but it depends on just how "normal" your other 24 hr urine test was in a way. The 24 hr urine test really is the gold-standard for diagnosis, other studies can be used to confirm the diagnosis (ie ct of adrenal glands, MRI of pituitary, images of lungs, thyroid etc) but only to find the source of the increased ACTH and not diagnosis.

[Margie600]

get MRI for pituitary tumour

Do you suffer from extreme craving for sweet stuff all the time? I have since 12 years of age. I plugged in sugar craving and disease yesterday and was blown away. There is a condition called Syndrome X, and often people are misdiagnosed with or investigated with Cushing's when they have Syndrome X. Worth a look, and as for me it looks as though 25 years of unanswered questions have come to an end, and I hope it does for you. Syndrome X is curable!!!!!!!

I don't know exactly what you're reading, but Syndrome X is an old term of Metabolic Syndrome which is very different than Cushings in physical presentation as well as laboratory presentation. While Metabolic Syndrome is defiantly becoming a problem, Cushings is a whole different animal if thats what the signs point towards. A few of the symptoms can cross over, but the underlying cause is very different.

I was reading through a very thorough and informative site where the clinic has seen 100,000 women pass through its doors. http://www.womentowomen.com/insulinresistance/index.asp
Agreed most definitely that Cushing’s syndrome is a total different animal, that is why if someone is tested for it and they don’t have the syndrome they aren’t going to get any positive findings. The doctors focused on Cushing’s with me for about five years, talking about brain tumors and how they were going to access my pituitary via boring up my nose; despite them not finding a tumor by the way and worrying me sick unnecessarily. I personally didn’t feel I had all the symptoms to warrant any Cushing’s, but back in 1991 I put my full trust in the doctors and thought they should know what they were talking about and since I didn’t have the wonderful access to the internet I didn’t bother questioning what else it could be. And back then I was also told if I had test for the syndrome ten years later I might show signs of Cushing’s then, I may just be in its early stages. 15 years from 1991 I definitely don’t have the syndrome.
The doctors I dealt with only recognized or associated insulin resistance in someone with a pituitary tumor, steroid abuse or individuals who are diabetic.
They never spoke of anything like syndrome X or growth hormone deficiency in adults, these were far closer, if not totally reflective of the symptoms I did and still display.
Having had a quick squizz at metabolic syndrome X there doesn’t seem to be much detail, or plan English for the lay man, as with the site I discovered yesterday. And of course, as usual, some doctors questioning the existence of such a syndrome in the first place, as they do with other things, leaving many undiagnosed or misdiagnosed.
I have hyper mobility which can manifest abnormal cortisol readings (only found that out three weeks ago), but the doctors in 1991 obviously didn’t know that and saw it as another sign of my having Cushing’s.
No matter what the condition someone has they must look at all their symptoms rationally and not rely on the doctors knowing or finding all the answers. Research even the most unlikely stuff or leads and find any common threads and throw out things that are just not related. I wish I hadn’t placed so much trust in the doctors’ knowledge. If, for myself, I find I have syndrome X, it will have been in no way due to any input from any doctors what so ever, and that is very sad. I took a lesson from a cousin who told the doctors she had Lupus but they didn't listen till 20 years later!!! Life is too short.
Agape.

[COOP7]

Originally Posted by searchingsam

Hi COOP7,
You may wish to read my little bit that I posted at Tell us your medical history at thread http://forums.wrongdiagnosis.com/showthread.php?t=3983, Anyone like me? Help!
In the list of sympotoms I failed to mention I also had a hump, commonly known as a buffalo hump, on the back of my neck area, and stretch marks appeared on my backside adn top of thighs at teh age of 12, though I hadn't gained weight at that time, and in 1991 had the moon face typical of Cushing's sufferers.
for about five years a lot of focus was on me probably having Cushing's Syndrome, which I didn't. It looks as though I may have GHD, growth hormone defieciency (all the symptomes), but it is yet to be confirmed. Any info I get back from my own tests if positive I will post here to you and on my own thread. My saga has been going on since 1991, so I very well understand the frustration. I hope yours doesn't last so long. GHD in adults is a grossly overlooked condition and can be treated.
Agape, and all the best,
Sam

Hi, Sam -

Thanks very much for your response. I will definitely invetsigate GHD.