Discussions By Condition: Endocrine conditions

Symptoms of Cushing's - Tests all negative

Posted In: Endocrine conditions 50 Replies
  • Posted By: Anonymous
  • October 24, 2006
  • 06:47 PM

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.:confused:

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  • 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.
    Anonymous 42,789 Replies
    • November 3, 2006
    • 01:31 AM
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  • 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. :)
    Anonymous 42,789 Replies
    • November 8, 2006
    • 04:54 PM
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  • 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
    Anonymous 42,789 Replies
    • November 9, 2006
    • 09:13 PM
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  • 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.
    Anonymous 42,789 Replies
    • November 11, 2006
    • 04:10 AM
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  • get MRI for pituitary tumour
    Margie600 2 Replies
    • November 11, 2006
    • 11:34 AM
    • 0
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  • 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!!!!!!!
    Anonymous 42,789 Replies
    • November 11, 2006
    • 11:02 PM
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  • 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.
    Anonymous 42,789 Replies
    • November 12, 2006
    • 03:55 AM
    • 0
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  • 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.
    Anonymous 42,789 Replies
    • November 12, 2006
    • 05:40 AM
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  • 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. :)
    Anonymous 42,789 Replies
    • November 12, 2006
    • 06:08 PM
    • 0
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  • get MRI for pituitary tumour Hi, Margie600 - The MRI is a good suggestion. Thanks. :)
    Anonymous 42,789 Replies
    • November 12, 2006
    • 06:11 PM
    • 0
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  • 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. No...no Prednisone and thyroid is supposedly fine. Have not yet invetsigated the adrenal glands or lungs. Thank very much for your response. :)
    Anonymous 42,789 Replies
    • November 12, 2006
    • 06:17 PM
    • 0
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  • COOP7I meant to ask, you said you had some tests, but did they give you the Insulin tolerance Test (ITT), as this is the standard test for diagnosing Cushings. 24 hour urine is not sufficeint, nor are some of the tests like glucose tolerance test. And also MRI of adrenal glands or pituitory gland are helpful in Cushing's diagnosis to illiminate any posibility of tumors.agape.sam
    Anonymous 42,789 Replies
    • November 14, 2006
    • 11:04 AM
    • 0
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  • Your symptoms are classical signs of Cushing's Syndrome. I had this disease and had all the symptoms you have and more. Is your blood pressure elevated? This is another symptom. Read my post on the misdiagnosis forum. I would recommend getting the 24 hour urine done again and also have am cortisol and pm cortisol blood levels drawn. Are you seeing an endocrinologist? I went through years (over 10) of being misdiagnosed and I had surgery in 2002 for a pituitary tumor causing the Cushing's and now feel so much better. By the way MRI's often do not show a pituitary tumor since they are so tiny. Good Luck and let me know what happens.Laurie:)
    laurie hahnlen 19 Replies
    • November 16, 2006
    • 00:45 AM
    • 0
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  • Also the 24 hour test is one of the BEST tests for Cushing's Disease. I am fortunate to have an endocrinologist at a major medical center who specializes in Cushing's and he always says the 24 hour urine is the best since cortisol levels change so much during the day. (this gives you the average for the whole day). Like I said before if it is a pituitary tumor an MRI is only helpful when it shows a tumor. Many do not show up because they are so tiny. Mine did not show up.Laurie:)
    laurie hahnlen 19 Replies
    • November 16, 2006
    • 00:50 AM
    • 0
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  • If you are a female, you may want to consider being tested for Polycystic Ovarian Sydrome (PCOS). It is underdiagnosed, and many doctors are just starting to learn more about it. Many of the symptoms seem to be similar to Cushings Sydrome. So much so, that often doctors first test for Cushings. If negative, further test for PCOS. Symptoms include tendency to gain weight/difficulty losing weight, insulin resistance, increased acne, increased facial hair, scalp hair loss, mood swings, fatigue, acanthosis, decreased fertility, increased chances of being having diabetes, heart disease.....the list goes on. Some people have several symptoms, others have a few. Good luck! LMW
    Anonymous 42,789 Replies
    • November 17, 2006
    • 05:10 AM
    • 0
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  • has your shoe and ring size gone up? If yes check out acromegaly
    Anonymous 42,789 Replies
    • December 7, 2006
    • 07:17 AM
    • 0
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  • I agree that the UFC is a good test, however some people who have Cushing's don't get a high UFC reading. You could also be cyclical and then you would have a hard time getting high numbers. Cyclical is when you go in cycles of high cortisol, this can be weeks, months or even years. I am cyclical, so I would suggest seeing an Endo who knows about cyclical Cushing's and how to test for it. I don't know if PCOS has been ruled out, but that could be helpful. Also, get your Renin checked. Good luck to you:)
    Anonymous 42,789 Replies
    • December 14, 2006
    • 04:27 PM
    • 0
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  • Have they tested your ACTH level? I have a lot of symptoms of Cushings and Acromalgy but the only thing so far is low acth and low cortisol.
    tam4givin 19 Replies
    • December 21, 2006
    • 04:48 AM
    • 0
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  • Are you taking like steroids, or any medicine for asthma? Remember, the tumor may be on your Adrenal or your Pituitary Glands, so make sure they are doing the right exams. They do all the test and I hear it is sometimes hard to diagnose. 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.:confused:
    miitynice 5 Replies
    • January 4, 2007
    • 07:12 PM
    • 0
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  • endocrinologist !!!! You have to see one! To many hormone symptoms can be from to many things. Some times to low and to high have the same symptoms! :(
    tam4givin 19 Replies
    • January 4, 2007
    • 11:41 PM
    • 0
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