Do I have Cushing's syndrome?

Full story: GoErie.com 33
Q Is it possible to have Cushing's syndrome if your lab results are negative? I've included my results for your review. Full Story
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Dr Dan Pulsipher

Ferndale, FL

#1 Oct 16, 2008
Both Cushing's Syndrome and Cushing's Disease (two differing conditions) can be elusive and challenging to diagnose. Most patients with these conditions go undiagnosed for several years. It is possible for the conditions to exist despite what appears to be initially inconclusive laboratory data. The signs and symptoms can vary from person to person, thus not all patients present with a classic picture. In selecting an endocrinologist, it is important to choose one with experience in pituitary disease, not all do.
Courtney

Atlanta, GA

#5 Oct 25, 2008
Does anyone know anything about intermittent Cushings? I'm trying to do some research, but I haven't found much information. I'd appreciate any help...my email is courtoomp222@yahoo.com

thanks!
Jevlyn

AOL

#6 Oct 25, 2008
I agree I have been battleing for help since 1999 and still I have none! I have a pituitary tumor which has growen and I have all the symptons and alot of problems but, still blood work and labs are good but I am still dealing with a devil almost daily at times I may have 2-3 good days but they don't last, weight gain, sleeplessness, rash rapid heart, headaches, night sweats, ft pan knee pain, blurred vision sesitive to light and noise, I can't drive at night because of the lights, hair growth wrong places, swollen hands and feet the list goes on is there really hep and if so where! My email is micwest9@aol.com I have had 4 mri's in 2 yrs and there is a tumor but no one will help! Please!
weiz

Madison, MS

#8 Feb 3, 2009
go to a doctor!
Audrey

United States

#9 May 13, 2009
Courtney, I was diagnosed with cyclical cushings disease last fall due to pituitary tumor. I had surgery in december 08 and feel amazing (would be ever better if my thryoid was leveled out). Anyway, my journey was a long, very difficult, very frustrating one. I owe so much to www.cushings-help.com . Without their knowledge, support, and going to specialists they suggested, I would still be dealing with the pain and grief of cushings.
pkpicado

United States

#10 Feb 8, 2010
Keep going to different doctors until you get one who listens. You have to keep going. If you want that tumor out, go get it out! I almost cried when I read your story. I have so many symptoms of tumor and abnormal labs, but no tumor! I read your story and say keep going, at least you have something visible. Doctors are a dime a dozen, keep looking. I'm wishing the best for you! I hope this has motivated you and not upset you. You are the only one who can go after your health! Go after it hard!
Jevlyn wrote:
I agree I have been battleing for help since 1999 and still I have none! I have a pituitary tumor which has growen and I have all the symptons and alot of problems but, still blood work and labs are good but I am still dealing with a devil almost daily at times I may have 2-3 good days but they don't last, weight gain, sleeplessness, rash rapid heart, headaches, night sweats, ft pan knee pain, blurred vision sesitive to light and noise, I can't drive at night because of the lights, hair growth wrong places, swollen hands and feet the list goes on is there really hep and if so where! My email is micwest9@aol.com I have had 4 mri's in 2 yrs and there is a tumor but no one will help! Please!
Dawn

Garland, TX

#11 Mar 21, 2010
I had the lab tests done and it was borderline...the doctor i was already going to for polycystic ovarian disease and diabetes had actually argued with me. said cushings was rare and she only had 2 patients a year and she'd already had those 2 patients so I couldn't POSSIBLY have it...then i get a call after having an abnormal 24 hour urine cortisol test come back slightly elevated...said she couldn't understand. nobody will do an mri on me. they did a cat scan but then told that cat scans don't pick up pituitary glands. now i'm passing kidney stones..night sweats--scaring my hubby. soaked through two pillows last night...you can ring them out!
really tired of going to the doctor and spending thousands of dollars when they don't even do anything for it...just a 'here, take these tests try these meds and come seen me in a year'...
also have a cyst or goyder on my thyroid gland. anyone know what the heck is wrong with me? not rich!

Since: Mar 10

Location hidden

#12 Mar 21, 2010
Hey Dawn, if you have PCOS and borderline diabetes, you very likely to have elevated testosterone. If your doc checked it and it is normal, ask him to do a free instead of total testosterone (fT).
if your T is elevated you will have a problem with your thyroid. what happens is it decreases thyroid binding protein, making you fT4 elevated and after a while, you develop T4 resistance and hypothyroid symptoms. TSH may or may not go up.
Also, insulin resistance can cause cortisol elevations, it is very common. it can explain your borderline urine cortisol rise.
Sweating is likely due to that, but alteration in aldosterone which is another adrenal hormone, can also be the cause.
Hope this helps.
PS. Consider joining my hypothyroid group for updates and extra information.
http://www.meetup.com/Hypothyroid-Woodland-Hi...
jansoames

Norwich, UK

#13 Mar 26, 2010
Jevlyn wrote:
I agree I have been battleing for help since 1999 and still I have none! I have a pituitary tumor which has growen and I have all the symptons and alot of problems but, still blood work and labs are good but I am still dealing with a devil almost daily at times I may have 2-3 good days but they don't last, weight gain, sleeplessness, rash rapid heart, headaches, night sweats, ft pan knee pain, blurred vision sesitive to light and noise, I can't drive at night because of the lights, hair growth wrong places, swollen hands and feet the list goes on is there really hep and if so where! My email is micwest9@aol.com I have had 4 mri's in 2 yrs and there is a tumor but no one will help! Please!
Hi I am like you and I have been told by my GP that she will arrange an mri scan of the pituitary to check for a tumour. If you know you have one I can't understand why it hasn't been removed. My brother's was dealt with immediately.
Good Luck
Dawn

Glennville, GA

#14 Apr 11, 2010
I have been battling this mess for years also. I was finally diagnosed with Cushings and have been taking Ketacanzole three times a day. I have a pituatary tumor and it is on my carotid artery so they can't take it out surgerically so I had the Gamma Knife Ray Surgery about a year ago. It hasn't helped though. I don't know what to do either. I feel so depressed. I gained almost a 100 pounds in less than a year, I have the moon face, buffalo hump, night sweats and headaches. I also have PCOS and am insulin resistant. I take so much medication that it is hard to function on a daily basis. The medication is going to kill me if the cortisol from the Cushings don't. Any suggestions from someone who has had the gamma knife surgery and has taken ketacanzole?
Jessica

Strongsville, OH

#15 Aug 13, 2010
I have not been diagnosed, but I am really convinced this is what I am dealing with. I have a hump (was told it was dowager hump, but when I looked that up, it is nothing like what I have!) I have gained a lot of weight, suffer from depression, have constant back pain, insomnia, kidney stones, headaches, muscles aches. The doctors can't find anything really wrong with me, but have me on muscle relaxers (that don't work), ambien, ibuprofen, depression meds, HBP meds, ect. I am only 33! I shouldn't be having these issues, and I have been having problems since I was 19 (except HBP). The answer is always, lose weight and your problems will go away. Grr!
vballgirl

Indian Trail, NC

#18 Sep 21, 2010
I was dignosed with PCOS in may after not having a period for 7 months. Also last year was diagnosed with POTTS and within a year I gained 60 lbs. I walk 3-5 miles a day, eat pretty helthy, was a college athlete and have went through many stages of symptoms. I was diagnosed with hoshimotos and hypothyroidism three months ago. When I wen to the endocrinologist two weeks ago she tested for cusgings, I have all the symptoms. Plus I had gained weight from my last visit. I am 23 and feel like I have aged 20 years. My urin screen was negtive, and she stated that the lowest dosage of syntroid .5 was working nice. So why do I still sleep 12-20 hours and feel like i'm gonna die i'm so drained and if my thyroid seems to be leveling out why do I still feel this bad and still gain weight? Please help
Gail

Boise, ID

#19 Nov 28, 2010
Jevlyn wrote:
I agree I have been battleing for help since 1999 and still I have none! I have a pituitary tumor which has growen and I have all the symptons and alot of problems but, still blood work and labs are good but I am still dealing with a devil almost daily at times I may have 2-3 good days but they don't last, weight gain, sleeplessness, rash rapid heart, headaches, night sweats, ft pan knee pain, blurred vision sesitive to light and noise, I can't drive at night because of the lights, hair growth wrong places, swollen hands and feet the list goes on is there really hep and if so where! My email is micwest9@aol.com I have had 4 mri's in 2 yrs and there is a tumor but no one will help! Please!
You need to get the book "The gerson Therapy". You can heal the tumor yourself.
Marlene

Corner Brook, Canada

#20 Mar 19, 2011
I have been sick for a number of years .Doctors can't seem to find what is wrong I have gainedforty pounds in the last year. all my life I watched my weight walked regularly. and done a work out at least three times a wekk .So in my mind there is no reason for such a big weight gain. Now im tired all the time can't excerise or walk due to swelling so much . Girls at work say it is like watching some one going through nine months pregnacy in an five hour wrok day the swelling in my stomach gets so bad i cant work right now. my face is round and im starting to get a hump on the back of my neck.I cant sleep headache most of the time. The doctors dont know what is wrong my last two blood work got messed up in the lab I have to go back and have another done this week .This dont make me have any faith in the hospital. im just glade to have found this site. Just to knowthere is someone out there going through the same thing I was starting to feel like im alone if anyone has anymore information on cushing please email me @marlene_simms1@hotmail.com
Wtfdoc

Salt Lake City, UT

#22 Nov 9, 2011
vballgirl wrote:
I was dignosed with PCOS in may after not having a period for 7 months. Also last year was diagnosed with POTTS and within a year I gained 60 lbs. I walk 3-5 miles a day, eat pretty helthy, was a college athlete and have went through many stages of symptoms. I was diagnosed with hoshimotos and hypothyroidism three months ago. When I wen to the endocrinologist two weeks ago she tested for cusgings, I have all the symptoms. Plus I had gained weight from my last visit. I am 23 and feel like I have aged 20 years. My urin screen was negtive, and she stated that the lowest dosage of syntroid .5 was working nice. So why do I still sleep 12-20 hours and feel like i'm gonna die i'm so drained and if my thyroid seems to be leveling out why do I still feel this bad and still gain weight? Please help
Did you figure out whats wrong?
FBOMBER

Winnipeg, Canada

#23 Nov 10, 2011
I did a search of Cushings sydrome/disease. As I suspected, vaccines are implicated though not dircetly, especially in humans. But if the vaccination of cows, horses, dogs and cats causes it in them, guess what? Read this:
Vaccinations cause hyper-stimulation of the immune system and a corresponding inability of the body to attend to other diseases and stresses. Killed virus vaccinations also contain thimerosal, a mercury compound. Mercury poisoning damages the central nervous system, the immune system, kidney function and the endocrine system. If the immune system has been previously stimulated(by the last vaccine that hasn't worn off yet)the next time you stimulate it, you can actually tear it down.
http://www.depaoloequineconcepts.com/library/...
http://www.weim.net/homeovet/English/Vaccine....
Cushings is an autoimmune disorder with 10 to 15 million affected PER YEAR. Its a metabolic syndrome. there are 3 types of Cushings, one is veterinarian caused (iatrogenic) in animals, so it is medically induced disease.
http://www.thepetcenter.com/Article.aspx...
Having read about autism for 16 years I see great similarities between autism and cushings.
the99percent

Prospect, KY

#24 Nov 11, 2011
Bringing awareness, please share www.project67000.blogspot.com
latoya dunn

Australia

#25 Nov 28, 2011
i had cushings when i was 19 i had it removed in 2008 and i still have the lump on the back of my neck and hurts at least twice a week and also goes up and down all the time i have also been trying to fall pregnant but i have been misscarging all the time around 6 weekes during i just wanna know can you fall pregnant after and can cushings ever come back
Mugdha

Chandigarh, India

#26 Dec 8, 2011
Hi everyone. I'm 16 years old. I have been rapidly gaining weight since I was 12, for no apparent reason. The doctors though I had hypothyroidism, I was convinced too because my diet had always been normal and I have been fairly active my whole life. But the tests were negative and I was told to "cut my diet in half and exercise daily". One who is eats in excessive amounts needs to do this, not me! I'm really fed up and have the foolowing symptoms:

MY SYMPTOMS
When I was about twelve, my arms and legs were not so huge, but I had a huge belly.
polyuria and polydipsia (I'm not sure about this)
Fatness of the face, called "MOONFACE"
When I laugh too much, or am tired after excessive running, I turn red. Marked by redness in the cheeks, nose, chin or forehead that can come and go. ROSACEA??
BULBOUS NOSE, compared to the shape of my nose when I was younger. Rhinophyma is the most severe type of rosacea, which usually strikes men. An enlarged, bulbous nose is a characteristic of this type of the disease. Thick, knobby bumps can develop along with swelling in both the oil producing glands and the tissues surrounding the nose.
UNEXPLAINED WEIGHT GAIN
Pink/red stretch marks on the abdomen, thighs, buttocks, arms and breasts (striae)
Acne
Multiple SKIN TAGS
Fragile, thin, loose skin
Itchy, CRAWLY SKIN (feeling of ants crawling on the skin, not just
dry, itchy skin)
EXCESSIVE SWEATING
Sweating and hot flashes
Feeling hot when others feel cold
Feeling cold when others feel hot
ACHING, sore JOINTS, MUSCLES and tendons.
BACKACHE
Severe FATIGUE, weak muscles, LACK OF ENERGY
Sometimes when I wake up, I have PUFFY EYES
MYOPIA
Hair is rough, coarse, dry, breaking, brittle: HAIR LOSS
HYPERTENSION??
Mental disturbances, including mild DEPRESSION, moodiness, ANXIETY and IRRITABILITY
Mood swings, SUDDEN TEARS.
I get distracted when I知 studying, only concentrate when I知 under stress
CONSTIPATION, in the sense that I poop at different times:sometimes before school, after school (after lunch), in the evening or at night. If I知 awake for long, I値l even go at 2 AM. Also, I generally poop more than once. And, it is inconsistent- sometimes sinkers or floaters, sometimes banana like, or small hard balls- I致e never really noticed what influences (whether food or something else) these changes.
HEADACHES, when I知 over-worked, or know how much (too much) work is still left to finish.
EXTREMELY HEAVY PERIODS ALONG WITH SEVERE BACKACHE, MENSTRUAL CRAMPS, GAS IN THE STOMACH (WHICH SOMETIMES TRAVELS TO THE HEAD), FATIGUE AND EARLIER THERE WAS ANEMIA TOO. Change in normal menstrual function (heavier periods, flooding) Once, I missed a cycle, the next time when they came, they didn稚 stop for more than a month.
As u can see, this is disrupting my whole life. I'm just a teenager and can't handle this. I did some research and think i have Cushing's syndrome!! I'm going to tell my doc to check my cortisol. If there is anything else I need to know, could u please tell me. Thank u so much.
EER

Greenville, SC

#27 Jan 19, 2012
I think I have cushings disease or syndrome. I can't really say for certain which one because I'm seeing a doctor next week. I have upper body weight gain, the buffalo hump (the chiropractor said it's one of the worst he's seen and he's the one who told me to research cushings.) This was a month ago, and now I've found my answer to what has been wrong with me for two years. I went to the doctor first for migraines/moodiness.. Was put on Topamax. Made me CRAZIER. Second time around I went to the doctor thinking I had Polycystic ovarian syndrome and got no answers. My thyroid was normal. There was no explanation. But Now, I know this is it. I have excessive hair growth, head aches, fatigued, rapid weight gain and loss, uncontrollable urges to eat... I am so ready to figure this out. Also, before I was told about cushings, I noticed a lump on my head near the base of my brain. I don't know if it's a coincidence or if I'm paranoid... I guess I'll find out next week. I'm just happy I'm not alone.

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