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I am 47, but in my mid 20's I developed a lump at the base of my neck, gained about 70lbs in my trunk mostly, lost muscle mass in my arms and legs, and developed bright red/ purple stretch marks across my hips, tummy, arms and breast. I have been to countless Dr.s and they all take one look and say...classic Cushings. However they draw blood and test cortisol levels and then say no, normal. Try diet and exercise. I have been on a constant diet, I have had 3 children all conceived with fertility treatment. I have very thin and translucent skin, bruise easily, had very irregular periods (I am post menopausal), Migraines, insulin resistance (and recently diagnosed with full blown diabetes that I am controlling with diet and metformin). I have severe joint pain and have fine white hair (a lot) on my face and arms...not on my legs. I have dark skin patches, a pendulous belly and breasts. I always have low potassium, occassionally anemic. I was diagnosed with fibromyalgia about 4 years ago after the birth of my third child. My fatigue is debilitating and mental fog make quality of life marginal at best. I have chronic infections that are extremely difficult to clear up. This spring I have been on 4 rounds of antibiotics and 2 rounds of steroids and the infection still did not clear completely. While on the prednisone, I had an increase in energy and mental fog lifted and I was able to move and work all day and still have energy for the kids in the evening. My 16 year old daughter is showing hair growth, grew 6 inches and gained 70lbs. in a matter of months, has joint pain, fatigue, headaches (prior to this never even took an asprin) has developed chronic sinus infections, has purple stretch marks on tummy, hips and breasts. Carries all the weight on her trunk, has pedulous breasts and thin arms and legs. I am very concerned for her and myself. Her Dr. said " look in the mirror, it is hereditary, she is just going to be overweight like you". That didn't sit well with me, since my mom is 5'6" and weighs maybe 135. My daughter prior to this has always been thin and one of the smallest girls in her class, so of course she is depressed. I have struggled with this my whole life and it has ruined my confidence and ability to do the things that I love. She is a dancer and beautiful singer, but it is affecting her voice and her ability to move when dancing. She and I are both very limble. My dr. tested for cushings at my recent physical but, only drew fasting blood work in ther morning. Everything I have read says that it should be two blood draws, one in the afternoon as well. I have difficulty sleeping at night and drag all day. I am on a ton of meds : Metformin, savella, HCTZ spirno., potassium, Armour (thyroid), adderal, allegra d, a nasal spray, 2 inhalers (one is albuteral). Plus I take Maxalt as needed for migraines. I am not a complainer at all, I do cycle in and out of the "blues". I was very thin (128lbs 5'7") prior to this starting. I also have lost 21/2 " in my height. My previous Dr. left and went into research and my current Dr. is a great listener and very young and willing to try new things. I feel like he gets all excited b/c he thinks he's figured it out and then all of a sudden when the tests comes back negative, it is " just continue with what we are doing". I am tired of looking for answers and if it werent for my daughter, I'd quit. I have an 11 yr. old daughter who is also starting to show symptoms as she is approaching puberty. What do you think? Is there anything that jumps out at you? I want to be on the move (without the pain and fatigue) I feel like I am walking through quicksand and thinking through oatmeal. I really have all the symptoms of Cushings. My friend is a pharmacist and she has said it was Cushings from the beginning. What do you think? The only symptom I don't have is the moon face, however, I have a much puffier face than I did. My head is small and I look like a raisin on the top of a grapfruit. I had beautiful skin then it got thin and crepe looking and I had breakouts, but that has subsided a lot now. My daughter has Acne on face back and chest. Please help me ask the right questions so she doesn't have to live like this. I am desperate and frustrated.
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Hon, I believe you have classic cushing's syndrome.
May 9, 2012 - 1:08pmGet to a great endocrinologist and first do a 24 hour urine free cortisol test. That means you collect all your urine for 24 hours and then return it to the lab.They can find out the total amount of cortisol you have released in a whole day.That is a start.
After that the ntesting gets more intense. People on the boards will help you through this.
I am sorry about the fibro too.
Be as well as you can.
Doreen in Connecticut
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The above comment was mine but I wasn't logged in :(
In addition to the websites I mentioned above, we have very active message boards if you want to talk with other "Cushies".
Cushing's is a very difficult disease to diagnose - it helps that your doctors are on your side. An endocrinologist who specializes in Cushing's will help you get the tests you need.
Best of luck to you!
May 9, 2012 - 11:02amMary O'Connor, founder of Cushing's Help at http://www.cushie.info/
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It's very unlikely that you could be diagnosed with only one blood test. Typically, many tests are necessary for a Cushing's diagnosis.
Diagnosis is based on a review of the patient's medical history, physical examination and laboratory tests. Often x-ray exams of the adrenal or pituitary glands are useful for locating tumors. These tests help to determine if excess levels of cortisol are present and why.
No single lab test is perfect, and usually, several are needed. The three most common tests used to diagnose Cushing's syndrome are the 24-hour urinary free cortisol test, the measurement of midnight plasma cortisol or late-night salivary cortisol, and the low-dose dexamethasone suppression test (LDDST). Another test, the dexamethasone-corticotropin-releasing hormone (dexamethasone-CRH) test, may be needed to distinguish Cushing's syndrome from other causes of excess cortisol.
For more information on Cushing's testing, see the CushieWiki at http://www.cushiewiki.com/index.php?title=Testing or http://www.cushie.info/
Best of luck to you!
May 9, 2012 - 10:47amMary O'Connor, founder of Cushing's Help at http://www.cushie.info/
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Hi Anon,
Welcome to EmpowHER. The signs and symptoms of Cushing's syndrome vary.
Common signs and symptoms involve progressive obesity and skin changes, such as:
You might want to ask your doctor about other testing such as
Saliva test. Cortisol levels normally rise and fall throughout the day. In people without Cushing's syndrome, levels of cortisol drop significantly in the evening. By analyzing cortisol levels from a small sample of saliva collected late at night, doctors can see if cortisol levels are too high, suggesting a diagnosis of Cushing's
Imaging tests. Computerized tomography (CT) scans or magnetic resonance imaging (MRI) scans can provide images of your pituitary and adrenal glands to detect abnormalities, such as tumors.
You might not have Cushing's disease, many other conditions can also have the same symptoms. It might be also good to get a second opinion from another doctor.
Here are some resources for you
https://www.empowher.com/condition/cushings-disease
Best,
Daisy
May 8, 2012 - 4:00amThis Comment