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Hadie (Lane), Undiagnosed Bio

2 Comments

I have a huge buffalo hump with purple striations below it on my back.

No high cortisol problem found.

Frusterated and searching for possible other cause.

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Mary Lou (MarLo), Undiagnosed Bio

2 Comments

I am the mother of a 19 girl who is currently being evaluated for Cushing’s Syndrome/Disease.  My daughter is in her first year of college and over the past eighteen months, she has gained close to 50 pounds.  I have watched her struggle and we have even attended two military-style bootcamps for weight loss.

Despite eating healthy, during that five weeks, she gained 2 pounds.  Her facial features are so distorted from her moonface appearance that she does not even look like herself.  She has a Buffalo Hump and purple stretch marks on her rotund abdomen.  She has almost no energy and when not in class, she is sleeping in her dorm.  She has a brown stripe of skin in  the crease of her neck which prompted her roommate to ask her if she had worn a necklace with copper in it.  Her vision is poor and her periods are now very irregular.  She has excessive thirst and urination.

About a year ago, she had her wisdom teeth extracted and ended up with a life-threatening infection which included a second surgery emergency surgery and she was placed on a ventilator in ICU for three days, due to the possibility of the infection (swelling) occluding her trachea.  The doctors were so perplex how a healthy girl could have such a poor outcome from this surgery.

I looked up some of these symptoms and it seemed rather clear what she likely had.  I took her to an internist and expressed my concern about Cushing’s when she was home for Christmas break.  The physician ordered blood tests, including a CBC and metabolic panel, thyroid panel, and prolactin.  She also ordered a 24 hour urine for Cortisol.  Her CBC was normal as was the prolactin and thyroid.  Her liver enzymes were elevated about three times normal.  She then followed up with a Hepatits panel and an abdominal ultrasound, both of which were normal.  The 24 hour urine Cortisol was elevated and we are now waiting on a referral to an endocrinologist.

My daughter’s university is about 350 miles from our home, therefore I requested the endocrinologist be in her college town.  I plan on going there for her appointments and my husband and I have discussed moving there if necessary.  She has a very kind roommate who is dependable and helpful.  I still do not like her being so far away, knowing that she likely has a very serious condition.  My daughter’s spirits remain high and I think she is looking forward to beginning treatment, whatever it may be, and feeling better.  I know that the weight and the fatigue are the most troublesome for her.  I appreciate this site which has allowed me to express my concerns to so many who have been there.  God bless you all!

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Violet (hamot), Adrenal Bio

3 Comments

diagnosed with cushings 2004 after being miss diagnosed 12+ years.

Head a left adrenalectomy for a benign adrenal adnoma.   Been in secondary addisons since.

My right adrenal never fully recovered it makes about 4.5 cortisol.  I average 12-15mgs of cortef per day.

Work full time as a nurse anesthetist, one daughter in 4th yr of college, have a very supportive husband we met in 2004 but did not marry until July 2012.    Bicycling is my passion and like to cross country ski.

Interested in being a support for anyone with cushings or addisons.

Would like to compare notes with any addisions on how they adjust their steriods. I am 56yrs old.

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