Hi, I am a Mother of 3 boys, 20, 18 and 13. My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.
I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s. All of his cortisol levels were considered normal. He also had an MRI of his pituitary and adrenals which were also negative.
The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc. He has all of the symptoms except for the obvious stretch marks.
I believe he has cyclical cushing’s, which my sister found out she has after many years of testing. A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.
It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)
Has anyone else had cushing’s WITHOUT the deep red stretch marks. He does have stretch marks, but not the typical type you see in cushing’s.
Thanks so much
Michelle
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Apr 28, 2014 @ 16:12:49
Michelle,
It seems we have a lot in common. To answer your question, please read this article.
http://well.blogs.nytimes.com/2014/01/17/think-like-a-doctor-red-herrings-solved/?_php=true&_type=blogs&_php=true&_type=blogs&_r=1
-Sarah
Jul 24, 2014 @ 17:47:05
Hi Michelle, You are not alone. My youngest daughter has Cushing’s Syndrome and is in the long process of being diagnosed as to its cause. She does have the intense stretch marks–they started around the age of 12 and before the significant weight gain. BUT, not all patients display each Cushing’s symptom so don’t rely so much on your youngest not having the straie. They say that hypertension and a red face is common in Cushing’s–HOWEVER, my daughter has neither of these symptoms. This is such a difficult road to walk, especially when it’s our child. I suspected that my girl had some sort of adrenal issue (I researched and researched her symptoms b/c I knew something was wrong- even ran our own salivary cortisol test which showed abnormal ‘highs’)–still, the other doctors blew it off and told her to eat less and exercise more. Never underestimate the power of a parent’s observation when it comes to their children–unfortunately, most doctors consider a parent’s perspective too ’emotional’ or subjective for science. Once the source of my daughter’s Cushing’s Syndrome is identified, those docs who wrote her off will be receiving a letter from me about WHAT THEY MISSED.
Jan 17, 2015 @ 22:40:48
Hi Cerberus,
Sorry I just now saw yor reply. We’re still trying to figure out what’s going on with my son. He’s been to a new endo and then to NIH for a cushings study. They said his adrenals were a little large and his cortisol was high one night but not the other nights. ( we were there for 5 days). We will be going back probably in the spring for more tests. In the meantime he has gained more weight even though he works out with a trainer. I’m so frustrated about this. It’s difficult to watch him go through this and I feel he is missing one of the best times in his life. How is your daughter? Any luck finding anything?
Jan 17, 2015 @ 22:41:46
*ceebee
Jan 23, 2015 @ 01:14:26
HI Michelle,
I know how difficult this all is. Believe me, we are still plugging along here and still no definitive answers for our daughter. Many more than just a few cortisol tests need to be done. Testing should be ongoing over months and months, not just 5 days.. It’s frustrating b/c the docs tend to focus more on the number of ‘normal’ lab values, while placing the ‘abnormals’ on the back burner. Tell me about your son’s cortisol testing…serum, urine, saliva? Times of day they were done?
Jan 23, 2015 @ 01:15:17
I also meant to ask, have they done ACTH levels? What do his testosterone levels show?