Thursday, February 7, 2013

It's Back...

We spoke with Dr. Friedman this week and he confirmed what we already knew. Alex is producing cortisol, yet again. She had both a pituitary MRI and an adrenal CT recently and both came back clear. As much as that sounds like good news our Cushie friends know this is not. Without a surgical target nothing can be done. 

So, we wait. In April she will have an other abdominal CT; there is a new type of scanner, a 320 slice, and we have located one in the Bay Area, only a couple hours from home. In the meantime we hope the weight gain abates, she tries another round of  Ketoconazole, a drug that can reduce cortisol (but that she have had no luck with in the past) and we pray that a target appears on the next scan.


  1. I am so sorry Rene. I pray that He lift this burden from your family and she will be healed

  2. Oh Rene, I'm so sorry. :( Prayers coming that they can find the buggar, and Alex can get on with her life. (((hugs)))

  3. Hello Rene,

    My name is Jenn and I thank you for detailing everything. I am 25 years old and was told last week that I might have cyclic cushings. I am pending an MRI and more 24 hour urine tests to complete the diagnosis. This comes after years of being told I need to eat better and exercise more. It would take me an entire blog to explain my history, but in the pictures of your daughters you've shown, I can tell you I have the exact same pictures from my childhood. I remember at 12 years old weighing 200+ pounds and wearing a size 16 dress. I am one of four siblings and we all ate and did the exact same things, but I was always severely obese whiles they were normal. When you said the doctors didn't believe the calorie counting, it hit hard because I can't tell you how many doctors (all of them, including my endocrinologist that is now looking at cushings because I came crying into her office with pictures and a year to year outline of symptoms because of frustration) said I need to diet and exercise more.

    I will pray for your daughter and I hope doctors become more aware of this disease and look for it in children. I pray that parents will find out more information if they see something odd with their child's weight. My parents didn't know better, they thought I might have been sneaking snacks at night.

    I was diagnosed with hypothyroidism and PCOS and after 5 years of treating those (levothyroxin and birth control pills) none of my symptoms went away.

    I feel your daughter's frustration. I feel your frustration and I pray everything works out.

    1. Hi Jenn, if there is anything I can do to help please feel free to email me at Put Cushing's in the subject line so I won't think its spam. Do you have a support system in place to get you through this?