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Melanie's Story...

Here is a little summary of my history:

I am an almost 27 year old female, who up until 2 years ago was thin and physically fit. I was diagnosed with mild PCOS when I was 16. A doctor had given me a prescription for Betamethasone cream about 3 years ago for my eczema on my legs which I used very sparingly over the course of a year.

Then, about 2 and a half years ago, I started to notice red and purple stretch marks down my legs, I was filling up with water and no matter how little I ate or how much exercise I did, my flat, muscular belly started to get layer upon layer of fat and my face turned very round. I was also getting sick all of the time. I told my OB/GYN about this 2 years ago and she did a cortisol test while I was still using the cream and my cortisol levels were high (which in a normal person should have been suppressed due to the betamethasone, but I didn't know this then). She told me to gradually stop using the cream and that this would all go away..well, it didn't.

I was trying to get pregnant a few months later and she put me on clomid for 6 months to help. Over this 6 months, I gained another 25-30 lbs for no reason and mostly in my belly. I finally got pregnant the first month off the clomid and all through my pregnancy I had horrible stretch marks down the inside and outside of my thighs and even in my groin area and up my stomach. I was filled with so much water EVERYWHERE that I could hardly walk and no shoes would fit on my feet. My face was so round I looked like I was going to explode. I had to have a c-section 2 weeks early due to the water making me measure 45 weeks when I was only 38 weeks and a slight increased blood pressure. I thought that after the pregnancy I would be able to lose the weight from dieting, nursing and vigorous working out.

The only weight I have been able to lose was the initial 30 lbs, most of which I am guessing is from the water weight loss. I also get bruises all the time on my arms and legs - mostly my legs, I have trouble sleeping and I have to urinate all the time. I eat very well (my husband is a body builder so we are very conscious about staying fit). Lately I have gained a few more pounds and I am starting to feel very depressed and anxious about this whole thing.

I told my endocrinologist, Dr. Carrington my story and he immediately tested my cortisol which came back even higher (51 vs 39) than it was 2 years ago. He had me do a dexamethasone suppression test last week (.5 mg dex for 2 days followed by 24h urine cortisol), and he just called me tonight puzzled because the cortisol was suppressed (actually measured LOW - 2.1) which is not what he expected. The dr said that he has had a few patients who showed suppression, but still had tumors.

He said that I need to get further testing, like maybe the CRH test, but that the only place he knows of that can do that is NIH. He said that he would go ahead and do an MRI, but he would like me to get 2nd opinions and, if possible, more comprehensive testing done to try to figure out why my cortisol is so elevated. He said looking at my labs right now he would say Pseudo Cushing's, but looking at my symptoms and history of high cortisol the past couple of years, that this does not make sense. And..I have read lots of info on Pseudo Cushing's - I do not drink alcohol, and I am not clinically depressed - I get sad sometimes, but I definitely can still function...and I show most of the symptoms which most pseudos do not.

Has anyone every had their initial low dose dexamethasone come back suppressed and still had a tumor? If yes, what tests did you have done?

My husband contacted Dr. George Chrousos at NIH and he referred us to Dr. Michael Karl at University of Miami. I have been trying to get an appt with this guy all week. He does not have any openings until July and he will be out of network for me, so they are making me jump through hoops to get all of the insurance info ironed out before they will even let me make an appt for July. They said that the only way I can get on the priority cancellation list is by talking to Dr. Karl, but he tried calling me back once while I was at work., and he has not tried back again :( Does everyone have this same problem with getting appts with these "special specialists"? Was my endo correct when he said that only NIH and these other special places can do the proper testing?

I am so frustrated and even scared. I want to know what has been happening to me. I am a mother of a VERY active one year old and an 8th grade math teacher, so I need to get back to my old self. If anyone lives around here (southeast FL - between WPB and Ft. Laud/Miami) and has a doctor who has been able to do all of the testing and who actually is willing to listen - and call you after tests have been done - please let me know.

If anyone has a similar case to mine, please let me know what has happened with you.

Thank you all for listening. I am glad to know that I am not alone because lately that is how I have been feeling. I will try to post some before and after pics later.

Sincerely,
Melanie