Today is

My 15 year old son has been struggling for almost a year with unexplained physical and psychological symptoms.

He suddenly developed anxiety about going to a school that he loves, and we consulted an endocrinologist because thyroid problems run in my family. Thyroid was ruled out early, but based on his symptoms, he was tested for Cushings and pheochromocytoma.

His symptoms over the past year have come and gone but they've included weight gain,excessive sweating, hot flashes, nausea, headaches, fatigue, joint pain, back pain, ptosis of his right eye, elevated blood pressure, tremors with exercise, constipation, diarrhea, irritablity, anxiety, and depression.

Early on, he had an elevated ACTH level, and the doctor assumed it might mean Cushings, so he did a dexamthasone suppression test that came back negative. A plasma metanephrine test came back elevated at 2 1/2 times upper limit normal so for 2 months they tested and scanned looking for a pheochromocytoma. None was found.

Over this time, we also got him psych treatment in case this wasn't a physical problem. He's been to therapists, spent a month and a half over the summer attending an adolescent day program for anxiety, taken 8 different drugs and nothing has helped.

Recently he had an 8 AM cortisol test to check for Cushings' and it came back exactly the opposite of what they expected-it was below the normal range. He's had testosterone levels come back below normal one time and above normal the next. Because he has an abnormal result followed by a normal, they just dismiss the abnormals. His body doesn't seem to be responding the same way twice.

I'm looking for ideas on what we might look at next. If any of the psych treatments had helped at all I wouldn't be wondering about a physical problem.

Labels: bios, Ellen, not yet diagnosed, pheochromocytoma, son

My story is the same as everyone else's but with too many years and a handful of doctors who ignored my symptoms.

Around 1997 or so, when I was in my mid-20s, I started to gain an enormous amount of weight. I had been lean and active, measuring 5'5" and about 120-125 pounds. I cycled and exercised. I was a strict vegetarian.

Within six months I had gained 100 pounds. I was depressed. I felt awful. I was trying everything to counteract this eight gain. My energy became very uncontrollable and manic. This went on for nearly a decade. My face was red and ruddy. I was covered in bruises. I had high blood pressure. My skin was papery thin and I was constantly in the emergency room - either for horrible torn flesh or broken bones. I mean, this was over and over: broken leg, broken toes. My doctor in Florida saw all of this and never put it together. She prescribed medications for the depression and told me I had better lose weight. I even brought friends in with me to my doctor and they confirmed I had a healthy diet and was not overeating. I could not have been more down in the dumps. I was so embarassed about the way I looked. I went from a size 6 to a 22. People I hadn't seen in a while would stare me in the face and not know who I was. My hair also changed texture and was now wiry and frzzy.

One time a friend and I met an old pal in New York The two of them chit chatted as I sat quietly waiting for him to acknowledge me. Finally he asked her, "IS gina coming to meet us?" I was sitting across from him. He didn't recognize me.

I was also new to the work force and trying to navigate my career as a bright young journalist at the same time I felt physically terrible and looked, frankly, unkempt.

Finally in late 2005 we found a small mass on my adrenal gland during a cat scan I was given on yet another trip to the emergency room. My doctor STILL did not diagnose Cushings. She thought I had a rare tumor (phenochromocytoma). At any rate, we brought in a surgeon to remove the tumor - unfortunately he nicked my pancreas and gave me a nasty infection that required two more surgeries. However, oncce the tumor was out, the weight melted off and I began t feel like "my old self."

I lost about 65 pounds in the first month or so and my blood pressure and all other vitals returned to normal.

The road back to health has been long but now I am in tip top shape again. I take no medications and I am not depressed.

I will say this: Cushings wreaked havoc on both my body and my mind. I have the scars all over me from torn skin and broken bones. I have depostis of extra skin hanging on my frame from ballooning up so rapidly. I wish doctors knew more. about Cushings/ I wish I did not go undiagnosed for a decade. I'm glad its over, yes,but everytime I think about it - which is every day, still - I get sad. I lost a third of my life to that disease.

Labels: adrenal, bios, Gina, pheochromocytoma, surgery, tumor