Sunday, June 21, 2009

Anita (Anita), pituitary bio

Hi, I've been trying for 2 1/2 years to get a good diagnosis so that I may start treatment for what my Dr's are currently calling probable cyclical cushing's disease.

I actually think my symptoms started about two years after I had my son (he was born in 2000). I first started gaining weight, had several stress fractures in my feet, and had severe headaches. Up until 2007, I had gained about 30 lbs ( I had lost all my "baby weight"). I had hypertension really since before I was pregnant with my son, but it was mild and was not treated until I was pregnant. It was controlled for years after with one medicine and I had been able to get off the medicine with diet and exercise.

Then starting in early 2007, I developed severe edema, uncontrolled hypertension up to 198/111, and I was feeling anxious and felt like I was going to die. I was treated with a combination of different medications all for my blood pressure.

Initially, they did a 24 h cortisol test for and it was normal, so it was dismissed as a cause. They tested me many times for a pheo, renal artery stenosis, etc. All the wile my symptoms kept getting worse. I had flushing, sweating, osteopenia, rib fractures with no trauma.

Then starting last summer 6/08 I started rapidly gaining weight and have gained 100 pounds since last summer. I eat a very healthy diet, and did exercise all the time. I was on a cycling team with my work and was riding about 70 miles a week. I had to stop that last spring because I was so short of breath and gould not keep up with my team. I now have stretch marks on my abdomen, hips and under my arms. I have gained most of my weight in the abdomen and neck and chest. I have the "buffalo hump" and still have edema despite being on 3 different diuretics 2x per day along with other blood pressure medications. My muscles feel so weak, it's hard to get up and down the stairs I have double vision and do have a pituitary microadenoma documented on dynamic MRI.

I went to the Mayo clinic last fall and was seen by one Endocrinologist who was sure I had Cushing's. He felt that since my cortisol levels were not high enough that I may have Cyclical Cushing's. He recently has spoken to my Family Dr who is trying to help me. The two local endocrinologists have been a disappointment to me. They seem to know much more about Diabetes and Thyroid.

According to the new Guidelines for Diagnosing Cushing's(NIH), my Dex Supp test is positive, but the endo Dr does not want to go by the new guideline since it is only 1 1/2 years old. She wants to retest me in August and also repeat my MRI to see if the pituitary adenoma has grown.

Until then, I have to keep waiting and trying to deal with the increasing symptoms. My Fam Dr may help me do some mpre testing in between to be more aggressive. I am trying to learn all I can so that I can help my Dr's so they can help get me well!

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