I was a patient under the care of various endocrinologists being treated for “Subclinical Cushing Syndrome” since Oct 2010. In October 2010 while having an abdominal CT scan completed by a hospital emergency room for abdominal pain (unrelated to the “Subclinical Cushing Syndrome”), the CT showed several left adrenal gland adenomas. At that time I was referred to my first endocrinologist. My current health was as follows: I had hypertension, high Cholesterol, my menses were irregular and I had an increase in belly fat. I was 48 years old.
While under their care I had a battery of tests including, more CT scans, 24 hour urine test, salivary test and dexamethasone test. The test results were somewhat perplexing; the 24 urine was normal, the salivary test was elevated, and I failed to suppress with the dexamethasone test. The CT scan showed the same adenomas on my left adrenal gland. I stayed with this Dr. for one and a half years having these same tests repeated several times with the same results. The Dr. was perplexed and really didn’t know the proper course of treatment and therefore referred me to a specialist in NYC at Mt Sinai Hospital.
Upon going to my second endocrinologist at Mt Sinai she ordered all of the same test as above and the same results were found. She believed the best course of action would be for me to have the left adrenal gland removed, however, before confirming to me the surgery would cure the problem she required me to have a relatively new procedure called “venous sampling” completed. With “venous sampling” you take dexamethosone prior to the procedure, then wire guides are introduced in the femoral veins on each side of the inner thigh and guided up to the adrenal gland where blood samples were obtained. The purpose of the test is to see if the adrenal glands suppressed the cortisol production. I was advised that my results of the test indicated the presence of cortisol being excreted by not only the left adrenal gland, which had the adenomas, but the right adrenal gland as well, which had no adenomas. I was advised that surgically removing my left adrenal gland, where the nodules were present, wouldn’t cure me of the “Subclinical Cushings”. That most likely I also had adenomas on my right adrenal gland, but they were too small to show up on the CT scan, therefore my only option was to do nothing and see if the syndrome progressed, or for me to take the drug Ketoconazole 200mg 1 tablet twice a day.
After doing extensive research on both “Subclinical Cushings”, as well as treatment options I located the “Cushing’s Support & Research Foundation” website. I elected not to take the ketoconazole since the side effects were extremely toxic and I found through your website two highly recommended hospitals to get another opinion from, one being the Mayo Clinic and the other Columbia Presbyterian Hospital. After going through another bout of tests and CT scans under the care of my third endocrinologist at Columbia Presbyterian, I was referred to a surgeon, at Columbia Presbyterian. I shared with the surgeon at Columbia Presbyterian the previous test results completed by Mt Sinai the “venous sampling”. I questioned the surgeon on the diagnosis and treatment plan presented to me at Mt Sinai which was do nothing and let this progress to full blown Cushing’s or take the Ketoconazole. His response was he felt that the “venous sampling” was not perfected yet, that he would not take those test results in his evaluation of me as a surgical candidate. He concluded that within 93%—97% certainty performing the left adrenalectomy would cure my “Subclinical Cushings”. On April 30, 2013 I had a successful left adrenalectomy. I was discharged the following day and recently have received the best news. As a result of the left adrenalectomy my “Subclinical Cushing” was cured. Follow up test results confirmed with a Dexamthasone test that my body suppressed cortisol secretion 100% and that coritsol was undetectable.
I’m sending the CSRF this letter to share my experience. Obviously your foundation provided me with the tools I needed to find the help I needed. I wanted to share with the foundation and others my experience with the “venous sampling” to diagnosis and provide treatment options to patients with “Subclinical Cushing Syndrome”. My experience as noted above indicates that those test results appear not to be valid in determining excretion of cortisol from the adrenal glands. If I wasn’t diligent in trying to find the right answer I would have potentially progressed to full blown Cushing’s, which would have resulted in devastating effects on my body including, Diabetes, Heart Disease etc. or I would have had the potential serious side affects from the medication Ketoconazole.
I also sent a letter to the endocrinologist at Mt Siani hoping she takes this information into consideration with all her present and future patients and for her to share the information with her staff accordingly before a diagnosis and treatment plan is offered to their patients.
This is my way of helping others find hope when they are told there isn’t any!
Member ID: 132201
Newsletter: Winter, 2013
State: New Jersey