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I have what Dr. Stratakis at NIH describes as an "ugly little" 2 cm tumor on my right adrenal that he believes is functional. It was discovered 3 years ago after an episode of pancreatitis and has not grown significantly since then. I understood Dr. Stratakis to say that my adrenals are producing 4 to 5 times the normal amount of cortisol (or "something that looks like cortisol"); yet I do not exhibit any marked symptoms of Cushing's syndrome. I think I am something of a puzzle to them (NIH).
I discovered NIH after first consulting two other Endocrinologists. The first one wanted to remove the tumor and adrenal gland immediately. He referred me to an Urologist who was very anxious to remove my adrenal gland "immediately" by standard incision. He said he knew of no doctors in the Boston area that were doing laparoscopic adrenalectomies! Subsequent to my bout with pancreatitis, my gall bladder was removed laparoscopically so I was well aware of the procedure and the quick recovery compared to an open operation. Skeptical of this Urologist's advice, I did some research and wrote letters to doctors at the Lahey Clinic, Massachusetts General Hospital and Tufts New England Medical center. ALL responded, said that a laporascopic procedure was the preferred method for adrenalectomy and offered to examine me.
Given the enthusiastic, response to my letters I sought out another Endcrinologist at Brigham and Women's in Boston. I first saw him last February. He was not so quick to recommend surgery although he felt that I would eventually develop symptoms and need surgery. I was to see him again this past summer to note any changes in my condition. In the meantime, on the internet, I stumbled across a clinical research protocol being conducted at the National Institute of Health in Bethesda, Maryland. After contacting them and forwarding my medical records to them, they invited me to Maryland to take part in their study. My doctor at Brigham and Women's was ambivalent about the value of their study to me, but did not discourage me from going. After reading the study protocol and talking to Dr. Constantine Stratakis, the principal investigator, I finally decided to go. From August 10 to August 21 I participated in their study, which included all kinds of tests that would never have been performed if they had to be paid for by my health insurance. I think the most interesting test results revolve around the two dexamethasone tests administered to me. In both cases my cortisol, "paradoxically", went up considerably, not down! I have had two dexamethasone tests (four if you count the high and low dose variations) in the past two years and have told the doctors that they really mess up my sleep pattern for about three weeks afterward. They seem to dismiss this reaction. I wish they would give me a reason for my reaction or admit they don't know. Currently my samples are being evaluated at the Mayo clinic using a different test procedure (assay) than NIH.
I really do not know what to do. I lost my job two years ago, went back to school full time for six months and still have not been able to find employment in my profession of information technology. Doctors have repeatedly asked me if life has been normal. I have not been living what I would have considered a normal life since losing my job and do not know for sure what normal is anymore. It is very easy for me to forget about all these test results that say there is something very wrong with me when, outside of some sleeplessness and anxiety, which I attribute more to my unemployment than anything else, I am not exhibiting any symptoms of Cushing's syndrome/disease. I do not want to submit to surgery if it is not necessary. Once the adrenalectomy is done, they can't put it back!
All of the doctors advise that I have the adenoma removed if only "for peace of mind" to quote one of the doctors. They say that although it is very unlikely that my adenoma is malignant, it does not respond to tests as expected and that I should not take the chance of leaving it alone. If it is malignant, they say, it could, without warning, suddenly become fatally aggressive.
If there is a message I would impart to others it is that the first doctor one sees may not be genuinely interested in your case, or have the knowledge to treat your condition, that you must advocate for yourself, question everything and go with professional advice that makes the most sense to you. Finally, I remain very impressed with the NIH, facility and staff, and will most likely go back there this winter for an adrenalectomy. Perhaps people with Cushing's syndrome AND the symptoms (I do not have) may not be able to relate to me, but if there is anyone out there in this situation, I would greatly appreciate hearing from you. I would also like to hear from others as to what life is like with only one adrenal gland.
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