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Suffering From Cushing's Disease, CT Scan Showed No Tumors. Taking Medication.
Question: i have been suffering from cushing's disease from past ten years, six years ago the abdominal CT scan revealed no tumors, no abnormality in ovaries, four years ago all types of MRI done on my pituitary revealed no tumor. I continue to suffer from this disease. I have been kept on medication have five to six tablets daily.
Hello XXXXXXX
Thank you for your query.
I will try to provide some information. But as you know, Cushings disease sometimes can be very difficult to pin down. It can be caused by pituitary tumors, adrenal gland tumors, and it can also be caused by tumors elsewhere in the body that produce chemicals that stimulate the adrenal glands. Most, but not all, of these tumors are benign (non-cancerous).
Cushings can be due to :
1. a pituitary or non-pituitary tumor that produces the hormone that stimulates the adrenals (ACTH - Adrenocorticotrophic hormone ), or
2. an adrenal source of excess cortisol, without over stimulation by ACTH.
At this point in your disease course, your doctors should be able to tell you which you have. The remainder of the evaluation has everything to do with which type you have. If it is ACTH-independent (2. above), then the first CT of your adrenals might not have been done properly (it must be thin section CT). Perhaps an updated imaging study of the adrenals would find the cortisol-producing tumor in the adrenals. If it is ACTH-dependent (1. above), and your pituitary was properly imaged (you mention it was imaged with MRI, which is good), then the doctors should look for an ectopic source of ACTH. This involves a dexamethosone supression test, a CRH stimulation test or both.
As you can tell, this is a very complicated process and many primary care physicians do not understand it very well. I hope you are under the care of a good endocrinologist. If you are, then he or she will know far more than I about all of this. However, this is the basic information.
I hope I have helped you understand. Please let me know if any of this requires further clarification.
Best regards,
Dr. Schwartz
Thank you for your query.
I will try to provide some information. But as you know, Cushings disease sometimes can be very difficult to pin down. It can be caused by pituitary tumors, adrenal gland tumors, and it can also be caused by tumors elsewhere in the body that produce chemicals that stimulate the adrenal glands. Most, but not all, of these tumors are benign (non-cancerous).
Cushings can be due to :
1. a pituitary or non-pituitary tumor that produces the hormone that stimulates the adrenals (ACTH - Adrenocorticotrophic hormone ), or
2. an adrenal source of excess cortisol, without over stimulation by ACTH.
At this point in your disease course, your doctors should be able to tell you which you have. The remainder of the evaluation has everything to do with which type you have. If it is ACTH-independent (2. above), then the first CT of your adrenals might not have been done properly (it must be thin section CT). Perhaps an updated imaging study of the adrenals would find the cortisol-producing tumor in the adrenals. If it is ACTH-dependent (1. above), and your pituitary was properly imaged (you mention it was imaged with MRI, which is good), then the doctors should look for an ectopic source of ACTH. This involves a dexamethosone supression test, a CRH stimulation test or both.
As you can tell, this is a very complicated process and many primary care physicians do not understand it very well. I hope you are under the care of a good endocrinologist. If you are, then he or she will know far more than I about all of this. However, this is the basic information.
I hope I have helped you understand. Please let me know if any of this requires further clarification.
Best regards,
Dr. Schwartz
Above answer was peer-reviewed by :
Dr. Raju A.T
I have ACTH dependent Cushing's disease, through medication ( ketoconezole twice a day) I have been able to control both my cortisol and ACTH levels (even though it is close to the high range), but I continue to have hirsuitism. Could you tell me for how long can I have Ketoconezole? Do I have psuedo cushing's syndrome or is it an undetected ectopic source of ACTH? What other tests should I carry out?
Hello again XXXXXXX
Thanks for writing back.
I am not an expert in treating Cushing's disease, so I can not tell you how long treatment is expected. However, your treating physician should be able to provide that information.
Pseudo Cushing's syndrome is when patients have symptoms of Cushing's but not true Cushings. Such patient's are often depressed, obese or have polycystic ovarian syndrome, or rearely, alcoholism. However the distinction is not always so clear, as these people can also have elevated cortisol levels. This is part of why the diagnosis and management of Cushings is complicated and requires a good endocrinologist.
Please accept my answer if you have no more queries.
Best regards,
Dr. Schwartz
Thanks for writing back.
I am not an expert in treating Cushing's disease, so I can not tell you how long treatment is expected. However, your treating physician should be able to provide that information.
Pseudo Cushing's syndrome is when patients have symptoms of Cushing's but not true Cushings. Such patient's are often depressed, obese or have polycystic ovarian syndrome, or rearely, alcoholism. However the distinction is not always so clear, as these people can also have elevated cortisol levels. This is part of why the diagnosis and management of Cushings is complicated and requires a good endocrinologist.
Please accept my answer if you have no more queries.
Best regards,
Dr. Schwartz
Note: For more information on hormonal imbalance symptoms or unmanaged diabetes with other comorbid conditions, get back to us & Consult with an Endocrinologist. Click here to book an appointment.
Above answer was peer-reviewed by :
Dr. Yogesh D
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