Dear Dr. Roach: I was told that I have Cushing鈥檚 disease, which has caused diabetes, high blood pressure, hunger, weight gain and muscle loss. I was never sick before this, and I did not have any of those things. I am told I have a tumour on my right adrenal gland.
I have been to numerous doctors, but most have not been too helpful. They seem to try to treat the diabetes or blood pressure, but nothing else. They seem not to be familiar with Cushing鈥檚. I tell them which medication works, but they still give me new medication. I have an endocrinologist and am scheduled to meet a urologist.
I have managed to go to physical therapy, exercise every day and lose over 50 pounds. I am not happy with the advice I鈥檓 getting. I was told that surgery to remove the tumour will fix everything, but that I would need to take steroids for either a short term or for life. My body is already making too much cortisol. I have 50 more pounds to lose. I work hard to keep the weight down. I feel like a science experiment 鈥� within a week, I have had three different medications. I could not tell which was causing the side-effects and making me dehydrated. I am not sure surgery is right for me, because they said it can be done laparoscopically, but if they can鈥檛 do it that way, they will have to cut me all the way across, which may take a long time to heal and may get infected. 聽
Do you know what tests will confirm the diagnosis? Would surgery fix all these problems? I had the 24-hour urine test, the saliva test and blood tests. I want to know if it may be something else instead of Cushing鈥檚. I鈥檓 not on anything for the high cortisol levels.
A.L.
It sounds very much like you have Cushing鈥檚 syndrome, which is caused by excess cortisone, a hormone that has many effects.
It is called Cushing's disease when the underlying cause is a pituitary tumour that causes the adrenal gland to make excess cortisone. (Cortisone and cortisol are different names for the same chemical, also called a glucocorticoid.) Cushing鈥檚 syndrome also may be caused by an adenoma (benign tumour) of the adrenal gland, which sounds like the case in you.
The high amounts of cortisone produced by the adrenal tumour cause high blood pressure, glucose intolerance or frank diabetes, increased hunger, obesity 鈥� especially of the abdomen (large bellies and skinny limbs are classic), dark-coloured striae (stretch marks), easy bruising, a reddish face and often weakness of arm and leg muscles. When full-blown, the syndrome is easy to spot, but many people don't have all the characteristics, especially early in the course of the disease.
Your endocrinologist is the expert in diagnosis and management, and has done most of the tests. I am somewhat surprised that you haven鈥檛 yet seen a surgeon to have the tumour removed. Once it is removed, the body quickly starts to return to normal, although losing the weight can be a problem for many.
I have seen cases in my training where, despite many tests, the diagnosis was still uncertain.
The endocrinologist orders a test where the blood is sampled from both adrenal veins (which contain the blood that leaves the adrenal glands on top of the kidneys).
If the adrenal vein on the side of the tumour has much more cortisone than the opposite side, the diagnosis is certain.
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