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How Rare is Cushing's

Guest Erin G.

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Guest Rose Marie

The Journal of Clinical Endocrinology & Metabolism Vol. 86, No. 1 117-123

Copyright ? 2001 by The Endocrine Society




Original Studies


Incidence and Late Prognosis of Cushing?s Syndrome: A Population-Based Study1

J. Lindholm, S. Juul, J. O. L. J?rgensen, J. Astrup, P. Bjerre, U. Feldt-Rasmussen, C. Hagen, J. J?rgensen, M. Kosteljanetz, L. ?. Kristensen, P. Laurberg, K. Schmidt and J. Weeke

Department of Medicine, Holstebro Hospital (J.L.), 7500 Holstebro; Department of Epidemiology and Social Medicine, Aarhus University (S.J.), and Departments of Medicine and Endocrinology (J.O.L.J., J.W.) and Neurosurgery (J.A.), Aarhus University Hospital, 8000 Aarhus; Departments of Neurosurgery (P.B.) and Endocrinology (C.H.), Odense University Hospital, 5000 Odense; Departments of Endocrinology and Neurosurgery (M.K.), Copenhagen University Hospital (U.F.R.), 2100 Copenhagen; Departments of Neurosurgery (J.J.) and Endocrinology (P.L.), Aalborg Hospital, 9000 Aalborg; Department of Medicine and Endocrinology, Herlev University Hospital (L.?.K.), 2730 Herlev; and Department of Neurosurgery, Glostrup University Hospital (K.S.), 2600 Glostrup, Denmark


Address all correspondence and requests for reprints to: Dr. J. Lindholm, Department of Medicine, Holstebro Hospital, 7500 Holstebro, Denmark. E-mail: j.lindholm@forum.dk.


The main purpose was to assess the incidence and late outcome of Cushing?s syndrome, particularly in Cushing?s disease. Information for all patients diagnosed with Cushing?s syndrome during an 11-yr period in Denmark was retrieved. The incidence was 1.2?1.7/million?yr (Cushing?s disease), 0.6/million?yr (adrenal adenoma) and 0.2/million?yr (adrenal carcinoma). Other types of Cushing?s syndrome were rare. In 139 patients with nonmalignant disease, 11.1% had died during follow-up (median, 8.1 yr; range, 3.1?14.0), yielding a standard mortality ratio (SMR) of 3.68 [95% confidence interval (CI), 2.34?5.33]. The SMR was partly attributable to an increased mortality within the first year after diagnosis. Eight patients died before treatment could be undertaken. The prognosis in patients with malignant disease was very poor.


Patients in whom more than 5 yr had elapsed since initial surgery were studied separately, including a questionnaire on their perceived quality of health. In 45 patients with Cushing?s disease who had been cured through transsphenoidal neurosurgery, only 1 had died (SMR, 0.31; CI, 0.01?1.72) compared with 6 of 20 patients with persistent hypercortisolism after initial neurosurgery (SMR, 5.06; CI, 1.86?11.0). In patients with adrenal adenoma, SMR was 3.95 (CI, 0.81?11.5). The perceived quality of health was significantly impaired only in patients with Cushing?s disease and appeared independent of disease control or presence of hypopituitarism. It is concluded that 1) Cushing?s syndrome is rare and is associated with increased mortality, in patients with no concurrent malignancy also; 2) the excess mortality was mainly observed during the first year of disease; and 3) the impaired quality of health in long-term survivors of Cushing?s disease is not fully explained.


The incidence listed from a paper published from the NIH has Cushings Disease at 2-4 new cases per million per year. I wish they'd get their facts straight. I read on the net that pituitary cushings was 15 cases per million per year today! Acromegaly is 3-4 new cases per million per year and pituitary Cushings is rarer than acromegaly?!


"About 30% of pituitary adenomas are lactotroph (prolactin-producing) adenomas. Non-functioning tumors, tumors that do not produce hormones, are nearly as common and account for about 25% of all pituitary adenomas. Somatotroph (growth hormone-producing) adenomas account for 15% to 20% of pituitary adenomas. Corticotroph (ACTH-producing) adenomas represent about 10% to 15% of pituitary adenomas. Gonadotroph adenomas (which produce FSH and/or LH) and thyrotroph adenomas (which produce thyroid-stimulating hormone) each account for a small percentage of pituitary adenomas. Null cell adenomas account for 15 to 20% of pituitary adenomas."



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Guest Erin G.



Thanks for all that info!! ?I hope they get their facts straight about Cushing's. ?In my opinion, I think Cushing's is more common then they think it is. I see many people who look Cushie on the street. ?


Thanks again RM!!!


Erin :cool:

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Thanks Rose Marie, very interesting.I believe that cushings is much more common than many of us are led to believe.As I am still very new to this site I am amazed at how many new cases have arrived on these boards since my first post  and how many more there may be if everyone was as fortunate as we are in having access to the internet.




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  • 4 weeks later...
Guest jsjbird

I think that most of us would question the accuracy of the findings because we know how hard it is to get dignosed. because it is so rare the doctors don't even bother to check for it in many, many cases untill it is unavoidable to do so. My guess is that for every one of us who has been treated there are many more who are not even being concidered as a possible canidate. That is really sad.

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  • Member of the 1000 Post Club

Thanks RM!  Cushing's is not rare at all I feel.  Dr. just don't get it.  They are told while going through training that is is rare.  So they shut down and never think of it again.  My GP confrimed this the other day.

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  • 3 months later...
Guest bullterrier
Cushing's is not rare at all I feel. ?Dr. just don't get it. ?They are told while going through training that is is rare. ?So they shut down and never think of it again. ?My GP confrimed this the other day.

I 2nd this. My GP told me the same thing.

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