Hey there
everybody!
Today one of
my Facebook friends posted a link to a post on the CSRF website about Cyclical
Cushing’s syndrome:
You have to wade through the
usual Doc speak, but it’s worth the effort.
To summarize, Dr. A. Brew Atkinson is part of a group who noticed that
some patients were cyclical way back in the 1950s and has been studying the
phenomena ever since. What they
concluded is that a significant number of Cushies, upwards of one third in one
sample of Cushing’s patients were cyclical, making it more common than doctors
think.
They also noted
the difficulty diagnosing for several reason, one being the need to do
extensive testing, which is expensive.
Another reason is that cyclical patients do not respond to some tests,
such as the dexamethasone test, in the expected ways. That is something those of us with the
disease know all too well! So they
suggested those patients with Cushing’s features yet who don’t have the
expected test results should be considered for more extensive testing. They also suggested certain testing, such as
AM long-range urine or long-range serum cortisol testing with a suggested 28
consecutive day period which will catch most of the known cycles they’ve
documented.
As noted,
that is kind of expensive and don’t be surprised if insurance companies balk at
covering the cost. In my case we just
happened to catch both peaks and troughs in the standard testing done, so I
know I’m a cyclical Cushie. What I don’t
know is what pattern I fit because no testing occurred to establish my pattern.
If you didn’t
already read the article please read the article if you are trying to find out
if you or a loved one has Cyclical Cushing’s or if it was suggested to you. And if you or your loved one may have it please
persist in getting the right testing done.
