Update.

Hello my dear friends and readers:

I know it’s been awhile since my last post.  Several things have happened.  Because of continued back problems I went to my orthopedic doctor and it turns out my spinal deterioration has increased.  I now have three spinal joints in deterioration instead of just the one.  Those would be the last to lumbar joints and the first sacral.  This is not that unusual in patients with Cushing’s.  Both the leaching of calcium from the bones and the strain from the weight combine to cause the problems, which are pretty painful.  When we add the swings of my cortisol into Addison’s territory part of the time and I get a double whammy.

I also have another problem which I began to feel when I took my airplane trip back in April.  That would be bursitis in the hips.  Because of the Bursitis it is difficult to sit most of the time and it is also painful to rise from a sitting or lying position.  Given I weigh 366 pounds is it any wonder I developed inflammation of the bursas in that area?

Since then I’ve been looking into more research on Cushing’s, its causes and effects.  I’ve also looked into research suggesting the incidence of Cushing’s is much wider than the medical community realizes.  Some of the things I’ve learned will be presented in other posts.  However, I still do have to put up with the new problems and adapt, which is taking some time.

So keep an eye out for what’s ahead.

Cyclical Cushing’s Syndrome

Hey there everybody!

Today one of my Facebook friends posted a link to a post on the CSRF website about Cyclical Cushing’s syndrome:

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.