Monday, April 23, 2012

Day 23 of Cushing's Awareness: Not always textbook

An extreme textbook image of the striae that is usually
 indicative of Cushing's.
One of the biggest things I cannot stress enough with this disease is that you do not have to be textbook in order to have this disease.  One of the biggest reasons I was told for years that I couldn't possibly have Cushing's was because my striae (stretch marks) were not wide enough, nor dark enough in color.  Textbook would say that in order to have Cushing's you usually have deep red or purple striae, this is not always true.  I have always had fairly thin ones and they sometimes were a light silver to light pink color, but late at night when my cortisol levels would increase they would turn a bright red color.  Of course every time I was at the doctor's office I was low so they were never able to witness the color changes that I was able to see late at night.  

These striae can be all over your body.  On the breasts, abdomen, shoulders, buttocks, back, thighs, legs and on your lower belly area near your privates.  It's not bad enough that Cushing's makes you feel like crap, but it also terrorizes the appearance of our body as well.

Another big one is the 24 hour urine free cortisol tests.  It's considered the gold standard test for Cushing's, but if someone has episodic or cyclical it may be very hard to catch a high.  Once in a while you may get lucky and catch a high one, but more often than not it is very hard to catch with cyclical.  The logic being is that for the majority of those who cycle we have extremely high levels of cortisol late at night when our numbers should be bottomed out, but during the morning and day our levels would bottom out.  So, in essence our 24 hour collection could still look normal because we are still catching a low and a high which ends up averaging out the numbers. However we need to prove that our diurnal rhythm is flipped which is something that is very common in cyclical Cushing's.  One of the reasons I chose to go to Dr. Friedman is because he has testing protocols in place to help catch those late night highs for those of us that are hard to diagnose.  He allows us to do a 10 hour urine collection from 10 P.M. until 8 A.M. and he then uses the average of the cortisol and creatnine ratio to determine if we were high during the night.  He also tests using midnight blood draws if someone has a hard time catching a high with urine which measures free cortisol versus serum cortisol .  It's nice to have options when you are dealing with the less understood side of Cushing's.

There are many symptoms that aren't usually listed in textbooks as a sign of Cushing's, but when you put all the pieces of the puzzle together they tell a story that can point to Cushing's.  I have had an elevated white blood cell count for at least the past 13 years.  I started noticing a pattern when I went in to have carpal tunnel surgeries and also my knee surgeries.  They were afraid to proceed in fear that I was fighting off an infection, but I informed them that this was normal for me.  Excess steroids in the body will cause your white blood cell count to be elevated.  Also, a lot of people with Cushing's have Vitamin D levels that are extremely low or completely bottomed out.  There are just so many different symptoms, but like I said before you have to put all the pieces of the puzzle together and then it all starts to fit.  Just remember to keep fighting and always do your research.  If I had listened to all the previous doctor's I would still be sitting here wondering what happened to me, but instead I took charge of my life and educated myself the best I could so that I could fight this disease head on.  


  1. This is an AWESOME post and so very true!!!!! Hugs...

  2. Hi,

    This post has been invaluable. I have to see my Dr tomorrow. I've been trying for 2 years to get him to do some extensive testing.

    I know he is going to say my stretch marks aren't wide/dark enough but I now have your post to take with me.

    I think I am cyclical as I've had one high, one normal, one slightly elevated and one low!

    Guess what, my white blood count was low when last tested!

    I really hope that you are on your way to recovery.

    Thank you for thinking of other people by publishing this.

    1. Oops. I meant my white blood count was high!!! Silly me.