Wednesday, April 18, 2018

PRO TIPS: Testing cortisol saliva at midnight + marathon testing

Endocrinologists order several tests to see if your body's cortisol production is abnormal. These tests include:

  1. 8 am cortisol serum/ blood and ACTH plasma/ blood
  2. 24-hour urinary free cortisol (UFC)
  3. dexamethasone suppression test
  4. midnight cortisol serum/ blood
  5. midnight cortisol saliva
I'll be talking about midnight cortisol saliva and 24-hour UFC today.

Doctors instruct patients to take cortisol saliva tests at 11 pm. Some patients get high results at this time, while others don't. For the patients getting normal results, this is confusing and devastating. As a result, doctors often tell the patients that they do not have Cushing's. Patients feel tears well up in their eyes, leave doctor's office, and burst into tears, thinking they will never find out what is killing them slowly every day.
Pro tip #1: Do the saliva cortisol tests between 12:10 and 12:15 am several nights in a row. In the fall of 2017, several patients were frustrated that their midnight saliva cortisol testing came back normal repeatedly. Their doctors told them to test at 11 pm. However, I suggested that patients test between 12:10 and 12:15 am because cortisol spikes in Cushing's patients at midnight when cortisol is zero in normal people allowing them to go to sleep. This is how I did my tests when I was testing for Cushing's (fyi--I was diagnosed with Cushing's four times in six years). When these patients followed my pro tip, they happily reported back that they finally go high cortisol saliva results. They have since gone on to have surgery for Cushing's.

Be sure to follow the instructions and abstain from drinking anything or brushing your teeth 30 minutes prior to the test. Quest Diagnostics' instructions are pretty standard, so be sure to review them prior to completing these tests. ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@

Pro tip #2: Test urine and saliva on the same days, several days in a row.

Doctors don't tell us this. They say, just test when you can. I don't recommend this. The burden of proof is on the patient to produce abnormal test results. Any normal results lead a doctor to rule out Cushing's and stop all testing of cortisol. This is a HUGE obstacle that many Cushies who have cyclical/ intermittent/ episodic cortisol production. Doctors learned in medical schools that:
  1. Cushing's is so rare, and they will never see a case of Cushing's in their entire career;
  2. all patients with Cushing's are florid, meaning tests conducted at any time will always show high cortisol levels in saliva, blood, and urine.
Testing urinary free cortisol (UFC) and saliva cortisol on the same days on consecutive days is essential for patients, as it shows doctors that:
  • midnight saliva cortisol can be high even when 24 hr UFCs are normal, or
  • midnight saliva cortisol are normal even when 24-hour UFCs can be high
  • your body's cortisol production varies widely in the same week.
    This is absolutely critical for the Cushies with cyclical/ intermittent/ periodic/ non-florid cortisol production. 

1) Bring your doctor's lab requisition/ orders to local lab.
2) Lab tech will review lab orders and give you the number of orange jugs you need.
3) Ask for a "urine hat." This allows us to urinate comfortably into a receptor, then pour the collected urine into the orange jug.

So, how does this work?
  1. Create large notes and tape them to the toilet seat cover in all of your bathrooms. This will ensure you don't forget that you are testing.
  2. Choose one toilet to be your testing spot.
  3. Place the "urine hat" from the lab in that toilet under the seat.
  4. Use a black marker to label all of your UFC jugs with your name, date of birth, and date of test, and test number. (#1-5 if you are doing 5 days of testing)
  5. Void/ urinate in the toilet at 8 am* to start the 24-hour UFC test.
    (You do not want that urine, as it was produced by the body in the hours before your test is starting.)
  6. Catch all urine in your urine hat. Immediately pour this urine into the orange container every time you urinate for the next 23 hours and 59 minutes.
  7. Keep your urine container cold. Refrigeration is best.
    (Keep your urine jug in a plastic or paper bag. You can place down a cloth towel or paper towels on the shelf in the refrigerator. Urine collections that are not kept cold will grow bacteria, and the lab will throw out your test.)
  8. At 8 am,* urinate into the orange container once last time to catch all the urine your body produce in that 24 hour period.
  9. You just completed your first 24-hour UFC. YAY!
  10. Start another 24-hour UFC.
    Don't worry about voiding before the test. You did that already. It's in the previous urine collection jug.
  11. Go back to step 6 if you are doing multiple tests.
    (Essentially, don't let another drop of urine hit the toilet for five days or however many days you are testing. I've completed consecutive 9 UFCs in the past.)
* You do not have to start your urine test at 8 am. You can start at 9 am, 10:23 am, whenever. Just make sure that you end the test and urinate in the jug one last time at the same time the next day. This will ensure you captured urine for 24 hours.

* Take your completed UFC test to the lab daily. Labs are notorious for mishandling or losing multiple tests when submitted at the same time. Don't ask me why. Just know that they will lose those tests--all your hard work for days. Save yourself the horror: make a trip to the lab and give them one test at a time. Yes, this is time consuming, and yes, the lab should do better. However, if they lose your UFC test, you will be the only one crying. Plus, you will have to repeat the test.

I hope all of your results are high, and you get to diagnosis quickly!

MOXIE MELISSA P. S. Need more moxie in your day? Go find me on Facebook by clicking Fight Cushing's with Moxie.