Initial Cushing’s Work Up

Many tests must be run to rule out the diagnosis of Cushing's, yet we hear from many who suspect Cushing's that their primary care doctors or endocrinologists REFUSE to order these tests because they say Cushing's is so rare that it is impossible to have it. Most just say we have PCOS and give us anti-depressants and metformin.

RIDICULOUS.

Yet, what doctors don't tell us is that Cushing's must be ruled out to make the diagnosis of PCOS. In order to rule Cushing's out, doctors must run tests to gauge the status of all the hormones of the hypothalamus-pituitary-adrenal axis, succinctly called the HPA axis. 

Doctors will try to run thyroid tests and tell you that you are fine. No no no. They just order ALL the hormones produced by or related to the pituitary and adrenal glands.

So, what can you do to ensure the doctor orders the tests and you don't waste your time and money on a doc that won't do anything to help you?

1) Do your homework.
Prepare for your doctor's appointment. Read the tips I wrote 10 years ago about how to prepare for your doctor visit.
Tips to steady your feet

2. Make sure your symptom list is comprehensive. Do not start off with weight gain as your main symptom. Docs will take that and talk about diet and exercise. You will never get to talk again. That doc will go on and on and you will feel defeated. Peak their curiosity by relaying this myriad of strange and seemingly unrelated symptoms. I listed the symptoms in a specific order to maximize impact. 

List of Cushing's symptoms collected by a Cushie

3. Be prepared to be blown off.
That doctor, not matter how good he/she is supposed to be, will act like it is impossible for you to have Cushing's. It happens all the time, to nearly all of us, so don't be alarmed. Knowing this in advanced should make you get serious about the task at hand. That doctor is the gatekeeper who will decide what happens to you next. Please understand that it is your job to make sure you get what you need out of that appointment, namely lab orders or imaging orders. 

4. Are you sick or not?
Sit up straight. Be confident. You know your body better than anyone, and you know something is wrong. Don't let doctor interrupt you and dismiss you. Your life depends on you standing up for yourself. Now is not the time to diminish your symptoms and downplay its effects. If you find your doctor doing that for you,  you must stand up for yourself and get the help you came for.

5. Psyche yourself up and refuse to leave without being properly evaluated for Cushing's.

When the doctor begins to tell you how Cushing's is so rare, remind him/her that doctors are taught in medical school to look for the one diagnosis to explain all the symptoms, not have several scattered diagnoses. Also, tell them about the probability of having Cushing's, and how if all the test results, symptoms, and imaging results suggest Cushing's, it is likely Cushing's. If it walks like a Cushie and cries like a Cushie, it's a Cushie. 

Gambling on a Cushing's diagnosis: What are the Odds?

6. Be knowledgeable and medically aware.
I will list all the labs that will give you the big picture about your hormone health. I know what all of these tests are, and you need to know them, too.  Spend some time on this super helpful site, Lab Tests Online. Search for the test in the search box. Then scroll down to common questions. My favorite section is "What do my test results mean?" This section is awesome because it tells us what both high results and low results mean. I have been using this site for over a decade, and it has been the cornerstone to my medical knowledge.

Print the following list and say to the doctor: 

"I've done extensive reading in the medical journals. The results of these tests I'm suggesting will give us the most comprehensive look at how my HPA axis is functioning." If the doctor says, S/he can order it but won't know how to interpret it, thank them and say, You will understand what the tests means. After all, you have been researching that, too! (right?)

*Tests to check overall health and HPA axis

• Comprehensive metabolic panel (CMP)

• Complete Blood Count (CBC)

• Hemoglobin a1c

• Ferritin

• Vitamin D

• Vitamin B12

*Pituitary and adrenal hormones

• cortisol serum, 8 am

• ACTH plasma, 8 am (drawn into chilled tube, spun down immediately) 

• aldosterone

• renin (drawn into chilled tube, spun down immediately)

• DHEA-S

• IGF-1 (for GH)

• FSH

• LH

• prolactin

• estradiol

• progesterone

• testosterone, total + bio available

• TSH

• free T-3

• free T-4

• reverse T-3

*Cortisol testing

• low dose dexamethasone suppression test

• consecutive days doing urine collection and saliva test on the same day*

      • 24-hr UFC x 4
      • midnight saliva cortisol x 4  (Docs suggest 11 pm but we know 12:15 am works better)
      • midnight cortisol serums x 10, completed at the lab at the local hospital. 

         — this order for blood tests must be on the doctor's prescription pad,
              with patient's name, date of birth, test name and frequency, and diagnosis code.

EXAMPLE:      

Moxie Melissa dob: 11/1/1980

                    

12 am + 12:30 am cortisol serum x 10

E24.9 Cushing's syndrome, unspecified

The way the MRI machine "slices" through the
pituitary at 2-3 millimeter slices.
Source: Oregon Health Science University,
School of Medicine, Diagnostic Radiology

                 

*Imaging (when the time comes, not part of initial workup)

• CT scan of adrenals

• MRI of the pituitary, dynamic protocol
   — Images are taken. Then IV contrast is given while images are taken. This is the dynamic part of the protocol. These images are critical for radiologist and neurosurgeon to see how the contrast dye is absorbed. Normal tissue will absorb the contrast uniformly, but tumors/adenomas will not absorb the contrast.   
Learn more about dynamic protocol of the pituitary.

7. Persistance is key. So is a smile.
Have a "Get It Done," "Won't Take No for an Answer", but "Catch more Flies with Honey than Vinegar" attitude. Persistance is key. So is a smile. 

8. It's not you. It's them.
Remember that some doctors are jerks and decide if they will help you. In the end, it could be them and not you. If you realize you will not get anywhere after concerted efforts, tell the doctor that you are disappointed in this service, and you won't be coming back. Or, like many Cushies have been reduced to, hold back your emotions for as long as you can and burst into tears in your car. It happens, and it isn't your fault.  Read this link about some doctors being bad and you will realize, this is an uphill battle even if we didn't have Cushing's. It is just a dire situation once we finally find the name to what ails us after so many years. 

Condescending doctors and how to deal with them

9. Graphics for diagnosis
I've included this graphic only as a sample, not as the gospel. Why? Because this and the many graphics found in Google images only apply to patients who are FLORID, meaning cortisol results will all be high. These processes do no apply to CYCLICAL patients like me, who despite having normal UFCs and suppressed on the low dose dexamethasone suppression test, STILL DO HAVE CUSHING'S.

Source: American Association of Endocrine Surgeons

My very own CSI: Cyclical Cushing's

*~*~*~*~*~*~*~*~*~*~*

I hope this helps prepare you for your visit to the endocrinologist. Despite Cushing's being an endocrine disorder, these doctors are convinced before you even talk that you don't have it. They can tell just by looking at you! Understand the wall that stands before you, and figure out a way to get to your goal: a proper Cushing's work up.

Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!
x

        

PRO TIPS: Testing cortisol saliva at midnight + marathon testing

APRIL IS CUSHING'S AWARENESS MONTH TODAY'S POST DISCUSSES THE NUANCES OF TESTING AND CATCHING HIGHS.

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.

MIDNIGHT CORTISOL SALIVA TESTING

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. 

24-HOUR URINARY FREE CORTISOL TESTING

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.