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.

Day 4: Around the Cushie World in 30 days: Ashley's Pituitary Surgery

Today, I bring to you a profile of my friend Ashley R. She does not blog, but she should.  Ashley and I have been writing each for many many months online.  I have used everything in my arsenal of knowledge to guide her, and she has been an excellent student.  I take my role as Cushie advisor very seriously, and Ashley took my advice and made her own journey shorter as a result. I am very proud of her diligence and persistence, despite being very ill.

I finally met Ashley R. in Los Angeles this past January 2012.  When she saw our shared doctor, Dr. Friedman, I drove her to the appointment.  

Beyond what I have taught her, Ashley R. has been a wonderful teacher to me.  She has become one of many Cushing's patients for whom I have deep admiration.  Most importantly, Ashley R. and I have had many discussions, including how to enhance our outlook in order to create our new destiny without Cushing's and despite Cushing's. We are both committed to moving on to powerful and healthy lives that we have only because of the Cushing's.  For this and many other reasons, I am proud to call Ashley R. my friend.  I find her so compelling that I asked her permission to share her story here for you.  

Ashley R. is having surgery in Houston at the MD Anderson Cancer Center on Friday, May 4 at 8 am.  Please keep her in your thoughts and prayers.

**************

"You have a brain tumor? What the heck is Cushing's Disease?"

by Ashley R. on Thursday, May 3, 2012 at 4:20am ·

I've spent much of the last year being quiet about the changes in my body and mind. Yes, there was chronic illness and debilitating/disfiguring symptoms, but I never really wanted to take ownership of what was going on - it always seemed like an invader to my body. I certainly didn't want to worry anyone unnecessarily and I definitely didn't want to jeopardize any professional contacts by littering my Facebook profile with too much medical information. For the most part, I tried to keep as normal of a schedule as possible.

... but I knew things were changed. I knew that I couldn't keep up appearances for long... so I (as gracefully as I could), withdrew from everything but what it took to survive. If you were a part of my life that didn't make the cut, you likely saw my involvement dwindle. I promise, I wasn't trying to hide. I was trying to survive. I am fighting so I can come back to full involvement. I promise, I'm almost there.

So here I am, about a year and a half out from the initial start of this mess, and I am ready to put pen to paper and explain what happened. Before I start, I need to be laser clear on a few things:

1. I am so grateful for the healing that this journey has brought to my life. This process flipped my world upside down... and in the process, forced me to confront things that I had avoided. 

2. I am confident that this is already cured and I am already healed ... my body is not broken, and this was no mistake. I don't write this for sympathy -- I've already grieved for what I thought I had lost. I write this story today from a place of gratitude... gratitude for my friends and family who have supported me through this and gratitude that I was trusted with this story. My prayer is that I say what needs to be said and that there be no mistaking that Jesus has been in control of the outcome from the beginning. I am at peace with what happened. 

Understanding that, let's start at the present.

Today, I lay in bed in a Houston hotel awaiting my turn to see one of the top neurosurgeons in the country. Tomorrow, I will undergo brain surgery to remove a tumor from my pituitary gland. Today, I pray, is the last day Cushing's Disease is allowed to be in my body.

What is Cushing's Disease?

Ever heard of the stress hormone, cortisol? Cushing's Disease is simply (ha!) an overproduction of cortisol in the body, usually caused by a tumor that overproduces the "give us more cortisol" hormone (ACTH).

Picture for a moment a time in your life when you experienced EXTREME STRESS. Perhaps you went through a trauma of some kind...perhaps you had a point in time where you had too much "critical" stuff to do and not enough time. Picture how your body felt - your muscles twitching between super strong and super goo, your heart beating fast, your head going from clear to mush... your appetite dropping only to hours later leave you ravenous... your body switching to survival mode with only one objective: run away from the tiger before it eats you.

Got it?

Now picture never being able to shut that off.

That, is the only way I can give you a glimpse of what this disease process looks like.

Take a few moments and watch this video - it explains the technical side of things quite well. It is worth the 6 minutes.

How did it happen to me?

I'm not really sure... but as I looked over the patterns in my life, it is entirely possible this is something I've been cycling with since I was a young girl. We started to get suspicious January 2011 when an overwhelming amount of fatigue took over my body and I gained about 30 pounds in 30 days - while dieting, walking 3 miles a day, and regularly practicing EFT to work through the emotional side of things. Something was wrong, something was very, very wrong.

As I scrambled for answers (surely, I had to be doing something wrong), a friend mentioned Cushing's. I scoffed, "now why would I want that? That's not fun."

A few weeks later, Samuel picked me up in San Luis Obispo and drove me to Seattle to be seen and have initial tests run. When the tests came back showing that we were on the right path, the choice was made immediately to move me back to Seattle permanently.

I didn't struggle through doctor after doctor who told me I was crazy. I didn't have the energy for that... I went straight to one of the leading experts on Cushing's Disease. For 8 months, I tested - blood draws, 24 hour urine collections, and saliva tests... Over and over again. Trip after trip to the lab. It was an exhausting and humiliating experience. Scratch that... it was an exhausting and humbling experience.

I tried to stop the process. I tried hard to fight it. When I stopped fighting it, there was a bit of a lull to the process. It made no sense. Throw everything you know about your body out the window. I was gaining weight eating a clean paleo diet and could get the weight gain to stop if I ate crap junk food. It made no sense. None. It still doesn't.

By September, most of the changes in my body had already occurred. I had gained about 150 pounds in a little over 7 months. My waist circumference doubled. My hair fell out. Reddish purple lines striped my arms, shoulders, and chest. Pads of fat seemed to grow both at the back of my neck AND on top of my collarbone. My face COMPLETELY changed. My moods altered and I fought against rage in my body. My skin turned both bright red and orange. Anxiety and paranoia were present daily. 

While I've avoided posting pictures over the last year, I feel like none of these words can quite show the change like this photo can. This my friends, is what the diagnostic process cost me physically. 

end of December 2010   -------------------------     April 2012

Dramatic, eh?  It was only 16 months.

I've tried (sometimes unsuccessfully) to rationally think through these changes. I've tried to keep perspective - that most of these things I felt were caused by the hormones NOT by real threats. In short: I did everything I could to not BLAME this disease process for any of my shortcomings. There were definitely limitations, but I refuse to give in completely and let this disease process take more than it needed to.

We found the tumor in October via MRI. You'd think, with an ever growing mountain of evidence supporting a diagnosis AND a visible tumor, that the doctors would be clamoring to take that puppy out, right? That just wasn't the case.

Midway through November 2011, I learned that my doctor was retiring his practice and moving in to drug research. I never managed an official diagnosis out of him -- the day he left his practice, he had spent 8 months being "highly suspicious" but never committal. Is this a doctor thing or a man thing? Who knows.

my buffalo hump

In January 2012, I flew to California to see another Cushing's specialist. There were several of you who prayed for and helped fund this trip. I am eternally grateful for your generosity.

When I met one of the doctors the first thing he said to me was, "Why hasn't anyone helped you before now? Why did they let you get this sick?" I do not have an answer to that question.

I spent most of February and the early part of March doing one final blitz of testing. In truth, the doctor likely had enough to make the final call, but needed tests that he had ordered to come back positive to do the whole CYA thing. 

Mid March 2012, almost a year to the day of my first appointment to discuss Cushing's Disease, I had a diagnosis: Cyclical Pituitary Cushing's Disease. 

Over the year and a half of progressively getting sicker, I was asked many times why I fought so hard for a particular diagnosis. After all, most people are traumatized when they hear they have a tumor and a life threatening illness. I, on the other hand was relieved.

I have a short answer to this: I needed 100% written proof, verified by a professional, that I did not intentionally do this to myself. I needed that proof for me... and for anyone else that would raise an eyebrow to me.

Sound strange? Sound selfish? Sound a bit ridiculous? Probably.

You see, I grew up an overweight child. I was blamed, from the age of...oh...8 or 9... for my weight problems. I've had so many labels put on me by doctors that refused to look for something other than a sad child who liked chocolate. I needed the diagnosis because I spent decades hating those responsible for my physical and emotional well being. I couldn't put my finger on it... but I never bought what they were saying.

The Cushing's diagnosis gave me the courage to forgive.

The process to get the diagnosis gave me the ability to appreciate and love my body in a way I can't quite explain - though I am going to try later this week. 

Anyway, here's what's next:

I'll have drive by brain surgery through my nose on Friday... then we pray that it is a cure. The surgery is really easy guys - I promise I am going to be ok... I am at one of the best facilities in the world and have one of the top surgeons in the world. He knows this disease inside and out and is going to take good care of me. Yes, please pray for me and for him for the actual surgery... but also keep my family in your prayers... as they are the ones who have to anxiously await the good news. Dad, Kelly, and Sam are here with me... and my sister is back up in WA (worrying no doubt).

Once I return home, I get a new fight on my hands: the "drying out" process (allowing the cortisol soaked tissues to get rid of the excess stored cortisol) and the "waking up" process (where my body starts producing hormones on its own again). They say the cortisol withdrawal is akin to a heroin addict going through withdrawals. Please pray for me. Please come check on me. This process scares me more than anything else.

Then, we rebuild from a place of gratitude. We learn from the process... and we move forward.

I am overwhelmed by the support, prayers, and generosity of those around me. I am overwhelmed at the humility my husband has shown through the whole process (I love you!). I am overwhelmed by the support of my bosses and coworkers - I've never felt more cared about by any other group of women. I am overwhelmed that women I didn't know came to visit me when I first moved back to Seattle and was lonely because no one was coming to see me. I am overwhelmed by the knowledge I've had the privilege of acquiring. I'm overwhelmed by the courage of the women who have gone before me in this fight - the women who took their time to navigate this process and support me every step of the way. I am overwhelmed that you took the time to read this... and mostly, I am overwhelmed that Jesus has been there through it all, going ahead of me, carrying me, and providing what I needed to come out on the other side of this in a much better place than when I went in.

Thank you so much for everything you've done and for the love you've shown to me.

All my love,

Ashley R.

I'M JUST GONNA SAY IT

I did midnight testing for Cushing's on December 8 and 9, 2009.

My midnight cortisol serum results were high. Both days.

Normal level is 0. Mine were 5.93 and 6.1. WAY TOO HIGH.

This is a bad sign that my Cushing's may be reoccurring.

HIGH. Just like before surgery.
HIGH. My hopes for my family's return to normalcy.
HIGH. My anxiety over how long it will take for me to be the person, wife and mother that I want to be, the one that I know I am inside.

I am working on setting up a testing schedule with my new endocrinologist in my new town. I'm reconstructing the story of my life in lab results, MRI reports, and emails to doctors. This stack is as big as a ream of paper. That's 500 sheets! More than three years of my life are caught up in those papers. How much more time will Cushing's take from me?

I am sure the testing protocol will include continued cortisol testing, adrenal scans, lung scans, perhaps even another IPSS. So many more tubes of blood, urine samples, lab trips, doctor visits, questions and half answers. I'm not looking forward to it.

Onward.
~Melissa

Test Results, Schmest Schresults

Well, I finally got my greedy little hands on my test results. January 6, 2010. My tests were run December 7-10, 2009.

I can't organize my thoughts well enough to post a complete summary, so I'll let it all percolate in my cranium and see if something worthwhile falls out.

Check back soon!
Moxie Melissa

FAQ U: MELISSA'S MAIL BAG

Sue left me a message on my favorite Tips to Get Diagnosed Quickly post. She asks such good questions that I decided to answer them here. Oh, and the babe was sleeping at midnight, so I had time =).

Thanks for the encouragement to be proactive. I have a twenty year old daughter that had a MRI for headaches three months ago. They found an enlarged pituitary gland. Now, three months later it is a recognizable pituitary adenoma 5mm x5mm x8mm. Her doctor keeps reassuring me that it is so tiny that it is probably not the cause of her headaches and that it is no problem that we can't get in to the USC specialist for seven more weeks. I recognize many signs of Cushing's including weight gain in the last six months, new vertical purple stretch marks on her abdomen, complaints of bruises, acne, boils and even an insect bite infected with staph, Also she has constant vaginal yeast infections, a sinus infection diagnosed by the MRI, apathy, and memory problems. My daughter has Asperger Syndrome and she rarely expresses her emotional or physical feelings, so this is somewhat like pieces of a puzzle coming together. Do you or anyone else have advice on waiting to see the so called "best Endocrinologist" as we were referred to by our doc? Do all the endocrinologists mentioned on the site require recommendations from primaries? My PPO does not. Again, thanks for your encouragement to be proactive - when I speak to my daughter's doctor I feel she is trying to assure me it is nothing to worry about. I want to be fully informed and do what is best for my daughter. Thank you for sharing all of your experience so willingly, I am sure you are helping many.

Sue, I'm so glad the words I wrote 18 months ago are helping people still today. I'm sorry your daughter may have Cushing's. No one wants to hear that. This is a big deal. Don't let them minimize it. Be an informed, persistent, and tenacious advocate for your daughter. She is sick and needs your help. Those symptoms sound like Cushing's symptoms. Worry, ok, but pack enough information into your brain that you can nudge them along your way.

One of my favorite posts about the urgency to get treated comes from the former founder of the Pituitary Network Association. I call it, Cardiac Paddles to the Chest .

That pituitary tumor is pretty large. Mine was a microadenoma at only 3 millimeters. A macroadenoma is larger than 10 mm or 1 cm. Both sizes can cause headaches for some patients. Plus, it seems that the pituitary tumors resected during surgery end up larger than the MRI shows.

Do not wait 7 weeks, unless you try all these things:

1. ASK DOCTOR STAFF TO HELP YOU GET AN APPOINTMENT WITH THE SPECIALIST. Ask your doc to call best Endo doc directly for the appt. Staff could try first. Tell them you need their help. Fake apologize for being a worry-wart mom. Go in person, and offer to wait in waiting room until they do it =). Ask that doc 1 fax all clinic notes, labs, and radiology/MRI reports to doc 2 in advance of appt.

2. FIND AN EXPERT. Check these websites for helpful lists of doctors familiar with the treatment of Cushing's. Is there another specialist nearby? Don't put all of your eggs in one doctor basket. Work the system.

* Cushing's Help & Support. On its message boards, we Cushies discuss our favorites under Doctors and Hospitals.

* Pituitary Network Association

* Cushing's Support & Research Foundation

Make an appointment with another doctor if you can get in before 7 wks. Keep other recommended "best endo" appointment. You will feel better for not waiting, and you will arm yourself with more info with a 2nd opinion. Be sure to call your PPO insurance directly to see if doc 2 is in network. Most do not require a referral. Be sure to ask the office staff.

3. TESTING FOR CUSHING'S. Can you tell me what testing your daughter has done for Cushing's? What came back abnormal or high? If no testing besides the MRI was done, ask your referring doc to order some for her while you wait to see the "best endo." Then that doctor can review the results at the first appointment, saving valuable time and giving you a feeling of forward momentum.

Request these tests to diagnose Cushing's
For a good overall assessment of Cushing’s, be sure you leave your doctor's office with:

1) copies of all of your lab results to date;

2) four lab orders for each of the following tests, to test as you see fit, according to your symptoms:

* 24 hour urinary free cortisol (UFCs): normal range is 0-50. diagnostic is over 50.

* midnight salivary cortisol (from your spit): normal range is 0-0.17. diagnostic is 5 and over.

* midnight cortisol serum(from blood draw): normal range is near 0 at this time. suggestive is over 5. diagnostic is 7.5 and over.

* cortisol serum tests (from blood draw). Lab samples must be taken at 8 am and/or 4 pm. If they are not taken at this time, the results do not count.

* random ACTH plasma (from blood draw). Many Cushing's patients see very high levels at 4 am, don't know why. Normal normal range is 5-27. diagnostic is over 48, over 100 really turns the docs on! These lab samples must be handled very carefully to get an accurate reading. I will post a link to the proper handling when I can find one.

In addition, there are many tests that you can ask a doctor to order for an overall hormone assessment. Since the pituitary is the master gland, controlling the release of all hormones in the body, a tumor can cause the malfunction of other hormones produced in other organs.

These tests usually include:

* thyroid panel (TSH, T4, T3)
* pituitary panel (LH, FSH, prolactin, IGF-1 as measured through the liver from growth hormone in the pituitary)
* hormone panel (estradiol, testerosterone, DHEA, etc)
* vitamin B12, vitamin D, ferritin — many Cushies have very low levels of these three. If ferritin is low, it explains hair loss.

Oregon Health and Science Center in Portland, OR shares these suggestions when working with your doctors.

Others may suggest that you ask for other tests. I didn’t feel comfortable asking for specialized tests before I got the basics ones first. I felt that if I had the first battery of tests done and something came back abnormal, then I would ask for others. This approach worked well for me.

4. GET SMARTER. Just like in chess and billiards, winners have several moves in mind before making their current move. Adopt the same concept. Use the wait time to research Cushing's and the next steps. For example, do they recommend an IPSS, which confirms the pituitary as the source of ACTH excess? The test is invasive but proves the tumor needs to come out and it is not just an incidentaloma (real word!). Many patients I know get this test. It is important info for the endo and neurosurgeon, but for you, your daughter, and your peace of mind. My IPSS results were 78 times the normal limit (3 times normal is diagnostic), and this test convinced my neurosurgeon to move quickly.


If I can help, please contact me again. I am trying to make more time for this blog and the people who find me--out in cyberspace. I take my role as advocate seriously.

Peace, joy, and hope to you and your family.
--moxie melissa

CUSHING'S: For the new folks

Hi everyone. I am working on a few blog posts that I hope I can post soon. For today, I'd like to spend a minute or two helping some new folks figure out what to do next. I know I've got a lot of information on this site. Sometimes, you need the basics. Here are the basics. I hope it helps.

HIGH UFCS
A high urinary free cortisol test, or UFC, is the "gold" standard of Cushing's tests. That means, if your UFC value is high, it is likely you have Cushing's. Doctors of all disciplines don't know much about Cushing's, but they seem to remember one fact about Cushing's: you have to have a high UFC to have it.

Now, if you do not have a high UFC, you could still have Cushing's. I took over 15 UFC tests and I never had an abnormal UFC. Never. I was told by eight endocrinologists that I did not have Cushing's. In fact, many patients will never have a high UFC, but many are later diagnosed with cyclical Cushing's. They--and I--still have Cushing's.

The important thing to remember is that hypercortisolism, or the overproduction of cortisol, can be measured in a few different tests. No one tests excludes the diagnosis of Cushing's. However, abnormal test after abnormal tests, in conjuction with multiple symptoms, does point to Cushing's.

midnight cortisol saliva
8 am cortisol serum blood test
4 pm cortisol serum blood test
midnight cortisol serum blood test
24-hour urine free cortisol test (UFC)

High ACTH is indicative of hypercortisolism, since ACTH is the pituitary hormone that triggers the adrenals to produce cortisol.

8 am ACTH plasma blood test
4 pm ACTH plasma blood test
midnight ACTH plasma blood test

Get a good understanding of Cushing's, ACTH, and cortisol, according to links on Labtestsonline.org. Be sure to click on all five tabs above each entry:

ACTH (adrenocorticotropic hormone)

cortisol

Cushing's 1 Cushing's 2 Cushing's 3

From labtestsonline.org:

Is there anything else I should know?

How is it used?
ACTH levels in the blood are measured to help detect, diagnose, and monitor conditions associated with excessive or deficient cortisol in the body. These conditions include:
* Cushing’s disease: excess cortisol that is due to an ACTH-producing tumor in the pituitary gland (usually a benign tumor)
* Cushing's syndrome: refers to the symptoms and signs associated with excess exposure to cortisol. In addition to Cushing’s disease, Cushing’s syndrome may be due to an adrenal tumor, adrenal hyperplasia, the use of steroid medications, or due to an ACTH-producing tumor that is located outside the pituitary (such as in the lungs).
* Addison's disease, primary adrenal insufficiency: decreased cortisol production due to adrenal gland damage
* Secondary adrenal insufficiency: decreased cortisol production because of pituitary dysfunction
* Hypotituitarism: pituitary dysfunction or damage that leads to decreased (or no) hormone production by the pituitary – including ACTH production

Measuring both ACTH and cortisol can help to differentiate among some of these conditions. Because the level of ACTH normally changes in the opposite direction to the level of cortisol, your doctor can learn much by identifying an imbalance in this relationship and the direction in which the imbalance occurs. The table below indicates the common patterns of ACTH and cortisol seen with different diseases involving the adrenal and pituitary glands.

Cushing's disease (pituitary tumor making ACTH)
High Cortisol
High ACTH

Adrenal tumor
High Cortisol
Low ACTH

"Ectopic" ACTH (ACTH made by a tumor outside the pituitary, usually in the lung
High Cortisol
High ACTH

Addison's disease (adrenal damage)
Low Cortisol
High ACTH

Hypopituitarism
Low Cortisol
Low ACTH


OTHER HORMONES
The pituitary is the master gland. It controls every hormone produced in the body. The presence of a pituitary tumor will press on cells it shouldn't press on up there, causing the malfunction of other pituitary hormones. Therefore, if you are to test if the pituitary is affected by a benign tumor or microadenoma, it is important to test other hormone levels.

Oregon Health and Science University's Pituitary Unit: The Basic Pituitary Disease / Pituitary Tumor Work-up and A Clinician's Guide to the Work-up of Pituitary Disorders

Here are a few other sites that discuss the testing process. You will find that many repeat the same info. That is good. This repetition gives you the sense that there is an agreed protocal on how to diagnose this disease. Again, getting a high UFC is most of the battle. Once you have a high UFC test in your pocket, you can pretty much get doctors to order the other tests without much hassle, or so I've been told.

Cushing's Support & Research Foundation's Fact Sheet and Cushing's Support & Research Foundation's Diagnostic Testing for Cushing's Syndrome

Pituitary Network Association's Cushing's page.

This is a little more complicated reading from a medical journal, but again, I think you can work your way through it: The Diagnosis of
Cushing’s Syndrome: An Endocrine Society Clinical Practice Guideline

PNA Disorders Section - Introduction to the Pituitary Gland
Categories:

Our thanks to Daniel Kelly, M.D. (Director, Neuro-Endocrine Tumor Center - John Wayne Cancer Institute at Saint’s John Health Center, Santa Monica, CA) and Pejman Cohan, M.D. (Director, Specialized Endocrine Care Center - Beverly Hills, CA) for providing the following disorder information.

Introduction To The Pituitary Gland

The pituitary is a small, bean-shaped gland located below the brain in the skull base, in an area called the pituitary fossa or sella turcica. The gland is regulated by a region of the brain called the hypothalamus and they are connected by a thin delicate vascular connection called the pituitary stalk or infundibulum. Weighing less than one gram and measuring a centimeter in width, the pituitary gland is often called the "master gland" since it controls the secretion of the body’s hormones. These substances when released by the pituitary into the blood stream have a dramatic and broad range of effects on growth and development, sexuality and reproductive function, metabolism, the response to stress and overall quality of life. The pituitary gland is thus at the anatomical and functional crossroads of the brain, mind and body.

Structurally, the pituitary gland is divided into a larger anterior region (adenohypophysis) and a smaller posterior region (neurohypophysis). Directly above the pituitary gland are the crossing fibers of the optic nerves called the optic chiasm as well as the optic nerves as they project to the eyes. On each side of the pituitary gland is the cavernous sinus which is a venous channel through which runs the large carotid arteries that carry blood to the brain, and important nerves that control eye movements and facial sensation. Because of the close proximity of the pituitary gland to these major intracranial nerves and blood vessels, as well as the vital hormonal control the pituitary gland provides, disorders of the pituitary can cause a wide spectrum of symptoms, both hormonal and neurological.

Listed below are the specific hormones produced by the pituitary:

Growth Hormone (GH): This is the principal hormone that, among many other functions, regulates body and brain development, bone maturation, metabolism and is essential for healthy muscles.

Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): These hormones control the production of sex hormones (estrogen and testosterone) as well as sperm and egg maturation and release.

Prolactin (PRL): This hormone stimulates secretion of breast milk.

Thyroid Stimulating Hormone (TSH): This hormone stimulates the thyroid gland to release thyroid hormones. Thyroid hormones control basal metabolic rate and play an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.

Adrenocorticotropic Hormone (ACTH): This hormone triggers the adrenal glands (located above the kidneys) to release the hormone cortisol which in turn, regulates carbohydrate, fat, and protein metabolism and is essential in the stress response.

Vasopressin - Also called anti-diuretic hormone (ADH): This hormone promotes water to be reabsorbed by the kidneys and is thus essential in water and electrolyte balance.

In disease states, the pituitary gland may under- or over-produce hormones. Decreased or absent hormone production from the pituitary gland is called hypopituitarism (Pituitary Failure). The symptoms and treatments for pituitary failure are listed below:

Hormone
Deficient Symptoms
Treatment

Growth Hormone
Children: Growth delay
Adults: Decreased muscle mass, increased body fat, elevated cholesterol, low bone density (osteoporosis), impaired psychological well-being, poor quality of life Recombinant Human Growth Hormone- Given once daily as an injection under the skin

LH / FSH
Decreased libido, erectile dysfunction, irregular or absent menses, decreased body hair, decreased muscle strength, hot flashes, mood changes
Men: Testosterone- Given as either topical gel or patch or injections
Women: Estrogen + Progesterone-Given as either topical patch or pills

ACTH
Poor appetite, nausea, weakness, vomiting, low blood sugar, low blood pressure, dizziness, body aches Hydrocortisone or Prednisone-Given as daily pills

TSH
Fatigue, weakness, cold intolerance, dry skin, constipation, heavy/painful menses, weight gain, memory loss, mood disturbance
Levothyroxine – Given as daily pills (some examples include Synthroid or Levoxyl or Levothroid or Armour Thyroid)

Prolactin
Inability to lactate
No treatment available

Vasopressin (ADH)
Increased thirst and frequent urination
DDAVP- Given either as daily pills or nasal spray

Pituitary tumors (also called pituitary adenomas) can result in hormonal overproduction causing serious endocrine disturbances such as acromegaly (excess GH), Cushing’s disease (excess ACTH) or prolactinoma (excess prolactin). Other pituitary adenomas are non-functional or "endocrine-inactive," meaning that they do not produce excess hormones. Instead, as these tumors enlarge, they can cause compression of the normal pituitary gland leading to decreased or absent hormone production (hypopituitarism or pituitary failure), visual loss from optic chiasm or optic nerve compression and headaches. Pituitary failure may also result from bleeding into a pituitary tumor, pituitary or intracranial surgery, radiation therapy to the pituitary or head trauma. Other tumors that arise near the pituitary gland which can also impact pituitary hormonal function include Rathke’s cleft cysts, craniopharyngiomas, meningiomas, chordomas, gliomas and epidermoid cysts.

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I hope this helps.
Cushie Melissa