Cushing’s Disease

Cushing’s Syndrome: One Patient’s Perspective

Written by AR Waltner Empowering People with Invisible Chronic Illness (EPIC) Foundation

I’ve been meaning to write this all down for some time, and in truth, I wasn’t sure which words would be best suited to provide support and encouragement to others who are at various stages in their (or their loved one’s) Cushing’s Syndrome journey. I guess I should start by saying that I am sorry you are having to learn about this illness, live with this illness, and ultimately fight against this illness for your health. There is great support and information available to you, and the brave women who work with The EPIC Foundation have quite literally, saved my life.

But that, of course, seems to oversimplify it all.

My name is AR and I’ve been living with Cushing’s Disease for an undetermined amount of time. Perhaps the disease process started when I was a child or perhaps it took hold in late 2010. I’m not sure, my doctors aren’t sure… and there quite possibly will never be an answer. I’ve actively fought for diagnosis and treatment since 2011. As of this writing, I’ve been diagnosed (it took a year of grueling tests), undergone one pituitary surgery (in May 2012), and am currently a stone’s throw away from being officially diagnosed with a recurrence – meaning, I get to go through another round of treatment.

How did it look for me? As a child, I rapidly gained weight starting around the age of 9 or 10. Normal and healthy as a child to morbidly obese by the age of 16 – probably gaining around 160 pounds during that time. I was never tested for anything hormone related, except maybe thyroid. Instead, I was given scary labels like, “compulsive overeater” and an even less helpful diagnosis of, “she eats because she is sad.” I was a horribly moody teenager and suffered from insomnia, cystic acne, and irregular periods. I’d go through episodes where I could not get out of bed. I spent my high school and college years weighing between 225 pounds and 305 pounds.

I’d diet and exercise regularly and throughout those years, I lost 80-100 pounds three separate times. I’d quickly regain the weight and spend a year trying to stop the gain before trying again. I figured there had to be something wrong with my habits – not exercising enough, not eating the right combination of foods, not practicing enough willpower or self control.

By late 2009, I was at my highest pre-Cushing’s weight, 350 pounds. I stumbled upon a program that worked instantly for me and by July of 2010, I was 120 pounds lighter. I was thrilled and felt like my lifestyle had changed for the better. I ate plenty of real foods and spent my days walking miles on the beach and working from home as a nutrition coach. I was finally getting my life together.

The weight loss suddenly slowed down dramatically and I found myself actively fighting to stabilize in between active weight loss periods. I tried everything I knew and worked with several fellow nutrition coaches to tweak my diet. I spent time working on the spiritual and emotional side of the weight loss journey – trying hard not to stress about immediately losing the weight. I worked with a trainer to ensure I wasn’t overtraining or taxing my system in any way. I saw a doctor to test for normal hormone imbalances.

In short, there was nothing else for me to do – I was “doing” everything correctly.

The end of December 2010 brought a really nasty cold/flu/sore throat that simply wouldn’t go away (for many weeks), and then, like a light switch, my body ballooned – 30 pounds in 30 days.

Here begins my journey for answers… a journey that would leave me a total of 180 pounds heavier within 9 months, bedridden, heartbroken, and begging for treatment.

Cushing’s Syndrome is a tricky illness and I can honestly say it has both given and taken away in my life. I started this guide with a little of my story because I wanted to demonstrate that I am not a professional. I’m not a doctor and this article is not meant to be construed as medical advice in any way shape or form. This resource guide is meant to provide you with information from the perspective of a patient (ie: layman’s terms for the win!) who took it upon herself to be as well informed as possible. Together, we are going to look at three big questions: What is Cushing’s Syndrome?, How do I know if I have Cushing’s Syndrome?, and What Can be done about Cushing’s Syndrome?

There have been many along the way who have lit the for path – may this guide shine a bit of light for you as you walk your journey.

WHAT IS CUSHING’S SYNDROME?

You ever heard someone say that stress could make you fat and ruin your health? Cushing’s Syndrome demonstrates this to the extreme. Ever heard of ‘roid rages in body builders hopped up on steroids? Cushing’s Syndrome can demonstrate that to an extreme as well.

Cushing’s Syndrome is a state of hypercortisolism in the body. What this means is that the body OVERPRODUCES (hyper) a hormone called cortisol. To better understand what happens in Cushing’s Syndrome, we need to look at how and why cortisol is produced.

Cortisol is a steroid hormone produced in the adrenal glands. You may have heard of cortisol being called, “the stress hormone” or the “fight or flight hormone.” It is an essential-to-life hormone and in the right doses it helps with blood sugar, metabolism, inflammation, and immune function. When the body is functioning normally, extra cortisol is released in response to stress – the extra cortisol helps to take care of the stressor by diverting valuable resources to the brain and allowing you to “run away from the charging tiger.” After all, one does not really need to worry about digestion or ensuring proper bone formation when there is a tiger chasing after you… you simply need to think and go.

The adrenal glands are part of a triad of glands that doctors like to refer to as the “hypothalamic-pituitary-adrenal axis” or HPA Axis for short. These little glands pack a powerful punch and work together to regulate most functions in the body. The adrenal glands are located on top of the kidneys, and the hypothalamus and pituitary are located near the base of the brain. Let’s take a look at how they function together so we can understand where things go wrong in Cushing’s Syndrome.

When stress occurs in a normal individual, the HPA axis plays a bit of a game of dominos: a signal is sent to the hypothalamus to produce a hormone called “Corticotropin Releasing Hormone” (CRH), which causes the pituitary gland to release “Adrenocorticotropic Hormone” (ACTH), which then tells the adrenal glands, “Help! Make more cortisol stat!” The adrenal glands receive the signal and immediately pump out more cortisol. The cortisol goes throughout the body, does its thing, and then sends feedback to the hypothalamus and pituitary to let them know the job is done. Here’s a basic drawing of what this looks like – there are similar drawings in many medical textbooks that have more scientific information – but this should give you an idea:


When your HPA axis is functioning normally, it is a beautiful thing. In the Cushing’s patient however, something goes wrong at one of the points in the cycle. As we mentioned earlier, Cushing’s Syndrome is generally classified as a state of hypercortisolism in the body – meaning too much cortisol. If only it was as simple as that! Cushing’s can come in several forms. Let’s talk about a few of them now:

First, we need to talk about two different sources of the extra cortisol and answer the question, “Is the cortisol coming from within the body or from medications?”

Because there can be benefits to having a wee bit of extra steroid in the body (to help with inflammation, for example), doctors may prescribe an oral steroid form of cortisol such as prednisone, dexamethasone, or hydrocortisone. When taking oral steroid medication, it is possible to end up with too much cortisol in the body and thus in a state of hypercortisolism. In this case, you would have EXOGENOUS Cushing’s Syndrome, also known as Iatrogenic Cushing’s Syndrome. Usually, a doctor should be able to spot the signs and symptoms of this (and should be watching for it if you are on long term steroid therapy) and work with you to change or stop the medication, which will most likely cause the Cushing’s Syndrome to go away.

When your body turns against you and starts producing excess cortisol on its own, this is called ENDOGENOUS Cushing’s Syndrome. More often than not, this form of Cushing’s is caused by a tumor located somewhere in the body. Doctors typically refer to three different locations for these tumors:

  • Pituitary Gland: A tumor in the pituitary gland is also known as an adenoma and it can be classified as a microadenoma (smaller – less than 1cm) or a macroadenoma (larger than 1cm). For a patient with Cushing’s caused by a pituitary adenoma, it is highly likely that this little tumor is benign (not cancerous), but is producing a high amount of ACTH. More ACTH being released by the pituitary means the adrenal glands get a signal to produce more cortisol. While many people use the terms Cushing’s Disease and Cushing’s Syndrome interchangeably, Cushing’s Disease is the specific term used for Cushing’s Syndrome caused by a pituitary ACTH producing adenoma. Pituitary Cushing’s is usually considered the most common form of Cushing’s.
  • Adrenal Gland:  A tumor on one or more of your adrenal glands can also cause Cushing’s Syndrome. Generally, tumors on the adrenal glands are not ACTH producing and instead simply interfere with normal adrenal gland function and/or produce excess cortisol all by themselves. I don’t have a huge amount of knowledge on adrenal Cushing’s, so head on over to the article about adrenal Cushing’s for more information.
  • Ectopic: Cushing’s caused by an ectopic tumor sounds a bit like a needle in a haystack… Essentially, an ectopic tumor is an ACTH producing tumor located, “somewhere in the body.” Many times these tumors are extremely small and hard to find… but they frequently occur in the lungs and can sometimes be cancerous. Ectopic tumors are thought to be the rarest of Cushing’s tumors.

Head spinning yet? It gets a wee bit more complicated. You see, it may not be enough to know if it is medication induced or tumor induced (and where that tumor might be located) because a Cushing’s tumor may be able to turn itself on and off at its own will. Because of this, we need to look at how often one is in a state of hypercortisolism.

There are some cases of Cushing’s that are “no brainer” type cases for doctors. These patients walk in to the office with all the classic signs and symptoms and have lab results that are immediately and consistently elevated (usually considerably so). Usually, these cases are quicker to diagnose and move to the treatment phase because the case looks like what a doctor would see in their medical textbook. These are cases of Florid Cushing’s Syndrome.

However, there are cases that are not so easy to diagnose because the tumor turns itself on and off causing a range of cortisol levels in the body. A Cyclical Cushing’s Syndrome patient may experience very high highs and then drop to normal or low cortisol levels. Many times, as the body becomes accustomed to the higher levels of cortisol, a “normal” cortisol level will make the body think there is not enough cortisol. Cyclical Cushing’s cases are very difficult for a doctor to diagnose because often many tests are needed over an extended period of time to “catch” the hypercortisolism state. For a Cyclical Cushing’s patient, an excellent endocrinologist is a must.

In addition to Florid and Cyclical Cushing’s syndrome, modern day researchers are starting to study and better understand mild or subclinical Cushing’s Syndrome. In these cases, a patient has the signs and symptoms of Cushing’s but their lab tests look mostly normal or not high enough to be officially diagnosed with Cushing’s. It is my hope that these researchers continue to study the ins and outs of a mild Cushing’s because even mild hypercortisolism can lead to devastating quality of life issues for the patient.

Lastly, we need to talk about Pseudo-Cushing’s Syndrome. In a pseudo-Cushing’s state, a patient may show signs and symptoms of Cushings and even have some elevated lab results, however they do not actually “have” Cushing’s syndrome. Traditionally, cases of pseudo-Cushing’s are attributed to alcoholism, severe depression, and birth control usage, but this definition may change as more information on subclinical Cushing’s becomes available. This is another area I hope is continued to be studied.

As a final note, it’s important understand that Cushing’s Syndrome is classified as a rare disease, affecting a very small portion of the population. As I walk through my journey with Cushing’s, it often feels like the disease is less rare than doctors currently admit (rare disease? rarely diagnosed is more like it!) – but I don’t necessarily fault them for this. In medical schools, doctors are taught that when they hear hoof sounds to think horses instead of zebras. Many endocrinologists assume they will never see a case of Cushing’s in their career, and so if you walk in with signs and symptoms, they may try to attribute them to another illness or blame you for your symptoms (just eat less and move more!). If you run in to resistance when trying to investigate whether you are afflicted with Cushing’s, don’t give up. Try to have a sense of humor and a wee bit of patience with your doctor – they may not know any better. Get educated so you can advocate for yourself, find a support group, and be willing to see an endocrinologist who specializes in hard to diagnose Cushing’s cases.

HOW DO I KNOW IF I HAVE CUSHING’S DISEASE?

The best way to know if you have Cushing’s Disease is to google all your symptoms and pick the disease that sounds the scariest on Web MD and then rush to your doctor’s office and demand the diagnosis. Be sure to act very sick at your appointment so they can see that you aren’t crazy or making it up.

Just kidding!

I first heard about Cushing’s Disease while talking with one of my nutrition coach friends. We were literally at a loss as to the cause of my rapid weight gain and she did the “hail Mary” google search and came across it. It sounded vaguely familiar and my quick google search led me to exclaim, “Cushing’s Disease? Oh Lordy, I don’t want that… isn’t that like cancer in the adrenals?”

Aye. How little I knew back then! If you’ve read to this portion of the guide, you are already head and shoulders above where I was when I first started. One thing I was right about however… I do not want Cushing’s Disease!

When we look at the question of, “How Do I know?” we are basically looking at three different pieces of information: signs and symptoms (these are the things you notice, the things that bring you into the doctor’s office), biochemical evidence (these are the lab tests your doctor orders), and imaging (these are used to find a tumor). Let’s take a deeper look at each one of these:

Signs and Symptoms of Cushing’s Disease

Signs and Symptoms are the physical characteristics you experience that are changes from the norm. This list is not exhaustive, nor is it mandatory for each Cushing’s patient to experience all of these signs and symptoms. I’ve been in a room with 50 other Cushing’s patients and we all look different and experience the disease differently. The “textbook” Cushing’s cases are put there for a reason – they show some of the more extreme cases so that medical students can learn some of the nuances of the illness… but they are not necessarily representative with how every patient will present since each patient is different. Cushing’s affects the whole person. First, we will look at the physical changes to the body, and then we will look at the mental/emotional changes.

Physical Changes to the body:

  • Rapid weight gain, often with no apparent cause: I gained 30 pounds in 30 days and ultimately 180 pounds in 9 months. Some people gain less, some people gain more. Some Cushing’s patients gain 50 lbs and weigh 150 pounds at their highest and some gain 150 and end up at 400 pounds. Where you end up is largely dependent on where you started, how long you are ill, and how the cortisol reacts in your body.
  • Central Obesity: Many Cushing’s patients gain weight primarily in the abdomen/trunk/face areas of the body and while their limbs remain thin. It is common for Cushing’s patients to have a bit of a “pregnant belly” look to them.
  •   Buffalo Hump and Clavicle Fat Pads: When fat accumulates at the base of the neck (between the shoulder blades), this is referred to a buffalo hump. You may notice the buffalo hump being hard and painful at times  Clavicle Fat pads are almost like build in shoulder pads of fat around your collar bone.
  • Moon face/facies: Another area fat accumulates is around the face, causing a rounded appearance. You may also notice your face to have a reddish or ruddy appearance to it. My face gets bright red in the middle of the night when my cortisol levels are high.
  •    Muscle wasting and muscle weakness: Cortisol can eat away at your muscles, causing you to grow weaker, especially in your arms and legs (this is another reason Cushing’s patients tend to have skinnier arms and legs). Doctors may ask you to step up on a chair or squat down low and try to stand back up to check for muscle wasting. Another way this appears for me is a general feeling that my muscles are “goo” and not able to move well.
  • Thin Skin, Easy Bruising, Stretch Marks: A cushing’s patient may notice thinner skin leading to easy bruising or striae/stretch marks. One thing a doctor may do to check for thin skin is to pinch the skin on the back of the hand. My skin got thin mostly around my chest – so I was a bit “off textbook” in that regard. Another consequence to thin skin is striae or stretch marks… and Cushing’s patients seem to be prone to wide and reddish purple stretch marks on the abdomen. My striae are mostly located on my chest, armpit and shoulders… and since I cycle, they change colors from white to grey to red to purple – it all depends on the day.
  • Osteoporosis/Weak Bones: Excess cortisol puts Cushing’s patients at risk for thinning bones, leading to an increased risk of fracture or breaks. Depending on how my cortisol swings, I may also experience bone pain or joint pain.
  •    Too much hair in the wrong places (hirsutism), too little hair in the right places (balding): With hirsutism, a female patient may experience more male-pattern hair growth on the face (mustache/beard). At the same time, patients may notice thinning of their hair or balding in some spots.
  •   Insomnia and/or daytime fatigue: Often a Cushing’s patient will have a flipped diurnal rhythm meaning that their cortisol levels are high at night leading to insomnia, but low during the day, leading to daytime fatigue. I’ve heard the insomnia described as “wired but tired” and think that is a good description of how I feel when my cortisol levels are high at night.
  •   Co-Morbidities: Cushing’s can cause hypertension, heart disease, diabetes, insulin resistance, suppressed immune system, menstrual problems, impotence in men, and infertility, to name a few.
Mental and emotional changes
  • Brain Fog: Concentration can be difficult for Cushing’s patients because of debilitating brain fog. Sometimes this manifests as an inability to complete a thought, sometimes it manifests as an inability to concentrate on a task at hand for any length of time.
  • Memory Problems: Very similar and perhaps related to the brain fog is changes to the patient’s ability to remember things.
  • Anxiety: Normal activities may cause extreme anxiety. For me, I no longer wanted to leave the house and spent many weeks not wanting to leave my bedroom. The anxiety was like nothing else I had experienced before and it wasn’t rational.
  • Extreme Mood Swings and Irritability: I like to think of this as the “roid rage” symptom because I can often feel rage and anger building up in me. A Cushing’s patient may experience extreme mood swings or irritability, sometimes for no apparent reason.
  • Depression: Clinical depression is often another symptom of Cushing’s. A cyclical Cushing’s patient may see mood swings from high highs (rage and irritability) down to very low lows (deep depression). Be on the lookout because some doctors may choose to explain this as bipolar disorder. They may not be wrong, but it is worth looking at if you experience the swings in mood.
  • Changes in libido: It may be hard for a Cushing’s patient to “be in the mood.”

Sounds like a lot of fun, right? Cushing’s is known as the “ugly” disease because of the toll it can take on a person’s physical body… but beyond that, I think it is important to notice that Cushing’s seems to affect just about every system in the body. Many days, it feels like my body has completely turned against me and is in self-destruct mode. Remember, this list is not exhaustive – there may be other symptoms not listed here… these are just the ones I’ve seen and heard of most commonly in the support groups.

When you prepare to speak with your doctor about your signs and symptoms, it will be very helpful if you can bring pictures to show physical changes. In addition, I’d recommend starting a symptom journal, especially if you or your doctor suspect your cortisol levels may be cycling, as your day to day life may look different.

Biochemical Evidence of Cushing’s Disease

Once your doctor has established that you have signs and symptoms consistent with Cushing’s Syndrome, they will begin the process of investigating the biochemical evidence to support a diagnosis and will send you to the lab for testing. Different doctors have different testing protocols and may order some or all of these tests. A single positive test is not usually enough to confirm a Cushing’s diagnosis, and a single negative test is not usually enough to rule out Cushing’s either. Many Cushing’s patients require many multiples of tests to confirm a diagnosis. Remember, this is not medical advice, so please talk to your doctor about which test(s) are most appropriate for you. Here’s a list of some of the more common Cushing’s tests.

Tests to determine hypercortisolism:

  • 24 Hour Urinary Free Cortisol (UFC): The 24 hour UFC is currently considered the gold standard test for Cushing’s Syndrome. During this test, you will collect all of your urine during a 24 hour period and then return it to the lab for processing. Sound intimidating? The lab should give you a little plastic hat that makes collecting the urine easier – you simply put it under the toilet seat and then pour the urine into the jug. Your doctor is going to use this test to get an average of the amount of cortisol that is freely running through your body during a 24 hour period of time. Florid Cushing’s cases tend to have UFC numbers four times the normal level. A general endocrinologist may say that a negative 24 hour UFC rules out Cushing’s Syndrome, however I do know many Cushing’s patients (including myself) that never get a high UFC.
  •   17-Hydroxycorticosteroid (17-OHCS): This test is run on a 24 hour urine sample (can be run on the same sample as a 24 hour UFC) and measures a metabolite of cortisol. I like to think of it as the “ashes” of the cortisol. The difference between the UFC and the 17-OHCS is that the UFC measures the cortisol that is still free and roaming around, whereas the 17-OHCS measures the amount of cortisol that got used up. There is a much more complicated scientific definition, but this is how I think of it. At one point in time, the 17-OHCS was the gold standard test for Cushing’s, but has largely been phasesd out in favor of the 24 hour UFC. In my personal experience, I never got a high 24 hour UFC, but every single one of my 17-OHCS tests came back elevated.
  • Serum Cortisol: This is a simple blood test and is usually drawn in the morning (between 8am and 10am) or at midnight. In this test, your doctor is looking for the level of cortisol in your blood at a given time. Having your blood drawn at midnight gives the doctor insight in to your diurnal rhythm to see if your cortisol levels are high when they should be non-existent or low. Your doctor may want this test done like a regular blood draw or they may want you to have a PICC line inserted (it’s kinda like a beefier IV) to avoid having the prick of the needle potentially affect the outcome of the test. I’ve had it done both ways.
  •   Plasma ACTH: This is blood test that is usually drawn at the same time as a serum cortisol test. Your doctor will use this test to determine if you have an excess amount of ACTH in your system at a given time. This test is also used to help your doctor determine if your Cushing’s Syndrome is caused by a pituitary or ectopic source (generally high levels of ACTH) or an adrenal source (generally low levels of ACTH). Because ACTH is found in the plasma of your blood, make sure your lab tech puts the tube on ice immediately after drawing, otherwise it can break down and your doctor may not get the most accurate result. One thing to note about ACTH is that is released in pulses or waves – so it’s possible to be at the end of one of those pulses and get a normal result.
  •   Salivary Cortisol: A salivary cortisol test measures the amount of cortisol in your saliva. To take this test, you will likely chew on a cotton ball and then spit the cotton into a test tube. Salivary Cortisol levels should mimic the levels of cortisol in your blood. For this reason, a salivary cortisol done at midnight may be easier for a patient than going in to the lab for a midnight blood draw. A quick note: be sure to get a salivary cortisol test from a reputable endocrine lab, not from a mail order kit online. While you can find “adrenal stress” tests online that do not require a doctor’s order (and measure cortisol in your saliva)… they are not going to be very helpful in determining a Cushing’s diagnosis.

Specialty Tests to Confirm A Diagnosis

Once your doctor has established a pattern of suspicious or high cortisol levels, they may order additional tests to help confirm the diagnosis and/or provide them with the information necessary to treat the Cushing’s.

    •   Dexamethasone Suppression Test: There are several versions of this test (low dose, high dose, etc), but the theory behind the test is similar – if a patient takes an oral steroid, it should provide feedback to the pituitary that there is enough cortisol in the body (remember our drawing from earlier?), and therefore halt or suppress the production of cortisol. In a patient with Cushing’s, however, the production of cortisol would not be suppressed because the tumor has done a hostile takeover of the glands and doesn’t care that there is steroid being administered orally. A popular version of the test is the low-dose dexamethasone test, where you take a low dose of dexamethasone in the evening and then the next morning have your serum cortisol levels checked. The test can also be done with multiple doses over multiple days and use a urine test instead of a blood draw to determine cortisol levels. Doctors generally consider the Dex Suppression test a confirmation test for Cushing’s as there are rarely false positives with it. However, there are many patients, especially cyclical Cushing’s patients who suppress normally.
    • Dex-CRH Test: This is a version of the dexamethasone suppression test in which you take some doses of dexamethasone and then have a baseline blood draw taken the next morning. After the baseline has been drawn, CRH (remember our drawing – its the stuff that tells the pituitary to produce ACTH) is injected via IV and the lab tech takes a blood sample every 15 minutes for a few hours so your doctor can monitor how your levels change after the stimulation.
    • Inferior Petrosal Sinus Sampling (IPSS): This test isn’t so much a diagnostic test – its is most commonly used to help a doctor determine which side of the pituitary gland the adenoma tumor is located OR to determine if the excess ACTH is caused by a pituitary source or an ectopic source. During this procedure, a catheter is run through your veins until it reaches the veins where the pituitary gland drains and ACTH levels are checked from each side of the gland.

Imaging

Once your doctor has compiled enough biochemical evidence of hypercortisolism, they will likely order an imaging study to determine how to proceed with treatment. When I was first testing for Cushing’s, I didn’t understand why it took so long for my doctor to order an MRI. Simply put, an imaging study in and of itself, is not proof of Cushing’s Syndrome. A visible adenoma on an MRI may add to the evidence for Cushing’s Syndrome, especially in a more complicated cyclical case, but in and of itself, it isn’t a diagnostic tool.

As for which type of images your doctor will likely order, if a pituitary source is suspected, your doctor will likely order an MRI of your pituitary gland. There are different strength MRI machines – a 3T MRI tends to be a bit stronger and will give your doctor a much clearer picture of what is going on in your head (tumor wise, at least). You will likely have a contrast solution inserted via IV during the MRI as it helps the tumor “light up” so it is more easily seen.

If an adrenal source is suspected, you will likely have a CT scan done of your adrenal glands.

For an ectopic source, your doctor may order any number of scans to try to locate the tumor – this is not really my area of expertise.

Final Notes on Diagnosis

Cushing’s Syndrome is incredibly complex and requires diligence on the part of both the patient and the doctor. I assumed, wrongly, that the journey to diagnosis should be relatively straightforward and simple, after all, as is the case in many other illnesses, a single test should yield a result that can move one forward to treatment. In many cases, a Cushing’s diagnosis is not simple. The testing can seem never ending and frustrating – especially if you are helplessly watching yourself get sicker. Hang in there – don’t give up. Find a doctor who is curious about getting to the bottom of what is going on with you. Lastly, trust your gut instinct – if something doesn’t feel right – seek the help of an expert who understands the complexity and subtle nuances of Cushing’s.