Category — Cushing's Diagnosis

Do you have symptoms of Cushing’s syndrome and feel like you’ve reached a dead end with your doctor because you don’t know what tests to ask for? Unless you’re lucky enough to be working with a doctor who’s familiar with recognizing the symptoms associated with Cushing’s and has had experience diagnosing Cushing’s, your doctor may or may not pursue the all tests necessary to confirm or deny a diagnosis of Cushing’s syndrome.

More often than not, testing for Cushing’s isn’t an open and shut case. It usually takes a combination of tests, with some of them being repeated more than once because levels can vary depending on the time of day or where a patient is in their cycle. Plus, not every patient will test positive on every single test. Everyone’s body is different and individual normal levels will vary. Some patients will present with off the charts levels of cortisol and it’s an obvious red flag, while others will present with the high end of normal to slightly elevated and both patients can be equally as sick. So if Cushing’s is suspected, it’s important to not let one single test or one negative test result close the case. If your doctor refuses to continue testing after only one test or a single negative test result, do yourself a favor and find a doctor who will. It’s your doctor’s job to help you get to the root of what’s making you sick. You can find a list of patient recommended doctors who specialized in diagnosing and treating Cushing’s syndrome here.

The most common test doctors will start with to screen for Cushing’s is to administer a 24-hour urine collection for urinary free cortisol excretion. There are some drawbacks with the test though. A large percentage of people with Cushing’s will have elevated levels of urine free cortisol, but some Cushing’s patients don’t test high and will actually have normal levels of urine free cortisol.¹ So it’s important to not use the 24-hour urine collection as the only determining factor to screen for Cushing’s.

Another widely used test for screening for Cushing’s is the low-dose dexamethasone suppression test. A synthetic steroid is administered that is supposed to suppress cortisol production to very low levels. For a majority of patients with Cushing’s, cortisol levels won’t drop. But there’s a small percentage of patients with mild Cushing’s and as a result their cortisol levels will be suppressed, resulting in a negative test.

The late night salivary cortisol test is considered one of the most sensitive screening tests for Cushing’s. Elevated cortisol between 11:00 p.m. and midnight appears to be the earliest detectable abnormality in patients with this disorder. Cortisol secretion is usually very low at this time of the day, but in patients with Cushing’s syndrome, the value is virtually always elevated. Although this is a relatively new test, it is currently the most widely studied single test for the diagnosis of Cushing’s syndrome with at least eight independent studies from all over the world demonstrating sensitivity of 93-100% for the diagnosis of Cushing’s syndrome.² The salivary cortisol test can be administered by your local hospital or can be completed with an at home kit. You can ask your doctor about which option is best for you & your needs.

If the results still prove to inconclusive, the dexamethasone CRH test can be helpful because some patients have high levels of cortisol but don’t develop the full-blown effects of Cushing’s syndrome. These patients may have pseudo-Cushing’s syndrome, a condition sometimes found in people who have depression or anxiety disorders, drink excess alcohol, have poorly controlled diabetes, or are severely obese. The dexamethasone-CRH test can distinguishes pseudo-Cushing’s from mild cases of Cushing’s.³

I know many of you have come across this information while searching for information about Cushing’s online and if you’re not familiar with the various tests, it can be overwhelming. I’ve provided links with additional information for all the tests I mentioned and hope it helps you to navigate the options & process of testing for Cushing’s syndrome.

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I wanted to let all of you know about the Pituitary Symposium being held in Seattle. I went to a similar symposium last year and found it to be incredibly insightful and had the opportunity to meet other Cushing’s patients & survivors.

If you plan to attend, please send me an email at kristinwalldesigns@gmail.com so we can plan to meet at the conference. I’d love to meet each & every one of you!

The Swedish Hospital is hosting the third annual Pituitary Symposium: “A Patient’s Road Map to the World of Pituitary Disorders” on Sat May 8th from 9-5pm. The 2010 conference will provide a comprehensive overview of pituitary disorders including an in-depth review of different pituitary diseases, a review of current disease management and updates on surgical and medical management options. The internationally recognized faculty presenting at this conference were chosen for their area of expertise related to the diagnosis and management of patients with pituitary disorders. Patients and caregivers will also have an opportunity to participate in a one-hour breakout session to talk with other people affected by these conditions.

Date: Saturday, May 8, 2010

Location: Swedish Medical Center, Cherry Hill Auditorium
550 17th Avenue
Seattle, WA 98122

Time: 9:00 a.m. – 5:00 p.m.

Fee: $50 per person - Breakfast, lunch and snacks provided; scholarships available

For more information or to register by phone: 206-386-2502

Go here to register online.

AGENDA

8:15 a.m. Registration Begins/Continental Breakfast

9:10 a.m. Welcome - William H. Ludlam, M.D., Ph.D.

9:20 a.m. Nonfunctioning Pituitary Tumors - Mark E. Molitch, M.D.

10:00 a.m. An Overview of Acromegaly - William H. Ludlam, M.D., Ph.D.

10:40 a.m. Break

11:00 a.m. Advances in Pituitary Radiotherapy - John H. Suh, M.D.

11:40 a.m. Medical Treatment Options in Cushing’s Disease - Anthony P. Heaney, M.D., Ph.D.

12:20 p.m. Lunch

1:10 p.m. Patient Small Group Discussions

2:10 p.m. Medical Therapy for Pituitary Tumors - Ashley B. Grossman, M.D., FRCP, FMedSci

2:50 p.m. Surgical Treatment Options for Pituitary Lesions - Marc R. Mayberg, M.D.

3:30 p.m. Break

3:50 p.m. The Role of the Pathologist in Pituitary Patient Management - Sylvia L. Asa, M.D., Ph.D.

4:30 p.m. Medical Management of Prolactin Secreting Pituitary Tumors - Roberto Salvatori, M.D.

5:10 p.m. Closing Comments - William H. Ludlam, M.D., Ph.D.

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For those of you who live in and around the Virginia area, I wanted to let you know about the Pituitary Days patient conference at the School of Medicine Univ of Virginia on April 16, 2010. To learn more about the conference and to register, please visit the Pituitary Days 2010 Conference home page.

If you live in the area, I would encourage you to attend the conference. It’s a great opportunity to meet other Cushing’s patients and survivors face to face, plus hear from doctors who specialize in this area of medicine.

One of own Cushing’s Partner Program members will be attending the conference. If you’d like to meet up with her at the conference, please send me an email using the contact form and I’d be happy to put you in contact with her.

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I came across an interesting new study published by the Journal of Clinical Endocrinology & Metabolism on Specificity of Screening Tests for Cushing’s Syndrome in an Overweight & Obese Population.

Widespread screening of overweight and obese adults for Cushing’s syndrome is not supported by a new study, even when one or more features of Cushing’s syndrome are present.

“Broad screening programs for Cushing’s syndrome in an obese population would likely lead to unnecessary testing, false-positive results and anxiety,” Dr. Smita K. Baid of the National Institutes of Health, Bethesda, Maryland and colleagues report in the October issue of the Journal of Clinical Endocrinology and Metabolism.

Using tests and criteria recommended by recent Endocrine Society guidelines for screening for Cushing’s syndrome, the research team “found no subject with the disorder among 369 people who were overweight or obese with a mean of five to six signs or symptoms” of the disorder, according to their report.

All subjects completed two or three tests: a 24-hour urine cortisol, and/or late-night salivary cortisol, and/or 1 mg dexamethasone suppression test (DST). An abnormal result on any of these tests triggered a repeat test and/or a dexamethasone-CRH test. Subjects with abnormal DST results and a low dexamethasone level were asked to repeat the test with 2 mg dexamethasone.

The guidelines suggest that Cushing’s syndrome should not be diagnosed unless two tests are abnormal. When the investigators applied this rule, the combined specificities of double combinations of urine free cortisol, DST, and/or salivary cortisol for excluding Cushing’s syndrome ranged from 84% to 90%. The specificity of urine free cortisol, DST and salivary cortisol together was 78%.

While roughly one fourth of the study subjects had at least one abnormal result, mean composite scores among subjects with and without test abnormalities were not significantly different, the investigators report.

This, they say, “highlights the difficulty in determining whom to screen and supports the fact that these screening tests were falsely positive.”

“We caution against a literal interpretation of the recent guidelines,” the authors write. Instead, they suggest that patients be monitored for worsening symptoms over time and then screened, if appropriate.

“Clinical judgment, taking into account the number and progression of symptoms, remains essential for the diagnosis of Cushing’s syndrome,” the researchers conclude.

Report curtosey of NEW YORK (Reuters Health)

I have mixed feelings about this study.  On the one hand, I think a study like this helps to perpetuate an uphill battle many patients face in trying to get a diagnosis of Cushing’s syndrome because doctors think it’s a rare occurrence. And for doctors who’ve had little or no direct experience in diagnosing or treating a patient with Cushing’s, this study (in my opinion) may prevent exploratory testing in patients who truly need it.

On the other hand, as a society we are faced with 2 epidemics - the onset of obesity and the availability of wide spread medical information courtesy of yours truly the Internet. I think obesity & Cushing’s are mutually exclusive and are too often thought of as one in the same - because you are obese doesn’t mean you have Cushing’s and because you have Cushing’s doesn’t necessarily mean you are obese. Yes, being overweight or in some cases obese is a symptom of Cushing’s - but that’s just one symptom. I think there are other far more telling symptoms of Cushing’s besides one’s weight.

The Internet is an amazing tool (it’s hard to think about life before it) and has given us the power to do so many things, such as not taking a back seat to our health care - but rather researching & learning information as it pertains to our well-being. Having access to so much information can at times be a slippery slope because there is a small percentage of people that may have similar symptoms to that of something more serious and they use the information they find online to diagnose themselves or others around them. And all without consulting their doctor.

In my opinion, in a perfect world we’d use the Internet to empower ourselves with information pertaining to our health & body and then present our findings to our doctor to be proactive in getting to the root of what’s going wrong.

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Most doctors agreed that cyclical Cushing’s syndrome is by far the most difficult form of Cushing’s to diagnose because it’s patterns can be erratic or the elevated levels are so mild that it’s difficult to recognize. Much of what was presented stated that both the patient and the doctor must be persistent in testing if cyclical Cushing’s is suspected.

• Realize that elevated cortisol levels can be episodic, erratic or cyclical.
• Cyclical Cushing’s should be suspected when the clinical suspicion of the syndrome if high but tests are negative.
• Needs 3 peaks and 2 troughs to establish cyclical pattern.
• One doctor suggested 28 consecutive days of either early morning collections of first urine or salivatory tests to confirm or deny cases of cyclical Cushing’s.

Many of the presenters encouraged patients to seek out endocrinologists that had a history of diagnosing & treating patients with Cushing’s. For patients who don’t have text book test results, they could easily slip through without getting a diagnosis because his/her doctor wasn’t experienced enough. The reoccurring theme throughout many of the presentations was that there’s not one test that will give a positive diagnosis every time. It was at this point they introduced the idea that diagnosing Cushing’s, whether it be cyclical Cushing’s, ectopic Cushing’s, an adrenal tumor or a pituitary tumor, is both a science and an art.

A heavy emphasis was also placed on the reoccurrance of pituitary tumors caused by Cushing’s. The statistics for reoccurrance were staggering.

• It takes an average of 3 - 5 years for reoccurrnace to appear.
• There is a 25% reoccurrnace rate for Cushing’s patients who are 5 years post-surgery.

The cause for reoccurrance is most often attributed to an incomplete tumor removal. Depending on the size of the tumor and where it’s located on the pituitary gland, it make extend into an area that is inoperable.

So what the treatment options for reoccurrance? Is there a definitive cure? Yes, there are treatment options, but there is no cure for pituitary tumors caused by Cushing’s - only remission. A second pituitary surgery is more common to treat a reoccurrance, but in extreme cases a bilateral adrenalectomy may be a more viable option. In extreme cases, radiosugery (gamma knife surgery) will be used to treat Cushing’s.

There was contradiction between the doctors on whether or not patients who had undergone treatment for Cushing’s were considered cured or in remission from the disease. Most agreed that a patient who had undergone an adrenalectomy for an adrenal tumor would be considered cured because the chance for reoccorrance was minimal to none, but were cautious to call patients who had undergone pituitary surgery cured because the reoccurance rate was higher. They preferred to use the term remission. Most of the presenters encouraged all patients effected by Cushing’s to have annual check-ups because there is always a chance for reoccurrance.

In the end it was apparent that more studies and longer studies need to be done to gain a deeper understanding of Cushing’s syndrome. There’s just not enough hard data out there that provides definitive answers one way or the other. Since the early days of Harvey Cushing, there have been great technological advances made in surgical treatments for Cushing’s syndrome, but there’s still a lot of unknowns when it comes to medication therapy.

*Note: The information I’m sharing from the Cushing’s symposium are not my personal views or thoughts on Cushing’s, the diagnosis of Cushing’s or the treatment of Cushing’s. This information is directly from the presentation that was given by various doctors that specialize in the diagnosis & treatment of Cushing’s.

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This past Saturday I attended the 2009 Pituitary Patient Symposium on Cushing’s Syndrome at the Swedish Medical Center. It was an all day event that included 6 presentations from various doctors who are highly specialized in the treatment of Cushing’s syndrome. It was a high-level symposium (at times i was lost in the medical jargon) that explored many facets of Cushing’s syndrome. Topics ranged from current treatments to future treatments of Cushing’s syndrome, an in-depth overview of cyclical Cushing’s as well as an in-depth look into quality of life for patients living with Cushing’s.

I’d like to share some of the important highlights from the symposium.

• Cushing’s is a rare and often times misunderstood & misdiagnosed disease. According to the stats provided, 2 to 3 cases of Cushing’s per 1 million are reported each year. The numbers are most likely higher than what’s reported because Cushing’s is misdiagnosed or under diagnosed.

• On average, it takes a patient 2 - 5 years to get a confirmed diagnosis of Cushing’s (sometimes it can take 5 - 8 years).
• Getting a confirmed diagnosis of Cushing’s is a multi-step process that should be done by a doctor who’s had experience diagnosing/treating patients with Cushing’s. Because Cushing’s is so rare, most doctors will never see a case of Cushing’s in their entire career. Many of the doctors described the process of diagnosing Cushing’s as both a science & an art because test results are not always black & white and the doctors may need to draw on their previous experience with Cushing’s to determine if further investigation is needed to get a diagnosis.
• To screen for Cushing’s, many of the doctors agreed on the following tests: urine free cortisol (24 hr urine collection) and a late-night salivatory cortisol (done two times). Quite a few of the doctors presented studies that showed that the dexamethasone suppression test isn’t reliable and doesn’t work.
• Surgery is still the first choice for treatment of Cushing’s. Some of the doctors presented studies with various medication therapy, but none have proved to be successful in managing or treating Cushing’s as the primary treatment.
• Doctors don’t know the root cause Cushing’s (aside from it developing from external sources like steroid medications).

I walked away with so much information and now feel like a Cushing’s warrior. In my next post I plan to share information I learned about cyclical Cushing’s and the reoccurance of pituitary tumors and the associated treatments available.

*Note: The information I’m sharing from the Cushing’s symposium are not my personal views or thoughts on Cushing’s, the diagnosis of Cushing’s or the treatment of Cushing’s. This information is directly from the presentation that was given by various doctors that specialize in the diagnosis & treatment of Cushing’s.

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The Swedish Medical Center, located in Seattle Washington on Cherry Hill, is hosting a Pituitary Patient Symposium on Cushing’s Syndrome on Sat. May 9th from 8:30-4:40pm. Hear from nationally-recognized experts about the diagnosis and treatment of Cushing’s Syndrome. There will also be opportunities for you to share your thoughts and experiences with other patients. Breakfast, lunch and snacks provided.

Fee: $50 per person (limited number of scholarships available call (206)386-2502 for scholarship information). To register for the symposium, please visit the health classes section located on the Swedish Medical Center website.

I encourage all of you who are located in the Seattle are to join me at this conference. It’ll be a great way to get up to date information on the latest treatments for Cushing’s and you’ll have an opportunity to meet other Cushing’s patients & survivors. If you plan to attend, please leave a comment or send me a message with your contact information so we can meet up.

I look froward to seeing you there!

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Over the past couple of weeks I’ve received a number of messages from readers who have doctors that just won’t listen to their symptoms - and if they do listen, they don’t take their symptoms seriously enough to oder tests to get to the root of the problem. This has to stop.

There’s no question that our health care system is over-burdened and underpaid and as a result, patient care has gone down the tubes. I know, depressing - especially when you’re relying on these people to figure out what’s wrong with your body. But with that said, I can say there are some wonderful doctors out there who do go the extra mile for their patients. If you’re struggling to find a doctor that has experience with Cushing’s, the Cushing’s-Help website has a section dedicated to doctors with their contact information. You can search for doctors by specialty and by geographic location.

So what do you do when you’re health is going downhill and your doctor brushes it off, saying you ‘need to eat better and exercise more‘. A couple of things should happen.

• From that moment forward, become your own health advocate. Use the Internet to research the symptoms you’re having. Start a journal and list the symptoms you’re having, when they started and how frequently you have them.

• If you find information on the Internet that supports the symptoms you’re having, print it out and show it to your doctor.

• Find a new doctor! I know many of us are restricted by our health plans that dictate which doctor we can see - but I assure you, there will be at least one that will listen to your symptoms and take action. It’s your right to get the health care that you feel you need.

• If you can, try to find a family member or friend who can help support your efforts in getting the heath care you need. Perhaps they can help you research the symptoms you’re having, help you track down a doctor or simply go with you to your doctor’s appointment to support you.

Symptoms of Cushing’s are often times mistaken for more common problems, such as poor eating habits and lack of exercise. And yes, when you look at the symptoms of Cushing’s individually, it doesn’t look like much. But when you look at them collectively, it’s cause for concern and deserves further investigation.

Don’t let a doctor brush off your symptoms - be persistent.

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I recently received an email from a young woman who is struggling to get tests to determine if she has Cushing’s, but her symptoms point to cyclical Cushing’s. Her story of being bounced from doctor to doctor is all too familiar. In her case, like many others, these doctors won’t commit to additional testing to get to the root of her problems - they attribute her inability to lose weight to poor diet and lack of exercise. Looking at it from the surface, I think just about anyone could give that advice. What’s really frustrating is the fact that these doctors are ignoring the long list of symptoms she’s experiencing. In my opinion it’s a doctor’s responsibility to follow through with their patient’s health care. And if a patient complains of abnormal symptoms, then it’s the doctor’s responsibility to do what’s medically necessary to get to the root of the problem.

Unfortunately we don’t live in a society where our medical professionals can be trusted to be our health advocates. How many doctors did you see before one of them would take the time to listen to your symptoms to understand there was a real problem with your health? How many doctors did you see before you received a diagnosis of Cushing’s? It took me 4 1/2 years and 4 doctors before I was diagnosed with Cushing’s. Although I had finally gotten a diagnosis, the doctor who diagnosed me did know all that much about Cushing’s. In fact, she had only seen one other Cushing’s patient in her entire medical career. And I didn’t know if I had Cushing’s syndrome or Cushing’s disease, I would need to get further testing to determine which one I had. It was then that I realized that I’d have to become my own health advocate. I was scared, faced with a disease that I knew nothing about and had to figure out a way to get myself the best possible care.

For those of you out there who think may be suffering from Cushing’s, I’d like to share some of the information I’ve gathered in my research to overcome this disease. I’m only going to touch on the types of Cushing’s, the symptoms associated with Cushing’s and the various tests you should request from your doctor if you think you might have Cushing’s. What causes Cushing’s will be in a future post.

There are a couple of different types of Cushing’s.

- Cushing’s disease: there is a tumor on the pituitary gland caused by the adrenal gland producing excess amounts of cortisol, which leads to excess amounts of ACTH released from the pituitary gland.

- Cushing’s syndrome: there is a tumor on one (or both) adrenal glands which causes the adrenal glands to produce access amounts of cortisol.

- cyclical Cushing’s syndrome: there a periods of excess production of cortisol followed by normal production of cortisol. Typically there are three peaks of excess followed by two troughs (low peaks).

- Cushing’s disease with a cancerous pituitary tumor: a cancerous tumor develops on the outside of the pituitary gland, which causes excess amounts of ACTH to be produced. This is considered a rare form of Cushing’s.

Here’s a list of typical symptoms of Cushing’s. Some people experience all symptoms associated with Cushing’s, while others experience only a handful.

• severe fatigue
• weak muscles
• dark red, purplish stretch marks
• think skin
• bruise easily
• frequent skin rashes, skin problems
• insomnia
• hair loss / thinning hair
• round face ‘moon’ face
• red cheeks
• high blood pressure
• high blood glucose
• increased thirst and urination
• irritability, anxiety, or depression
• a fatty hump on the back of the neck
• excess disproportionate weight gain / heavy chest and torso, thin arms and legs

If you suffer from any combination of these symptoms, I urge you to talk to your doctor. Particularly if you’ve experienced a sudden, unexplained weight gain. Most doctors initial response will be to eat better and exercise more. Again, if you have any of these symptoms, don’t let them brush it off. This is where you have to be your own health advocate. You have to live in your body day in and day out, every day - they don’t.

‘No single lab test is perfect and usually several are needed. The three most common tests used to diagnose Cushing’s syndrome are:

- 24-hour urinary free cortisol test

- measurement of midnight plasma cortisol or late-night salivary cortisol

- low-dose dexamethasone suppression test

Another test, the dexamethasone-corticotropin-releasing hormone test, may be needed to distinguish Cushing’s syndrome from other causes of excess cortisol.’

I am in no way a medical professional and urge you to talk to your doctor about any symptoms you may be having. My goal is to share the experiences I’ve had in my journey with Cushing’s syndrome and to encourage others to become their own health advocate.

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A dear woman by the name of Martha lost her battle with Cushing’s disease this past Sunday. She suffered unnecessarily for years, going from doctor to doctor, receiving one incorrect diagnosis after another. Just as she received the correct diagnosis of Cushing’s disease, it was too late. Please the read the full story on Robin’s blog Survive the Journey.

I urge all of you to become your own advocate. Be persistent with your doctor. Don’t take no for an answer. This is your body, your life - fight for it!

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