My Battle With Cushing's Syndrome

Tests you should ask your doctor about if you suspect Cushing’s

Kristin — Tue, 09 Mar 2010 15:17:39 +0000

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.

Seattle Pituitary Symposium on May 8th 2010

Kristin — Mon, 08 Mar 2010 19:06:48 +0000

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.

Will Cushing’s come back if I get pregnant again?

Kristin — Thu, 25 Feb 2010 21:37:44 +0000

When I was diagnosed with Cushing’s syndrome and it was determined that I developed it during the third trimester of my pregnancy, I pretty much decided right then and there that my dreams of having more children were out of the question. It took 4 1/2 years and three doctors before I was diagnosed with Cushing’s syndrome and once I had surgery in Jan. ‘08 to remove the 3cm tumor and my right adrenal gland, it’s been a long, hard road to recovery.

Just as the memories of the pain from labor and delivery fade over time, my feelings of not wanting to get pregnant again and risking Cushing’s have started to lessen and I’ve actually allowed myself to think openly about having another baby. Apart of me is willing to take that leap of faith and risk developing Cushing’s again because the outcome of a baby far exceeds what may lay ahead. But the rational, must control everything side of me says why push my luck? I have an amazing son (he’s 6 1/2) who’s healthy and the light of my life. Plus I’m just over 2 years into recovery and finally feel really good and have been able to reclaim my life in a deep and meaningful way.

So for now, I’m committed to not being committed to a decision. I’m doing what I do best - research, research, research. I’ve asked every doctor I’ve worked with since being diagnosed with Cushing’s syndrome if I will get Cushing’s again if I get pregnant for a second time. Their answers have been mixed. Some have assured me that the chances of me Cushing’s developing during a second pregnancy are slim to none, while others have said they can’t give me a definitive answer because doctors haven’t been able to determine the root cause of what causes some women to develop Cushing’s during pregnancy. Neither answer is very reassuring.

So I’ve decided to take to the Internet in search of case studies, medical journals and articles that will give me insights and information about developing Cushing’s again with a second pregnancy. Unfortunately there’s limited information online, mostly due to the fact that Cushing’s developing during pregnancy is extremely rare. In fact one study in 2004 cited that fewer than 150 cases inthe world literature have been reported. So far I’ve only found one, two, three case studies online about women who developed Cushing’s during a first pregnancy, were successfully treated and cured, then became pregnant again and developed Cushing’s with the second pregnancy. I can hardly make an informed decision based on two case studies, so my search for information continues.

If you know of or have read any information about developing Cushing’s again with a second pregnancy, please use the comment section and share your information with me.

No related posts.

Pituitary Days patient conference at the School of Medicine Univ of Virginia April 16, 2010

Kristin — Wed, 17 Feb 2010 00:47:28 +0000

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.

Call out to recovering Cushies

Kristin — Thu, 11 Feb 2010 00:01:33 +0000

A couple of weeks ago, one of my Cushie friends - who also happens to be a nutritionist - gave me recommendations on some vitamins, supplements & natural detoxes to help me feel more balanced in my Cushing’s recovery. So I took her up on some of her suggestions and have felt a vast improvement (and it’s only been 5 days). I’ve been working on a holistic, natural approach for some time now and these latest additions are great because 1) no prescriptions are necessary - I can pick up my vitamins & supplements at the drug store or get them online and 2) no need to make additional trips to & from the doctors office.

I thought I’d share some of my regimen with you for those of you who may be curious and may want to add it to your own regimen.

Women’s multi-vitamin
Vitamin D 1000 IU (bone heath & helps to increase immunity & reduce inflammation)
Fish Oil 4800 mg (ultimate heart & brain heath - helps with concentration, mood, anxiety & depression)
Calcium/Magnesium 250mg/80mg (1 tablet in the am & 2 just before bed - helps with sleep)
Pine Bark Extract 100mg (super antioxidant & helps with ADD/ADHD)

I’d love to hear about your regimen of vitamins, supplements or other remedies you use post-Cushing’s to help you feel balanced. Please use the comment form below to share your comments, thoughts & ideas. I’ll be doing a follow up post sharing everyone’s input & feedback.

this & that - Cushing’s recovery update month 24

Kristin — Wed, 06 Jan 2010 20:56:23 +0000

It’s hard to believe it’s been a whopping 24 months since I went into recovery from Cushing’s syndrome. For those of you who are also on the path to recovery, you know all to well about the many ups & downs we face every day. 2009 proved to be a year filled with more triumphs than disappointments. I’d like to share a brief year in review with all of you.

Jan 2009 - Kicked off the year feeling pretty good. A lot of my post-Cushing’s symptoms started to diminish. Started a regular workout regimen.

Feb 2009 - Started experiencing hot flashes again, but subsided by summertime. Began writing about patient advocacy.

March/April 2009 - Launched the Cushing’s Partner Program support group on meetup.com. (currently 55 members strong!)

May 2009 - Still experiencing memory lapses and having a hard time maintaining long-term memory.

June 2009 - Started gaining some weight back and had severe food cravings. Decided to switch from a traditional endocrinologist to a naturopathic doctor.

July 2009 - Had a complete workup on the function of my neurotransmitters and discovered that I was still very unbalanced. Began a new regimen of natural supplements.

Aug 2009 - Tried hot yoga for the first time and started going on a regular basis.

Sept 2009 - Began weening off prescription meds.

Oct 2009 - Invited to participate in the 2nd Annual HealthBloggers Award competition. Began feeling run down and having insomnia. The Cushing’s Partner Program support group launched on Facebook.

Nov 2009 - Test results show my thyroid is acting up and went back on synthetic meds.

Dec 2009 - Synthetic meds aren’t working well, decide to switch to a natural thyroid hormone. The HealthBloggers Award competition ends, My Battle With Cushing’s Syndrome wins Best 100 and comes in at #17.

I’m starting 2010 off pretty strong. My energy level is good, sleep is great, food cravings are gone and my weight has stabilized. But I’m having some knee and hip pain. My workouts have dwindled over the past two months, so I’m hoping that getting back to the gym will help build my strength and the pain will start to dissipate.

My goal in 2010 is to stay symptom free - continue eating healthy and working to make my body stronger that it’s been in years.

Thank You!

Kristin — Wed, 23 Dec 2009 19:03:26 +0000

I’d like to thank everyone who voted for My Battle With Cushing’s Syndrome during the HealthBloggers People’s Choice Award competition. My blog placed #17 and made the Best 100.

Your support & votes help to bring awareness to a disease that is often overlooked, under-diagnosed and misdiagnosed.

I’d like to wish all of you a happy holiday and cheers to a new year!

The Cushing’s Partner Program is LIVE! ...

What I’m thankful for

Kristin — Wed, 16 Dec 2009 21:23:46 +0000

My two year recovery mark is rapidly approaching and I’ve been reflecting on the long journey that has brought me to today. I have an in-depth post celebrating the trials & tribulations of my two year anniversary coming very soon. For now I’d like share some of the things I’m most thankful for this holiday season.

On the first day of Christmas, my true love sent to me

A clean bill of health

Two working legs

Three less prescription pills

Four workouts a week

Five less headaches

Six less hot flashes

Seven less sleepless nights

Eight hours of sleep

Nine if I’m lucky

Ten pounds lost

Eleven plus pounds to go

Twelve symptoms that have disappeared!

I’m thankful & grateful to all of you who have supported me in this journey. And for those of you who I’ve connected with because we’ve shared a uniquely uncommon experience, you hold a special place in my heart.

Last chance to vote for My Battle With Cushing’s Syndrome blog!

Kristin — Tue, 08 Dec 2009 18:16:14 +0000

The People’s Choice Health Bloggers competition ends in one week on Dec. 15th - so there’s still time for you to cast your vote for My Battle With Cushing’s Syndrome blog. Each and every vote counts! It only takes a minute (your vote will be counted whether or not you choose to leave a comment). Click here to vote!

For those of you who have voted, thank you for your support!

New Study published by the Journal of Clinical Endocrinology & Metabolism

Kristin — Thu, 12 Nov 2009 19:18:47 +0000

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.