Revisiting "Bariatric surgery: Not the answer for obesity and "hidden" Cushing's Syndrome"

In February 2009, I posted Bariatric surgery: Not the answer for obesity and "hidden" Cushing's Syndrome .  There are several really good comments below the article, but this one is new, and I think anyone considering bariatric surgery should read what this person has to say: 

Anonymous said...


On Oct 23, 2009 I had Gastric RouxEnY Bypass surgery because all of my doctors: my general dr/my pain mgt dr/my spinal fusion (2) dr/ my chronic pain therapist ALL told me that Cushings Syndrome was soooo RARE that I just needed to lose this excess weight and ALL of my symptoms would disappear or improve. So, like a good patient, I had the bypass.

It is 10 weeks post-op and I have lost 40 lbs (230 to 190, 5'7" tall, 39 yrs old)-this could be considered slow by some RNY patients. On Nov. 11, 2009 (only 2 weeks post-op) my new doctor, a young, female endocrinologist got my dexamethasome (1mg) results (finally) and loosely diagnosed me with Cushings. I have since had another 1mg test and an 8mg test, these also suggesting Cushings. I am scheduled for a MRI 2 days from today to see if we can see the size/location of the tumor on my pituitary.

For more than 2 years I have self-diagnosed my Cushings. I had EVERY symptom, and MORE, except the straie (SP?)(horrible red stretch marks). So, each time a 24hr urine-free cortisol test came back in the 'normal' range, I began to agree with my Dr's- my worsening symptoms must be due to growing obesity. I decided that I just needed to 'move on' with my life and accept the fact that I ate bad and did not exercise (due to my 4 back surgeries in 4 years, and my severe depression).

Well, if I have my way, my tomb stone will read: I told you I was sick!

I do not know if I will regret the bypass surgery down the road because I am not certain what that 'road' will entail yet.

At my one month gastric check up, upon hearing my news, my Dr was upset that I had never mentioned the word Cushings to him. (Again, I was having the gastric b/c Cushings was too RARE for my overweight self to have, so, it never occurred to me to mention it to him...) He also said "I would have never operated on you if I had thought you had Cushings". Later in our conversation he told me of his concern that once my Cushings was under control, that I would be too skinny because I had gastric.

I hope this comment helps someone out there.

Bless you, Anonymous.  I sure hope things work out for you.  Thank you so much for sharing with us.

We need an elephant specialist!

This is a special story written on the Cushings Help support boards. The author gave me permission to post it here on my blog. No matter how good our doctors are, if someone doesn't put it all together, no one sees the whole picture. Most of the time we, the patients, are the ones who put it all together.

Kim's story:

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He walked into the exam room, introduced himself, and as he sat down, he asked, "Has anyone ever suggested you might have Cushing's disease or Cushing's syndrome?"

My name's Kim, and I'm 49 years old. I have two children, two grandchildren, and two full-time jobs. On the weekdays, I'm a writer and editor specializing in education issues; evenings and weekends, I'm marketing director at an international and arthouse movie theater. I had to pick up this second job to pay for the medical expenses not covered by my health insurance. And, as you may know, there are a lot of medical expenses involved in this disease/syndrome.

Until three years ago, I was also a marathon walker and a racewalking coach for an organization that trains endurance athletes who raise funds to fight blood cancers. For ten years, I walked between 35 and 50 miles every week. It was nothing for me to wake up on any given morning and decide to walk 10 miles. Saturdays I would racewalk between 12 and 18 miles with my group, and then Sunday mornings I met with some friends to bicycle 10 miles and then walk four miles. I bicycled or walked to and from my weekend job even after walking and cycling for hours earlier in the day. When I traveled, I walked everywhere: once I walked the entire length of Manhattan just to see what it would be like. Four years ago, I was sitting in a coffeehouse in mountainous Sarajevo, Bosnia, and noticed a passel of runners with race tags on their shirts. I was curious to know which race was going on, as I hadn't heard of any big events, so I walked down along the lines of runners back to where the slower runners and walkers were, and then walked alongside them for the rest of the 10-mile race. Up mountains and hills and down them, talking and listening all along the way. Just on the force of a whim.

In September 2006, I walked two half-marathons and kept up with my regular training besides. But a few weeks later, I came down with a bad flu, which quickly spiraled down to bronchitis and pneumonia. I was sick for weeks. So sick that an alarmed marathoning friend called his brother-in-law, a renowned pulmonologist, and asked a favor: would he come home from vacation immediately and see me at Duke University Hospitals and Clinics? His brother-in-law did indeed drop everything and met me at the hospital during his vacation time so that he could figure out what was wrong. Himself a marathon runner, he asked me to walk with him down the hallway to check my tolerance for exercise; I couldn't walk even five minutes at a brisk walking pace. I was "deconditioning" before his eyes. I was so exhausted I cried. I slept in the exam room between tests; I even fell asleep during a CT scan.

I never got better. I never walked another half-marathon. I never got back to my daily routines. I never felt healthy again.

Recently I sat at my table staring at an information sheet for the referral to an endocrinologist. I was so exhausted with the task of listing out all my surgeries, procedures, and diagnoses. I flipped through the contact list on my iPhone to help me remember which doctors I'd seen in the past three years. Almost every alphabetical category on my contact list contains a specialist. Each one of them is at the top of his or her field. Each one of them is terrific. Each one of them solved seemingly impossible medical riddles. Each one had valid points in believing that solving the mystery within his or her field would make me better. But which one was right?

I spun through my contact list, A-Z.

Would all be revealed by the bariatric surgeon who performed the LapBand surgery after I'd gained 70 pounds in 2007? Well, it must not be him; despite a very successful first couple of months post-Band surgery in 2008, I began to put on ounces rather than lose pounds -- even while on a strict diet that was assiduously journaled. He was frustrated, I was frustrated. Why on earth wasn't I losing weight and feeling better? I was clearly committed to compliance, and he was clearly committed to having a successful patient outcome. What was wrong?

There was the cardiologist who warned me that my heart is "practically dissolving." Maybe fixing that would solve the puzzle and make me healthier. Well, we tried that, but the slow slide continued. And what was the deal with this hypertension? Before 2006, my blood pressure was fine. Now it was so high that I was at risk for stroke.

My dentist was concerned about the mouth sores that never seemed to heal properly. And my mouth was so dry.

A dermatologist was amused by my response when I was referred to her and diagnosed with a pyogenic granuloma on my hand: I just couldn't stop laughing. My hand was bleeding spontaneously from this spot on the palm of my hand -- just like I had stigmata! Who could have kept themselves from laughing at that? While she was repairing the exposed vein, she commented on my dry skin and the vertical split in two of my fingernails (one of them quite severe). Also, where did I get all those bruises? Do I bruise often? Have I had a recent blood count?

Then there was the forensic psychiatrist who specializes in treating patients with posttraumatic stress disorder and said that I was the highest-functioning victim of childhood trauma and domestic abuse she'd ever met, but that I was so medically fragile since getting sick in 2006 that she was seriously worried about my living through 2007. The anti-depressants prescribed didn't seem to help with the insomnia I was suffering, so she kindly offered Ambien as well.

And the gastroenterologist who was intrigued by the various symptoms I presented -- not merely the GERD, Schatzki ring, difficulty processing and storing iron taken orally (attempts to keep my iron levels up failed so miserably that the only way I could keep my gums from remaining permanently white was to go back to the hematology-oncologist for IV infusions of iron), and esophageal ulcers and lesions that never healed ... but also the various other ways my body was failing. CREST syndrome seemed likely, but ....

Could the answer lie with the general practitioner who steadfastly maintained that if I would just fecking lose weight that I'd feel better? When I was too exhausted to see the cardiologist he referred me to, he called me at the office and ordered me to leave my desk right then and there and get my butt to the cardiology office, and then to call him when I was finished. And he was a pitbull when it came to my meeting with other specialists. It was his recommendation that I have weight-loss surgery, because he was sure it would reduce the strain on my heart, fix my pulmonology issues, and get me back on track with my marathoning.

My hematology-oncologist was convinced the issue was a leukemoid disorder consequent to chronic illness. She could treat that. But which chronic illness was causing it? After months and months of testing (including one test that required me to be helicoptered to the testing facility), bone-marrow biopsies (ouch!), and endless rounds of hours-long IV infusions of iron, enzymes, vitamins, and mildly chemotherapeutic agents, she admitted she was stumped.

An amazing opthalmologist spent hours and hours and hours trying to figure out why my vision would go blurry and I suffered endless headaches. Retinal tumor, possibly? CREST syndrome would explain the dry eyes, of course. But not even tear replacement helped with the blurriness.

There was also my fantastic orthopaedic surgeon who did a meniscus repair after I injured my knees through repeated stumbling. He told me he was concerned about how long it took me to recover and the fact that I hadn't seemed to heal well from a previous surgical repair of an ankle injury also caused by instability. He's a very good surgeon, he said: why was there so much scarring, and why was it taking so long for his work to heal? And what was up with all the inflammation in my knees, calves, and ankles?

What about the pulmonologist who was investigating the possibility of pulmonary hypertension? He seemed buoyed by his success in most of the investigative work but simply could not track down the reasons the condition of my lungs and heart made me a possible candidate for a heart-lung transplant a few years down the road. My blood pressure was so high at the time of my initial appointment that he was concerned I would have (or perhaps had had) a stroke. Why was my throat chronically sore? Why did I have such severe laryngitis for so many weeks on end -- so persistent and severe that he considered referring me to an ENT surgeon to repair what might be a malfunctioning larynx?

Maybe the rheumatologist seeing me for fibromyalgia and a strange pattern of diffuse inflammations throughout the body? We never got very far getting to the bottom of that, either. But we did get a lot of test results flowing.

Finally, I'd completed the medical history form and my list of medications. It was my bariatric surgeon who called my primary-care physician (the mean, crabby one who insisted I was fat, not sick) and asked him to have my cortisol levels tested. He was just so frustrated that the LapBand surgery didn't work as well as he was sure it would. There was clearly some underlying cause impeding success -- because it wasn't his surgical skills!

And that's how I ended up in the office of my endocrinologist last week. With my chart of lab results and my medical history in his hand, he walked into the exam room and introduced himself. As he sat down, he asked, "Has anyone ever suggested you might have Cushing's disease or Cushing's syndrome?"

I thought I'd had a lot of testing done by other specialists, but I was a mere wee, green lassie inexperienced in the ways of testing before this past week! To be honest, I can't really tell you all the results of all the tests right now, but as things come in, I'll be documenting them and perhaps sharing some of them here. (Robin's note: "here" is on the cushings-help.com message/support boards.)

I want to repeat that, with the possible exception of my primary-care physician (who's a pitbull when it comes to medical case management but ... um ... well ... lacks certain people skills that ordinary mortals have), I have had the most amazing doctors in the entire known and unknown universes. But my endocrinologist is probably the most amazing I've ever had. Compassionate, holistic, and knowledgeable. When he learned I was working two full-time jobs and still wouldn't be able to afford more testing and medical costs until my new insurance year starts in January, he referred me right there and then to HealthWell Foundation, which offers financial assistance for medication copays for certain illnesses and conditions. He was astonished that I was still working full-time, much less working two jobs seven days a week. "You're just not well enough to keep that up," he said, "and I am not going to let money keep you from getting a diagnosis and treatment." And 20 hours later, I had an email from HealthWell Foundation saying that I was preliminarily approved, pending verification of a couple documents.

I'm exhausted. And I'm broke. And I want to feel better. And I don't know whether I'm resilient enough to make it through this.

But there's a saying in Bosnian: "Novi dan, nova nafaka." It means something like "With every new day dawns a new chance." Giving my medical history to this incredible endocrinologist was one dawn. I just have to hang in there for another. And another. And as many anothers as it takes.

Novi dan. Nova nafaka. I believe in that chance.

---

After I asked Kim if I could post her story here, she responded in part with this: "Robin, thank you so much! I don't mind sharing my story at all. It's a perfect demonstration of the "four blind men and the elephant" story: every single one of my doctors over the years has been excellent, and I wouldn't want anyone else to have dealt with my leukemoid disorder, my knee meniscus tear, my therapy needs, my eye problems, my asthma, my heart and blood pressure issues, etc. .... but what resulted was that I had an ear specialist, a trunk specialist, a tail specialist, and a foot specialist all entirely missing the need for an elephant specialist."

I would have used the analogy of hearing hooves but not seeing the stripes. Elephant or zebra, the point is well made. Thank you, Kim.

Cushing's: An invisible illness, too

"How can Cushing's be an invisible illness?"

We are zebras, but our stripes remain hidden behind loose clothing and no one peeks beneath.

Our bodies grow disproportionate, yet we are only seen as obese.

As our muscles atrophy, we are told to exercise.

While we sweat like we have been exercising or we shiver from lack of thyroid hormones within the same few minutes, we have not moved.

Because our faces grow red we hear "you look so healthy", but the cortisol glow ruins our cardivascular system and no one notices.

When we grow humps and bumps in odd places, we are told it's due to being overweight.

While our other hormones plummet our emotions rise, but we are called bipolar, depressed, stressed.

From our blood pressure rising we become hypertensive, and we are handed a pill and told to eat less salt.

With acne worse than during puberty and hair in places it shouldn't be, we are told it must be PCOS.

When hair disappears from places it should be, we are told we are getting older.

Because our blood sugar cresendoes and crashes, we are told to watch what we eat and are called diabetic and/or insulin-resistant.

As edema forces our flesh into shapes not meant to be, we are given a diuretic and told to drink more water.

Cortisol becomes a rollercoaster we ride, getting sicker with each rise and fall, but we aren't offered a way off. "It's stress--take a xanax, an ativan...."

Sleep eludes us when we should embrace it, but encumbers us when we can't embrace it.

Pain is our companion, yet we fear mentioning it for being accused of wanting narcotics--until we can no longer hide it.


Will you look for us? See us? Help us?

Do you hear our hoofbeats? Can you see the stripes?

---

My "Cushie" friends will have more to add, I'm sure. I hope they will.
Hugs, Robin

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Bariatric surgery: Not the answer for obesity and "hidden" Cushing's Syndrome

Although I'm posting this as research (which it is), this is also personal for me. I was told by multiple doctors to have bariatric surgery. This included endocrinologists. I even went as far as making an appointment with a bariatric surgeon, going through the pre-surgical "talk" and consult, and asking a lot of questions. I didn't find him cognizant of the endocrine problems that might hinder recovery with bariatric surgery. Frankly, he dismissed my questions and walked out on me.

I'm glad I did my research. And now, the medical community is looking at the repercussions of bariatric surgery to control weight without first testing for endocrine-related causes, especially Cushing's Syndrome.

The first article cited below is a plea for screening of obese patients prior to bariatric surgery. Dr. Ludlam is well-known in the Cushing's patient community because of his stringent protocol for diagnosis and treatment of Cushing's. He and the others who authored this article have dealt with Cushing's patients for a very long time.

In this article, the authors cite two cases where bariatric surgery caused the CS to be overlooked, resulting in a poor outcome. "One patient had progression of obesity, multiple vertebral compression fractures, poorly controlled diabetes and HTN during a 10-year period, and the second patient ultimately died." The second patient was 27 years old. His death is a tragedy.

The second patient had a rapid weight-gain at the age of 20. By the age of 24 he had undergone a Roux-en-Y gastric bypass to control the weight. After losing 170 pounds and with a BMI of 20 kg/m² he still presented with "symptoms suggestive of hypercortisolism. These included
lower extremity edema, facial plethora, facial rounding, a dorsocervical hump, acne, proximal muscle weakness, and neuropsychiatric symptoms." These had been present prior to bariatric surgery, also.

The article goes into much more depth than I am presenting here. It is one which I believe all doctors who treat obese patients should read. The authors suggest who to screen , which can be summarized:

1. Anyone with an adrenal incidentaloma
2. Anyone presenting with HTN and Type II diabetes
3. Patients with a "history of easy bruising, evidence of proximal muscle weakness, the presence of reddish-purple striae 1 cm wide, and facial plethora"
4. Patients with rapid weight gain, especially in combination with other symptoms
5. Young patients with "old" symptoms (i.e. HTN, osteoporosis, kidney stones, multiple infections)
6. Any combination of the above.

The authors also suggest following the guidelines of research previously quoted in this blog.

The second article cited below is a response to the first article. In this article, the authors emphasize the need for screening of obese patients.

...a recently published meta-analysis reported a prevalence of hypercortisolism in ≤2–5% when Cushing syndrome is systematically screened for in patients with poorly controlled type 2 diabetes and adrenal incidentalomas [2]. Conversely, the prevalence of Cushing syndrome in those with simple obesity is largely unknown. Moreover, a condition of functional hypercortisolism with subtle alterations of hypothalamic-pituitary-adrenal axis is frequently evidenced in those with simple obesity...

...However, despite the probability that the diagnosis of Cushing syndrome might be overlooked, the possibility arises that Cushing syndrome might be unrecognized among obese patients.

This article outlines possible contra-indications of bariatric surgery for obese patients, especially those with possible Cushing's. Those, along with the delay in diagnosis may cause "irreversible sequelae in patients with undiagnosed Cushing syndrome".

M FLESERIU, W LUDLAM, S TEH, C YEDINAK, C DEVENEY, B SHEPPARD (2009). Cushing's syndrome might be underappreciated in patients seeking bariatric surgery: a plea for screening Surgery for Obesity and Related Diseases, 5 (1), 116-119 DOI: 10.1016/j.soard.2008.09.011


S SAVASTANO, R PIVONELLO, A COLAO (2009). Bariatric surgery for obesity and hidden Cushing syndrome Surgery for Obesity and Related Diseases, 5 (1), 121-122 DOI: 10.1016/j.soard.2008.07.006