The Power of Online Communities and Support Groups

I witnessed a miracle today. I can't even tell you much about it because it isn't my information to share without permission from the parties involved. I can tell you it is something that would never have happened without the loving, caring, EMPOWERED support of an online community on the Cushing's Help message boards.

You see, people got involved. Real people. People who know the illness, who know the doctors, who know where to turn for help. These folks are empowered on their own, but man, when they come together and work together, miracles are wrought. There is no way a doctor-centered site can give the information and resources the Cushing's community gives. It's simply impossible to do that for everything about which any one site tries to give information.

The body of knowledge that our support group has and shares with each other is so abundant with not one, not ten, but hundreds (maybe thousands) of caring, knowledgeable folks who read and share research, share what the good doctors have told them, and share who these good doctors are, we together know the symptoms/signs of every facet of these incredibly complex endocrine diseases even better than the doctors do (with the exception of a very few).

We know the new trials, the new research, the new methods before most doctors. We know what has worked and what hasn't. We know the side effects, the bad that goes with the good in treatment, and what the options are. We know that if we need to know something, we can post it and someone will know someone who knows. In other words, there is no way one site CAN do what any of the wonderful communities like the Cushing's Help site do. Never. I can't put it all on my blog, no matter how hard I try. But if 100's of us (1000's, actually, of us) post on one site, we CAN be effective. It's the nature of what works. That's the model which works.

I hope I can tell you about this miracle someday soon. I want you to be as blessed as I am with it. This is the hope for the future of empowered e-patients--not doctor-driven, encyclopedic sites, but community-centered, real-patient sites.

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SurgeXperiences hosted here October 4

SurgeXperiences 307--Call for submissions

I’ll have the honor of hosting SurgeXperiences for the first time on Sunday, October 4, 2009. SurgeXperiences is the one and only blog carnival collecting blog posts on all things surgical.

Please send me your posts via this form by Friday, October 2nd.

SurgeXperiences 306 , hosted at "Other Things Amanzi" is now up. Check it out!

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U.Va. gets $7 million grant to study polycystic ovary syndrome

U.Va. gets $7 million grant to study polycystic ovary syndrome
Staff Reports • September 21, 2009

"Childhood obesity has been blamed for a number of medical conditions affecting too many American children. Researchers at the University of Virginia School of Medicine have received a $7 million U54 Center Grant from the National Institutes of Health to examine yet another condition believed to be related to obesity: polycystic ovary syndrome..."

"We already know that signals coming from the brain and the pituitary gland to the ovaries are abnormal in girls with too much testosterone," Marshall said. "Now we have to prove that the high levels of testosterone are present before puberty and if these high levels affect the way girls go through puberty. Then we hope to learn how to prevent it from occurring."

To read more Click here

Pointing fingers: Taking the "easy out" with obesity

Dr. Ann Childers and I had an interesting twitter conversation (twonversation?) the other day. It went like this:

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AnnChildersMD I once saw a child who, at age 6 years, weighed more than 90 lbs. She ate a high carbohydrate diet, and drank a can of soda every day. 5 days, 22 hours ago from web

staticnrg @AnnChildersMD Lots of kids do that and don't weigh 90 lbs. Not healthy, but there is more at play than just food w/ a 6 y.o. 5 days, 22 hours ago from iTweet in reply to AnnChildersMD

AnnChildersMD re: prior tweet Her parents were poor, and soda is cheap (except for the medical bills). Children drinking soda is accepted in our society. 5 days, 22 hours ago from web

AnnChildersMD Nearly all my obese patients drink sweetened sodas. Ones that don't are ex-soda drinkers, looking for a substitute. 5 days, 22 hours ago from web

staticnrg @AnnChildersMD How many of your "non-obese" patients drink sweet soda? Have you asked? Your tweets sound biased to me...are they? 5 days ago from iTweet in reply to AnnChildersMD

AnnChildersMD @staticnrg Personally, I am "biased" against processed and refined carbs. But there is plenty of "bias" in the scientific lit against soda 5 days, 19 hours ago from HootSuite

AnnChildersMD @staticnrg Dietary Sugars Intake and Cardiovascular Health: A Scientific Statement From the American Heart Association http://ow.ly/pzDG 5 days, 19 hours ago from HootSuite

staticnrg @AnnChildersMD Yes, bad for all, but majority of those who do those "bad" behaviors are not obese. Why are we pointing at only the obese? 5 days, 10 hours ago from web in reply to AnnChildersMD

RT @staticnrg Why are we pointing at only the obese? {I was actually pointing at soft drinks <:-}1:36 PM Sep 16th from web

staticnrg @AnnChildersMD No, last night you first mentioned obese--I responded to that & asked if you asked slim patients about soft drink habits. :) 5 days, 7 hours ago from web in reply to AnnChildersMD

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I realize Dr. Childers was well-meaning. I just don't think she and other doctors see what they are really saying. This conversation looks like Dr. Childers assumes only obese children drink "sweetened sodas" and slim children do not. I wish it were that simple. Now, I don't have a study to prove it, but I have observed in my 52 years a lot of folks who drink sweetened soda and are slim. I've also observed a lot of folks who do not drink sweetened sodas and who are slim, and others who are not.

I never drink a sweetened soda unless I'm sick, and was only allowed to drink them as a child about once a year. Oh, and a ginger-ale when sick then, too. I think we are too quick to point at food and drink as a culprit but forget that Grandma fixed sweetened tea, fried everything, potatoes, and more for meals all the time.

Yes, I agree these foods and sweetened sodas are not healthy. My parents were health nuts before it was fashionable, and I grew up eating healthy and drinking non-sugared drinks. Milk was skim, and we had eggs only once a week. Salad was a treat to us in the winter, but we grew the vegetables and lettuce in the summer. My mother taught school and my dad was a corporate manager. We were literate and they were wise. I believe my mother is the reason I kept my weight down even with Cushing's much longer than most. Sadly, that is not the case now, but I still eat like I should, not like I look like I do. My HbA1c is 5.4, and I work hard to keep it that way with high cortisol. (Ask @sixuntilme how hard that is!)

As I drift along in this post, my point is: Why ask only obese patients about sweetened soda? Slim patients have a lot of terrible habits, too. The tweets highlighted above show the point I'm trying to make. Obesity isn't the only problem caused by sweetened sodas. And there must be a factor at play other than the sodas when some can drink them and not gain weight while others drink them and do gain. Or even DO NOT drink them and still gain.

Of course, I must point out endocrine factors. This blog is full of them. Just the posts about bariatric surgery not working for those with endocrine diseases attest for that.

@jensmccabe has tweeted some very interesting things on epigenetics. I've poste a couple of things. Those need to be considered, too.

But my MAIN point in all this (and forgive my tired rambling) is that we are quick to point at the "bad behavior" of the obese without looking to see if that same "bad behavior" is duplicated in the non-obese population. It's poor science. You know what they say about "assume"...

Research is what it is. It's easy to "prove" those who are obese drink a lot of sweet soda. It's not so easy to prove that those who drink sweet soda are obese. Not to mention drinking diet soda may make one obese. How 'bout them apples? Uh...sodas...?

I'm all for eating correctly. I work hard at it. But I think we need to be careful when attributing behaviors to obesity and make sure they are ONLY obesity related. That's what I was trying to say, Dr. Childers.

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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.

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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?

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

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Growth Hormone for Survival: It's not always controversial

"Hypopituitary adults have a reduced life expectancy, with a 2-fold higher risk of death for cardiovascular disease compared with that in the control population, and [growth hormone deficiency] has been considered the underlying factor influencing this increased mortality."

Lately growth hormone has been given a bad rap because of the controversy of its abuse by healthy, adult athletes and body-builders. That's actually very sad when there is a sizable body of chronically afflicted, growth hormone deficient adults. Hypopitiutarism and panhypopituitarism due to pituitary adenomas, surgery as treatment, and/or infarction leaves most Cushing's Disease survivors with growth hormone deficiency (GHD).

According to recent research, quoted here at Stanford and reiterated by Dr. Theodore Friedman, "GH appears to be one of the first hormones to be lost in patients with pituitary tumors and nearly all patients with two or more other pituitary deficiencies also lack GH."

In a recent issue of Pituitary, a study titled "Effects of 5 years of growth hormone (GH) replacement therapy of cardiac parameters and physical performance in adults with GH deficiency" caught my eye. Although not really news to me, it was nice to see some more validation. The research is outlined exceptionally well, with concise but thorough discussion and analysis.

The bottom line: There may be a slight increase in blood pressure and left ventricular mass with treatment, but this is greatly offset by "positive effects on exercise capacity and maximum oxygen uptake".

Another study states:

...there is no doubt that adult patients with hypopituitarism and GH deficiency have an increased CV risk (odds ratio of 2 for men and 3.5 to 4 for women). "

Improvement of systolic and diastolic pressures, lipid profiles, and plaque formation are also documented. A significant decrease in IMT and CRP were favorable outcomes of GH replacement therapy.

GHD has also been linked to apathy, fatigue, lack of motivation and more. Thus, it becomes not only an issue of mortality, but also an issue of quality of life.

I hope the medical community will educate themselves about GHD. The authors of the Pituitary
study elaborated well:

GHD is associated with hypercoagulability, abdominal obesity, insulin resistance, unfavorable lipid profile, atherosclerosis, increased blood pressure (BP), decreased exercise performance and with reduced pulmonary capacity, left ventricular (LV) mass and LV systolic performance...

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Cenci, M., Soares, D., Spina, L., Lima Oliveira Brasil, R., Lobo, P., Mansur, V., Gold, J., Michmacher, E., Vaisman, M., & Conceição, F. (2009). Effects of 5 years of growth hormone (GH) replacement therapy on cardiac parameters and physical performance in adults with GH deficiency Pituitary DOI: 10.1007/s11102-009-0182-2