survive the journey

My BLAnniversary

survivethejourney@gmail.com (RobinS) — Sat, 18 Jun 2011 11:17:14 PDT

....or my "ReBirthday" as my friend, Nancy, says, was a few days ago on June 16th. It has been a year since I had both of my adrenal glands removed to control my Cushing's Disease.

How am I? Perhaps I'll give you a clue by saying I've been too busy to write this post. In fact, I'm having trouble finding time to blog at all! So, I am good. No, I am great!! I will always have to deal with some of the ravages of Cushing's Disease, but in comparison to what life was like prior to my BLA (bilateral adrenalectomy), I'm SUPERTASTIC!!

Some of the good things which have happened:

I now go up steps most of the time without even thinking about it. (Going down is still a problem due to a former broken ankle and a bad knee on the same side.)
I've lost almost 80 pounds without even trying.
Instead of parking in handicapped parking and using a scooter in stores, I can now park in Timbuktoo and walk all over a store. Wait...I can even tag along with my daughters and walk through multiple parking lots and multiple stores.
I have great hopes now of living to be a decent mother and grandmother. Shoot, maybe even awesome sometimes! (My first grandchild is due in July!)
I don't mind traveling/driving all by myself and do it often. I've made more trips to see my girls (and hubby/boyfriend) in the past few months than I have in the previous 8 years.
My mental state is beyond awesome.
I find myself smiling and singing all the time.
I'm umpteen sizes smaller. (The bad part is all the sagging skin and eyelids. Maybe that can be fixed in the future.) I still have quite a bit of weight to lose.
I don't dread things anymore. I used to dread getting up, walking, and so much more.
I can see my ears when I look into the mirror.
I have skinny ankles. Pretty shoes fit again.
I sleep all night, every night. I go to bed at a normal hour and get up at a normal hour.

I'm sure there are a zillion other things I can write, and I'll think of them later. There is so much improvement and I notice something every day!

Are there any "cons"? No, not in my book. I wouldn't trade my BLA for anything! Sure, I have to take medication every day to live, but I get to control how much "cortisol" my body gets instead of it controlling me. I have been fortunate and haven't had a crisis at all. I haven't had one visit to the emergency department anywhere. Sure, infections throw me into insufficiency pretty quickly, but the high side of that is I know I have an infection way before most folks would.

They say a picture is worth a thousand words. I'm going to let these pictures say the rest for me about the cyclic nature of my Cushing's Disease and how long I had it:

Don't I look like a grandma in that last one??? ;) I don't know what I was thinking with some of those hair styles.

Read more about episodic/cyclic Cushing's:
High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing ’ s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing ’ s Syndrome Requires Multiple Testing

Postlude:

Thank you, Dr. M. for finally realizing in 2005 that what I had was endocrine and for sticking with me. Thank you, Dr. Friedman, for believing me and listening to me, for making me a partner in my health, and for testing me. You saved my life. Thank you, Dr. Chiang, for trusting Dr. Friedman and for being the most caring doctor/surgeon I've ever met. And most of all, thank you Mary O'Connor, for all you do to spread awareness of Cushing's Disease/Syndrome. You helped me find my life again. I love you. I hope all of you see this so you can see what a wonderous work you do.

This would not be complete without thanking my family. My daughters have been my lifeline. They took two weeks out of their lives and lost vacation time just to take me to surgery and stay with me. Prior to that, they were here with me when I needed them, helped me do so many things, went with me on trips to see Dr. F, and so much more. I love you dearly, my daughters, and love the women you are.

My parents took care of me after surgery, finding any treat they could, cooking anything they could to help me find something I could eat. They took me for labwork, helped me find DHEA, went to the store at odd hours to get me some gatorade, and so much more. I love you, Mother and Dad. And I thank you.

Thanks to all my Cushie folks who support each other. I'm sorry you have Cushing's, too, but I'm proud to have met you, shared the triumphs and the pain with you, laughed and cried with you. Hugs.

In memory of Sarah

survivethejourney@gmail.com (RobinS) — Tue, 14 Jun 2011 17:46:51 PDT

Sarah recently had surgery to remove a tumor from her pituitary gland. This was to treat Cushing's Disease. She died today. I hate this disease.

Sarah was only 28.

You will be remembered, Sarah.

Guest Post: The Other Side of Cushing's -- The Caregivers

survivethejourney@gmail.com (RobinS) — Mon, 28 Feb 2011 04:13:21 PST

by Judy Kennedy

I have an (almost) ex husband & two children who all suffered from Cushing’s Disease. While they all had had symptoms for years, Justin was the first to exhibit signs of a true medical problem. Actually, it’s only with hindsight that I know the kids had had symptoms since birth & that Bill’s symptoms had been a constant presence in our lives.

I think I’d been looking for answers for Justin’s medical problems for about a year & a half and was convinced he had Cushing’s when I started noticing Jess exhibiting some of the same symptoms. The kids were partway through their testing before it occurred to Bill that he probably had the same thing.

I was immediately convinced it must be genetic although I was originally told there was no genetic link with Cushing’s. Since then, I know of several other families that have multiple members either diagnosed with or testing for Cushing’s. There is also research studying a genetic connection. In fact, my family is participating in a study.

It’s possible that I have a much different perspective since I’m on the outside looking in when it comes to this disease. I have no idea what it’s like to have Cushing’s but I know very well what it’s like to live with Cushing’s. It’s hell. I’m not trying to discount how a Cushing’s patient feels, I’m just trying to show the other side. So if it sounds like I’m making this all about me, I am. But keep in mind that I am very sympathetic to my family & all Cushies. I just happen to be talking from my point of view.

Many Cushies had children before they knew they had the disease. What I don’t understand are the ones who are so intent on having a child after they know they have Cushing’s. I understand the desire to have a natural child but at the same time I’m not sure I would want to risk passing on this disease. I’m guessing that not all cases are genetic but would I want to take that chance?

Many of you reading this know firsthand what it’s like to have Cushing’s. Would you wish that on your future children? Can you even imagine what it’s like from a mother’s perspective? It’s always worse to watch your children be sick than to be sick yourself. If it would have been possible I truly would have traded the disease for myself and given my kids their health. But I don’t have that power.

Know that the disease affects everyone differently but I did notice a lot of similarities in my family. Maybe that part is genetic also. Other families may have different experiences. I notice that I’m using a lot of disclaimers!!

Imagine what it’s like to have suicidal children, one much more so than the other. I went through months where upon leaving the house in the morning I had no idea if I would ever see my son alive again. It’s not good to hear your fourteen-year-old daughter that can barely drive, talk about thinking of taking the car & leaving in the middle of the night. It’s heartbreaking to find your seventeen year old son curled up under his desk sleeping some mornings, pillows piled in front of him. Was he keeping himself in or something out? It torments the mind to wonder what his thoughts were that lead him to that.

How awful of a mother am I that just seeing my son’s number on caller ID would make my blood run cold (that isn’t just an expression) and dread fill my heart? I hated that I reacted like that but for a few years it seemed he only called when he had problems, medical or otherwise. I learned to cope one crisis at a time and tried to think ahead to what else could go wrong.

Watching a child’s personality change within seconds was very unnerving. One minute things seemed fine and the next it was as if I could feel the anger & hate just radiating from their body. I tried to be an invisible person in the house. I was always the target for everyone’s anger. Even knowing it was part of the disease it got really old. I felt like a stranger in my family. Although I felt like I was doing all I could to get answers for them I sometimes felt like they held me responsible for their problems. It was my fault they had to test.

Even now after they all have a cure (a very relative term) things aren’t easy.

I also notice that there are Cushies who have some Cushie looking children & they don’t seem to notice. I sometimes wonder if they just aren’t ready to deal with it yet or if they really don’t notice.

I’m hoping I didn’t offend anyone. This was just some observations from a mother’s point of view. I’ve been telling my kids for years that I could easily love adopted grandchildren. While it’s not my decision I hope they take it seriously.

Pituitary disorders may affect as many as 20 percent of the population

survivethejourney@gmail.com (RobinS) — Fri, 05 Nov 2010 16:45:44 PDT

Article found here: Pituitary gland problems have many symptoms

Veterinarian vs. MD: A not-so-funny funny....

survivethejourney@gmail.com (RobinS) — Fri, 06 Aug 2010 13:13:01 PDT

A veterinarian friend of mine shared this with us on the Cushing's Help message boards. Yes, she has had Cushing's.

I'm interested in how my doctor friends/acquaintances perceive this:

Great Video Explaining Cushing's

survivethejourney@gmail.com (RobinS) — Tue, 03 Aug 2010 23:50:18 PDT

An Analysis of "Preventing Misdiagnosis of Women" (guest post)

survivethejourney@gmail.com (RobinS) — Sat, 31 Jul 2010 13:32:47 PDT

by Jessica Hankins

Introduction:

I am a 34 year old Cushing’s patient, amateur writer, and dedicated volunteer to the service of the youth of the United States. Having a devastating disease such as Cushing’s has not been easy for me. After life-long illness, two failed surgery attempts, losing my job and now having no insurance, it is my hope that this information will help those with endocrine issues find the best care possible, and those that don’t – I hope you understand a little better why so many of us have a difficult time discussing this disease and our mental state.

After my own reading and research, talking to fellow patients and friends, and working with a dedicated endocrinologist, it is my opinion all medical diseases which may cause a psychosocial issue should be ruled out before pursuing a diagnosis of a psychological condition. Many endocrine diseases can be made worse by using medications – sometimes even resulting in death. As health care practitioners, it is your job to rule out complicating conditions. As patients, it’s our job to consider all the avenues possible and to work towards full-time advocacy for ourselves in getting answers.

In the book Preventing Misdiagnosis of Women (Klonof, Landrine), the author quotes a statistic which says 41% to 83% of all people who are treated for psychiatric disorders actually have a physical disorder instead. Briefly, the writer describes Cushing’s Disease, yet does not at all address the issues of focus to which we, as patients, can relate.

It is interesting to note that in this book, the author compares the endocrine system to a symphony of musicians. The hypothalamus interacts as the conductor. The pituitary gland then becomes the baton that everyone follows, and the target glands are the musicians.

Feedback loops are also accurately represented in this model. A musician (the target gland) lets the conductor know that he is performing correctly by his performance. The conductor (the hypothalamus) then can issue new instructions to change something through his baton (the pituitary gland), or continue with the same message.

When an orchestra plays horribly, the problem could be along any step of the way, even though she doesn’t spell this out directly. The conductor could be drunk and send the wrong message to the musicians. Or the musician could have partied too hard the night before and may not be able to stay awake during the performance! So to follow this model, primary dysfunction is a problem with the musicians. Secondary dysfunction is a problem with the baton, and tertiary dysfunction is the fault of the conductor.

Something I didn’t know about anti-diuretic hormone (ADH), but learned reading this book: large amounts of ADH are associated with hypertension. Duh – I could have figured that out if I had been trying! But this causes me to ask the question – could high cortisol affect ADH to cause high blood pressure as well?

This is where we come to my biggest concern about this book. The author states that from her research pituitary disorders are quite rare, and rarely affect focus and mood or can mirror psychological issues. The only disorder she believes comes from the pituitary and is related to psychological issues is hypopituitarism. If she believes that, then perhaps if she understood how pituitary hormones could be hyper instead of hypo, we would be having a different discussion.

The Adrenal Glands/Cushing’s:

I arrived at the discussion regarding the adrenal glands. The writer states that epinephrine and norepinephrine are neurotransmitters and work inside the brain in a variety of ways. What she also mentions is the interesting part, that new theories indicate that those two hormones may be tied to manic and depression issues. Now, if what I have learned is accurate, cortisol is the chaser of these two neurotransmitters, and definitely results in an issue with mood swings!

The writer realizes that Cushing’s syndrome causes a host of psychiatric, neurological and physical symptoms. She also recognizes that the reverse is true, that Addison’s causes these same issues as well. Addison’s disease is discussed in regards to its depressive nature in patients with low cortisol. However, when discussing Cushing’s Syndrome, the author states that 15% of patients with Cushing’s will exhibit “prototypical paranoid or depressive psychosis that includes paranoid or depressive delusions and associated hallucinations.”

This is in stark contrast to the research performed on people with exogenous Cushing’s syndrome, of whom 75% show signs of “euphoria, increased activity level, decreased need for sleep, increased appetite, and increased libido.”

The line between symptoms seems to blur here in anecdotal reality. For those patients looking for diagnosis or have been diagnosed with Cushing’s, there are still issues with a decreased need for sleep, an increased appetite and carbohydrate cravings, and increased activity level. However, many patients are not being diagnosed properly until the physical signs show, and by that time the high cortisol has done its damage, causing other secondary issues such as muscle myopathy, osteopenia and osteoporosis, causing painful muscle loss and bone density issues, respectively.

The book also states that most patients with exogenous Cushing’s do not suffer from the “pressure of speech, flight of idea, expansiveness” or other symptoms. It’s interesting to see these symptoms recognized in writing from a psychologist! Flight of ideas happens to be one of my most uncomfortable issues. As a public speaker and trainer, recalling information and being able to apply it to discussions and questions is a necessity. With Cushing’s, once the information is brought to the front of my mind and I’m ready to use it, the idea will literally flit out of my head and disappear into the ether of space.

I loved this direct quote regarding Cushing’s: “The physical symptoms of Cushing’s syndrome can aid in differential diagnosis but, unfortunately, do not appear until late in the disease. These include weight gain, facial obesity, hypertension, muscle wasting, and amenorrhea. Cushing’s syndrome tends to occur in women (and sometimes in men) ages 20-60 and has no preference for a specific ethnic group.”

The Thyroid:

Hyperthyroidism

Thyroid disorders are covered in chapter two of this book. Again, the data is outdated and only refers to the thyroid hormone thyroxine (T4). The book also states the causes for Grave’s Disease are unknown, but there’s much more research out now days that can be discussed with the thyroid experts.

Hyperthyroidism causes manic and hypomanic episodes, and sometimes even bipolar issues. Attention deficit conditions also can occur. Recent memory impairment (as seen with Cushing’s and Addison’s Disease) can also occur with diarrhea, sweating, increased appetite with weight loss, and red puffy eyelids. Talk about clouding the picture! If a woman is seen with bipolar issues and medication is not working for her, it’s probably a case of misdiagnosis. The key here is that when medications are give (especially tricyclic anti-depressants and lithium), these drugs make things worse, not better. The same also goes for hyperthyroid patients and drugs like Haldol used for anti-psychotics. This author cautions that antipsychotic drugs can and will result in fatal dystonic reactions. That’s an “in-your-face” indicator that something isn’t right! Paying extra close attention to physical signs and symptoms is key to making the correct diagnosis in hyperthyroid patients, and that includes asking questions regarding the aforementioned issue.

Hypothyroidism

Hypothyroidism is one of the diseases which can be affected by a dysfunction in the hypothalamus, the pituitary gland, or in the thyroid itself. Unlike other endocrine diseases, hypothyroidism strikes slowly over time, and the symptoms are persistent, but subtle. Most women I know tend to just deal with the symptoms without thinking they are anything out of the ordinary.

The most annoying symptoms include: slowed thinking, impaired memory recall, having to hear things multiple times to comprehend, fatigue and weakness, depression that increases in severity over time, in ability to stay warm, numbness in the fingers, hearing loss, loss of appetite, long menstrual cycles.

Major depression would definitely account for most of the above symptoms, but it is important to note a severely depressed patient should be referred back to their doctor for a battery of thyroid tests to rule out a physical condition before applying psychological techniques! Believe me, most patients would better understand and be open to a physical culprit than having a psychological label over their heads.

This book brings up another interesting point – hypothyroid patients show marked changes when taking neuropsychological tests such as the WAIS Digit Span, the Halstead-Teitan Trailmaking Test, and the MMPI. These changes indicate severe depressive tendencies, but noted the patient only has changes in the depressive information, while the rest of their scales will be normal, itself an abnormality.

According to the literature cited in this book, both kinds of patients should not be treated with anti-depressants, lithium or antipsychotics. Rapid deterioration will follow such drug treatments.

The need to address physical issues accurately before psychosocial treatment is immense. As noted above, if a patient runs into a psychologist or other doctor who would like treat with drugs before running tests for a physical problem, one should trust her instincts and walk away. Physical disorders should be ruled out before pursuing a medical treatment plan for any psychological issue, especially with the overlap in symptoms we as endocrine patients find.

"Laugh, Sing, and Eat Like a Pig", a must-read!

survivethejourney@gmail.com (RobinS) — Fri, 30 Jul 2010 21:04:52 PDT

I got a package from e-Patient Dave deBronkart!! W00t!! It made my day/night! Frankly, I got it before today, but I, ahem, did not look on my front porch for a few days. I don't go in/out that way. At least it was tucked up under the overhang nice and dry.

What is it you say??? Why, it's his new book, "Laugh, Sing, and Eat Like a Pig". I am about 1/3 through it now, and I'd be further but I have to stop to laugh out loud or cry or both at the same time. I need a new box of tissues.

Folks, you need to read this book. Dave has already taught me so much about why things are as they are in the healthcare system. I've learned so much from him in so many ways, but this is his personal account while dealing with cancer. He talks about what an e-patient is: empowered, engaged, equipped, and enabled. And you Cushie's will get a kick out of his "Four Early Lessons in Patient Empowerment":

It's up to me.
When your instincts say scram, scram.
If they think your feelings are YOUR problem [emphasis mine], you might want to find someone else
It's worth traveling to find a doctor you work well with. [My favorite]

Invest in the book, a box of tissues, some healthy snacks, and a good drink. You won't want to miss it. I understand so much better what once just made me angry. Knowledge is power, but understanding is the tool for change. Dave is changing how people think in healthcare, and that is more than powerful. It is awesome.

Dave, thank you for teaching me so much, but most of all, thank you for being my friend.

(Reposted from 365 days with Cushing’s Disease)

The Retrospective: Part IV (a guest post)

survivethejourney@gmail.com (RobinS) — Thu, 22 Jul 2010 22:53:34 PDT

What Could Have Been Better

[This is the fourth post of a multi-post series. Part I, Part II, and Part III were posted earlier this week. ~Robin]

by Vivant Malgré*

This is unfortunately going to sound like a rant. Because it is. Because we learn from the criticism and it is more often than not unpleasant. That is part of how we learn to do better.

The local endocrinologists:

Local endocrinologists are a mixed bag – some are great, some not so much. I feel for them. I have two requests. First, if I schedule an appointment and say that I have Cushing’s Disease, I expect the endocrinologist to have familiarized him or herself with what the tests are, and their limitations, at the level of say, the endocrine society's clinical practice guidelines, and if not willing to do so, to let me know in advance that this is not within his or her expertise. If you are willing to take on this kind of project, thank you!

If you are going to consult with the big “university guru” about a patient, ask the permission of the patient first and have some idea as the consultant’s actual success rate in accurately diagnosing Cushing’s, or you may be made a fool of by a pathology report. For example, a friend of mine was diagnosed with Cushing’s Disease by an endocrinologist with a specialized Cushing’s practice. She scheduled surgery locally. The hospital endocrinologist (who was not even the patient’s treating physician) decided to question the diagnosis, wanted to prevent the surgery and called in the “big guns” from the NIH. The NIH reportedly recommended that the surgery be scrapped. It wasn’t. Her pathology showed Cushing’s Disease. Egg. On. Face.

I had problems with the NIH – they couldn’t even understand what my test results were and I spent hours, literally hours, trying to explain to the fellow assigned to me what the tests for Cushing’s Disease are. Months into the exercise, the fellow admitted he did not know what the reference ranges were for the tests, much less what was diagnostic. When I complained, the more senior doctor still couldn’t figure it out—an author of the guidelines, no less. I’m not the only one. See this blog http://www.shouldhaveseenit.com/ and this blog http://missdiagnosis-rene.blogspot.com/ for others with pathology proven Cushing’s who were turned away at the NIH. Just because someone has a big name doesn’t mean that they can diagnose their way out of a paper bag. By my count, NIH is 0 for 5. Not a great average. But also not much different than the other major “big name” teaching hospitals with a “pituitary” practice. Do some due diligence before asking someone’s opinion or referring a patient.

The Research/University Endocrinologists:

For this group, I frankly have nothing kind to say.

One, it is not fair to either me or their trainees to assign me to their untrained fellows. For some reason, the research university endocrinologists think it’s a great idea to delegate the patient history and physical exam of a Cushing’s patient to some green fellow. The proper diagnosis of Cushing’s requires a careful history, a careful physical exam, and careful analysis of lab results by someone who knows more than a thirty second scan of the wiki on Cushing’s. With one notable exception, every single fellow I have seen has been completely incompetent – and it is not their fault. It takes a substantial amount of work to be familiar with the body of knowledge necessary to understand Cushing’s – I know because I have done the work myself.

Second, the Cushing’s Disease diagnosis process resembles 1960’s, pay-$1000-for-a-toilet-seat weapon development.

I consult on government acquisitions. In government acquisition, developers try to balance four things: schedule, money and risk (which includes quality) to get the best solution. You want no risk/perfect quality, its going to either take you a long time or cost you a lot of money. Or both. And if you take long enough on schedule so that you can have a theoretically “perfect” solution, you may end up with obsolete technology or dead soldiers who really could have used a less prefect version of what you were working on. You are looking for a balance. As someone who worked on development programs that ran into the billions, you also learn fast that certainty and data cost money. Tests cost money. The number of tests needed to prove 98% certainty can costs exponentially less, and can have substantially less “cycle time” than testing and manufacturing to a 99.999999 percent level of certainty.

In other words, you can spend a ton of money for something that is “perfect” and you perfectly know that it is perfect – and take so long doing so that its purpose is long gone and that it is unaffordable to build. Or spend something you can afford and be 98% sure. We always were very mindful of the level of “perfect” being required – too low and you have things exploding where they shouldn’t; too high and you will waste money studying something you can’t afford to use.

The research endocrinologists want years of testing, with perfect test results, before putting a diagnostic toe out. Early in the process, I looked at my test results, the good and the bad, the studies that had validated the tests in question and made some rough and ready calculations as to the odds that I had Cushing’s or not. It came out to something like a half billion to one in favor of diagnoses. I played with the assumptions. The odds were still eye-popping. Yet the big-wig endo at UVA saw fit to cancel my surgery, over the objection of the surgeon, in favor of “gathering more data.” To me, it’s like refusing to diagnose breast cancer until you are “sure” it is cancer by waiting until it metastasizes. Because after all, benign tumors don’t metastasize. Who cares if the certainty of the diagnosis comes at the cost of killing the patient?

Why did this doctor want more data? The cynical part of me thinks she just wanted the data so that I would be an appropriately validated patient for her latest study. Maybe she was just not very competent. Maybe she had a bad day (I certainly did). Some might say that is it fear of liability. But as a licensed attorney, my observation is that it would be a heck of a lot easier to sue successfully a doctor who does not diagnose Cushing’s when the patient has Cushing’s and ends up with a positive pathology report than to succeed in suing a doctor who has treated a person who ends up without a positive pathology report. One can always argue that the pathological tissue got caught in the sucker.

But I continue to see University endos demanding what is frankly, an insane amount of confirming tests over an unjustifiably long period of time. The testing done by any other doctor is never accepted and is instead nitpicked into oblivion. The cost of my testing and retesting could have paid for vaccinations for hundreds of children. It could have provided a year’s worth of medical supplies for an inner city clinic. And yet I had doctors who thought I should spend years more of these costs to “prove” what was obvious (and proven by pathology). I had Cushing’s.

I think that part of the cause is an irrational view of what is medically acceptable risk. Laparoscopic bilateral adrenalectomy is a well-studied treatment for Cushing’s Disease with a mortality rate of 0.2% -- less than gallbladder surgery. The mortality rate for transphenoidal pituitary surgery is less than 1%. By comparison, the 90 day mortality rate for a revision hip replacement is reported as over 2.5% and the one year reported mortality for gastric bypass at the Mayo Clinic is 0.5%. No reasonable doctor would, under any normal circumstance, require a patient undergo years of testing at six month intervals before a referral for hip replacement revision or gastric bypass, both of which are routine surgeries in this country and both of which typically treat maladies less serious than Cushing’s. [Robin’s note: The mortality for not treating Cushing’s Disease is huge. The mortality risk from surgery is directly proportional to the time it takes to diagnose and treat a Cushing’s patient. See recommended reading at the end of the article. ]

After my first surgery, it was clear that it was not successful – by the published criteria. I went to the NIH because they had an experienced adrenal surgeon and my preference was an adrenalectomy. As noted, for more than half a year, I battled with a completely hapless fellow who could not manage to keep my test results straight and frankly admitted that he neither knew of the tests nor of the correct reference ranges. I elevated my concerns. What I was told was:

“We think that CS is only clinically important when there are significant increases in cortisol over enough time to cause clinical problems.”

At that point, I had had clinically elevated cortisol for over four years. My blood pressure was jumping to levels that my neurologist said were “dangerous.” My fatigue prevented me from working. Labs showed that I was losing kidney function. I had had two rounds of septic infections. I had clear signs of bone loss and had a fracture from a very minor trauma. I had a hump and brightly red checks. I was 100 lbs overweight, even though I had previously been a regular swimmer. I had lost substantial amounts of muscle and could not walk normally. It’s still not clear if the “scientist” in question had repudiated her previously published work as to the criteria for evaluating Cushing’s or did not think I had “clinical problems.” I could not get a straight answer. My labs were diagnostic, per her own published criteria. If these aren’t enough symptoms, I hate to think of how sick one would need to be for this doctor to think it “clinically” relevant.

I was further told:

“I would not recommend any treatment, particularly ketoconazole or adrenalectomy, both of which can cause significant problems, including death. The benefit doesn’t exceed the risk…” (emphasis added)

As I said at the beginning of this series, I am a little over a month past my bilateral adrenalectomy. I am beginning to lose weight. Six months of declining kidney function tests appear to be reversing. The fatigue, while there as I weaning from cortisol, is improving. I am feeling more optimistic about life. The grey seems to be lifting. I have not had a single episode of malignant hypertension since my BLA. I can breathe. I think that the benefit well exceeded the risk.

The sad thing is that other doctors still consult with this “expert,” undoubtedly to the detriment of many.

I don’t know why Cushing’s is so stigmatized by the medical profession. Maybe it’s prejudice against fat people. Maybe it’s that doctors just don’t think that the lives of women count for much. Or maybe they wring all of the compassion out of endocrinologists before they are board certified. The reality is that there are more doctors who perform late term abortions than will promptly diagnose and treat Cushing’s Disease. I would not have had to travel as far to have had a 26 week pregnancy terminated than I had to go to have a life-threatening tumor removed.

So much for my right to choose.

[Robin's note: The female-to-male incidence ratio is approximately 5:1 for Cushing's in some studies. Other studies say 15:1.]

*pseudonym

To read more:
Mortality in Patients Treated for Cushing’s Disease Is Increased, Compared with Patients Treated for Nonfunctioning Pituitary Macroadenoma
"Conclusions: Mortality in patients previously treated for Cushing’s disease is increased, compared with patients treated for NFMAs. This implies that previous, transient overexposure to cortisol is associated with increased mortality."

Mortality in Patients with Pituitary Disease
Control of cortisol secretion and GH hypersecretion (and cardiovascular risk factor reduction) is key in the reduction of mortality in patients with Cushing’s disease and acromegaly, retrospectively...Although standardized mortality ratios in pituitary disease are falling due to improved treatment, mortality for many conditions are still elevated above that of the general population, and therefore further measures are needed.

Blood coagulation and fibrinolysis in patients with Cushing's syndrome: increased plasminogen activator inhibitor-1, decreased tissue factor pathway inhibitor, and unchanged thrombin-activatable fibrinolysis inhibitor levels.In conclusion, we found some important differences in the hemostatic parameters between the patients with CS and healthy controls. Increased platelet count, fibrinogen, PAI-1, and decreased TFPI levels in these patients represent a potential hypercoagulable and hypofibrinolytic state, which might augment the risk for atherosclerotic and atherothrombotic complications. This condition may contribute to the excess of mortality due to cardiovascular disease seen in patients with CS.

Cortisol excess linked with increased mortality rate
According to the researchers, these findings imply that overexposure to cortisol is associated with increased mortality, and the mortality seems to be correlated with the duration of overexposure. “The effects of transient cortisol overproduction may not be reversible with respect to certain biological properties that influence mortality,” the researchers wrote.

Bilateral adrenalectomy: low mortality and morbidity in Cushing's disease
Bilateral adrenalectomy, in experienced hands, is a relatively safe and useful management option in patients with hypercortisolism. Growth of a pituitary adenoma post-operatively is now the most worrying complication.

Cyclical Cushing's syndrome: an update
Cyclical Cushing's ... is a pattern of hypercortisolism in which the biochemistry of cortisol production fluctuates rhythmically. This syndrome is often associated with fluctuating symptoms and signs. This type of case was initially thought to be rare. It has, however, recently been recognized as occurring much more frequently. The phenomenon is important because it can, if not recognized, lead to errors in diagnosis and differential diagnosis of the syndrome and in assessment of therapeutic outcomes. All of these can have very serious clinical consequences.

Limitations of nocturnal salivary cortisol and urine free cortisol in the diagnosis of mild Cushing’s syndrome
The features of endogenous hypercortisolism (especially, when mild) are protean and coincide with many common clinical conditions like the dysmetabolic syndrome (1, 2). Screening studies in high-risk populations have discovered unsuspected CS in as many as 2–5% of patients with diabetes mellitus (3–7) and suggest that "mild" CS is more common than previously appreciated.

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

The Retrospective: Part III (a guest post)

survivethejourney@gmail.com (RobinS) — Thu, 22 Jul 2010 11:31:40 PDT

What I Have Learned Along the Way
[This is the third post of a multi-post series. Part I and Part II were posted earlier this week. ~Robin]

by Vivant Malgré*

There’s the Cushing’s that doctors talk about and there’s the Cushing’s that patients know. When I go to most doctors or read about Cushing’s in the medical literature, there is a belief in a disease called Cushing’s where all patients gain 100 lbs in two months, they all have huge red stretch marks everywhere, they all have acne, hair that shouldn’t be, can’t stand from a squatting position, raging diabetes, raging high blood pressure, huge bruises everywhere, gigantic back humps and it’s all very dramatic. And the test results are all consistent, UFC’s are great and dexamethasone testing is nearly foolproof. I would estimate that during my pilgrimage in Cushing-land, I have gotten to know at least two hundred people with pathology/biochemically proven Cushing’s. [Robin's note: the Cushing's Help boards host thousands, and I believe this number is much higher than the author realizes.]

I have yet to meet anyone who fits the mold that the specialists seem to be looking for. In fact, several years ago, when a family member was on more than 100 mg of prednisone a day (20 times the biological baseline) she did not have the severity of symptoms that Cushing’s specialists seem to want to see. This kind of Cushing’s is indeed very rare. In fact, I wonder if it exists at all. And I wonder where all the patients are that have been treated by the “Cushing’s specialists” at the big universities. Because out of the literally hundreds of Cushing’s patients I have met on this journey – either in person or online, I have never met, nor even heard of, a real person who has been successfully treated at the “big name” clinics such as UVA, Cleveland Clinic, NIH, Mayo, etc. etc. It’s very hard to believe that with the very active on-line Cushing’s community that none of their patients would be seen. So, one really wonders who they are treating.

The Cushing’s that patients know is different. The weight gain is a problem, but it can be much more insidious -- twenty pounds in a year, year after year, no matter what you eat or how much you work out. The second biggest symptom seems to be sleep – insomnia, poor quality, daytime sleepiness. The muscle weakness can be more subtle – steroids after all do a really good job of masking pain – so it’s more like not being able to wear heels, not being able to go up stairs, lacking hand strength, stopping doing things you like, such as hiking or running or even going to church or socializing, and then housework and cooking and cleaning, just because it is all just too much effort – and not because you are depressed. It’s hanging onto the cart to get through the grocery store when you are only thirty. It’s feeling old when you’re not. It’s not being able to get over colds, for months on end. It’s weird rashes, weird digestive problems, weird heart palpitations. It’s acne when you are long past puberty. It’s turning from an outgoing, sunny person to a crabby recluse and not knowing why. It is health and wellness lost in teaspoons, sometimes so slowly it can be hard at times to put your finger on what is gone. Until it all catches up and you realize. Finally, it is familial. If you really want a good description of Cushing’s and understand the cutting edge of medical treatment for it, read the veterinarian sites. Vets know more about Cushing’s than almost all of the doctors for humans. The dogs and horses have more treatment options, too.

Cushing’s testing -- the practical side of it. More is better. Frequent is better. Dexamethasone tests only work in medical journal articles – and they are wrong most of the time. Positive test results mean tons more than negatives – if you don’t believe it, do some statistical modeling and it becomes pretty obvious pretty fast. Always get lab results and take the time to understand what they mean and what the right reference ranges are. Normal does not necessarily mean all is right and a lot of doctors never even read the results. Even if they do, a lot of doctors don’t pay attention to anything other than whether something is marked with an H or an L.

Almost nobody gets high results on all three of the major Cushing’s tests – salivaries, midnight serums and UFCs. Midnight matters. Outpatient midnight serum cortisol testing rocks – it will tell you more, faster than any other test. Salivaries are typically the hardest of the “big three” for folks to get a diagnostic number on – which is concerning given that so many doctors are moving in that direction. MRI’s are as good as the person reading them – for mine, all of the neurosurgeons and the specialized radiologist who read them found the tumor. The local endo’s radiologist, after the fact (and after the tumor was removed) wanted to argue it anyway. Gotta wonder.

The screening algorithm for Cushing’s is completely backwards. It starts with dex testing which is positive only with the most advanced cases (and has the most false positives for other diseases), followed by salivary testing and UFCs, which also have a lot of false negatives. Most endocrinologists won’t even do the most accurate, lowest cost, and least likely to miss test – midnight serum cortisols. And the threshold between normal and suspicious (i.e., keep testing)– is five. Vets use cortisol/creatinine ratios to diagnose animals, and for the very few people-doctors out there who use the measure, there seems to be a really good success rate.

Cushing’s treatment. It’s really easy. The sooner the better. You can’t get back time. You sometimes can’t take back the damage. The doctors who want you to wait another six months, or a year, or two years – they don’t live your life, they aren’t missing time with their kids, they aren’t paying your bills. So they have no right to ask you to give up years to make their lives easier in terms of making a diagnosis. To say it again – you don’t get back time.

And as a warning for patients who are facing surgery. Those steroids really do mask a lot – that is why the orthopedists are so steroid shot happy. It was quite the shock after my first surgery to realize that somehow my leg muscles had completely disappeared on me, as well as my arm and shoulder muscles. Poof!

Coming tomorrow: What could have been better

*pseudonym

The Retrospective: Part II (a guest post)

survivethejourney@gmail.com (RobinS) — Wed, 21 Jul 2010 06:00:06 PDT

[This is the second post of a multi-post series. Part I was posted yesterday. ~Robin]

by Vivant Malgré*

What Worked

First of all, the Cushing’s community: The Cushing’s patient community is remarkable. Sure, we can be cranky bunch at times (can you say too much steroids?), but the amount of high quality information to be learned from the collective community is astonishing. In my last job, one of my employer’s specialties was implementing knowledge management systems. I was at that time skeptical. I continue to be amazed by the depth of knowledge possessed by the members of this community and how effectively it is shared. My experience is that I would be more likely to obtain accurate information and advice based on the most recent research from a long term member of the Cushing’s community than from an endocrine fellow at NIH or any of the research institutions I have been at. The Cushing’s community has pointed the way to innumerable studies, reference tools and practical experience. And for that I am wholeheartedly grateful.

The Cushing’s community also provided encouragement at critical moments. I remember one person, very early on, passing on the advice of not seeking help in a serial fashion from endos – don’t see one doc for six months, give up, see another doc for six months, move on, etc. Keep your options open until you have actual help in hand – even if it means seeing multiple doctors at the same time. That advice probably saved my life and most certainly my livelihood. Folks steered me to which doctors were helpful; which doctors were a waste of time. Sometimes I pig-headedly did not listen, to my own detriment. I have seen, more than anytime in my life, the value of a group in problem solving. Frankly, it’s been a testament to the information age to see a bunch of Midwestern housewives, some without college degrees, eat the lunch of the Harvard medical school grads. As a self-professed education snob, it’s been an eye-opener.

Second, getting to a high volume Cushing’s specialist quickly when I started to get really sick. I only saw three of the plethora of endocrinologists before actually getting my initial diagnosis of Cushing’s disease. That endocrinologist had a very organized, compressed testing regimen. He also had a practice almost exclusively limited to Cushing’s patients. My test results were consistently high, he discovered the growth hormone deficiency and he was able to cut to the chase so that I was able to document why I could not work, and therefore maintain my livelihood.

Third, sticking to my guns about what treatment I wanted. The endocrinologist who diagnosed me typically will have the patient have a second operation almost immediately after the first if initial testing doesn’t indicate that the surgery was successful. I did not feel comfortable with that. It appeared to me that if a first surgery did not work, the price of success for a second pituitary surgery was losing pituitary function. It appeared to me that radiation treatment is pretty thoroughly hated by patients. So, if the first surgery was not a success, I wanted time to figure out what was worse to me – living without a functioning pituitary or losing my adrenal glands. I did not want to be making that decision far from home under the stress of having just completed a major operation. Eventually, my decision was to be adrenally insufficient. It’s not necessarily the right answer for everyone, but I am the one who has to live with it, and so it was important to me to be comfortable that I had the opportunity to weigh the options for myself and make my own decision.

After my first surgery, I wanted my very obvious deficiency of growth hormone treated before making any decision as to whether that surgery was a failure. My local endocrinologist clearly did not want to prescribe growth hormone. He dragged his feet on tests. He twice tried to put me off agreeing to write the prescription. He had his fellow stonewall in getting the prescription approved. He dragged his feet on testing for a recurrence – and if I had listened to him, I probably would have been in kidney failure by the time he got around to paying attention. He was less than honest and far from helpful. I called him on it and then I went to a doctor who would treat me appropriately. The medication has been the difference between living in the dark and having light. I can walk. While I am sorry that I wasted nine months of my life fighting with him for treatment, I am glad that I had the sense to persevere.

Fourth, keeping my life going as much as possible and charting my progress on other fronts. I was determined to live as much of my life as possible even if I did not feel well. I bought a house. I got a dog. I passed the bar exam. I traveled -- I saw friends I had not seen in decades, I put my feet in the Pacific Ocean, visited the Grand Canyon, took in the changing leaves of a Vermont fall, and saw a lot of the country. I spent time with my family. I learned more about astronomy – including radio astronomy. I kept lists. Lists of things to do, of things to accomplish. Plans to make. I kept dreaming. When I got done with a list, I made a new list and I made sure some of the things from the old lists went to the new list, so that I always kept in mind what I had already accomplished.

Fifth, my insurance. Guardian rocks. Big time. They have messed up exactly two claims in all of this, and immediately fixed them when I called. When doctors refused to give me critical test results, they gamely sent me the bills for them and politely inquired as to whether these items should be reimbursed or not. My disability insurer has been great, as has been the Social Security Administration. Knock on wood.

Coming tomorrow: What I Have Learned Along the Way

*pseudonym

The Retrospective: Part I (a guest post)

survivethejourney@gmail.com (RobinS) — Tue, 20 Jul 2010 15:37:16 PDT

[This is a multi-part series which will be posted daily the rest of this week. Robin]

by Vivant Malgré*

In my old job, when we got done with a project, our practice was to do a retrospective. What went right? What was learned along the way? What went wrong or could be done better? What would we pass on to those who might pass this way tomorrow?

A month after what appears to be a successful bilateral adrenalectomy with positive pathology (hopefully the beginning of the end of my Cushing’s “project”) this is my retrospective.

I have had Cushing’s for at least fourteen years. I know that it dates back to 1996 because I used to sew and there came a day when I could not alter a jacket to fit properly. I had this strange hump at the base of my neck and I could not find directions on how to fit it. I was a size ten but would bounce up to a size fourteen and back again. I gave up sewing.

Looking back, the next set of symptoms were probably occasioned by my adrenals being affected – I had signs of an autonomic disorder, could not keep down food at times and other digestive issues. And the beginnings of fatigue and the emotional issues that come with an HPA axis gone awry. I don’t think I was a very pleasant person.

The last round of symptoms were probably due to the loss of my growth hormone – no immune system, fatigue so bad I could not stay awake, and severe muscle weakness to the point that I could not lift a single pound through a range of motion. The worst symptom was the social isolation and apathy that comes with the loss of growth hormone. It was as if any social interaction is like the worst cocktail party you have ever been to. For someone who has always been outgoing, that was the biggest loss.

I have had pituitary surgery and a bilateral adrenalectomy. I have been on disability for more than two years and I am now facing completely rebuilding my life. I don’t know what will come back and what won’t.

In this journey, I have been seen by sixteen different endocrinologists and have visited six major research institutions. I sought treatment in seven different states. I have logged enough flying miles to circle the globe. I have about four inches of medical tests that I am gladly packing into storage, since whether those tests are “good enough” proof of Cushing’s is now a moot question. I am moving on.

Coming tomorrow: What Worked

*pseudonym

I am offended.

survivethejourney@gmail.com (RobinS) — Wed, 30 Jun 2010 22:20:59 PDT

In February, the Cushing's Support and Research Foundation (CSRF) hosted a Cushing's Patient Education Day. I was not able to go either physically or financially at the time. This was sponsored by an unrestricted educational grant from Corcept Therapeutics.

Although CSRF asks its members to pay for full membership, presentations with full audio from this day have been uploaded for free perusal by anyone, which is commendable. While going through talk 8, Cushing's and the Quality of Life, I was dismayed to find the following phrase in slide 6:

I find this OFFENSIVE and INSENSITIVE.

No one WANTS any disease. No one wants breast cancer. No one wants MS. No one wants a cold. What those who are still undiagnosed want is someone to test them sincerely and figure out what is wrong! That's all I wanted for 25+ years.

Can you imagine someone giving a similar presentation to a room full of breast cancer survivors/patients and saying, "of course, there are some people who WANT TO HAVE BREAST CANCER"?

Corcept Therapeutics, whose primary business seems to be the development of mifepristone as a possible treatment for Cushing's, ought to know better than to underwrite something like this. CSRF should know better than to support it.

Someone owes me and thousands of other Cushing's sufferers (diagnosed and undiagnosed) an apology. I am offended.

UPDATE: An apology from Corcept Therapeutics was sent to an offended (former due to BLA like me) Cushing's patient who pointed it out to them:

Thank you for your feedback on the presentation. We were not aware of the comments that you relayed, but they certainly do not represent the views or position of Corcept and our employees. We will carefully consider this issue as it relates to future Cushing's Syndrome Research Foundation (CSRF) or other events which Corcept sponsors.

Best regards,
Caroline

Caroline M. Loewy
Chief Financial Officer
Corcept Therapeutics
149 Commonwealth Drive
Menlo Park, CA 94025

A Rant my Cushie Friends Will Understand (a guest post)

survivethejourney@gmail.com (RobinS) — Tue, 22 Jun 2010 18:24:08 PDT

by Susan Grayson

I don't post on my favorite website (http://www.cushings-help.com/) much anymore -- Cushing's overload, perhaps?? But I do browse the forums quite a bit. A member made this statement:

"Today my husband asked how I was feeling when he came home from work. When I started to tell him he said, 'How could this just start again all of a sudden?' I told him I had been having problems but I just didn't say anything. People who don't have to deal with this stuff just don't get it, sometimes even when they see the results right before their eyes! It is just so hard sometimes."

That really hit home with me. I just know that will be what my DH will say when, and if, I ever decide to go for the BLA. "Why would you want to have such a drastic surgery? You're doing so well! Things are so much better since your pituitary surgery? You'd feel better (or your blood pressure would be better, you'd sleep better, you'd look better, you'd [fill in the blank] better) if we got more exercise and started dieting." He might not say those all at once, but he'd say them. And you know why that is? Because, like my other Cushie friends, I've been sick for so long, and I've gotten so used to feeling mediocre that it has become "normal". And yes, I do feel better than I did before my first surgery. The tumor debulking did some good. The growth hormone has allowed me to walk without wincing, dry my hair without resting half-way through, and pull shirts over my head without crying. And like my cohorts in this Cushing's battle, because we feel better than dead, we push ourselves and put on happy faces so that the ones that are close to us really don't know that our bodies are failing us.

I'm going to turn 50 in a few days, and guess what? I can't keep up with my 90-year-old mother. I can't work out in the yard all day like she does ... carp, I can't even clean out my walkway flowerbed unless I do it two hours at a time. She has blackberry vines and goes out twice a day in the Texas heat to pick them. I can't even sit in a chair outside while she picks the berries because I'm too heat-intolerant. My neighbor says "hey, you want to come to an exercise class with me?" Sure I would, but they'd have to pick me up off the floor when I passed out -- exercise intolerance is still with me (although at least I can shop through Costco without passing out now). I want to take my grandchildren to the zoo, but the thought of walking that much scares the dickens out of me. And darn it, I want to buy cute pants. But the only thing that is comfortable anymore is something with a drawstring. I refuse to wear floppy clothes when I go out, so I stuff myself into jeans and smile; all the while the waistband feels like it is going to cut off circulation to my legs. The minute I get home, though, it's back to the stretchy pants.

This isn't normal! I want a 50-year-old's life, not an 80-year-old's life! But I'm too chicken to fight the good doctor, my husband, and my well-meaning family and friends who say "you're doing so well".

Phil's journey with Cushing's Disease (a guest post)

survivethejourney@gmail.com (RobinS) — Mon, 21 Jun 2010 07:29:12 PDT

by Philip Butler

Just thought that I'd provide a little synopsis and timeline of my journey with Cushing's disease.

I have suffered from terrible cluster/migraine headaches since early childhood. Satanic type pain that made me pound my head on the floor or walls. Many times I prayed for death to end the pain. Thankfully I never moved to end it all and now, post-pituitary surgery I have not had much more than sinus or allergy related headaches. Terrible and painful in their own right, it is really not the same.

During my teen years I was active with some sports, soccer and baseball and motocross. I had trouble with electrolyte deficiency and was under doctors' orders to drink a lot of Gatorade and to not push myself.

Very frustrating to a young guy. I was also always underweight and physically weaker than my peers. This despite trying to work out and eat alot of food to gain weight. It never worked.

Later, as I entered my 20s, the headaches continued and strangely I developed some angry dark purple stretch marks on my inner thighs. Still my doc told me that it was from being physically active, motocross and weekend soccer matches.

I did not begin to gain weight until my middle 30s, I was always a seemingly fit 160lbs and active until some point when I put on 30lbs very rapidly. Initially I was appalled but then felt that it was just time for my body to fill out and truthfully, 190 was a good weight for me. In 1998, while on a scuba trip to Bonaire one of my friends pointed out some little purple stripes on my belly. "what is THAT?!" she asked. I hadn't noticed but there on my little floppy belly ( that was new too ) were purple stretch marks.

I began to gain weight, innocently enough it came a few pounds at a time. At 207lbs I began to feel frustrated. I had been going to a gym for a long while and spent my weekends on my dirtbike logging many miles offroad. Salads and lean meats for lunch and dinner and still the weight came. Frightening to me even more so was the weakness and pain in my legs and lower back.

It may seem that the physical aspects of Cushing's disease are terrible, and they are. But worse for me was the change in emotion. I have always been a happy, outgoing and friendly person who enjoys meeting new people. This changed in a way that frightened me. Suddenly I was angry at friends and could fly into a rage for no reason. I began to dwell on perceived slights or mal-intentions. In my head I would argue and tear people apart. I became very jealous of time that my wife spent with other people and became very distrustful. The rage would come and go and despite trying to be rational ( I knew there was something wrong- I didn't want to be angry ) I had no control over the emotion.

In the spring of 2000, I began a new job and after only a few weeks I became very ill. Low fever, cold sweats and unable to sleep for days at time. My doctor ran a blood test and called it Epstein Barr. I missed 9 weeks of work and lost the new job. Later I learned that it was not EBv but rather it was adrenal insufficiency related to a terrible and "rare" disease.

In 2003 I raced my dirtbike for the last time, I was so weak and a new symptom had arrived. Sweat. Profusely. I would perspire to the point of saturating my clothes. During the 1st lap I was so fatigued and saturated with sweat that I crashed. After regaining my composure, I restarted and rode my bike to a spot in the woods where nobody could see me and I stayed there recovering for well over an hour.

The sweat as a symptom was terrible. Night or day, in my sleep I would wake up pouring sweat from every pore. I carried extra shirts and underwear in my car, my truck and in my locker at work and changed frequently. At times to gross out co workers, I would wring the sweat from my underwear like a wet dish towel.

One Saturday morning I was sitting at my desk chatting with some dirtbike buddies on the internet, I looked at my purple stretch marks that had spread to look like purple claw marks from a huge cat and googled "abdominal stretch marks". What I learned changed my life forever. The images that I saw in front of me on the computer were nearly identical to what I had on my legs, belly and sides!

As I researched "Cushing's disease" I happened across a support group website ( Cushing's-Help.com ) and began a quest. (Thank you MaryO for this wonderful resource and support!)

What I learned is that excess cortisol ( a hormone that is necessary for life ) destroys muscle, causes obesity and affects mental health, specifically causing anger and rage in men.

There are many difficulties in actually getting a diagnosis from the medical community. An amazing and disturbing lack of education, prejudice against overweight people, and ego is prevalent.

I did try to get help locally, as my family and friends all seem to question why I ended up in California and Texas for diagnosis and surgery.

However, after 5 endocrinologists who told me that I wasn't fat enough, wasn't sick enough or that Cushing's is "too rare" and I couldn't have it, I listened to advice from those who took this journey before me and went to a doctor who understands and specializes in the disease. It takes months of testing and many multiples of various serum, saliva and urine tests to prove or disprove cortisol excess. Most doctors, even endocrinologists who claim to diagnose Cushing's will not do this. Many times sadly, one test result that shows normal and they will tell you that you do not have it and now go away. Eat less and exercise.

Ultimately I ended up in Los Angeles, California to see Dr. Theodore Friedman, professor and endocrinologist who runs a clinic for difficult to diagnose endocrine cases one night a week, in addition to his day job as professor and lab rat.

9/01/06 - 1st appointment Dr. F in LA

11/06/06 - 1st high, 24hr. UFC 878 normal <105

17-OHC 13.8 normal <10.0

12/07 thru 7/07 - 2nd high, 24hr. UFC 585 normal <105

- multiple highs 17-OHC 11.0 - 19.8 normal <10

4/23/07 - Pit MRI read by Dr. McCutcheon at MD Anderson - abnormal pit showing evidence of right sided tumor

8/22/07 - 2nd appointment Dr. F in LA- cleared for surgery

8/24/07 - 2nd pit MRI

8/27/07 - IPSS at UCLA

10/29/07 - MRI at MD Anderson shows possible left sided tumor

10/31/07 - pit surgery with Dr. McC. at MD Anderson, Houston, Tx. Removed 2mm and 3mm adenomas, (1) left side and (1) right side.

10/31/08 - 35lbs weight loss, feeling much stronger and looking like a cure!

4/14/09 - GH and testosterone replacement

10/31/09 - 40+ lbs weight loss, still looking like a cure!

5/15/10 - still replacing GH and testosterone, weight loss from 266lbs to 223lbs. Physically and emotionally stronger and getting better every day!

Communication is important in healthcare...on every level

survivethejourney@gmail.com (RobinS) — Tue, 20 Apr 2010 20:19:17 PDT

Now, which building is the middle one?

I had an ENT appointment this morning. When I arrived early for my appointment, I went through a gated, (wo)manned station to park. She asked who I was seeing. I told her. She let me through. I had to park in Timbuctoo, and walk into the building and down a hall to find a sign on the door that the doctors there had moved to a new location.

What? Not only was I frustrated, I had a mild anxiety attack and probably overreacted, but high cortisol does that. I'm usually known for being mild-mannered. However, the lady who answered the phone at the number I found on the sign on the door probably did not hear a mild-mannered woman.

She gave a long, quick "come on to the new office and we'll get you in" with directions shot like a ball out of a cannon. I had nothing in my hand on which to write, was holding my cell phone, and got every third word she said. Now in tears, I stopped her and asked her to explain it slowly. I really don't have a comprehension problem. Ok, well, maybe I do, a little, but not that bad, although that's another symptom of Cushing's. I just don't hear as fast as some folks talk.

Basically, she said for me to go back out to the main road where i was, turn left on it, go under the underpass, then turn right. Then she said, "We are in the middle building on the third floor."

I didn't have time this morning, but I went back this afternoon and took some pictures and pieced them together. Which building do you think is the middle building?

Yep, me, too. The middle one.

I could not find a parking place. This morning, the parking lot was full. Remember, by this time, I was an anxious wreck because I have needed this ENT appointment since late February/early March. Getting this one as soon as I did took some pushing and perseverance as it was. I could not figure out what to do, so bless that poor woman who answered the phone yet again. No, not the same woman, but they all were in the same area.

"I cannot find a parking place so I'm going to be even later."

She directed me to the building on the right, which was a parking garage. I didn't know that. I should have noticed, but I had tunnel vision at this point. Not knowing the layout of it, I told her I might have trouble walking the distance to their office. She said there were shuttles, so I could wait on one of those. I found a parking place near the elevator, however, and walked to the building I called the "middle building".

Up to the 3rd floor I went. At the middle reception area, I gave my name and that I was there to see Dr. D.

"You are in the wrong building."

That was the proverbial straw. I was beyond fatigued, anxious, red-faced, and out of my comfort zone. I am used to knowing where I have to be and being prepared before I get there so I don't have situations my Cushie body/mind don't handle well. I had none of that in this situation.

I cried. I hate to cry in public. But at this point it was cry or get mad. My body chose.

They quickly gave me directions, did all the right patting on the shoulder, and I got back on the elevator. I assume they called down to the nice doorman because he was waiting for me, and told me he had a shuttle coming to take me to the back door of the right building and that I should have Dr. D's nurse call when I left so they could pick me back up and take me to my car.

How nice was that? I was shakey and jittery at this point, but by the time the nice gentlemen got me in the shuttle and to the right place, I was doing better.

Why the mistake? Why the problem?

Here is a diagram of the layout. Obviously, the directions were correct, but not from the perspective of "turn right" before one says "middle building". I was looking in the red arrow direction. She was thinking blue arrows. She just forgot I turned before I got to her perspective. Ah, such is life...

...which brings me to how important communication is between any part of the healthcare system and the patient. Most patients are sick patients. Out of all the patient visits to any doctor or healthcare provider's office, how many are wellness visits? I don't have the statistics, but I'm willing to bet the percentage is small.

And how simple it would have been to ask me, when I made the appointment, if I knew their offices were in the current location. Tomorrow is the one-year anniversary of their move, I found out. So, it's been a little over a year since I saw Dr. D. I had no clue. I'm not sure how I was supposed to know.

There is much more to this story, and believe it or not, this was just a small portion of the impact of my visit today. Stay tuned for another post soon on the rest.

Hint: I'll talk about participatory medicine and clinical studies among other things.

Estrogen hormone replacement method affects growth hormone replacement

survivethejourney@gmail.com (RobinS) — Thu, 18 Mar 2010 03:49:13 PDT

According to a study reported on MedPage Today, the method/route of replacing estrogen may affect the amount of growth hormone (GH) needed as a replacement therapy. Many folks with Cushing's are also GH deficient and take GH replacement shots. These main points were made to clinicians:

Explain to interested patients that estrogen replacement in women taking growth hormone supplementation may affect the growth hormone dosing requirement.

Explain that this study did not find that any particular type of estrogen replacement was unsafe.

Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered preliminary until published in a peer-reviewed journal.

Transdermal (vs. oral) estrogen replacement showed a significantly lower dosage need for GH replacement. Also, "there were modest trends suggesting lower triglycerides and LDL cholesterol with the transdermal estrogens."

This study has not been published in a peer-reviewed journal yet, but was presented at a conference.

Senior Medical Advisor says "Don't dismiss 'cyberchondriacs'"

survivethejourney@gmail.com (RobinS) — Fri, 26 Feb 2010 21:36:08 PST

As the internet becomes more and more easily accessible it is perhaps inevitable that patients should try to self-diagnose.
In this week's health opinion column Scrubbing Up, medical law expert Dr Anthea Martin warns doctors against dismissing all web-wise patients as 'cyberchondriacs'.

Read the full article here: Don't dismiss 'cyberchondriacs'

I must admit, I've had this reaction from doctors:"One doctor revealed that when confronted by an internet-informed patient their reaction was "Oh God, how am I going to deal with this?"

Relationships are tough

survivethejourney@gmail.com (RobinS) — Sun, 14 Feb 2010 09:17:49 PST

Relationships are tough with Cushing's, as with many diseases. Sometimes they are tough for the caregivers, spouses, boy/girlfriends, or significant others due to hormonal issues, loss of libido, and cortisol "rages". Other times they are tough for the ill person because the aforementioned can't or won't give the needed support and involvement. Some marriages don't last. A version of the "I didn't sign up for this" phrase is heard often, ignoring the "in sickness and in health" part of the marriage vows.

Relationships are also tough to develop after the illness due to the emotional, mental, and physical changes in the body. Self-esteem plummets as well.

But some relationships grow stronger. And not only those between two lovers, but those between other family members, too. My two daughters, both of whom I am so very proud, are grown and on their own. But they have stood with me, by me, and supporting me all through this illness and in life in general. They gave me this ring a few years ago as a symbol of our love. It has our birthstones, mine in the middle with theirs hugging mine. It is the only ring I wear. I love you, my daughters, and thank you for being there for me.

Happy Valentines Day.

Do I need my data ASAP to be an empowered e-Patient?

survivethejourney@gmail.com (RobinS) — Tue, 09 Feb 2010 16:50:35 PST

When I first googled "endocrine" and my symptoms after being told by my PCP that whatever it was I had was thus related, I found the Cushing's Help support group. It was with the input of the members of the support boards there I found out late-night serum cortisol was one way to test for Cushing's Disease. So, I convinced my PCP to order one for me. She did, but with the caveat "I don't know where you will get this done at that time of the night!". I did convince the large hospital lab to do it for me after calling various labs for two days.

When my PCP got the results, her nurse called with a "it's normal" (left on my voice mail). I didn't question them. Long story short, several months later the same CH support folks told me I should get my records because often they contained information I was never told. I had never questioned anything up to this point. So, I requested and paid for my records from this doctor. Close to $50 and almost 30 days later, I went through them. A lot of things surprised me. One more than anything:

What? I had a 9.7 ug/dL serum cortisol at 11:00 PM?

The lab ranges on the report were for 4:00 PM. Serum cortisol ranges have only been established for 8:00 AM, 4:00 PM and around midnight. Midnight serum cortisol should be close to zero. Since few labs ever draw the midnight serum cortisol, they don't put the ranges on the lab reports. My PCP erroneously assumed the range was correct and my test was normal.

You can see by my scrambled notes on my lap, I was anxious to correct this. I faxed a copy of this report to my PCP with my annotations, and also left a message. She did not accept email. She was shocked and nicely ordered more for me to do, and I had a lot more high results after that.

All of this is important to me today because of an ongoing discussion on e-patients.net: Health Sites: Some Are More Equal Than Others . If I had asked for and received my "data" sooner, I would not have wasted months with no testing. I also would not have known to do that as quickly without input from support folks. This brings the question in my mind:

Do I need my data asap to be an empowered e-Patient?

Maybe. We need to be very careful about assumptions we make from our own experiences. Everyone does not have the same experience, nor is every support need the same. It is very hard to be objective in a subjective world. In my world, I believe I do.

New PHR technology too much for my parent's generation? I don't think so!

survivethejourney@gmail.com (RobinS) — Sun, 31 Jan 2010 15:57:31 PST

I was reading and responding to Regina Holliday's latest post, Rosa Parks in Health Care, when I read this:

The paper transfer has been used for years. The poor, the illiterate and elderly were comfortable with the current system and would not be able to understand a new electronic version. Those favoring change pointed out the favorable outcome of less wait time, faster processing and ability to aggregate data. All these argument fluttered around us, as we said goodbye to the paper version of the National Capital Metrobus transfer and hello to the Metro Smartrip Card.

It occurred to me that my parent's generation have adapted to a lot of technology over the years. My parents were born in 1937. I decided to see if I could list just some of the things they have adopted and adapted to during their lives since then:

electricity and all that came with it
light bulbs
ball point pen
ViewMaster
fiberglass
electric tools
vacuum cleaner
indoor plumbing
indoor toilets
home cameras
polaroid camera
modern refrigerator (they used the spring house until then)
electric washer and dryer (I remember my mother using a wringer washer and hanging clothes on the line)
widespread use of the telephone
jukebox
record player
electric skillets, mixers, and more
television
communications satellites
color television
8-track players
cassette player
DNA sequencing/typing
video cameras
walkman
use of x-ray and CD imaging
Magnetic resonance imaging
credit cards
air travel
crockpots
electric (home) hair dryers, curling irons, etc.
bar codes
calculators
scientific calculators
batteries
rechargeable batteries
solar powered chargers and calculators (and more)
digital thermometers
super glue
post-it notes
velcro
integrated circuits
turbo-charged engines
jet engines
riding mowers
leaf blowers
edge trimmers and weed eaters
pacemakers
typewriter
electric typewriter
remote controls
word processors
electric dishwashers
home air conditioning (window units and central air)
video games
disposable camera
medical imaging of all sorts
computer
microchips
VCR (and even the BETA players)
camcorders

cable tv
satellite tv
PDA's
CD's and CD players
digital cameras
self-cleaning ovens
icemakers
microwave oven
ATMs and ATM cards
DVDs and DVD players
mp3 players
cell phones
smart phones
Wii (I can't forget that!)

And that's just to start. For all that is listed above, we could all add a lot more, I'm sure. What I'm trying to say is my parents' generation CAN adapt to PHRs/EMRs if they wish, especially if the technology is developed to work with the cell phone users*. They've adapted to and adopted a whole lot more than we have. My parents can even tether a phone to their laptop while traveling in their RV. They know where/how to find the best hot spots, too.

We must remember that in 10 years there will be a whole new, technology-savvy group moving into the 65+ demographic. Are we prepared for that?

*According to research done by PewInternet, 83% of adults have cell phones.

Two easy ways to blog without (almost) any technical skills!

survivethejourney@gmail.com (RobinS) — Sun, 24 Jan 2010 07:13:51 PST

For those of you who have said, "I'd like to blog about...." but think you don't have the skills to set up a blog, I have some suggestions:

Try a photoblog: One of the simplest ways to tell your story is through pictures. One of the easiest ways to do this is to use http://365project.org/ . Pictures are easily uploaded and you can caption them plus describe what is happening. Another option is to use a flickr account.
Use Posterous: Posterous is as simple as emailing. You email what you want to say to your posterous blog. There are some easy choices of style and color for you when you set up your blog, but you can just leave "as is" for a neat, professional-looking site.

Some nice examples of posterous blogs are rlbate's posterous and MaryO's posterous.

You CAN blog! Start your own, and show me. I can't wait to see it.

My picks for the top 10 e-Patients you should be following on Twitter

survivethejourney@gmail.com (RobinS) — Sat, 23 Jan 2010 13:44:10 PST

In no particular order:

@ePatientDave: Dave deBronkart said "Gimme my damn data" and hasn't shut up since. Seriously, he was talking a long time before that, but for some reason, folks really listened when he posted about his experience trying to get his own data. (He's also on the editorial team for the new Journal of Participatory Medicine)
@TrishaTorrey: Every patient's advocate, she has written a new book entitled "You Bet Your Life! The 10 MistakesEvery Patient Makes" which you can find on her blog. Trisha's story about her own experiences echo so many.
@thyroidmary: Mary Shomon is THE foremost patient advocate for those of us with thyroid problems. She has kept all of us who use the dessicated T3/T4 combos for thyroid replacement in the loop with the shortages and how to find/get it.
@accarmichael: Co-founder of Cure Together and a chronic pain survivor, Alexandra Carmichael and her partners are making huge strides documenting patient data and tying it all together. YOU can make a difference by joining and entering your data. And you will learn something from it, too, I promise.
@cushings: If you want to keep up with what is happening in the "Cushing's Help" world, and with everything anyone is doing related to Cushing's, Mary O'Connor is the woman to follow. Founder and owner of the cushings-help.com website and message boards, this woman has done more for Cushing's awareness, support, and education than anyone.
@SusannahFox: Susannah keeps up with what is happening with technology and healthcare. A PewInternet researcher, she tweets very valuable information. I'm not sure she is technically an e-patient, but close enough! Everyone is at some point in life.
@gfry: Gilles Frydman is not a prolific tweeter. But boy, when he has something to say, it's worth hearing. ACOR founder and on the editorial board of the new Journal of Participatory Medicine, he is a strong advocate for patients.
@jensmccabe: I can't keep up with her because she runs circles around the rest of us, but Jen is an up-and-coming entrepreneur/e-patient eager to solve new problems that we deal with as patients, and taking a new look at old problems. She also has an interesting perspective on numerous health issues. Although I give her a hard time on her numerous blogs/posts, I have the utmost admiration and respect for her. Keep an eye on her. She's going to effect change.
@ReginaHolliday: Regina's bio on twitter "Regina Holliday is a medical advocate muralist. She is using paint and brushes to promote health reform and patient's rights" does not do justice to who she really is. To really understand, read her story. I hope to meet her some day. She is telling the world how it really is.
@carlosrizo: MD turned e-patient and entrepreneur, Carlos is first and foremost an e-patient. In fact, I often forget he is a doctor. I think he does, too, when tweeting things such as "Rehearsing my health's "elevator pitch" for my doctor's appointment today. When 15 min is all I have (sadly) every minute counts." He gets it.

If you aren't familiar with the term "e-Patient" then http://e-patients.net/ has a lot of wonderful information. The wikipedia definition says, "e-patients are increasingly active in their care and are demonstrating the power of the Participatory Medicine or Health 2.0 / Medicine 2.0[1]. model of care. They are equipped, enabled, empowered, engaged, equals, emancipated and experts." My favorite definition comes from @gfry, though:

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

survivethejourney@gmail.com (RobinS) — Tue, 12 Jan 2010 10:07:14 PST

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.

Most Read Posts for 2009

survivethejourney@gmail.com (RobinS) — Fri, 01 Jan 2010 23:14:24 PST

Although not all were written in 2009, listed below are the most read posts in this past year with a brief excerpt from each. To read the entire post, simply click on the title of each one. Thank you for reading and sharing with me this year.

Vitamin D: "Normal isn't normal anymore: Dr. Bruce Hollis' latest published research on Vitamin D questions the definition of "normal". Since many of us with Cushing's Disease and/or other endocrine problems suffer with extremely low Vitamin D ranges, defining a normal range is very important.

Vitamin D is not really a vitamin. It is a steriod and exists in two forms, D2 (ergocalciferol) and D3 (cholecalciferol). D3 is the more active form and is found naturally in the human body. D2 is derived from radiating fungi and is only found in very small amounts in the body. Most over-the-counter (OTC) supplements use the D2 form rather than D3. Also, there are two prescription forms of it: Drisdol and Calciferol. D3 may be purchased without a prescription. (This is a Research Blogging post)
Martha's Story: (Martha died in 2008 due to complications from Cushing's Disease.) Stacey and Martha had been together for 11 years. During most of those years Martha struggled with IBS and acid reflux. About 6 years ago, they noticed her cheeks were getting "bigger" but her legs and arms were very thin. In fact, until the last 5 years she was a thin/normal woman. Stacey said she would squeeze Martha’s cheeks saying "look at those chipmunk cheeks".

Five years ago her health started dramatically changing. She had an ovarian cyst burst, then after problematic periods she had a fibroid tumor removed and a D&C performed. After that she never had her period. Her GP told her she was going through early menopause. Her strength was never the same. Stacey and Martha thought it was because she was pushing herself too hard with a long commute and getting up very early in the morning....
Dynamic MR Imaging of the Pituitary: Same tools, different technique (but wow, what a difference!): Those of us who have suffered or still suffer with pituitary adenomas have heard way too many times "your MRI is normal". I did, for years. Yet, I ultimately did have a proven adenoma which caused my Cushing's disease. If the MRI had shown even an inkling of the tumor to the trained eye, perhaps a doctor would have taken my symptoms more seriously....

...What makes a dynamic MRI different from any MRI using contrast?

Typically, a series of images are taken prior to contrast and then the MR imaging is stopped while contrast is injected. Once that is finished...
Grand Rounds Volume 6, Number 4: When I chose the theme for this week's Grand Rounds, I chose it because it is near and dear to my heart. Before I knew what it was called, I was looking for a "participatory medicine" model. Long before I heard the term "ePatient", I was one.

Since the Society for Participatory Medicine is the next evolution of the group at http://e-patients.net/, it makes sense to start by having them spell it out. Their new Journal of Participatory Medicine is launching next week at Connected Health, and Co-Editors-In-Chief (a physician and a patient, of course) explain the purpose clearly on the Society's blog, in Why the Journal of Participatory Medicine?
Stars Go Blue: "Sam[antha] lay dying for 13 hours with Seattle CHildren's endocrinologists standing around watching and wondering why the continual 15 mg [of cortef] they were giving her wasn't working."
Central Hypothyroidism: A Cushing's Disease problem, too: Since approximately 80% of Cushing's Disease/Syndrome is caused by a pituitary adenoma, other hormones produced by the interaction of the hypothalamic-pituitary-adrenal (HPA) axis are often deficient. This includes thyroid-stimulating hormone (TSH).

Primary hypothyroidism is often detected by elevated TSH values. This is due to the normal feedback-loop of the HPA axis. Central hypothyroidism (CH), however, is not typically detected by measuring TSH which is low due to a disruption of the pituitary's stimulus and is not produced as needed. The most common cause is a pituitary adenoma.

In Mechanisms Related to the Pathophysiology and Management of Central Hypothyroidism, the authors state, "Given that the prevalence of pituitary adenomas in the general population is greater than 10%, the true prevalence of CH might be much higher than that reported". When speaking of the method of measuring TSH levels alone, they say this "approach works, however, only if the hypothalamic-pituitary-thyroid axis is normal. Conversely, the strategy of first-line TSH measurement can miss patients with CH." (This is a Research Blogging post)
Cushing's: An invisible illness, too: We are zebras, but our stripes remain hidden behind loose clothing and no one peeks beneath....
My health care records: My property: I want my health records. I believe they are mine. And I want to be able to access them electronically. Frankly, I'd like to access them, amend them (or at least notate and comment on them), and share them with those I choose.

Recently, Dr. Rob posted about how this made him feel...
We need an elephant specialist! : 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....
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.... (This is a Research Blogging post)

Actually, the "Testing 101" series is read more than all the others, but those are very old posts, so I didn't include them in my list. Also, the group of posts dealing with radiosurgery are read a lot.

Happy New Year to all....