Fundraising Efforts

I created this ticker to show us how close we are getting to the goal of raising funds to support Cushings-Help.com.

This is my first time to raise money this way, so my methods are rudimentary.  If you decide to donate, please let me know, either by commenting below or some other way.  I will then update the ticker with the new donation so that we get an accurate reflection of our fundraising efforts.
Please consider donating $10 to keep the Cushings-Help.com's message boards up and operating free for all those who need it.
I thank all of you for your support.
~ Melissa

Fundraising for Cushing's Awareness Month

APRIL IS CUSHING’S AWARENESS MONTH

Exactly four years ago in 2007, I cried at home after receiving a call from the doctor's office.  The nurse told me that my recent lab results, including a thyroid panel, were normal. That should have been good news, right?  WRONG. I didn't feel normal. In fact, I felt worse than I had ever felt before in my life.  That afternoon, I took to the computer to research my symptoms on the internet.  When I found the Cushings-Help.com message boards, my mouth dropped. It took less than an hour to find my diagnosis.

My husband returned home after his work day less than an hour later. I announced, "I think I have a tumor on the pituitary, which hangs below the brain. I think I have Cushing's disease."

Not one day since has gone by without a thought of Cushing’s. I’ve spent many hours every day thinking about Cushing’s. Have you ever spent 1,461 days of your life sick, trying to save your life, and knowing that if you can’t convince doctors to help you that you may die?  It is not easy.  Life has not been easy for me or my family these last four years. This word and this disease have infiltrated my life.

I owe my life to MaryO, who founded the Cushing’s Help website and its message boards over 10 years ago after suffering with Cushing’s disease herself. MaryO set forth to create an online community that was lacking when she sought her cure.

I have met many shining souls and made incredible friends participating on the Cushings-Help.com message boards in the past four years.  We were lost without each other. We each came to the message boards new and scared.  We leaned on each other, as we ran everything about our experiences through these people – these new-found and desperate friends who were in the same boat as us.  We learned from each other.  Together, we shared our stories of terrible doctors’ appointments where we were dismissed as fat and lazy.  We celebrated every high test result, every clearance for surgery, and all the other details that move us forward on the journey for this disease. In this community, we found the strength to keep fighting to get cured from the disease that we were sure we had but others weren’t. We Cushies have faced seemingly insurmountable odds, and we have done so together.

Our fury and outrage male us determined to protect future undiagnosed Cushies from all of our heartaches and woes.  We hold a strong desire to create a powerful online community, and in 2008 many of us started personal blogs. My blog Cushing’s Moxie is my platform for outreach, and to date, my blog has been over 116,000 pages views. 

I learned from people who had been in my shoes. It was only through struggles with doctors and testing to diagnosis to surgery -- with this process often repeated multiple times unfortunately -- and eventually to healing and happiness that I learned what this disease is, how it truly presents itself today (not 20 years ago), how it affects the people who have it, and how to best guide myself through the quagmire.  Because of MaryO's compassionate vision and my fellow Cushies’ guidance and support on the message boards, I have steered myself to diagnosis twice for a disease that most have never heard of and doctors consider too rare.  I just can't even imagine where I would be without the Cushings-Help.com site.

With Cushing's Awareness Day approaching on April 8th and my 2nd pituitary surgery scheduled for April 20th, I decided to declare April as Cushing's Awareness Month.  Goodness sakes, you know we need the extra time!  It takes us that long to explain the intricacies of this dangerously elusive disease.

So there you have it. It is Cushing’s Awareness Month. 

As such, I decided to raise funds to support the website that saved my life.   For my friends and family who have followed me along this bumpy four-year battle, I ask that you consider making a donation to support the community that I have grown to love and call my 2nd family. 

Operating and maintaining the Cushings-Help.com site takes money.  It is imperative to keep the site free and totally available to all who search the internet for an explanation to their confounding symptoms. We must keep the site operating for others like me who search for their cure.  I ask you to join me and donate to the support this important website.

I hope to raise $500 in April 2011.  Can I count on you to donate $10?

Cushing's is a terrible disease. It ravages the body and nearly destroys a person seeking only diagnosis, treatment, and control of the rest of their life again.

The world must continue to hear about Cushing's, as this disease is not as rare as doctors think. We Cushies believe it is only rarely diagnosed.  Please consider a donation to maintain a strong presence on the web for undiagnosed Cushies to find. 

I have many interesting posts planned for Cushing’s Awareness Month this April.  As I face a daunting second pituitary surgery, I refuse to let the opportunity to help someone pass me by.   On April 20^th, I will go under general anesthesia and lie on an operating table while the neurosurgeon goes through my nose to cut out a second tumor on the pituitary, only centimeters from my brain. 

In the upcoming weeks, you might say to yourself:

“YIKES. She’s been through so much. I love that girl. I’ll ante up a donation of $10 for her Melissa’s moxie.” 

Putting words in your mouth? I hope so. 

Laying it on thick for an important cause,
Your truly,

Melissa

UPCOMING PITUITARY SURGERY SCHEDULED

Hello to all of you still following along. I wanted to tell all y'all some big news.

I have been diagnosed with cushing's disease again, and I'm off to surgery! I'll have my second pituitary surgery in Houston on April 20, 2011. 

I have many details to provide still, and I hope to find time to post back story soon.  I will say that we used our tax refund to purchase a new iPad 2, which will making sending updates from the hospital and post-op easier, I hope.

With surgery and the chance to return to the rest of my long life only 17 days away, I think of that 80s song:  The future so bright, I gotta wear shades.

THIS IS THE BEST ADVICE BASED ON MY EXPERIENCE.

I encourage you to do midnight testing every night in a row until you get your highs. Do not skip.

Get blood draws at midnight and again 30 minutes later.  Chew a salivary cortisol test swab while getting your blood drawn.  I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. 

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high v. low, and frankly, it is quite unfair that we should have to know.  This disease is an enigma - a mystery wrapped in a riddle.  Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure.

Take control.  Your mission is to show up every night, and hang in there.

~Moxie Melissa

Low Expectations, Contracts, and All Types of Feasances

When a patient visits a doctor, s/he does so with a certain expectation. The patient recognizes the schooling and degrees the doctor holds. We pay him/her for his time, expertise, knowledge, and guidance. The patient is not allowed to be late to the appointment, as many offices reschedule the appointment for fear it will delay the already crowded schedule.  If the doctor keeps the patient waiting, so be it. The patient shuffles from room to room waiting for his/her turn.  Rarely do we complain about the time, and rarely do we leave the office in less than an hour, after a 10 minute visit with the doctor, of course. Regardless, it is a system that we all buy into. We accept. We may complain, but we need these people, these doctors. People in many societies have come to accept this modern medical practice. 

In addition, the doctor goes to great lengths to ensure the patient understands our responsibility, our financial obligation to the doctor for his time and expertise.  The patient signs many forms before the initial appointment -- outlining the beginning of this relationship.  The doctor will be paid for his service, whether through the insurance company or the patient.  The patient is paying for the service of a medical doctor. We pay them based on time, not results. In no way does the doctor ever promise to the patient that s/he will resolve our medical ailments. Isn't that a little messed up?

What happens when we patients can no longer get a doctor to listen to us? What happens when we are very clear about our symptoms, request certain testing to rule out our undiagnosed illness, yet the doctor refuses to help us?  It is my strong view that when a doctor who fails to investigate a patient's concerns about Cushing's -- yet we continue to pay them for their time but inattention -- it is a breach of contract.

"When a contract creates a duty that does not exist at common law, there are three things the parties can do wrong:

• Nonfeasance is to ignore and take no indicated action - neglect. 
• Misfeasance is to take inappropriate action or give intentionally incorrect advice.
• Malfeasance is hostile, aggressive action taken to injure the client's interests."

I have heard story after story from my Cushie friends, horror stories of the treatment they receive from doctors who dismiss their concerns, symptoms, and knowledge. It makes me so sad and ANGRY.

Nonetheless, we Cushies have come to expect this terrible treatment from doctors. When were a far enough along, we can even joke about it.

To emphasized this point, my brilliant and super cool Cushie friend Cyndie created this video, which portrays a typical exchange between Cushing's patient and endocrinologist/doctor. LOSE WEIGHT. EXERCISE. Oh yeah, well, that won't get rid of my tumors, you jackhole!  

 

Now, repeat this exchange at every doctor appointment for 4 to 20 years, and then it doesn't seem too funny.

Totally and Utterly Preposterous

One of the main reasons I spend my time to write the blog is to generate awareness about Cushing's.  Patients like me will continue to suffer needless until everyone understand how this disease impacts us so that they can take good care of us.  We deserve that. 

This story is preposterous! It's an outrage.  What can we Cushing's patients do when even the *medical staff* do not know how to take care of us?!

Birmingham hospital accused of kicking out hallucinating brain tumour teenager in pyjamas

 

A TEENAGER with a brain tumour was kicked out of hospital by security guards and left wandering the streets hallucinating in his pyjamas, relatives have claimed.

An investigation into how 19-year-old Anthony Riding, a patient under the care of Heartlands Hospital, came to be found on the street in freezing cold weather is now under way.

The desperately ill teen had not been officially discharged from the hospital and he claimed two NHS security guards had escorted him off the premises to nearby Belcher’s Lane and ripped off his patient ID wristband.

Anthony, from Bordesley Green, suffers with rare hormonal disorder Cushing’s Syndrome, caused by a tumour in the pituitary gland next to the brain.

Side effects mean that he can suffer psychological disturbances from euphoria to depression.

He was admitted as an emergency to the hospital, in Bordesley Green, suffering syndrome-related problems along with mood swings and hallucinations on the night of December 15.

But the following morning at 10am, his family found him wandering the streets in his pyjamas and flipflops as temperatures plunged into minus figures.

Dad Tony said: “After complaining to the hospital, nurses said there had been some problems during the night with Anthony when he had been swearing and needed restraining.

“That is all part of his condition but if they had a problem, someone should have rung us to bring him home or sit with him, not chuck him out on to the street in his pyjamas when he was under their care.

“We found him in his pyjama shorts and flip flops, hallucinating. He had been wandering around like that for nearly two hours and had bruises on his arms from where he had been grabbed. It was so cold, it snowed later that day.

“Anthony’s specialist nurse at Queen Elizabeth Hospital was very disappointed in what happened and told me that what other people see as bad behaviour is part of Anthony’s condition, and other medical staff should know that.”

The syndrome is so rare that only one in five million children have similar symptoms to Anthony’s and one in every two million adults.

Anthony has already undergone two unsuccessful operations on the tumour and is now waiting to see whether a month’s-worth of radiotherapy has helped.

A month after his first operation, Anthony met his footballing hero when Paul Gascoigne was visiting the NEC and he gave the teenager words of encouragement.

A Heartlands Hospital spokeswoman said: “We take the safety of all of our patients and staff very seriously and are very sorry to learn of the concerns raised by Mr Riding and his family. We will be carrying out a full investigation into the issues they have raised.

“We always aim to support our patients and staff and if an individual is consistently using violent and abusive behaviour, we have a responsibility to ensure our staff and patients are protected at all times.”

**********************

pre·pos·ter·ous

–adjective

completely contrary to nature, reason, or common sense; absurd; senseless; utterly foolish: a preposterous tale.

 

Anthony, from one Cushie to another, I wish you success on your radiation or your next surgery. I'm sorry for what has happened to you.

~Melissa

Power Users: Enough Said

Thank you to my sweet friend Rev Kev for passing along this article, and saying, "Ok so Melissa was not mentioned by name, but the profile fits."

People Coping With Rare Disease Are Internet Power Users 

iStockphoto.com

Published: March 01, 2011

by Nancy Shute

When people go online searching for health information, they're often also looking for someone who's grappling with the same problem. That's especially true if they're dealing with a rare disease.

The Internet provides a gateway to all kinds of medical facts and also to people who have come by that information the hard way.

That's the news from a survey just out from the Pew Internet Project and the California Healthcare Foundation. They found that people dealing with rare diseases are the undisputed power users of health information online.

About 25 million people in the United States have a rare disease, although each disease affects no more than 20,000 people. Because of that, people often have a hard time finding others in the community with first-hand knowledge of that disease.

People are also more likely to seek their peers out online if they are coping with a medical crisis, are a caregiver for a sick relative, or are dealing with a chronic condition. About one-quarter of Internet users in those situation seek out peers online, compared to 18 percent of Web surfers overall.

But the people dealing with a rare disease were far more likely to have honed their searching, learning, and networking skills to Olympian levels. The majority of them are connected to peers online. "We can say things to each other we can't say to others," one woman living with a blood disorder wrote in the survey. "We joke about doctors and death. We cry when we need to. Together we are better informed."

That's not to say that people are dissing doctors. Almost three-quarters of adults say they turn to doctors and other health professionals for information. Some 54 percent say they ask friends and family for advice.

But clearly the Web has something to offer people in need of medical information beyond mere data. "People want emotional support from their peers," says Susannah Fox, associate director of the Pew Internet and American Life Project, and author of the survey, which surveyed 3,001 adults in the general population and 2,156 members of the National Organization for Rare Disorders. "The rare disease communities show that people are ready and willing to share with each other so that other people can benefit from their experiences," she tells Shots. [Copyright 2011 National Public Radio]

http://m.npr.org/story/134140813?url=/blogs/health/2011/02/28/134140813/people-coping-with-rare-disease-are-internet-power-users&sc=emaf

Harvey Cushing: Rocking Modern Medicine

Famed neurosurgeon's century-old notes reveal 'modern' style admission of medical error

Science Centric
22 February 2011 23:32 GMT

The current focus on medical errors isn't quite as new as it seems. A Johns Hopkins review of groundbreaking neurosurgeon Harvey Cushing's notes, made at the turn of the last century, has turned up copious documentation of his own surgical mishaps as well as his suggestions for preventing those mistakes in the future.

Authors of the article, published in the Feb. Archives of Surgery, suggest that such open documentation may have played an important role in spurring groundbreaking medical treatment advances in Cushing's era - and could have the same effect today.

'Acknowledging medical errors is evidently something that doctors identified early on as critical to advancement a very long time ago,' says principal author Katherine Latimer, B.S., a medical student at the Johns Hopkins University School of Medicine.

Latimer and her colleagues scoured Johns Hopkins' archives to locate operative notes covering 878 of Cushing's patients. The notes, transferred decades ago to microfilm, covered the early years of Cushing's career, from 1896 to 1912, at The Johns Hopkins Hospital. After deciphering the notes - a monumental task, the authors say, owing to Cushing's poor handwriting, abbreviations, and pages crowded with notes of other physicians, too - the researchers selected 30 cases in which errors were clearly delineated.

The cases fell into categories of errors similar to those that plague doctors today, the authors said, classifying 11 of the cases as errors of judgement in which Cushing made the wrong choice during a surgery. One example: operating on the wrong side of a patient's brain. Seventeen cases were identified as 'human error,' mistakes in which Cushing revealed clumsy or careless behaviour, such as dropping an instrument into a surgical wound. Three of the errors were considered equipment or tool oversights, such as the case in which a woman's heavy bleeding left Cushing and his colleagues without enough wax, a substance used at the time to seal blood vessels.

Latimer and her colleagues say they were surprised by Cushing's frank and copious documentation of his own shortcomings. His notes acknowledged mistakes that may have resulted in patients' deaths, as well as those that didn't seem to harm patients' outcomes. They said the documentation took place in an era in which malpractice litigation was becoming a growing concern for doctors. Though malpractice penalties were substantially smaller in Cushing's day, lawsuits presented a serious risk for physicians' reputations, the authors noted.

The authors also emphasised that Cushing practised in a time of enormous surgical innovation. For example, patient mortality from surgical treatment of brain tumours fell from 50 percent to 13 percent during his career. While some of this jump ahead was due to improving technology, the authors propose that part of the reason was open documentation of errors, which helped Cushing and other surgeons develop fixes to avoid them.

'People are human and will make medical mistakes,' says Latimer, 'but being vigilant about your own shortcomings is critical to improving. To keep medical innovation flowing, we need to strive to maintain this same vigilance today.'

Alfredo Quinones, M.D., associate professor of neurosurgery at the Johns Hopkins University School of Medicine and senior author of the study, adds that today's medical errors continue to have a tremendous impact on patients and their families. 'Recognising errors and reporting them can help us greatly improve medicine,' he says. 'After all, we are all working towards the same goal: better patient care.'

Story from Science Centric | News
http://www.sciencecentric.com/news/11022234-famed-neurosurgeon-century-old-notes-reveal-modern-style-admission-medical-error.html

Pay No Attention to the Girl Behind the Smile

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

-- an oldie but a goodie I food when reading my blog

Sleep

See and download the full gallery on posterous

Cushing's: Disease of the Night

Cushing's is a disease of the night. Fluctuating cortisol levels keep our bodies captive in a sleepless cave: one night, we may find sleep; other nights, it eludes us.

After drudging through a day of dental work and laundry yesterday, I was happy to climb in bed early. I slept soundly from 9 pm to 12:40 am.

-- ZING -- My eyes popped open.

I was wide awake until 5 am but i was to restless to sleep. My toddler daughter woke up extra early at 6 am, and I think I dozed off with her in the bed with me around 7:30 am. She played on my iPhone. She woke me up at 7:50 am, pulling the lamp string on and off, saying "Mama get up. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp." So, because her life depended on it, I got up. We were up until we napped from 3-5 pm. I was awake from 12:40 am to 3:00 pm. Now, it is 10:00 am, I hope I can sleep through the night. If you see Mr. Sandman hanging around Go, please send him my way.

Despite my two batches of high test results and the tumor sighting, my body insists on pumping out more cortisol. I don't need all the extra anymore! Oh, I just realized. I didn't cc: my body on the email below, giving it a reprieve from all that cortisol pumping. I forgot to announce that it doesn't have to perform on command anymore (not that it really ever did but it succeed in doing the opposite aka Costanza's move). I failed to mention that there is no need to show off its full-figured, more-to-love cortisol stock pile anymore. So listen up, T-T-T-Tumor Willison Phillips. I am almost to surgery. Let's all try to get along and get some rest. No more midnight parties, please. I know you know the end is near, that your days are numbered. I hope you do go down without a fight, because whether you like it or not, I'm gonna have to cut you out of my life. Capice?

-m

Hospital Pain Scale

This is the best thing I have read in a looonnnnggg time. I plan to tape it to my rolling table bridge over my lap thing while I'm in the hospital for my 2nd pituitary brain surgery. Hooray for better communication. ~m

Boyfriend Doesn't Have Ebola. Probably.

http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-pro...

See and download the full gallery on posterous

Plop Plop Fizz Fizz: Oh What a Relief It Is

I have some very good, very personal news to share!! I wrote an email to my LA endocrinologist, cc:ing the neurosurgeon. It's easier to paste than summarize again. Here we go!

***********

I met with Dr. [Neurosurgeon] yesterday, February 22, 2011. We reviewed my dynamic 3T MRI of the pituitary dated 1/12/11, and Dr. [Neurosurgeon] immediately identified two areas of suspicion in the sequence when the dye entered the pituitary. The target area is a 3 millimeter tumor located on the right side of the pituitary. He also identified a suspicious area adjacent to where the left tumor was resected during the last pituitary surgery. The white arrow points to a tumor, aka dark area aka "area of hypoenhancement" in radiology terms.

[note: the radiologist read this 19-month post op MRI as a normal post operative scan. Radiologists are often wrong. I repeat, Radiologists are often wrong! You must have your pituitary MRIs read by a neurosurgeon. Do not stop pushing for a Cushing's until you get it].

Dr. [Neurosurgeon] is awaiting a final letter from you regarding your findings and recommendations. He is willing to accept me as his surgical patient for a second pituitary surgery.

Since your last email, I have a second positive value: a high on a salivary cortisol test supporting hypercortisolemia. It occurred the same night as my high midnight serum cortisol draws on 2/11/11. MN cortisol serums (normal
2011-02-12 @ 0037 – 1.9 (ug/dL)
2011-02-12 @ 0007 – 3.1 2011-02-11 @ 0035 – 9.7 // diagnostic for Cushing's 2011-02-11 @ 0010 – 8.4 // diagnostic for Cushing's

2011-02-10 @ 0045 – 8.7 // diagnostic for Cushing's 2011-02-10 @ 0015 –11.1 // diagnostic for Cushing's

2011-02-09 @ 0040 - 9.2 // diagnostic for Cushing's
2011-02-09 @ 0010 - 9.8 // diagnostic for Cushing's

2011-02-08 @ 0023 - 5.6 // suggestive of Cushing's

2011-02-07 @ 0030 - 5.1 // suggestive of Cushing's
2011-02-07 @ 0000 - 5.0 // suggestive of Cushing's

2011-02-06 @ 0034 – 3.3
2011-02-06 @ 0013 – 2.6
MN salivary cortisol (normal
2011-02-12 @ 0034 – 0.051

2011-02-12 @ 0009 – 0.071 2011-02-11 @ 0033 –0.180 // diagnostic for Cushing's (CORTISOL DOUBLED IN 29 MINUTES)

2011-02-11 @ 0004 – 0.087 2011-02-09 @ 0045 – 0.085 Based on these findings, are you ready to clear me for a second pituitary surgery? Dr (neurosurgeon) reviewed the benefits and risks of a second pituitary surgery. He mentioned the short-term possibility of diabetes insipidus and cited the chance for a cerebrospinal fluid leak to be 15-20%, which would require a few more days in the hospital lying flat on my back. We discussed fertility, and Dr. McCutcheon stated that having a second pituitary surgeon would like hurt the chances of maintaining fertility going forward. My husband and I discussed fertility after the appointment. We both agreed that the next step is a second pituitary surgery. We both struggle with my compromised quality of life, and we know that, above all else, is our top priority. We are not willing to consider a bilateral adrenalectomy (BLA) now, since there is a clear target for pituitary surgery, and a life on replacement steroids is scary for us. A miracle baby will follow if it is meant to be. We are still excited for what the future holds for us.

I look forward to your recommendations, and I hope surgery will be in my near future.

Sincerely,

Melissa

On Thu, Feb 17, 2011 at 12:37 AM, my Los Angeles endocrinologist:

These look high-let's see the stuff you sent to the Esoterix lab and [the neurosurgeon's] read on your mri. I like to see a 2nd positive value [indicating high cortisol].
Glad you are happy.

***********

Can you see me smiling from ear to ear! I am so happy!!!
~ m

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article | Pituitary Network Association

Many people watching the physical demise of a Cushing's patient may believe that the struggle to diagnosis makes us depressed. While that is true and worthy of every drop of depression, in actuality, that is only part of the story.  Tumors cause the pituitary to send out error messages that cause many hormones to sputter and malfunction. This resulting hormone imbalance leads to depression, anxiety, mood swings, and suicidal thoughts.

NOT TOO FUN. ~m

* * * * * * * * * *

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article

Pituitary Network Association, www.pituitary.org

This presentation covered the following:

• The basics of the hormone system
• How stress affects the pituitary gland
• The purpose of emotions and how they interact with the body
• Some of the mental health symptoms commonly associated with pituitary and other hormonal disorders
• What you can do to help yourself or a loved one with the mental and physical symptoms of and endocrine disorder

http://www.pituitary.org/library/library_detail.aspx?page_id=2410

Cortisol Levels, Thyroid Function and Aging

Thank you to my dear Cushie friend Cyndie for this excellent find.

*  * * * * * * * * * *

HOW CORTISOL LEVELS AFFECT THYROID FUNCTION AND AGING

Interview with David Zava, Ph.D

JLML: Cortisol is needed for nearly all dynamic processes in the body, from blood pressure regulation and kidney function, to glucose levels and fat building, muscle building, protein synthesis and immune function. You’ve been specifically studying the effects of cortisol on thyroid function.

DTZ: Yes, one of cortisol’s more important functions is to act in concert or synergy with thyroid hormone at the receptor-gene level. Cortisol makes thyroid work more efficiently. A physiologic amount of cortisol—not too high and not too low—is very important for normal thyroid function, which is why a lot of people who have an imbalance in adrenal cortisol levels usually have thyroid-like symptoms but normal thyroid hormone levels.

JLML: Would you explain this thyroid-cortisol relationship in more detail?

DTZ: One way to understand the synergy of cortisol and thyroid is to think of trying to turn on a big round valve with one hand, as opposed to two hands where you can really grip it and turn it on. Both thyroid and cortisol have to be there in the cells, bound to their respective receptors at normal levels, to efficiently turn the valve on and get gene expression. So, when cortisol levels are low, caused by adrenal exhaustion, thyroid is less efficient at doing its job of increasing energy and metabolic activity.

Every cell in the body has receptors for both cortisol and thyroid and nearly every cellular process requires optimal functioning of thyroid.

JLML: And what happens when cortisol levels get too high?

DTZ: Too much cortisol, again caused by the adrenal glands’ response to excessive stressors, causes the tissues to no longer respond to the thyroid hormone signal. It creates a condition of thyroid resistance, meaning that thyroid hormone levels can be normal, but tissues fail to respond as efficiently to the thyroid signal. This resistance to the thyroid hormone signal caused by high cortisol is not just restricted to thyroid hormone but applies to all other hormones such as insulin, progesterone, estrogens, testosterone, and even cortisol itself. When cortisol gets too high, you start getting resistance from the hormone receptors, and it requires more hormones to create the same effect. That’s why chronic stress, which elevates cortisol levels, makes you feel so rotten—none of the hormones are allowed to work at optimal levels.

Insulin resistance is a classic example. It takes more insulin to drive glucose into the cells when cortisol is high. High cortisol and high insulin, resulting in insulin resistance, are going to cause you to gain weight around the waist because your body will store fat there rather than burn it.

JLML: This would certainly be a significant effect when it comes to creating balanced hormone levels.

DTZ: When cortisol is high the brain also is less sensitive to estrogens. That’s why you can have a postmenopausal woman with reasonable amounts of estrogen, but when you put her under a stressor and her cortisol rises, she’ll get hot flashes, which are a symptom of estrogen deficiency. She really doesn’t have an estrogen deficiency, the brain sensors have just been altered. If you then drive the estrogen levels up with supplementation to treat the hot flashes, she’ll start getting symptoms of estrogen dominance like weight gain in the hips, water retention, and moodiness. And the hot flashes usually don’t go away.

This is why you often can’t effectively treat someone with hormonal imbalance symptoms such as hot flashes by simply adding what seems to be the missing hormone, be it thyroid, progesterone, estrogen or testosterone. If your cortisol is chronically high you’ll have overall resistance to your hormones.

Click here for full article; http://www.virginiahopkinstestkits.com/cortisolzava.html

DENTAL WORK: Thanks a lot, Cushing's!

I am having a lot of dental problems. Just went to the dentist this past Monday. She was showing me cracked teeth, chipped teeth, broken crowns, broken fillings -- plain as day in the photographs on the screen in front of me.  Undeniable. I was shocked and mortified!

After going tooth by tooth, detailing what she recommends for treatment, the dentist asked, "Do you grind your teeth?" I said, "I did when I was younger, but I don't know now." She said that bruxism or teeth grinding appears to be the cause of the damage to my teeth. I asked her what causes that, and she said, stress.

HELLO!

I saw a dentist just last year, when I thought I chipped a tooth on a piece of hard candy. I didn't have the chipped tooth after all, but he didn't mention any of this other damage. We even discussed Cushing's because his teenage cousin had just gotten some high cortisol tests. So, I don't know if all this damage has happened in the last 12 months while my cortisol has been getting higher or not.

So, I am in for $2500 of dental work plus a mouth guard, which can't be fitted until I get all the other repair work done. My dental insurances covers $1500, so I plan to pursue additional money from the medical insurance, since of courses, this problem is the results of a medical condition -- 255.0. Has anyone ever tried that? Regardless, I'm gonna try to get the medical insurance to reimburse me some of the money. Just another fight on my hands, I am sure.

Boo, Cushing's. Boo to you.

2009 article on Cyclical Cushing's

A member of the message boards shares this article yesterday. Thank you!

Lower cure rates, lower adenoma id, older patients, longer follow-up. This is an interesting paper.

The prevalence and characteristic features of cyclicity and variability in Cushing's disease.

Click here for full article:  http://www.eje-online.org/cgi/content/full/160/6/1011

BlogTalkRadio with Dr. Friedman

Struggling with Cushing's?

Undiagnosed but your gut says you have it?

Post op pituitary surgery?

Persistent Cushing's and still sick?

Pre-op or post-op bilateral adrenalectomy? 

This series of free online radio chats are for you.

MaryO, founder of Cushings-Help.com and Cushie.info, and Robin, active board member/blogger of Survive the Journey and Cushing's 365, interview Dr. Theodore Friedman, an endocrinologist based in Los Angeles, CA.  Dr Friedman has helped many fellow Cushies, and I am proud to have him as my doctor now.

- CushingsHelp | Internet Radio | Blog Talk Radio -

Interview with Dr. Ted Friedman DR. F 1/29/2009

Second Interview with Dr. Ted Friedman DR. F 3/12/2009

Dr. Ted Friedman Returns for his Third Interview 2/13/2011

In his private practice, Dr Friedman charges $450 an hour for his time. He has generously donated three hours to us Cushies in these blog chats, and it is far more valuable than the $1,350 you would have paid if you had the exact same conversations in his office. This information is priceless, because it *empowers* patients with knowledge to overcome this rare and rascally disease that doesn't want to go down without a fight.

These chats explain why our local endocrinologists' conventional understanding of and protocol for cushing's does not help all of us. In fact, Dr. Friedman helps us understand that the process of testing, diagnosis, treatment, and surgery (-ies) for patients with cyclical cushing's is very different from florid Cushing's patients.  He and his colleagues work very hard to ensure his research findings make their way into the medical literature in hopes of shaping future treatment of mild or episodic Cushing's patients. Also, be sure to read Dr Friedman's latest paper, aptly titled:

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

Spinning Out of Control

I am pleased to see more and more articles about Cushing's on the internet. I repost them here, hoping that someone will see themselves in one of these articles.  If I can help someone put a name to what ails them, then I have done my small part.

However, I do want everyone to realize that not all cases of Cushing's are resolved with one surgery. I know many people who go on to have more than one pituitary surgery, and maybe even a bilateral adrenalectomy in an effort to stop cortisol production at the source. Some even go on to have gamma knife radiation to zap remaining ACTH-producing cells on their pituitary.

Patients with cyclical/ periodic/ episodic/ persistent Cushing's will struggle much more with diagnosis, treatment, and cure.  Please just keep this in mind.

~Moxie Melissa

* * * * * * * * * *

Spinning Out of Control

Unexplained symptoms left Shana Leslie feeling like an old woman trapped in a 30-year-old’s body.

Throughout 2007, Shana Leslie* developed acne, experienced increasingly shorter menstrual periods and gained more than 20 pounds, mostly in her midsection. Her friends were not surprised. “I had just turned 30, was in the middle of a divorce and had recently been promoted at work,” says Ms. Leslie. “So everybody told me it was related to stress.”

Spinning Out of Control: Cleveland Clinic's Diagnosis Challenge, Summer 2010

New Testing Protocol is Needed

Are you struggling to get diagnosed?  Is your doctor refusing to order any more cortisol tests because the ones you have had came back normal? Do you feel in your gut that Cushing's encapsulates ALL the odd symptoms that you've had for years that no doc can really treat or cure? Well, this is the article you have been waiting for.

Dr. Friedman's latest paper outlines the need to reconsider the testing protocol for patients who experience episodic or cyclical Cushing's. This is a good read.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf

Horm Metab Res.  2010 November; 42(12)

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

T. C. Friedman,¹ D. E. Ghods,¹ H. K. Shahinian,² L. Zachery,¹ N. Shayesteh,¹ S. Seasholtz,¹ E. Zuckerbraun,¹ M. L. Lee,¹ and I. E. McCutcheon³

¹Division of Endocrinology, Metabolism, and Molecular Medicine, Charles Drew University of Medicine and Science, Los Angeles, CA, USA

²Skull Base Institute, Los Angeles, CA, USA

³Department of Neurosurgery, MD Anderson Medical Center, Houston TX, USA

Correspondence T. C. Friedman, MD, PhD Charles Drew University of Medicine & Sciences, Division of Endocrinology, 1731 E. 120^th. St., CA 90059, Los Angeles, USA, Tel.:+1/310/668 5197, Fax: +1/323/563 9324, Email:theodorefriedman@cdrewu.edu

•  Other Sections▼

Abstract

Many Endocrinologists believe that a single determination of eucortisolism or a single demonstration of appropriate suppression to dexamethasone excluded Cushing’s syndrome, except in what was previously thought to be the rare patient with episodic or periodic Cushing’s syndrome. We hypothesize that episodic Cushing’s syndrome is relatively common and a single test assessing hypercortisolism may not be sufficient to accurately rule out or diagnose Cushing’s syndrome and retrospectively examined the number of normal and abnormal tests assessing hypercortisolism performed on multiple occasions in 66 patients found to have mild and/or episodic Cushing’s syndrome compared to a similar group of 54 patients evaluated for, but determined not to have Cushing’s syndrome. We found that 65 of the 66 patients with Cushing’s syndrome had at least one normal test of cortisol status and most patients had several normal tests. The probability of having Cushing’s syndrome when one test was negative was 92 % for 23:00 h salivary cortisol, 88 % for 24-h UFC, 86 % for 24-h 17OHS, and 54 % for nighttime plasma cortisol. These results demonstrated that episodic hypercortisolism is highly prevalent in subjects with mild Cushing’s syndrome and no single test was effective in conclusively diagnosing or excluding the condition. Rather, the paradigm for the diagnosis should be a careful history and physical examination and in those patients in whom mild Cushing’s syndrome/disease is strongly suspected, multiple tests assessing hypercortisolism should be performed on subsequent occasions, especially when the patient is experiencing signs and symptoms of short-term hypercortisolism.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf

Meditate vs. Surgery?

This article does a good job of describing what happens to a society that is stressed out. Mediation may help many. For a patient with Cushing's, it is not so simple. We can not meditate our tumors away. Friends, families, and doctors tell Cushies to relax, calm down, and destress. An undiagnosed Cushie may try but will fail. A diagnosed Cushie or one currently testing for Cushing's can only wish we had that much control -- or any control -- over the excessive cortisol our bodies make. Without our permission, cortisol ravishes our bodies and mucks up all of our other hormones. For us, peace only comes when all tumors are removed from our bodies.

Please Meditate: Inner Peace Can't Wait

http://www.huffingtonpost.com/olivia-rosewood/please-meditate-inner-pea_b_801...

Brains at Yale Get Spruced Up

Love this! Dr. Harvey Cushing and his awesome brain collection are getting their rightful place at Yale. I can't wait to get better and lead a pilgrimage of Cushies to the Cushing Center. How amazing would that be? Maybe we could get the NYT to cover us? What a story and spectacle.

http://blogs.wsj.com/ideas-market/2011/01/24/brains-at-yale-get-spruced-up/

p.s. See my original post at http://cushingsmoxie.blogspot.com on August 29, 2010.

Obese American goes to India for gastric bypass; doctors find brain tumor

http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery...

Plain ol' Obesity or Cushing's?

Weight loss surgery is not for everyone. If you have Cushing's, the docs are jacking with the wrong organ. That will definitely NOT make you better.

When I see an obese person, I never just see an obese person. I look for signs of cushing's. It's actually shocking to see so many with the tell tale buffalo hump, red cheeks, acne, bruising, skinny arms and legs. Cushies are everywhere. I just wish I could stop and talk to every one that I see, to make sure they get checked for Cushing's. I stop and discuss when I can, but alas,  there are just not enough minutes in the day. 

Have some empathy folks. You never know the struggles of those around you. -mm

**********

In the unique case which will strengthen the confidence of the World in the abilities of Indian doctors, team of specialist Fortis Hospitals Mulund correctly diagnosed and treated a 35 year old US national Ms Michelle Hardin of brain tumor. The US doctors had earlier diagnosed the condition as a case of obesity and recommended Gastric Bypass Surgery.

click to learn more

In the last few years Ms Hardin’s weight increased from 190 pounds to 300 pounds (86 kg to 136 kg). She also suffered from diabetes and hypertension. “I tried various diet control measures but to no avail. Also I had excessive thirst and would drink almost 8 liter of liquid daily and would feel always hungry. My obesity caused breathing difficulty (sleep apnea) and for which I used a special machine (CPAP Machine) to keep oxygen under pressure. Seven months back I took an expert opinion in US, where I was asked to undergo Gastric Bypass Surgery (GBS) to treat obesity. Since GBS was very expensive in US, I thought of undergoing the treatment in India.” Ms Hardin

Ms Hardin decided to visit Fortis Hospital to consult Dr Ramen Goel who has a vast experience of performing thousands of advanced laparoscopic surgeries including bariatric surgeries.

“Ms Hardin visited us with the known fact that she had to undergo Bariatric surgery through Gastric Bypass method. Detailed investigations at the hospital however revealed that she actually had a Pituitary Tumor on the right side of the pituitary gland of about 1cm in diameter. The weight gained was actually because of this pituitary tumour and not because of any case of obesity. I referred her to Dr Milind Vaidya, Consultant Neurosurgeon who has an expertise to remove the tumour through minimally invasive procedure.” said Dr Ramen Goel.

Dr. Milind Vaidya, Consultant Neurosurgeon, Fortis Hospitals Mulund said, “The tumor, situated in pituitary gland at the base of the brain, triggered excessive production of cortisol hormone by the adrenal glands leading to complications like uncontrolled diabetes, hypertension and weight gain. We treated her by transnasal- transsphenoidal excision of the pituitary tumor (a minimally invasive procedure) on 14th Jan 2011.”

Dr Vaidya used an endoscope & microscope to reach the tumour through her nostrils. He used both the nasal openings to reach the tumour to avoid incision or scar. He took special care to remove every bit of the tumour, to achieve cure and preserve the normal pituitary gland.

Ms Hardin had an uneventful excision of the right sided tumor and the normal pituitary on the left side was left untouched. Her nasal pack has been removed and she is doing well post-operation, with diabetes & hypertension under good control.

“I was shocked to learn that I suffered from tumour. I thank the doctors of Fortis Hospital. Had there been no timely intervention from them I wouldn’t know what would have happened to my life. Post operative my thirst & appetite have reduced markedly to normal levels. Doctor assured that my weight will be restored to normalcy gradually.” Ms Hardin.

According to Dr Vaidya, “Ms Hardin’s life is today safe and secure only because of timely detection. Had we continued the treatment of GBS or had we wrongly diagnosed the case, her condition could have been critical. Hence timely detection and right expertise is very crucial. This case is a testimony to the quality and credibility of Indian Healthcare expertise.”

Today India is considered as the best treatment destination by foreign patients as they can avail the finest medical facilities at affordable rates. Fortis has partnered with Indushealth in the US who has played a significant role in helping many such international medical travelers avail quality healthcare services at Fortis.

From http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery-in-the-us-35-year-old-american-lady-weighing-136-kg-was-correctly-detected-of-brain-tumor-at-fortis-hospitals-mulund/

This blog post is posted from Cushing's & Cancer at http://cushingshelp.blogspot.com/

Fighting Fire with Fire? Just leave me alone!

My knees have been burning so much today. I sit in a chair, with my legs bending naturally at the knee and hanging down. The muscles on the side of both knees burn like they are on FIRE within 30 seconds. I have to straighten them out to relieve the pain. Rinse. Repeat. Other times, I sit with my legs up in the recliner, keeping my legs straight in an effort to avoid the burning. When I let my feet down to stand, my knee joints are so stiff I can hardly walk. Boo. I hate you, Cushing's disease.

Doctors unlikely to spot Cushing's

That degree on the wall means your physician graduated medical school. It DOES NOT tell you which ones made As and which ones made Ds.

--mm

Physicians can perform poorly when patients need special care, study suggests.

http://www.sciencedaily.com/releases/2010/07/100719174905.htm

"Physicians did quite well at following guidelines or standard approaches to care, but not so well at figuring out when those approaches were inappropriate because of a particular patient's situation or life context."

So, to me, this reinforces the need for cushing's patients to become an expert about the disease and advocate for the improvement of their health. Docs are less likely to put all of the pieces together, but when they do, the good ones do it in the same amount of time it takes a bad one to blow you off! 

Take a look on the sidebar for the link for Tips to Get Diagnosed Quickly.

Anxiety and Endocrine Disease

This is a fascinating literature review about the classic chicken-and-egg debate for endocrine patients. Doctors insist my depression, weight gain and not wanting to interact with others is related to my ANXIETY instead of my anxiety being one of many symptoms of my ENDOCRINE disorder.

"In reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered."

HALF?! These MDs need to get with the program! Listen to your patients!  When patients say they feel anxious and depressed and we tell you that we *tried* all of the stress reducing advice and we are still anxious, keep digging and thinking until your patients feel better. What a concept! Please do not make assumptions that we are lying or over-exaggerating just because you don't know the answer. Figure it out, as it is literally the reason you get paid the big bucks.  The weight of this burden should not just fall on our shoulders, but on yours as well.

-mm

http://www.drrichardhall.com/anxiety.htm

"The first step in defining whether an anxiety disorder is due to a general medical condition is to establish the presence of a general medical condition that is often associated with the production of anxiety symptoms. The DSM-IV defines the most common endocrinological conditions associated with anxiety states as hyper- and hypothyroidism, hypoglycemia, pheochromocytoma, and hyperadrenocorticism. Anxiety may also occur following the exogenous administration of estrogens, progesterone, thyroid preparations, insulin, steroids and birth control pills. Popkin, in addressing the issue of endocrine disorders presenting with anxiety, suggests that anxiety states frequently occur in association with adrenal dysfunction, Cushing's Disease, Carcinoid syndrome, hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia, hyperinsulinemia, pancreatic tumors, pheochromocytoma and thyroid diseases including hyperthyroidism, hypothyroidism and thyroiditis. Popkin cautions that prospective, carefully controlled studies on the etiology of anxiety in these conditions are lacking. The studies that are cited are almost exclusively case reports. He argues for more structured and careful research into the organic basis of these conditions.

Jefferson and Marshall identified hyperthyroidism, hypoglycemia, pheochromocytoma, and hyperadrenalism as the medical illnesses most often associated with anxiety symptoms and most frequently misdiagnosed initially as a primary anxiety disorder.

Hall et al in a study of medically induced anxiety disorder found thyroid disorders, i.e., hyper- and hypothyroidism and thyroiditis, to be the most frequent medical conditions misdiagnosed as primary anxiety disorder.¹¹ Other common medical causes for anxiety in their study included hypoglycemia, Addison's and Cushing's Disease, hyper- and hypoparathyroidism, and diabetes mellitus. Rarer causes included various virilizing tumors and hypo- and hyperpituitarism.

Differentiating Anxiety Associated with Medical Illnesses from Primary Anxiety Diseases

After the clinician has established the presence of a general medical condition known to be associated with significant anxiety symptoms, he/she should undertake a careful and comprehensive assessment of the factors necessary to link the two conditions. Although there are no absolute guidelines, certain associations are helpful in establishing this connection. Are the onset of the symptoms temporally related? Is there a temporal association between the exacerbation or remission of the general medical condition and the enhancement or abatement of anxiety symptoms? Do anxiety symptoms disappear when the primary medical condition is treated? Are features that are atypical of a primary anxiety disorder present such as the usual age of onset, the initial presentation, type of onset, or an absence of family history? The clinician should also judge whether the disturbances that are present may be better accounted for by the presence of a primary anxiety disorder, a substance induced anxiety disorder, or an adjustment disorder brought on by the diagnosis of a primary medical condition.

In earlier work, reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered. In comparing these patients to patients with primary anxiety disorders seen in clinic, certain characteristics differentiated the patients with organic anxiety from those who suffered from a primary or psychogenic anxiety disorder. 1.) Patients with anxiety secondary to underlying medical illnesses tended to have disease characteristic fluctuations in the severity and duration of their anxiety or panic attacks. 2.) There was a clear cut association between the progression of their anxiety and their underlying disease. 3.) Medically induced anxiety disorders were most likely to have onset before the age of 18 or after the age of 35 in patients with a negative personal and family psychiatric history of anxiety or affective disorders and in patients who had not previously suffered from anxiety symptoms."

Fitness fanatic goes from size 10 to 18 in weeks after pituitary gland tumour | Mail Online

Do you see your story when reading Kathryn's?

http://www.dailymail.co.uk/health/article-1348504/Fitness-fanatic-goes-size-1...

Trip Recap

So much has happened in the last few days. I'm on the plane with 30 minutes left in my 3 hr non stop flight home. Cloud cover prevents me from seeing the kitties below, but we must be over Texas by now.

Many Cushing's patients travel from all over the US and Canada to receive treatment in Los Angeles. I'll provide more details later on that. So, I thought I'd share travel info with my Cushie friends in hopes of making their medical trip a tad more pleasurable.

Rather than tell the story chronologically, I decided to try to write in little bits and pieces. Some will be medical. Some will be touristy. Some will be my random thoughts, and that's allowed because it's my blog. :)

I lived in Los Angeles and Long Beach a decade ago. It has been the most favorite city that I've ever lived in. That's saying something, too. I have lived in 10 different cities since flying my mama's coup for college. My point? I love LA to pieces, and I'd love for you to experience the LA that I know and love.

Let's start with these wonderful plants--birds of paradise. They are everywhere, and they always a lovely reminder that the warm sun keeps the City of Angels exciting and exquisite. ~ mm

See and download the full gallery on posterous

Making Good Use of our Time Away

If we have to spend thousands of dollars to travel to see Cushing's specialists, we should at least have some fun while we are at it.

I am super excited that Colin Firth, the actor, is getting his star on the Hollywood Walk of Fame this week!!! I am totally going!!! He is one of my favorites :) He is a total doll face.

Colin Firth
("Bridget Jones", "Pride and Prejudice")

Thursday, January 13, 2011 at 11:30 a.m.
(6714 Hollywood Blvd, near McCadden)

Cushies, you can check the schedule to see who will be here the week you have your appointment out here. Heck, you can schedule your doctor appointment around this schedule! Hahaha

CELEBRITIES ABOUT TO RECEIVE STARS ON THE HOLLYWOOD WALK OF FAME

The celebrities listed below will appear in person on Hollywood Blvd or Vine Street to receive their stars. (Except, of course, for those awarded their stars posthumously).

http://www.seeing-stars.com/Calendar/index.shtml#WalkOfFame

See and download the full gallery on posterous

Life as a Cushie

I am starting a series, like a photo essay, trying to explain how Cushing's impacts my daily life. Today, I point out that the seat belt in the airplane is near the maximum allowed length. It's around my waist with but an inch to spare. Thankfully it is a little loose. I almost cried when I buckled up today. My stomach has gotten so big. I just don't feel like this is my body anymore. It has a mind of its own, following cortisol's instructions instead of mine.

Like other embarrassing or emotional debilitating moments with this disease, I acknowledge it, and I release it. These thoughts no longer serve me, and I'm doing the best I can. Fighting for myself. Trying to figure out a loop hole in the system to try to get myself better sooner. I have pushed myself all along. I will try to forgive myself and be more understanding of my situation in 2011. Kindness to all, including myself.

-mm

See? Flying High

Life as a Cushie

Heading for Help

I am sitting on a plane, headed to Los Angeles, CA. I hope that my search for a compassionate and knowledgeable doctor will end with my appointments this week.

Many Cushing's patients have guided my decision to try this doctor. He is a cushing's specialist. These patients blazed the path, and I thank them for all of their efforts to help fellow Cushies.

I will be updating from LA. I hope it will helpful and informative to go on my trip with me.

-- mm

GET YOUR LABS THROUGH AN APP :)

I have a major issue with testing all the time for Cushing's. Besides the obvious hassle of *having* to test so much to prove that I am sick, I want my results ASAP.  I do not want to wait. I don't need a doctor to tell me what they mean (well, 90% of the time), and I certainly don't like asking the nurse or caller follow-up questions for no real answers. I have realized they are just reading or repeating what the doctor said. 

My life saving go-to websites are LabTestsOnline and Cushing's Help and Support message boards. I get so much more information in real terms that I can understand from these sites.  Then, I take what I learn and discuss it with my doctor at the next appointment.

So you can imagine my thrill in finding out Quest Diagnostics has a new free app called Gazelle. This app is available in select states and on the Apple® iPhone, iPod Touch, and BlackBerry® Curve, Bold, Tour, and Storm. Android is coming soon!

After registering with Quest Diagnostics, click lab results.  You will enter the date of service, doctor's name and phone number. You get an email confirmation that your request was received. Labs are not returned immediately, unfortunately.  They are emailed a few days after the request is made. The system emails it to the email addy in your profile. The abnormal values are highlighted in blue. Easy to read!  Plus, it's a good first step in my efforts to get all of my medical records digitized and easily accessible online. In addition, the patient can email the results to any email address. I email them to myself, and voila!   Digital copy :)  I am super pleased with this development.

Here is a link to all Quest Diagnostic apps.

I have an appointment with Quest for a blood draw this Wednesday.  After my appointment, I plan to enter the information into the app, so that I will have an email as soon as they are ready. I really hope this system is responsive and resolves my need-to-know inclinations.  It's my life, my labs, and I want them :).

Viva la digital revolution!

~mm

HERstory: A look back

I wanted to share a post I wrote nearly one year ago. The  HerStory post shows my previous collage and how to make one for yourself.

~Moxie Melissa

Change's a-Comin'

You may notice that some recent posts are short and look different from my previous entries.  That's because I found a way to post to the blog more efficiently, which hopefully, translates to more often.  So!  I will be passing along all sorts of goodies: medical articles, trip updates, MRI results, etc.  I hope you are up for the traffic increase!  As always, you are welcome to email me at any time at moxiemelissa (at) gmail.com. :D

Erella's Story

Erella, who is featured in the last post, also has a one hour CBC 1999 documentary about her and her  introduction to the cushings world. It is 67 megs and you have to carefully follow instructions with rapidshare in the FREE DOWNLOAD area.http://rapidshare.com/files/441306528/01_Brain_Surgery_For_My_Soul.mp3

I want to thank Erella for sharing so much of herself and her story, as we all learn the most about Cushing's from other Cushies. 

Hugs to you, Erella.

Melissa

Cushing's documentary

Check out Erella's 30 minute documentary featuring her battle with Cushing's. http://www.erella.com/Video_Lightbox/index.html

SOS: Help a Cushie

26-year old Kathryn would like to hear from anyone with the same condition. She can be contacted by e-mailing kathrynanne1984@hotmail.co.uk

http://www.runcornandwidnesweeklynews.co.uk/runcorn-widnes-news/runcorn-widne...

New test for the Growth Hormone Deficient?

AEterna Zentaris, Inc. (Nasdaq:AEZS) announced that it has reached agreement with the Food and Drug Administration (FDA) on a Special Protocol Assessment (SPA) for Solorel® (AEZS-130, macimorelin) which will enable the Company to complete the ongoing registration study required to gain approval as a diagnostic test for Adult Growth Hormone Deficiency (AGHD).

Aeterna Zentaris is a late-stage oncology drug development company currently investigating potential treatments for various cancers including colorectal, ovarian, endometrial cancer and multiple myeloma.

GUEST POST: Best Kept Secret in Medicine

Sharmyn McGraw emailed this last week. You can read my previous posts about Sharmyn for some of the best info we have about Cushing's--from the patient's perspective here and here.

******************************

~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor. 

Hello everyone!

Please take one minute and watch this video, Dr. Daniel Kelly from the John Wayne Cancer Institute in Santa Monica, CA. 

Pituitary gland problems have many symptoms (video and article)
       *(melissa says, "then share it with all your friends on facebook!"

Many of you know I am a national spokesperson for those afflicted with Pituitary Brain Tumors and/or Hormonal Disorders-The Best Kept Secrete in Medicine. And don’t panic, I have never asked anyone for a financial donation and I’m not now, but I do need your help.

I receive over a 150 emails a day and many of them are from people asking me to pass along a prayer or some damn thing to a zillion of my closest friends or you and everyone you know will have some angel pissed off and there will be no blessing for you….! WELL, it’s time we pass around something that can really make a difference in your life or even save someone’s life-I promise!!!!

Through the years I have done professional speaking, TV shows and written articles all to help raise awareness for those afflicted with pituitary disease. But the biggest impact was the show I did for the Discovery Health channel, Mystery Diagnosis; the show features my story living undiagnosed for seven horrible years with Cushing’s disease, caused by a pituitary brain tumor. Thank God the show is still airing and still saving lives!!! So please send this email to a zillion people to help make an even bigger impact!!!! And watch the ABC special with Dr. Kelly and pass it to all your friends, put it on FaceBook, YouTube, and Tweet your friends. Healthcare needs our help!!!

I have received hundreds of emails through the years and met hundreds of people whose lives were forever changed because of one TV show. Literally because of one Mystery Diagnosis episode people have been correctly diagnosed with a disease that doctor after doctor missed for years and years. Sadly in many cases because of a prolonged diagnosis it left the patient disabled, not because the pituitary tumor wasn’t treatable but simply because of lack of current and accurate information among our medical professionals and the public.

Pituitary tumors are the Best Kept Secrete in Medicine because they are so often misdiagnosed but can cause so many people to suffer or even worse die without proper treatment. Usually the patient symptoms present as multiple common health issues and unless your medical professional is trained to recognize the signs and symptoms related to a hormonal disorder caused by a pituitary tumor the patient is often left undiagnosed or treated for many different health conditions but never getting to the root cause.

The hard facts are we lack proper education so severely in the US about pituitary tumors and/or hormonal disorders that even our highly respected Dr. Oz made a completely inappropriate comment on TV about a patient that was found to have a pituitary tumor on the Oprah show. His statement was something about simply “plucking” a pituitary tumor out which is a perfect example of the lack of education even among a medical doctor who is looked at by many people as a know-it-all of medicine. But no one medical professional knows everything; however, when a patient presents with a laundry list of poor quality of life issues or a pituitary tumor is found on an MRI it certainly warrants a proper medical evaluation and if it is out of the doctors expertise they need to step up and refer their patient for another opinion.

Pituitary disease is a subspecialty field of Neuro-endocrinology. Obviously as a cardiologist it is out of Dr. Oz’s expertise but like many medical professionals, grossly downplaying the severity of a life threatening illness or not admitting when something is out of their level of expertise is just bad healthcare. Most pituitary patients go far too long without a proper diagnosis and in far too many cases never getting a diagnosis at all. We have been trained to trust our doctors and assume we are getting the best medical treatment; unfortunately when it comes to a pituitary disorder that just isn’t the case.

Pituitary tumors and/or disorders can cause: Rapid weight gain (obesity) or weight loss, heart disease, diabetes, high blood pressure, depression, anxiety, infertility, low libido, sleeplessness, hair lose, abnormal hair growth, enlarged hands/feet/jaw, blindness, and more. Most people suffer for years with a pituitary tumor and are most often told by their physician, “It’s all in your head. Exercise more and eat less” Well they are party correct but for all the wrong reasons...the pituitary gland sits at the base of the brain, and yes, hormonal disorders caused by a pituitary tumor can at times make the patient feel mentally unstable but more exercise and eating less is not proper treatment for a serious brain tumor. And we need better education for our medical professionals.

Studies show one in five adults may have a pituitary tumor-that’s 20% of our population. A healthy pituitary gland is as important to our quality of life as a healthy heart, liver, kidneys, and any other major organ or body part.

The good news is pituitary disorders in most cases is a treatable illness if a timely and accurate diagnosis is made but unfortunate they are life threatening when left untreated. So please take time to educate yourself and others about the Best Kept Secrete in Medicine. Please pass this email to everyone you know and FORSURE you will be improving someone’s life and you could even be saving someone’s life.

Many blessings,

Sharmyn McGraw

www.brain-tumor.org or www.hormones411.org
 

~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center www.brain-tumor.org at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor.