Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman

Dr. Friedman's original PowerPoints may be found at his website. These are very informative and easy to follow.

Publish at Scribd or explore others: Health & Medicine Research tumor adrenal

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Publish at Scribd or explore others: Research tumor adrenal

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Publish at Scribd or explore others: Research tumor adrenal

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Publish at Scribd or explore others: Research tumor adrenal

Amazing Kimberly: A video tracing her journey with Cushing's Syndrome

"For five years the doctors found nothing wrong"


On her blog, Cushing's and Cancer, MaryO shares the story of Kimberly, a Cushing's Syndrome survivor. She says:

This video was kindly sent to me by Kimberly's husband. He did such a beautiful job putting her images into a video with music. This is another great way to help get the word out about Cushing's. Thanks, Randall!

On the YouTube site Kimberly's husband, Randal, says:

The amazing story of Kimberly, whose health began to deteriorate in 1999. A number of unrelated symptoms, including substantial weight gain and fatigue, baffled doctors for over 5 years. She was finally diagnosed with Cushings syndrome in 2005. This video shows her miraculous transition battling through this disease, regaining her health and beauty.

Kimberly, you go, girlfriend!!! Randal, thank you for sharing. I hope this will help others to be diagnosed sooner and easier.

One Good Thing - by Steve Owens

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I have a dear friend, Steve, who is suffering with Cushing's. I met Steve first online at cushings-help.com's message boards over 2 years ago where he was seeking help for a known adrenal tumor. He was passed around to multiple specialists and no one would do anything.

Steve was suffering mightily from the symptoms of Cushing's, yet no one would even test him for that. He persisted and pursued with two Cushing's specialists all the way across the country and was eventually diagnosed with ACTH-dependent Cushing's due to pituitary tumors. (Since many adrenal tumors are due to high ACTH stimulating the adrenals, it was hoped his would go away with the remission of the high ACTH.) He was referred by one for surgery which was done by a top-notch neurosurgeon at M. D. Anderson. Two tumors were removed, one from his pituitary and one from the sella floor.

Steve was not cured. The hopeful demise of the adrenal tumor did not happen, and he is now facing a bilateral adrenalecomy. It will happen next month. In the meantime, he as been on ketoconazole.

Not only does Steve face this after years of his body failing him due to the high ACTH, but his younger daughter is being tested for Cushing's, too. I've met Steve's family in person, and they are as dear as they come. His wife and girls are so supportive of him, and he continues to support others as much as he can in his fight for his life.

All of the above was simply to preface the story below. Steve wrote it and gave me permission to post it. (Love ya, my friend. I know how difficult this was.)

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One Good Thing

If there was ever any hope it is the hope that someday Cushing's will be easier to diagnose and to treat. That doctors will recognize the symptoms and tests are developed that lead from diagnosis to a cure in weeks, not years. If there is one thing I could want to come of all this, it is that. Not just for me, but for all of you, and especially my daughter. It is the hardest thing in the world looking into her eyes. I just want one good thing to come of all this.

These past few weeks have been filled with a lot of emotions, feelings, and just plain being scared. The closer the BLA gets, the more I don't like it. I have no extra spoons to spare to try and conquer the fear, because I am using them to get through each day. The days have been filled with doctors visits, testing for me and Brooke, and work. Nothing out of the ordinary, other than having an infection we cant seem to clear up.

It was at one doctor visit, with Doctor VJ, my family doc, that is the reason of my story. You see, I haven't seen her in a year. My weekly and bi-weekly visits have all been to endo's who are taking care of everything. Well, since they were out of town, I needed to see my family doctor. This is the doctor who wrote tests and she didn't know why, other than we asked for them. She couldn't read results because Cushing's isn't so black and white. This is the doctor who looked at me and knew I had Cushing's, once she read about the physical and not so physical symptoms. This is the doctor who told us my daughter has Cushing's, like her father. This is the doctor who scoured the medical books, talked to other doctors, and researched the internet to learn what she could to help her patients.

We would learn that Dr VJ would have a new patient come to her, one she suspected had Cushing's. Because the doctor took the time to care about me, she would notice the signs and symptoms and be able to run some tests. Because she was able to see a patient that had Cushing's in the past, she was able to see it in her new one. She was able to send her to my endo because she remembered she was helping us and others. This new patient is on the road to recovery already. She is going to be alright.

This made me stop and think. I found this doctor because of the goodwill of a lawyer. This lawyer spent 10's of thousands of dollars of his own money helping me fight and beat the insurance company. This is money he doesnt want back and will not take from us. He did it out of the goodness of his heart. His words were that "there are some things that are so fundamentally wrong in the world and I am just happy that I can help you right one of them." When our family doctor gave up on us, like so many others, he sent us to Dr VJ's office. From there, the doctor and our family grew into a team to help me get better.

I feel so humbled to meet people like these. There are good people in the world. I wanted to give credit to where it is due as well. It would be easy to say that the doctors learned because I did this....or I did that...and that would NOT be true. I know in my heart that I was led to people who could help me at the time I needed it most because I believed and we prayed. I feel humbled that God put me in these doctor's offices so that I could be an instrument of learning.

I believe that every thing we say or do can be remembered, for good or bad, by those around us. Sure, we remember the big things of our lives, but I have so many vibrant memories of the little things. It isn't the big presents I remember most and hold on to dearly. It is the small random acts of kindness that I cherish the most. Everyday, we have the ability to leave a mark on someone's life, even in the smallest of ways. None of us know God's will, but I believe that in that moment of time, when I was sick and out of options, He put me where He wanted me to be and that was the that doctor's office. I had never thought of it that way. I had ALWAYS prayed that something good would come from this to help the next person. If something good was going to come from it all, it was going to come from the powers of up above, not through my works or anything I could do.

My prayer was answered. I know that something good has come from this all, even if it has helped one single person. For that, I am thankful for my blessings. I am thankful for the brief clarity of mind to write it all down.

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Recent Advances in Neuroendocrine Imaging Lead to Improved Diagnosis

Imaging is critical in the diagnosis and care of neuroendocrine disorders. The exponential growth of technology has improved techniques and engineering with medical imaging. In turn, this has affected the effectiveness of these tools.

Neuroendocrine tumors and lesions are found on multiple endocrine organs. Imaging of the pituitary, adrenal, thyroid and parathyroid glands are discussed in this article with perfusion metrics as a basis for evaluation. The MRI is touted as the most recent advance in imaging due to the comparison of sequences (pulse versus standard).

Pituitary imaging using 3 T-based MRI with three-dimensional anisotropy contrast is a relatively new approach to determining cavernous sinus invasion with a pituitary tumor. Dynamic MRI imaging is valuable when imaging microadenomas of the pituitary. 3T imaging with MRI increased the localization of small lesions/tumors, and both approaches are more accurate for patients with mild/episodic hypercortisolism. The value of CSS and IPSS are also discussed.

The addition of perfusion MRI aids in the evaluation of prolactinomas and the effectiveness of the treatment with dopamine antagonists. This, in turn, allows more informed decisions with respect to surgical intervention.

A similar protocol is used for patients with acromegaly caused by growth hormone-secreting tumors and who are treated with octreotide.

The newest addition to the evaluation of the adrenal glands is the the use of "MIBG, Octreotide or PET". This is key to avoidance of a bilateral adrenalectomy due to the lack of localization of an ectopic source of ACTH.

Chemical shift imaging is also being used to determine adrenal hyperplasia and tumors. This technique is based upon the "slightly differing resonant frequencies of protons in water and fat in an external magnet field." Hyperaldosteronism, a cause of hypertension, is one diagnosis that has been improved by this. Perfusion metrics are used with these techniques to improve accuracy in diagnosis.

In addition to the normal use of MRI, CT and ultrasound in the evaluation of the thyroid and parathyroid glands, the author talks about the increased use of PET-CT in the treatment of differentiated thyroid carcinomas with patients where conventional whole body scanning did not work. Perfusion imaging of the thyroid using (FAIR)-true fast imaging with steady precession (FISP) sequence is noted as a possible alternative for evaluating thyroid nodules. The same techniques are suggested for parathyroidism.

The author suggests the use of MRI with neuroendocrine disorders is still young, and there will be improvements over time.


Keogh, B.P. (2008). Recent advances in neuroendocrine imaging. Current Opinion in Endocrinology, Diabetes & Obesity, 15(4), 371-375.

Thursday's news

New Research Indicates That Adrenal Nodules Not Being Adequately Evaluated:

The study, lead by Dr. Leslie Eldeiry, a clinical instructor at Harvard Medical
School, which was conducted at Harvard Vanguard Medical Associates, found that
"only 30 percent of patients underwent biochemical evaluation for adrenal
hyperfunction," which is the production of excessive amounts of hormone.

In 2002, the National Institutes of Health released guidelines recommending
hormonal evaluation of all incidentally discovered adrenal masses. Despite
the 2002 NIH recommendations, only 30 percent of patients were properly
tested. Moreover only 18 percent of patients in the study who did not see an
endocrinologist with adrenal nodules had hormonal testing.

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Cellular 'puncture repair kit' may minimize brain trauma:

Researchers have devised a treatment that mechanically repairs burst cell membranes in the brain, somewhat like puncture sealants used in bicycle tyres, and could therefore help to avert brain damage after serious head injuries.

Brain-injured rats that are injected with a polymer called polyethylene glycol (PEG) soon after their injuries recover certain behavioural abilities better than untreated rats, report researchers in this week’s Journal of Biological Engineering.

Robin's Note: CSF leaks? Something to investigate! Especially for those Cushies enduring them after pituitary surgery.

One for the money, two for the show, three to make ready....

Just how many kinds of tumors are there associated with Cushing's? Wait, are we talking about pituitary tumors? Or adrenal tumors? How about ectopic tumors? Are you beginning to get the picture of why this illness is so hard to diagnose?

PITUITARY TUMORS/ADENOMAS:

So, let's talk about tumors. These are also sometimes called adenomas. Pituitary adenomas are classified several ways. They may be classified by pathology, by size, and by hormone production. I'm going to keep it simple here and list the basic types of tumors by the hormones they produce. Bear in mind that many pituitary adenomas produce more than one hormone. This production is not held in check by the body's normal feedback loops, thus they aren't controlled.

• Corticotroph (ACTH-Producing) Adenomas :
  The corticotroph adenoma secretes adrenocorticotropic hormone (ACTH), which results in Cushing Disease because it stimulates the adrenal glands to overproduce cortisol. These tumors are initially confined to the sella turcica, but they may enlarge and become invasive especially after bilateral adrenalectomy. This is called Nelson's Syndrome.
  
• Somatotroph (GH-Producing) Adenomas:
  Somatotroph adenomas produce growth hormone (GH), resulting in gigantism in younger patients and acromegaly in adults. These tumors may also extend beyond the sella.
  
• Thyrotroph (TSH-Producing) Adenomas:
  Thyrotroph adenomas secrete thyroid-stimulating hormone (TSH), also known as thyrotropin, which results in hyperthyroidism without TSH suppression. Many are large and invasive and typically have other types of adenoma cells included, such as ACTH and/or GH.
  
• Lactotroph (PRL-Producing) Adenomas:
  Lactotroph adenomas secrete prolactin (PRL) and are typically an intrasellar tumor. However, they can become large enough to enlarge the sella turcica.
  
• Nonfunctioning (Endocrine-Inactive) Adenomas:
  These tumors cause symptoms when they extend beyond the sella, which results in pressure on the surrounding structures such as optic nerves and carotid veins. They are not associated with clinical and biochemical evidence of hormone excess.
  
• Carcinomas:
  Pituitary carcinomas, although extremely rare, are usually endocrinologically functional, and ACTH-producing and PRL-producing tumors are the most frequent.
  
• Other Tumors:
  Other tumors of the pituitary include craniopharyngiomas, meningiomas, and germ cell tumors. Even rarer are the granular cell tumors, pituicytomas, and gangliogliomas. Most rare include gangliocytomas, lymphomas, astrocytomas, and ependymomas.

ADRENAL TUMORS/ADENOMAS:

When a tumor in an adrenal gland overproduces hormones, the tumor is called a functioning tumor. A tumor in an adrenal gland that does not produce hormones is, understandably, called a nonfunctioning tumor. A tumor can start in an adrenal gland (called a primary adrenal tumor) or it can begin in another organ, such as the lungs, and then metastasize (spread) to the adrenal glands. I'm going to focus on primary adrenal gland tumors.

• Adenoma:
  An adenoma is a benign nonfunctioning tumor of the adrenal cortex. Also called an adrenocortical adenoma, this tumor usually does not cause symptoms, and, if it is small, may not require any treatment. However, as it grows it can put pressure on parts of the gland causing it to under or overproduce hormones. The cause of adrenal adenomas is unknown, but the current accepted theory is that they arise because of mutations in certain genes. Adrenal adenomas are more common in some inherited diseases, including multiple endocrine neoplasia type I, Beckwith-Wiedemann syndrome and the Carney complex.
  
  Chronic adrenal stimulation by ACTH leads to bilateral adrenocortical hyperplasia and, if long-standing, nodular transformation according to recent research. Thus, an ACTH producing tumor of the pituitary or ectopic tumor may stimulate the adrenals to form tumors or become hyperplastic (more about hyperplasia in a bit).
  
• Adrenocortical carcinoma:
  Although exceedingly rare this is the most common type of malignant adrenal gland tumor, affecting the cortex, also called an adrenal cortical carcinoma. Adrenocortical carcinoma can be a functioning or nonfunctioning tumor. If the tumor is functioning, it may produce more than one hormone.
  
• Pheochromocytoma:
  A pheochromocytoma is a rare tumor that develops in the core of an adrenal gland. It secretes excessive amounts of catecholamines, usually epinephrine and norepinephrine.
  
• Neuroblastoma:
  Neuroblastoma is a disease in which malignant cells form in nerve tissue of the adrenal gland. It is very rare.

If that isn't enough, there is another form of tumor that isn't a tumor. It's called hyperplasia. These tumor cells may invade the pituitary or the adrenals in nests throughout the gland. Rather than go in-depth right now, I'll post some links to articles so you can explore the topic:

Pituitary Hyperplasia: A Review
Adrenal Hyperplasia

This is just a basic, no-frills outline of various tumors/adenomas associated with Cushing's Disease. And now....four to go.....to bed, that is....