Interview May 7 with Kathy C, Pituitary Patient

Posted on May 6, 2014 by MaryO

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

Kathy will be interviewed May 7, 2014 in BlogTalkRadio

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Cushing’s Awareness Challenge: Day 12

Posted on April 12, 2014 by MaryO

robin-head

 

Mail!  I get all kinds of email asking questions about a variety of Cushing’s issues.  I’m not a doctor and I don’t play one on TV.  I don’t even play one on the internet.  People are desperate for answers, though, so the questions keep coming and I try to answer the best I can.

Here’s a recent question and answer.  Note that you have to be logged into the message boards to view the links in this post.

 

Question: My daughter was diagnosed w/ cushings in 2001 at the age of 20 & had the pituitary surgery.

In late 2013 she was diagnosed with a recurrence. I’ve read that that usually happens within 5 years, not a dozen years.

Regardless, there is a new research program but she was told she doesn’t qualify for it. The other medications offered are either exhorbitant ($100-200,000/year), another causes liver damage, another causes uterine problems. A 2nd surgery is not recommended according to  the surgeon (because there would be only a 50% rate of success due to the scar tissue from the original surgery), and radiation is being vetoed as well, being recommended ONLY as a very last possible resort.

Are there other parents who chat & share experience here? Will I find help as a parent here with my frustration over this disease? Are there other patients who communicate here that are from Michigan?  Are there other patients here who are suffering from the recurrence? Don’t get me wrong, I’m happy to find on several sites online today that there are so many success stories; I would just like to know what other options there are that perhaps our Dr. is missing.  Thanks.

My response:

S, since you have a Board Name, I assume that you are a member of the message boards.

There are areas specifically for recurrence – http://cushings.invisionzone.com/index.php?/forum/35-recurrences/

People in Michigan: http://cushings.invisionzone.com/index.php?/topic/13696-michigan/

Parents of patients: http://cushings.invisionzone.com/index.php?/forum/31-parents-spouses-children-and-friends-of-patients/

The more you read, the more you will learn.  Many patients with a recurrence  have a second pituitary surgery.  She might need to get another opinion from another surgeon.

Another option is a BLA – or have her adrenal glands out.  That can cause other issues, though.

The 2 drugs you  mentioned are Signifor and Korlym.  Although both are expensive, each has a patient assistance plan which lowers the cost dramatically.  Doses can vary dramatically so that they don’t necessarily cause liver or uterine issues.

Ketoconazole is another drug that’s sometimes used.

I did a search on the boards and there are 69 topics for Mifepristone (generic Korlym), 51 topics discussing the brand name Korlym, 40 for pasireotide (generic Signifor), 13 for the brand name Signifor, and 69 for keto (the common abbreviation on the boards for ketoconazole)

Here’s a personal experience from a woman on Korlym who likes it: http://cushings.invisionzone.com/index.php?/topic/53342-i-like-korlym/?hl=korlym

So – the information is out there.

I know it’s hard to process all this and make decisions.

I know it’s hard to process all this and make decisions. I had my one pituitary surgery in 1987, before the Internet was available so I had to really research all this in medical texts.

At that time, there weren’t any drug options. Just surgery and radiation. I decided off the bat if I should have a recurrence, I would not do radiation. I’d go for another pituitary surgery first, then a BLA if needed.

But that was then and this is now.  There is way more information which is much easier to find.  There are better surgical options and even some more medical ones.

Good luck!

8e1d2-maryo_colorful_zebra

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Researchers at Department of Endocrinology and Diabetes Release New Data on Cushing Syndrome

Posted on September 19, 2013 by MaryO

By a News Reporter-Staff News Editor at Biotech Week — Research findings on Adrenal Gland Diseases are discussed in a new report. According to news reporting originating from Melbourne, Australia, by NewsRx correspondents, research stated, “Stereotactic radiation therapy has emerged as an alternative to conventional radiotherapy for treatment of Cushing disease. The aim of this study was to investigate the efficacy and safety of this treatment.”

Our news editors obtained a quote from the research from the Department of Endocrinology and Diabetes, “Records of patients with Cushing disease treated with stereotactic radiation were reviewed. Seventeen patients underwent stereotactic radiosurgery.”

According to the news editors, the research concluded: “Ten achieved remission after a mean of 23 (95% confidence interval, 15-31) months, and two developed hormone deficiencies.”

For more information on this research see: Stereotactic radiosurgery for treatment of Cushing disease: an Australian experience. Internal Medicine Journal, 2012;42(10):1153-6. (Wiley-Blackwell – www.wiley.com/; Internal Medicine Journal – onlinelibrary.wiley.com/journal/10.1111/(ISSN)1445-5994)

The news editors report that additional information may be obtained by contacting L. Wein, Dept. of Endocrinology and Diabetes, Alfred Hospital, Melbourne, Victoria, Australia. Additional authors for this research include M. Dally and L.A Bach (see also Adrenal Gland Diseases).

Keywords for this news article include: Melbourne, Treatment, Radiotherapy, Radiation Therapy, Cushing’s Syndrome, Adrenal Gland Diseases, Australia and New Zealand.

Our reports deliver fact-based news of research and discoveries from around the world. Copyright 2013, NewsRx LLC

From http://www.hispanicbusiness.com/2013/9/18/researchers_at_department_of_endocrinology_and.htm

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Cushing’s Disease – Rare Disease Quick Facts

Posted on July 13, 2013 by MaryO

cushings-diagnosis

 

 

Cushing’s disease is a rare condition due to excess cortisol levels that result from a pituitary tumor secreting adrenocorticotropic hormone (ACTH), which stimulates cortisol secretion.  Cushing’s disease should not be confused with Cushing’s syndrome which is increased cortisol levels but that increase can be due to any number of factors. However, Cushing’s disease is the most common form of Cushing’s syndrome.

Symptoms

The symptoms related to Cushing’s disease and Cushing’s syndrome are the same, since both are related to an excess of cortisol. Also, symptoms vary extensively among patients and that, with the inherent fluctuation in hormone levels make it difficult to diagnosis both conditions.

Changes in physical characteristics of the body

  • Fullness and rounding of the face
  • Added fat on back of neck (so-called “buffalo hump”)
  • Easy bruising
  • Purplish stretch marks on the abdomen (abdominal striae)
  • Excessive weight gain, especially in abdominal region
  • Red cheeks
  • Excess hair growth on the face, neck, chest, abdomen and thighs

Changes in physiology/psychology

  • Generalized weakness and fatigue
  • Menstrual disorder
  • Decreased fertility and/or sex drive
  • High blood pressure that is often difficult to treat
  • Diabetes mellitus
  • Mood and behavior disorders

Diagnosis

The early stages of Cushing’s disease may be difficult to recognize. However, if it is suspected, diagnosis is generally a 2 stage process. First to determine if cortisol levels are high, and if so, why they are high.

Tests to confirm high cortisol levels:

  • 24-hour urine cortisol
  • Dexamethasone suppression test (low dose)

Tests to determine cause:

  • Blood ACTH level
  • Brain MRI
  • Corticotropin-releasing hormone test
  • Dexamethasone suppression test (high dose)
  • Petrosal sinus sampling

Treatment

Surgery

  • Most patients with Cushing’s disease undergo surgery to remove the pituitary adenoma offers.
  • If the tumor is isolated to the pituitary, cure rates of 80-85% are common.
  • If the tumor has spread to nearby organs, cure rates of 50-55% are common.

Medicine (approved orphan drugs)

Signifor (pasireotide)

  • Approved for patients with Cushing’s disease for whom pituitary is not an option or surgery has been ineffective.
  • Signifor is a somatostatin receptor agonist that leads to inhibition of ACTY secretion (and subsequently decreased cortisol levels).

Korlym (mifepristone)

  • Approved for patients with Cushing’s syndrome who have type 2 diabetes or glucose intolerance and have failed surgery (or not candidates for surgery).
  • Korlym is a glucocorticoid receptor antagonist which in turn blocks the effects of the high levels of cortisol in the body. Korlym is used to treat high glucose levels due to elevated cortisol.

Medicines used but not indicated for Cushing’s disease include

Mitoden

ketoconazole

Metyrapone

Etomidate

Radiation

  • Radiation therapy may be used in some patients and can be very effective in controlling the growth of these tumors.

Prognosis

In most cases, treatment can cure Cushing’s disease. If not treated properly, the chronic hypercortisolism can lead to excess morbidity and mortality due to increased cardiovascular and other risk factors.

For more information

National Library of Medicine, National Institute of Health

Cushing’s Disease Information (provided by Novartis Pharmaceuticals)

 

Images courtesy of the open access journal Orhanet Journal for Rare Diseases.  Castinetti et al. Orphanet J Rare Dis. 2012 7:41   doi:10.1186/1750-1172-7-41

– See more at: http://www.raredr.com/front-page-medicine/articles/cushings-disease-rare-disease-quick-facts-0

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Approach to testing growth hormone (GH) secretion in obese subjects.

Posted on July 5, 2013 by MaryO

Source

Faculty of Medicine, University of Belgrade, Department of Neuroendocrinology, Clinical Center Serbia, Dr Subotic 13, 11000 Belgrade, Serbia. popver@eunet.rs

Abstract

Identification of adults with GH deficiency (GHD) is challenging because clinical features of adult GHD are not distinctive and because clinical suspicion must be confirmed by biochemical tests.

Adults are selected for testing for adult GHD if they have a high pretest probability of GHD, ie, if they have hypothalamic-pituitary disease, if they have received cranial irradiation or central nervous system tumor treatment, or if they survived traumatic brain injury or subarachnoid hemorrhage.

Testing should only be carried out if a decision has already been made that if deficiency is found it will be treated. There are many pharmacological GH stimulation tests for the diagnosis of GHD; however, none fulfill the requirements for an ideal test having high discriminatory power; being reproducible, safe, convenient, and economical; and not being dependent on confounding factors such as age, gender, nutritional status, and in particular obesity.

In obesity, GH secretion is reduced, GH clearance is enhanced, and stimulated GH secretion is reduced, causing a false-positive result. This functional hyposomatotropism in obesity is fully reversed by weight loss. In conclusion, GH stimulation tests should be avoided in obese subjects with very low pretest probability.

PMID:
23650336
[PubMed – in process]

J Clin Endocrinol Metab. 2013 May;98(5):1789-96. doi: 10.1210/jc.2013-1099.

From http://www.ncbi.nlm.nih.gov/pubmed/23650336

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