Tuesday, September 29, 2009

An NIH survey about health stuff. Fill it out if you have a minute :) http://ow.ly/rEkt

Tuesday, September 29, 2009

Addison's Blog Alert

Training because I can! Addison's disease, exercise and living in ...
By Dusty

Just because you have Addison's Disease or another chronic illness, don't settle for half a life when so much more is possible! You can have good health, you can do the things you want to do no matter what they are! ...

Training because I can! Addison's... - http://addisonssupport.blogspot.com/

Friday, September 25, 2009

New Cushing's Helpful Doctor added in North Carolina http://ow.ly/r4qo

Friday, September 25, 2009

Cushing's locations page updated, 3 new people added. http://ow.ly/r4ku

Tuesday, September 22, 2009

Thanks so much, Robin! RT @staticnrg: @cushings Happy Birthday!!!!! W00t!!!!!!!

Tuesday, September 22, 2009

Thanks so much, Jess! :) RT @llama3234: @Cushings HAPPY BIRTHDAY!! HOPE IT'S GREAT!

Saturday, September 19, 2009

RT @staticnrg: @kevinmd http://ping.fm/snhU2 (worth a read)

Friday, September 18, 2009

Thanks! I try :) RT Get2BJ: @cushings Liking the look of the new site, very easy on the eye!

Friday, September 18, 2009

New for members of http://www.cushie.info! Track health & fitness stats. Achieve your goals, print charts for doctors. Add your own items.

Friday, September 18, 2009

You bet! Thanks! RT @staticnrg: RT @ekivemark: #med2 Patients value unedited, uncensored and non-statistical infor <==Yes! ( @cushings )

Friday, September 18, 2009

Jon's pituitary interview from last night available on Cushie Chats Podcast (iTunes) and online at http://ow.ly/pZX5 OR http://ow.ly/pZYl

Friday, September 18, 2009

Addison's Blog Alert, 9/18/2009

Addison's disease: two years post-diagnosis « Oikos mou
By Lauren

This time two years ago, I was in the harsh throes of undiagnosed, untreated Addison’s disease. I find it difficult to write about personal stress in my life, and Addison’s disease has stress as its epicenter. I find it even more difficult to write about my own church as a source of stress, but all relationships in one way or another come with stress, and a church presents a lot of relationships. These difficulties notwithstanding, I hope my account might be useful — validating, vindicating, or encouraging — for other people with Addison’s who have experienced, for whatever reasons in their own lives, overwhelming stress. The point is, each person must manage his stress where he encounters it.


Many people experience “anniversary stress” around the same time that a very stressful event occurred in a previous year. I suppose right now I’m experiencing anniversary stress over events and sensations that I experienced in the months before and following my diagnosis...

Read the rest at Oikos mou - http://fellowprisoner.wordpress.com/

Thursday, September 17, 2009

@staticnrg Thanks for being there! It's always better when you are :)

Thursday, September 17, 2009

Archives will be available after the interview at http://ping.fm/sT29f and iniTunes

Thursday, September 17, 2009

Read Jon's bio at http://ping.fm/evEDd

Thursday, September 17, 2009

Tonight! in 30 minutes Cushing's Interview with Jon, pituitary patient. Listen http://ping.fm/9Kr2e

Wednesday, September 16, 2009

RT @rilescat: Please help to build the Health Care Social Media List...put a link on your blog or site: http://ow.ly/pKhm

Wednesday, September 16, 2009

RT @invisibleillwk: Effectively communicate your illness & #pain #iiwk09 seminar Karen Lee Richards 9/17 530PM http://ow.ly/pcHm

Wednesday, September 16, 2009

Thurs, 7:30PM EST Cushing's Interview with Jon, pituitary patient. Listen at http://ping.fm/oZmFO Call-in 646-200-0162

Tuesday, September 15, 2009

RT @staticnrg: Is Cushing's an invisible illness?? You bet: #iiwk09 #invisibleillness #cushings http://ow.ly/pyY6

Monday, September 14, 2009

RT @accarmichael: Awesome Amy Tenderich talk: pts use networks for information, emotional support, advocacy.Also decision support! #txfm09

Monday, September 14, 2009

Diagnosing Pheochromocytoma (Adrenal Tumor)

Posted by Allie Vance | 13 September 2009, 7:30 pm

The body’ s electrolytes (sodium and potassium) levels are maintained by the kidneys and also by two small glands that sit right on top of each kidney. These glands are called adrenal glands. An uncommon tumor, called pheochromocytoma (present in 0.2% of people who have high blood
pressure), may sometimes be present in one of the adrenal glands. This can throw a diagnostic puzzle at the physician. You may end up getting treated for a variety of disorders, such as panic attacks, hypertension, heart arrhythmia, migraine headaches and more. This little devil has can mimic almost anything. In my clinical practice I have come across one such case.

Step 1

The mechanism behind the signs and symptoms of pheochromocytoma is the secretion of various chemical and hormonal substances released by the tumor cells such as serotonin, epinephrine, norepinephrine and dopamine. Most of these hormones are excitatory and are normally secreted by the body especially on the occasions of excitement, causing an increase in the heart rate, blood pressure, breathing and sweating.

Step 2

The “Classic triad”:

The three classical symptoms of pheochromacytoma that should prompt your doctor to evaluate you for pheochromocytoma are: episodic headache, sweating and tachycardia.

Step 3

Sustained or paroxysmal hypertension is the most common sign of pheochromocytoma. A young person with very high blood pressure should definitely be considered for evaluation of pheochromocytoma. Five to 15 percent of patients, however, have normal blood pressure.

Step 4

Other symptoms may include palpitations, shortness of breath, generalized weakness and panic attack-type symptoms.

Step 5


The following labs should be ordered if Pheochromocytoma is suspected:

* A 24-hour urine catecholamine and metanephrines
* Fractionated plasma free metanephrines
* Plasma catecholamine
* Clonidine suppression test (A drug called Clonidine is administered orally, and plasma catecholamine or fractionated metanephrines are measured before and three hours after the dose)

Radiologic tests:
* CT and MRI may be used to locate the tumor in the adrenal glands
* If CT and MRI fail to locate the tumor and if the biochemical tests are positive then 123-I-metaiodobenzylguanidine (MIBG) scintigraphy may be done

Other imaging:

* Octreoscan
* Total body MRI
* PET scanning (Positron Emission Topography)

Warnings About 10 percent of all catecholamine-secreting tumors are malignant. Malignant pheochromocytomas are histologically and biochemically the same as benign ones. The only difference is that malignant pheochromocytoma is locally invasive and throws distant metastases, which may occur as long as 20 years after resection. Therefore a careful follow-up is warranted

- By shahbasharat | AC


From http://zikkir.com/index/32478?wscr=1280x1024

Sunday, September 13, 2009

Who helped you learn Twitter? Tweet their @username & add #TwitterHelper http://j.mp/15OPg0 - @staticnrg convinced me to try it.

Sunday, September 13, 2009

RT staticnrg: Growth Hormone for Survival: It's not always controversial http://ping.fm/ITjla

Saturday, September 12, 2009

RT @MollyDugganLLC: Womens Health: Calendar of Events Date: September 2009 October 2009 Novemb http://bit.ly/6qUA2 Full http://bit.ly/Vvj5h

Saturday, September 12, 2009

Did you know you could *listen* to Cushing's posts at http://ping.fm/KgbKT ? Info is read aloud at the click of a button!

Saturday, September 12, 2009

Several studies have suggested that the prevalence of Cushing's syndrome is higher than previously thought. http://ow.ly/p6iZ

Saturday, September 12, 2009

Cushing's locations page updated, 4 new people added. http://ow.ly/p6cE

Saturday, September 12, 2009

4 new and updated Cushing's bios added. dx include 2 pituitary, 1 undiagnosed, 1 steroid-induced http://ow.ly/p69G

Saturday, September 12, 2009

Have you found www.cushings-help.com website? Also, message/support boards there? http://ping.fm/3I9Bl

Saturday, September 12, 2009

Rare disorder explains JFK's health woes

A review of President Kennedy's medical records also shows a family history of autoimmune diseases.

By Susan J. Landers, AMNews staff. Posted Sept. 11, 2009.


New research points to an autoimmune endocrine disorder as the cause of at least some of President John F. Kennedy's health problems.


Despite his relative youth -- at 43, Kennedy remains the youngest person elected president -- and his seeming vigor, Kennedy "had the most complex health history of anyone to occupy the White House," said Lee R. Mandel, MD, MPH, senior medical officer of the aircraft carrier USS George H.W. Bush and a historian interested in presidential medicine. His findings were published in the Sept. 1 Annals of Internal Medicine (www.annals.org/cgi/content/abstract/151/5/350/).


For his study, Dr. Mandel combined evidence gleaned from his review of Kennedy's medical records at the John F. Kennedy Presidential Library and Museum in Boston, with material obtained from additional sleuthing. Kennedy's complex medical history has received much scrutiny since his medical records were made public in 2002.


Dr. Mandel found mentions of Kennedy being diagnosed with hypothyroidism and Addison's disease.

"The fact that Kennedy, who unequivocally had Addison's disease, also had hypothyroidism leads to the plausible conclusion that there was an autoimmune basis for his medical problems, and APS 2 [autoimmune polyendocrine syndrome type 2] explains these conditions," Dr. Mandel wrote.


"I saw the common thread that other people had commented on casually," he said in an interview. "I think he did have an autoimmune syndrome."


Autoimmune thyroid disease coexists with Addison's disease in two-thirds of cases. APS 2 typically occurs in early adulthood, at around age 30, the age Kennedy was when Addison's disease was diagnosed, Dr. Mandel said.


Autoimmune syndromes are often found in families, he added. "[Kennedy's] sister Eunice [Kennedy Shriver], who just passed away, was believed to have Addison's disease and his son, John F. Kennedy Jr., had Graves' disease."


Kennedy also had intestinal ailments likely caused by undiagnosed celiac disease, Dr. Mandel said.


In an era when media scrutiny is less intense than today, Kennedy and his physicians were able to conceal many of his health problems or attribute them to heroic activities. For example, back pain stemming from his degenerative condition was instead attributed to a war injury. Symptoms from his Addison's disease were described as a recurrence of malaria contracted in World War II.


But even if he were running for election today rather than in 1960, Kennedy's Addison's disease would likely not prove an obstacle. Even without modern advances, Kennedy's disease was well-controlled, Dr. Mandel said. He attributed that feat to Kennedy's endocrinologist, Eugene Cohen, MD, "the brains behind the management of the disease."


From http://www.ama-assn.org/amednews/2009/09/07/prsf0911.htm

Thursday, September 10, 2009

11 new Cushing's symptoms photos added September 10, 2009 http://ow.ly/oUUc

Thursday, September 10, 2009

I've had the petrosal sinus sampling and lots on the message boards have! http://ow.ly/oUTn

Thursday, September 10, 2009

Petrosal sinus sampling? Lots have! RT stillenuf: Anyone had the cavernous & p? where they go in both sides of groin.. to determine cushings

Thursday, September 10, 2009

Please join us! RT @staticnrg: @cushingsfriend Have you discovered http://ping.fm/aQlsY I hope you'll join us there.

Saturday, September 05, 2009

@cushingsfriend I hope so, too! I think he'd learn a lot and meet others. That's the best, meeting others in same boat.

Saturday, September 05, 2009

Gender Role Behavior, Sexuality, and Psychosocial Adaptation in Women with Congenital Adrenal Hyperplasia due to CYP21A2 Deficiency

Louise Frisén, Anna Nordenström, Henrik Falhammar, Helena Filipsson, Gundela Holmdahl, Per Olof Janson, Marja Thorén, Kerstin Hagenfeldt, Anders Möller and Agneta Nordenskjöld1

Department of Psychiatry (L.F.), Danderyd Hospital, SE-18287 Stockholm, Sweden; Department of Clinical Sciences (L.F.), Karolinska Institutet, Danderyd Hospital, SE-171 77 Stockholm, Sweden; Department of Pediatrics (An.N.), Astrid Lindgren Children Hospital, Karolinska University Hospital, SE-171 76 Stockholm, Sweden; Department of Clinical Science, Intervention, and Technology (An.N.), Karolinska Institutet, SE-171 77 Stockholm, Sweden; Department of Endocrinology, Metabolism and Diabetes (H.Fa., M.T.), Karolinska University Hospital, SE-171 76 Stockholm, Sweden; Department of Molecular Medicine and Surgery (H.Fa., M.T.), Karolinska Institutet, SE-171 77 Stockholm, Sweden; Department of Endocrinology (H.Fi.), Sahlgrenska University Hospital, Sahlgrenska Academy at University of Gothenburg, S-405 30 Gothenburg, Sweden; Department of Pediatric Surgery (G.H.), Queen Silvia Children Hospital, Sahlgrenska Academy at University of Gothenburg, S-405 30 Gothenburg, Sweden; Department of Obstetrics and Gynecology (P.O.J.), Sahlgrenska University Hospital, Sahlgrenska Academy at University of Gothenburg, S-405 30 Gothenburg, Sweden; Department of Woman and Child Health (K.H., Ag.N.), Karolinska Institutet, SE-171 77 Stockholm, Sweden; Nordic School of Public Health (A.M.), SE-402 42 Gothenburg, Sweden; and Department of Pediatric Surgery (Ag.N.), Astrid Lindgren Children Hospital, Karolinska University Hospital, SE-171 76 Stockholm, Sweden


Address all correspondence and requests for reprints to: Louise Frisén, M.D., Ph.D., Research and Development Section, Department of Psychiatry, Danderyd Hospital, SE-18287 Danderyd, Sweden. E-mail: louise.frisen@ki.se.


Context: Gender-atypical behavior has been described in young girls as well as in women with congenital adrenal hyperplasia (CAH) due to a CYP21A2 deficiency.


Objective: The aim of the study was to assess health-related, psychosexual, and psychosocial parameters and correlate the results to CYP21A2 genotype.


Design and Participants: Sixty-two Swedish women with CAH and age-matched controls completed a 120-item questionnaire and a validated quality of life instrument [psychological general well-being (PGWB) formula] to identify psychosexual and psychosocial parameters. The patients were divided into four CYP21A2 genotype groups.


Results: The women with CAH held more male-dominant occupations (30%) compared to controls (13%) (P = 0.04), especially those in the null genotype group (55%) (P = 0.006). They also reported a greater interest in rough sports (74%) compared to controls (50%) (P = 0.007). Eight women with CAH (14%) reported a prime interest in motor vehicles, compared to none of the controls (P = 0.002). Non-heterosexual orientation was reported by 19% of women with CAH (P = 0.005), 50% in the null genotype group (P = 0.0001), 30% in I2splice (NS), and 5% in I172N (NS). PGWB total score did not differ between patients and controls.


Conclusion: We identified increased gender-atypical behavior in women with CAH that could be correlated to the CYP21A2 genotype. This speaks in favor of dose-dependent effects of prenatal androgens on the development of higher brain functions. The impact of the disease on upbringing and interpersonal relationships did not correlate with disease severity, indicating that other factors, such as coping strategies, are important for psychosocial adaptation. This illustrates the need for psychological support to parents and patients.


from http://jcem.endojournals.org/cgi/content/abstract/94/9/3432

Wednesday, September 02, 2009

6 new Cushing's bios added. 1 adrenal, 4 pituitary, 1 undiagnosed http://ping.fm/Ivul8

Wednesday, September 02, 2009

6 new Cushie locations added. http://ow.ly/nOgk

Wednesday, September 02, 2009

Lots of us with Cushing's! RT DupontDan: Why do the docs on house always think the patient has cushings...? Does anyone actually get those?