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Cortef making me worse?
- By Andreadrenal · New reply May 12, 2012
- Discussion in Treatment · 2 replies
- I've been on Cortef for six weeks for severe adrenal insufficiency. It worked great for a few days but now I'm feeling substantially worse. I don't know if I'm taking too much or not enough. I think I'm ...
Meeting survey - Tennessee and surrounding states
- By joyceg98 · Posted May 6, 2012
- Journal · 0 replies
- The recent VHL meeting in Nashville was great! WE MISSED YOU! http://www.surveymonkey.com/s/K6R2GYP Would you please fill out this brief survey to help us plan the next meeting? Tennessee is a long state ...
Pancreatic insufficiency
- By joyceg98 · New reply April 23, 2012
- Journal · 2 replies
- Today at 3 pm Eastern US time I will be interviewing Tina Gruner, a registered dietitian and certified diabetes educator, about how best to manage pancreatic insufficiency. The pancreas normally secretes ...
Recently diagnosed low growth hormone
- By Loriann6txgirl · Posted April 18, 2012
- Journal · 0 replies
- Hello I am 45 years old, female, recently diagnosed with low growth hormone. I start therapy this Friday on Norditropin. I am interested in any adult that has gone through this and what to expect the ...
The Inspire Q&A: Inspire talks with Howard Luks, MD
- By John2 · New reply April 15, 2012
- Journal · 59 replies
- Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...
Howdy!
- By deducit · Posted April 3, 2012
- Journal · 0 replies
- to everyone who knows deducit i thought i would journal and tell you i am taking a break to get me in order...the diabetes t1 and sps and thyroid disease and osteoporosis is abit more than i can handle ...
Left Adrenal tumor 2.7m/Hashimotos/
- By lgc460 · Posted March 22, 2012
- Discussion in Newly diagnosed · 0 replies
- Hi I have been recently diagnosed with left adrenal tumor 2.7m and I was also told that there is something up with my gallbladder a shadow or some thing. I have been diagnosed with Hashimotos since 1999 ...
Does anyone think BiPolar has ties to adrenalectomy?
- By Debranopatients · New reply March 19, 2012
- Discussion in Newly diagnosed · 2 replies
- Does anyone have BiPolar? That has had a adrenalectomy ...
Chat with Dr. Richard Besser, ABC News
- By joyceg98 · New reply March 14, 2012
- Journal · 8 replies
- Chat Tuesday 1-2 pm with Dr. Richard Besser of ABC News #ABCDrBchat and Joyce on #rarediseases and #VHL. See http://bit.ly/x7L0lF I will be participating in a Twitter Chat with Dr. Richard Besser of ABC ...
Patients Organisation and Support Group for Carney Complex
- By motorgirl85 · Posted March 4, 2012
- Journal · 0 replies
- motorgirl85 * By motorgirl85 · Today at 12:50 pm · 0 replies * In Finding emotional support * Recommend Unrecommend Processing ... Follow replies Stop following Processing ... Problem More options More ...
Care during Adrenal Crisis
- By AIU4Change · New reply February 25, 2012
- Discussion in Treatment · 13 replies
- Please take this survey. http://www.surveymonkey.com/s/6YHVPSC Results will be used to help convince EMS physicians to create Standards of Care for Adrenal Crisis. In addition, if you have a crisis story ...
What would you like to ask Dr. Libutti Feb 29?
- By joyceg98 · New reply February 23, 2012
- Journal · 6 replies
- I am participating with Dr. Steven Libutti on February 29 in a "Twitter chat" on the topic of pancreatic neuroendocrine tumors (Pancreatic NETs). Dr. Libutti is one of the world's experts on pancreatic ...
hyponatremia and pituitary surgery
Twitter Chat re Pancreatic Neuroendocrine tumors
- By joyceg98 · Posted February 16, 2012
- Journal · 0 replies
- Here is the email version of the latest issue of the VHL Family Forum. Enjoy! The paper copies will be arriving in people's homes about the end of February. One exciting event that's happening February ...
The Inspire Q&A--Inspire talks with Susan Grant
- By John2 · New reply February 15, 2012
- Journal · 31 replies
- Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to helping patients and caregivers worldwide. We are posting these interviews ...
Paraganglioma with a twist
- By JR34 · New reply February 15, 2012
- Discussion in Living with an endocrine system disorder · 2 replies
- Hello everyone, My diagnosis has now changed to Metastatic Paraganglioma with an SHDB mutation. My worst fears have been confirmed. Does this disease have to be such a curse. I have been kicking my own ...
Empty Sella/Adreno damage
- By Yearofthedragon2012 · New reply January 29, 2012
- Discussion in Newly diagnosed · 2 replies
- Hello, This is my first entry to find out if others have the same symptoms and diagnoses. I had a stressful divorce and over a 2-3 year span the General MD was treating me for anxiety and told me to eat ...
Scholarships for Sunday in Houston!
- By joyceg98 · New reply January 24, 2012
- Journal · 4 replies
- A few partial scholarships are still available. We need YOU to make the experience complete! Great info and hugs! http://vhl.org/conf2012 ...
VHL 102 course Thursday in Houston (free!)
- By joyceg98 · Posted January 21, 2012
- Journal · 0 replies
- I just finished writing up VHL 102 which I will be presenting this Thursday afternoon in Houston. It's an introduction to the exciting new news that will be presented by the scientists, to make sure attendees ...
Inspire is hiring!
- By Walter · New reply January 20, 2012
- Journal · 15 replies
- Inspire is hiring, and we're wondering if you know someone who would be the perfect addition to our team. Hello everyone, I'm Walter, one of Inspire's founders and the head of our technical team. I'm ...
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