Johns Hopkins Pituitary Patient Day

Join us on Saturday, September 19, 2015

7th Annual Johns Hopkins Pituitary Patient Day
Saturday, September 19, 2015, 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

This is a free event, but seating is limited. Reserve your space now: Please R.S.V.P. by September 9, 2015 by email (preferred) to PituitaryDay@jhmi.edu  or by calling Alison Dimick at 410-955-3921.

Agenda

Time Topic Speaker(s)
9:30 – 9:55 AM Registration
9:55 – 10:00 AM Welcome and acknowledgements Roberto Salvatori, M.D.
10:00 – 10:25 AM Different kinds of pituitary adenomas: non-functioning, acromegaly, Cushing Gary Wand, M.D.
10:25 – 10:50 AM New and old medications for pituitary disease (acromegaly, Cushing, prolactinoma, hypopituitarism) Roberto Salvatori, M.D.
10:50 – 11:10 AM A patient’s story TBA
11:10 – 11:30 AM The eye and the pituitary gland: Why it is important to see the right doctor Dan Gold, D.O.
11:30 – 11:50 AM Surgery for pituitary tumors: Pictures from the operating room in acromegaly, Cushing, non-functioning masses Gary Gallia, M.D., Ph.D.
11:50 – 12:10 PM Radiation therapy for non-functioning ademomas, acromegaly or Cushing: Not so scary after all Lawrence Kleinberg, M.D.
12:10 – 12:30 PM Psychological issues in Cushing, acromegaly and other pituitary disease Tracy Vannorsdall, Ph.D.

 

Day Eleven, Cushing’s Awareness Challenge 2015

UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for awhile to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she would’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named

Read Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 10 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November, 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was  just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a ginuea pig again?

The new GH company assigned a rep for me, submitted info to pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?

Stay tuned for tomorrow, April 12, 2015 when all will be revealed.

Read

Read Dr. Barbara Craven’s Guest Chat, October 27, 2004

Thanks for reading 🙂

MaryO

Cortisol Dysregulation and Alcoholism: Consequence, Correlation or Causality?

What

The National Institute on Alcohol Abuse and Alcoholism (NIAAA), part of the National Institutes of Health, announces that Gary S. Wand, M.D., will deliver the 7th Annual Jack Mendelson Honorary Lecture. Dr. Wand is an internationally recognized neuroendocrinologist and the inaugural Rivière Professor in Endocrinology and Metabolism at The Johns Hopkins University School of Medicine. The title of his presentation is “Cortisol Dysregulation and Alcoholism: Consequence, Correlation or Causality?”

Who

Dr. Wand’s research has advanced our understanding of the genetic and environmental determinants of the stress response and has elucidated how excessive stress hormone production may contribute to neurobiological conditions such as alcohol or drug disorders.

Some of Dr. Wand’s seminal discoveries include identifying unique pharmacological responses to naloxone in individuals at increased risk for alcohol use disorders, identifying specific hormonal responses in subjects with alcohol use disorders, and characterizing human brain neurochemical changes using imaging in subjects with substance use disorders.

Dr. Wand is studying the epigenetic modulation of stress and cortisol exposure in rodent and human models, based on the hypothesis that specific epigenetic events affect how much cortisol an individual produces, which in turn influences dopamine transmission.

Dr. Wand received his medical degree and subsequent training in internal medicine from the George Washington University. Following post-doctoral training in Endocrinology and Metabolism at The Johns Hopkins University School of Medicine, he was a fellow in the peptide laboratories of Richard Mains, Ph.D. and Betty Eipper, Ph.D. in JHU’s Department of Neuroscience. Dr. Wand then joined the faculty of the Johns Hopkins University School of Medicine.

In 2000, NIAAA and the NIH honored Dr. Wand with a 10-year Merit Award to continue his research on the role of the HPA axis in alcoholism. He has also received numerous local and national “Best Doctor” awards. Dr. Wand is the author of more than 175 articles and chapters and is on the editorial board of several journals.

When

Thursday, March 19th at 1:30 p.m. EDT

Where

Masur Auditorium, NIH Building 10, Bethesda, Maryland

Background

NIAAA established the Jack Mendelson Honorary Lecture Series as a tribute to Dr. Jack Mendelson, who made remarkable scientific contributions to the field of clinical alcohol research. The purpose of this honorary lecture series is to highlight clinical/human research in the alcohol field by an outstanding investigator who has made significant and long-term contributions to our understanding of alcoholism susceptibility, alcohol’s effects on the brain and other organs, and the prevention and treatment of alcohol use disorders. NIAAA is pleased to present this series of scientific lectures to acknowledge the advances researchers are making in a wide range of alcohol-related areas of clinical research, and to honor the memory of an individual whose exciting and pioneering research with human alcoholics remains relevant today.

For additional information about the lecture see: http://www.niaaa.nih.gov/about-niaaa/our-work/research-portfolio/projects-initiatives/keller-and-mendelson-honorary-lecture

The Mendelson Honorary Lecture is free and open to the public. Sign language interpreters will be provided. For other reasonable accommodations or further information call Joanna Mayo, 301-443-3860, or visit www.niaaa.nih.gov. For TTY callers, please call the above number through the Federal Relay Service at 1-800-877-8339.

The National Institute on Alcohol Abuse and Alcoholism, part of the National Institutes of Health, is the primary U.S. agency for conducting and supporting research on the causes, consequences, prevention, and treatment of alcohol abuse, alcoholism, and alcohol problems. NIAAA also disseminates research findings to general, professional, and academic audiences. Additional alcohol research information and publications are available at http://www.niaaa.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

Johns Hopkins’ Dr. Alfredo Quinones-Hinojosa

Johns Hopkins’ Dr. Alfredo Quinones-Hinojosa writes:

In 2006, the ABC show “Hopkins” aired. Episodes 1 and 7 featured my patients. I would like to share these videos with you and encourage you to view them to witness what it is like inside the hospital. The emotions are real and many people who follow this page have experienced this first hand. One day we will find a cure for brain cancer.

Episode 1:

Episode 7:

See all:

 

Johns Hopkins Pituitary Patient Day 2013

Johns Hopkins Pituitary Patient Day

Join us on Saturday, September 28, 2013, for the 5th Annual Patient Education Day at the Johns Hopkins Pituitary Center.

When: Saturday, September 28, 2013
Time: 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

Location of the pituitary gland in the human brain

Location of the pituitary gland in the human brain (Photo credit: Wikipedia)

Patient Education Day Agenda:
9:30 – 10:00 AM REGISTRATION
10:00 – 10:25 AM What is the pituitary gland, where it is located, what it does, and what can go wrong Gary Wand, MD
10:30 – 10:50 AM How pituitary tumors can affect your vision Prem Subramanian, MD, PhD
Vivek Patel, MD, PhD
10:50 – 11:10 AM Cushing disease journey: a patient’s perspective Stacey Hardy
11:15 – 11:40 AM Surgery for Pituitary tumors: from very tiny to very large Alfredo Quinones-Hinojosa, MD
Gary Gallia, MD, PhD
Alessandro Olivi, MD
11:40 – 12:00 PM Radiation therapy: when, why, and how Lawrence Kleinberg, MD
Kristen Redmond, MD
12:05 – 12:25 PM The medications you may be taking (new and old ones): what you need to know Roberto Salvatori, MD
12:30 – 1:25 PM Lunch
1:30 – 3:00 PM PM Round table sessions:
1) Medical therapy (Wand/Salvatori)
2) Surgical therapy (Quinones/Gallia/Olivi)
3) Radiation therapy (Redmond/Kleinberg/Lim)
4) Vision issues (Subramanian/Patel)

*This schedule is subject to change

Please R.S.V.P. by September 13, 2013, vie email (preferred) to PituitaryDay@jhmi.edu  or to Alison Dimick at 410-955-3921.

Reservations will be taken on a first-come, first-serve basis.

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