endocrinologist

🦓 Day 3: Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , , , , , , , , , ,

Sleep.  Naps.  Fatigue, Exhaustion.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.”

That seems to be changing back, at least on the weekends.  A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again.

In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.  Amazing that I traveled that whole distance – and missed the main event 🙁

This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

A few years ago I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees).  I come home from that exhausted – and in more pain than when I went.  I knew it was working and my knee got better for a while, but it’s such a time and energy sapper.  Neither of which I can really spare.

Maybe now that I’m nearly 19  years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again.  My surgeon says he “thought” it’s ok.  I was sort of afraid to ask my endo about it, though but he gave me the go-ahead.  I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly can’t afford to lose another kidney.

I always laugh when I see that commercial online for something called Serovital.  I saw it in Costco the other day and it mentions pituitary right on the package.  I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands.  But I won’t.  I’ll take a nap instead because I’m feeling so old and weary today, and yesterday.

Eventually, I did restart the GH, this time Omnitrope.

And tomorrow…

🦓 Day 1: Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , , , , , , , , , , , , , , , , ,

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

 

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

💉 Helpful Doctors: New York

MaryO Five Star, Helpful Doctors , , ,

 

Michele M (Michele), added her Helpful Doctor, Toni Murphy, to the Cushing’s MemberMap

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Toni Murphy
Your Doctor’s Address Street Address: Harlem Road
City: West Seneca
State / Province: NY
Postal / Zip Code: 14224
What are your Doctor’s Specialties? Endocrinologist
What are your Doctor’s Hospital Affiliations? Mercy Hospital

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki 

✍️ Day 22: 40 Days of Thankfulness

MaryO Uncategorized , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

 

Today is the 38th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 38 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

In 2017 I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I finally got both knees replaced.  The left in 2023, the right on February 3 of this year

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

In early May of this year I got a cortisone injection in my right thumb.  Hopefully, this won’t turn into anything.

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

💉 Helpful Doctors: Wisconsin

MaryO Helpful Doctors , , , , , , , , , ,

According to this article, the top rated Endocrinologists in Milwaukee, WI are:

  • Dr. Diana L. Maas, MD â€“ is an endocrinology, diabetes, and metabolism specialist
  • Dr. Elaine C. Drobny, MD â€“ is board certified in internal medicine and endocrinology
  • Dr. Brent Jones, MD â€“ is an Endocrinology Specialist has over 12 years of experience
  • Dr. Jenna Sarvaideo, DO â€“ specializes in Endocrinology, Diabetes & Metabolism
  • Dr. Betiel F. Voss, MD – is a specialist in endocrinology with over 9 years of experience

Dr. Diana L. Maas, MD

Endocrinologists in Milwaukee

Dr. Diana L. Maas, MD since early 1990, has worked in the field of endocrinology, diabetes, and metabolism. At the Medical College of Wisconsin and Affiliated Hospitals, she earned her medical training and finished her residency and fellowship. Dr. Maas is the Director of the Pituitary Clinic and an Associate Professor of Medicine. She collaborates with neurosurgeons to treat patients with pituitary tumors as a team.

Products/Services:

Endocrinologists

LOCATION:

Address: Froedtert Hospital, 9200 W Wisconsin Ave, Milwaukee, WI 53226
Phone: (414) 805-3666
Website: www.froedtert.com

REVIEWS:

“My absolute favorite MD. Dr. Maas gets to know her patients and is very thorough. Dr. Maas gave me my life back and I will always love her for that. If you want a great Endocrinologist, she’s your best bet.” – Veronica M.

Dr. Elaine C. Drobny, MD

Top Endocrinologists in Milwaukee

Dr. Elaine C. Drobny, MD is board certified in endocrinology, internal medicine, diabetes, and metabolism. Dr. Drobny graduated from the University of Arizona School of Medicine in 1977 and went on to Northwestern Memorial Hospital in Chicago for her internship and residency in internal medicine. At Northwestern University Hospitals, she completed an endocrinology fellowship. Professional Research Consultants, Inc., a leader in health care research, named Dr. Drobny a “Top Performer” in their 2019 awards, which are based on overall doctor ratings from patient surveys.

Products/Services:

Endocrinologists

LOCATION:

Address: 788 N Jefferson St # 201, Milwaukee, WI 53202
Phone: (414) 226-4010
Website: www.healthcare.ascension.org

REVIEWS:

“I appreciated the thorough review of all my concerns about my health as it relates to my Osteoporosis and necessary treatment. Also, Dr. Drobny, Nurse & staff are very courteous, pleasant & punctual, very little wait time.” – Elizabeth G.

Dr. Brent Jones, MDEndocrinologists Milwaukee

Dr. Brent Jones, MD is a Milwaukee, Wisconsin-based endocrinology, diabetes, and metabolism specialist with over 12 years of experience. Dr. Jones has greater experience than other physicians in his area with osteoporosis and screening, thyroid disorders, and diabetes and glucose monitoring. In 2009, he received his medical degree from Dartmouth College. Ascension Columbia St. Mary’s Hospital Ozaukee and Ascension Columbia Saint Mary’s Hospital Milwaukee are both affiliated with him. He is now taking new patients and has stated that telemedicine appointments are acceptable.

Products/Services:

Endocrinologists

LOCATION:

Address: 788 N Jefferson St 2ND FLOOR, Milwaukee, WI 53202
Phone: (414) 226-4010
Website: www.healthcare.ascension.org

REVIEWS:

“Having Dr. Jones as my endocrinologist has made my life with type 1 diabetes the most enjoyable, thankful and grateful since I was diagnosed when I was a young kid. His personality is one to behold. He treats his patients with the utmost respect, and his friendliness is like him being your best friend. I appreciate that very much. I have to thank him for being the one and only doctor who I would choose to help me with my diabetes.” – Patrick Z.

Dr. Jenna Sarvaideo, DOGood Endocrinologists in Milwaukee

Dr. Jenna Sarvaideo, DO practices Endocrinology, Diabetes, and Metabolism in Evanston, as well as four other locations. Northshore University Health System Evanston Hospital, Froedtert & The Medical College Of Wisconsin Community Memorial Hospital Campus, and Froedtert Lutheran Memorial Hospital are all linked with Dr. Sarvaideo.

Products/Services:

Endocrinologists

LOCATION:

Address: 9200 W Wisconsin Ave, Milwaukee, WI 53226
Phone: (414) 805-3666
Website: www.froedtert.com

REVIEWS:

“Dr. Sarvaideo is incredibly kind and caring and will do whatever she can to help. I’ve seen her for almost 3 years and I recommend her to anyone who is LGBTQ+ and looking to start their journey.” – Niki P.

Dr. Betiel F. Voss MDOne of the best Endocrinologists in Milwaukee

Dr. Betiel F. Voss MD is a specialist in endocrinology in Milwaukee, Wisconsin. In 2012, she received her bachelor’s degree with honors from the University of Texas Medical Branch at Galveston. Dr. Betiel F Voss is affiliated with many hospitals, including Aurora West Allis Medical Center, and Aurora St Lukes Medical Center and collaborates with many other doctors and specialists in the medical group Aurora Medical Group, Inc. Dr. Betiel F Voss has more than 9 years of diverse experience, especially in endocrinology.

Products/Services:

Endocrinologists

LOCATION:

Address: 2801 W Kinnickinnic River Pkwy Ste 260, Milwaukee, WI 53215
Phone: (414) 649-6780
Website: www.care.aurorahealthcare.org

REVIEWS:

“It’s rare that I go out of my way to review a medical practitioner, but Dr. Betiel Voss deserves special recognition. She’s a caring doctor with a wonderful bedside manner. She offers proactive patient education regarding findings as well. If you’re looking for an endocrinologist, she’s worth the wait.” – Stephanie S.

Helpful Doctor: Dr. Rudruidee Karnchanasorn

MaryO Helpful Doctors, Kansas , , , ,

Dr. Rudruidee Karnchanasorn is featured in the video and seems very knowledgeable about Cushing’s.

This interview offers a powerful first-hand account of what it’s really like to live with Cushing’s disease—from the daily struggles and the journey to diagnosis, to the experience of undergoing transsphenoidal pituitary surgery.

Dr. Rudruidee Karnchanasorn is certified by the American Board of Internal Medicine. She completed a fellowship at the City of Hope Medical Center. She earned her medical degree from Mahidol University Siriraj Hospital and completed her residency at Michigan State University.

Education

City of Hope National Medical Center

Fellowship, Endocrinology and Metabolism, 2011

Michigan State University

Residency, Internal Medicine, 2009

Michigan State University

Internship, Internal Medicine, 2007

Somdetphraput Thalertla Regional Hospital

Internship, 2005

Mahidol University School of Medicine Siriraj Hospital

Medical School, Doctor of Medicine, 2004

Board Certifications

Endocrinology Diabetes and Metabolism

American Board of Internal Medicine, 2011

Basics: Treatment – Transsphenoidal adenomectomy

MaryO Basic Info , , , ,

 

The most common procedure to remove pituitary tumors is transsphenoidal adenomectomy. It allows the removal of the tumor with minimal damage to the surrounding structures. The surgical team accesses the pituitary gland through the sphenoid sinus — a hollow space behind the nasal passages and below the pituitary gland.

If performed in specialized centers and by an experienced pituitary surgeon, this type of surgery is reported to result in an overall cure rate, or full remission, of Cushing’s disease for 80% to 90% of patients. A higher success rate is seen with smaller tumors.

However, reported remission rates vary considerably, mainly due to differences in the criteria used to define disease remission.

In some cases, a second transsphenoidal adenomectomy is required to fully remove tumor tissue; in others, the initial surgical procedure is paired with a second form of treatment, such as radiation therapy or certain medications.

Given the complexity of the procedure, the guidelines recommend patients undergo surgery in specialized Pituitary Tumor Centers of Excellence. Patients also are advised to have the surgery performed by an experienced pituitary neurosurgeon.

Follow-up for all patients should be conducted by a multidisciplinary team, including a pituitary endocrinologist.

Lifelong monitoring for disease recurrence is required.

Cortisol Summit 2025

MaryO Interviews, Meetings and Conferences , , , , ,

JOIN US for two days of education, support, and networking at this patient conference hosted by CSRF with co-hosts AIU and CNCC.  Enjoy optional social activities including a party Saturday evening to celebrate CSRF’s 30th anniversary in 2025.

Conference will be held at Barrow Neurological Institute in Phoenix, AZ, special thanks for the invitation from Medical Director and Endocrinologist Dr. Kevin Yuen!

Room blocks have been set up at Hampton Inn and Home2Suites/Tru by Hilton and will be sent to you via email immediately after registering.

Friday 11/7: 

-CNCC Track starts at 10:00am

-CSRF Track starts at 1:30pm

-Dinner, evening activity

Saturday 11/8:

-CSRF Track starts at 10:00am

-AIU Track starts at 10:00am

-CNCC Track: TBD

-Lunch

-CSRF 30th Anniversary Celebration for all 7:00-10:00pm

Register at https://www.zeffy.com/en-US/ticketing/november-7-8-2025-conference

🎬 Video: Pituitary tumors: Mayo Clinic Radio

MaryO Uncategorized , , , , , ,

 

This interview originally aired July 6, 2019.  Dr. William Young Jr., a Mayo Clinic endocrinologist, discussed pituitary gland tumors.

The pituitary gland is a hormone-producing gland at the base of the brain. Sometimes known as the “master gland,” the pituitary gland produces and regulates hormones that help the body function. Pituitary tumors are abnormal growths that develop in your pituitary gland.

Some pituitary tumors result in too many of the hormones that regulate important functions of your body. Some pituitary tumors can cause your pituitary gland to produce lower levels of hormones. Most pituitary tumors are noncancerous (benign) growths that remain in your pituitary gland or surrounding tissues, and don’t spread to other parts of your body. There are various options for treating pituitary tumors, including removing the tumor, controlling its growth and managing your hormone levels with medications. Your health care provider also may recommend a wait-and-see approach.

❓Can You Help? Very Few Symptoms

MaryO Can You Help?, What do you think? , , , , , , , , ,

A guest on the Cushing’s Help message boards asked:

I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.

I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.

I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!

Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?

Anyone else with only a few symptoms?

Thanks!

 

Can you help Ellie out?  Please respond here or on the Message boards.

Thanks!