🏞 Rebuilding the MemberMap

Slowly but surely, we’re rebuilding the Cushing’s Member Map. The location where we hosted it previously started charging huge amounts of money, so it’s being moved here.

Add your information (or your doctor’s) at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ or below:

 

 

❓Can You Help? Possible Cushing’s or Cortisol Issue

 

Hi wondered if anyone could help me out – been suffering with these symptoms lately and wondered if cortisol could be the issue

 

– Thinning legs

– Fat building in the trunk (abdomen and chest)

– Seemingly more fat under my chin

– Excessive fatigue even after a nights sleep

– Weak muscles – mainly back /arms and shoulders

– muscle wasting

– Feeling very low and anxious

 

Thanks in advance,


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

Thanks!

❓Can You Help? Looking for Naturopath

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

Hi, anyone here able to recommend a naturopath who has been successful in getting Cushings under control? Thanks!

Please comment here and I will get your answers to Heidi or on the boards directly.

 

Thanks!

 

📞 Webinar: Pituitary Surgery During the COVID-19 Pandemic

 

Presented by

Jamie J. Van Gompel, M.D., B.S., Professor in Neurosurgery and Otolaryngology specializing in endoscopic/open skull base focusing on Pituitary tumors as well as Epilepsy at the Mayo Clinic in Rochester, Minnesota, USAand

Garret W. Choby, M.D., a fellowship-trained rhinologist and endoscopic skull base surgeon practicing at the Mayo Clinic.

Objectives:

–          Understand the additional considerations that are key to performing endonasal surgery during the COVID pandemic
–          Identify the practice changes that are allowing pituitary surgery to proceed safely
–          Characterize the nasal cavity and nasopharynx as a reservoir for the coronavirus
–          Identify the risk of undergoing pituitary surgery during the Covid -19 pandemic
After registering you will receive a confirmation email containing information about joining the Webinar.Date: Monday, May 11, 2020

Time: 4:00 PM Pacific Daylight Time  – 5:15 PM Pacific Daylight Time

📞 Webinar: The Implications of COVID-19 on Patients with Endocrine Disorders

 

Presented by

Nelson M. Oyesiku, MD, PhD, FACS
Professor of Neurosurgery and Medicine
Vice-Chairman, Neurosurgery Residency Program Director
Emory University School of Medicine

Register Now!

After registering you will receive a confirmation email containing information about joining the Webinar.

 

Date: Sunday, May 10, 2020

Time: 11:00 AM Pacific Daylight Time to 12:15 PM Pacific Daylight Time/ 2:00 PM – 3:15 PM Eastern Daylight Time

📞 Dr. Theodore Friedman (The Wiz) will host a webinar on “How to improve quality of life for those with no adrenals (BLA and Addison’s)”

 

Dr. Friedman will discuss topics including:

  1. Who should get an adrenalectomy?
  2. How do you optimally replace adrenal hormones?
  3. What laboratory tests are needed to monitor replacement?
  4. When and how do you stress dose?
  5. What about subcut cortisol versus cortisol pumps?
  6. Patient Melissa will lead a Q and A

Sunday • May 17 • 6 PM PST
Click here on start your meeting or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=mb896b9ec88bc4e1163cf4194c55b248f

OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 802 841 537 Your phone/computer will be muted on entry.
Slides will be available on the day of the talk here
There will be plenty of time for questions using the chat button. Meeting Password: addison
For more information, email us at mail@goodhormonehealth.com

🦓 Day 30, Cushing’s Awareness Challenge 2020

Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…

To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year.  Possibly this will become a tradition.

I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much.   I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.

So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!

I am trying to get away from always reading, writing, breathing Cushing’s, and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors.

If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally.  Those are listed in the right sidebar of this blog, past the Categories and before the Tags.

Meanwhile…

Time-for-me

Choose wisely…

🦓 Day 29, Cushing’s Awareness Challenge 2020

People sometimes ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post.