Year: 2025

⁉️ Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

MaryO Uncategorized , , , , , , ,

More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”

Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!

Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis

Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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Basics: Diagnostic Procedures in Suspected Adrenocortical Carcinoma

MaryO Basic Info , , ,

Patients with suspected adrenocortical carcinoma (ACC) may also undergo additional tests to identify excess sex steroids and steroid precursors, mineralocorticoids and glucocorticoids.

Table 2 provides a summary of the tests recommended by the European Society of Endocrinology in collaboration with the European Network for the Study of Adrenal Tumors in patients with suspected ACC.10

Table 2. Diagnostic work-up in patients with suspected or proven adrenocortical carcinoma. Reproduced from Fassnacht et al., 2018,10 with permission under a Creative Commons Attribution 4.0 International License.
ACTH: adrenocorticotropic hormone; DHEA-S: dehydroepiandrosterone sulphate; CT: computed tomography; FDG-PET: 18F-fluorodeoxyglucose positron emission tomography; MRI: magnetic resonance imaging.
  • Click image to enlarge

Basics: Pseudo-Cushing’s syndrome

MaryO Basic Info , , ,

Pseudo-Cushing’s syndrome is when symptoms are similar to those of Cushing’s syndrome, but further tests show that the syndrome is not present.

Common causes include consuming too much alcohol, obesity, persistently high blood glucose levels, pregnancy, and depression.

 

Basics: What Causes Abnormal Cortisol Levels?

MaryO Basic Info , , ,

 

Cortisol isn’t bad; you need it to help regulate your responses to life. Regulation involves a very complex interplay of feedback loops between the hypothalamus, pituitary gland, and adrenal glands, says Dr. Singh.

“In general, cortisol levels tend to peak in the late morning and gradually decline throughout the day,” he explains. “When a stressful event occurs, the increased cortisol will work alongside our ‘fight or flight’ mechanisms to either upregulate or downregulate bodily functions. [Affected systems include] the central nervous system, cardiovascular system, gastrointestinal system, or immune system.”

In addition to normal processes that trigger or suppress cortisol release, levels can also be affected by different medical conditions, Dr. Singh says. For example, if someone has abnormally high levels of cortisol, this is called Cushing’s syndrome, which is typically caused by a tumor affecting any of the glands that take part in the process of cortisol production.

When people suffer from abnormally low levels of cortisol, it’s called Addison’s disease. It generally occurs due to adrenal gland dysfunction, but could also be the result of abnormal functioning of any of the other glands in the cortisol production process.

Finally, if you use corticosteroid medications such as prednisone or dexamethasone, prolonged use will result in excessive cortisol production, Dr. Singh says.

“If the medication is not adequately tapered down when discontinued, the body’s ability to create cortisol can become permanently impaired,” he says.

From https://www.yahoo.com/lifestyle/manage-pesky-stress-hormone-cortisol-184900397.html

 

Research Study for Patients Diagnosed with Cushing’s Disease and Their Caregivers

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We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.

✅ Who: Patients and caregivers of loved ones

⏳ What: 30-minute Online Survey

💰 Compensation: $60.00

Sign up here: https://rarepatientvoice.com/CushingsHelp/

 

Save the Date: Dueling Endocrinologists Discussing Hypothyroidism Diagnosis and Treatment: Commonalities and Differences

MaryO Interviews, Meetings and Conferences , , ,

  • Dr. Friedman will be joined by Brittany Henderson, MD, ECNU for an exciting GoodHormoneHeath Webinar on Dueling Academic-Based Endocrinologists discussing state-of-the-art hypothyroidism diagnosis and treatment: Commonalities and Differences

    Each expert will discuss the following topics:

  • How is mild hypothyroidism diagnosed?
  • Why are full thyroid panels and not just TSH needed?
  • What is the role of rT3?
  • How to optimally use all types of thyroid hormone including NDT
  • Why both conventional and alternative providers have it wrong?
  • They will briefly discuss the proposed ban on desiccated thyroid by the FDA.

Sunday • September 14• 5 PM PDT/ 8 PM EDT
Via Zoom Click here to join the meeting or
https://us06web.zoom.us/j/4209687343?omn=87459672811
OR
16694449171,,4209687343#
Slides and copy of the paper and the press release will be available before the webinar and recording after the meeting at slides
OR
Join on Facebook Live – https://www.facebook.com/goodhormonehealth at 5 PMPDT/ 8 PM EDT

Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.

Webinar: “Navigating Adrenal Health”

MaryO Interviews, Meetings and Conferences , , ,

 

Join NADF for the first annual virtual conference for patients and caregivers, “Navigating Adrenal Health”. With talks on topics ranging from research updates to accessing patient resources to EMS standards and expectations, participants can prepare for a wealth of information for patients, caregivers, and clinicians alike.

​Register today – FREE for all!

CALENDAR OF EVENTS
THURSDAY, OCTOBER 2ND

NADF at 40 Years
Paul Margulies, M.D., FACP, FACE
NADF Medical Director

Adrenal Crisis and EMS: Standards and Expectations
Joshua Stilley, M.D.
Emergency Medicine
Chair of the Missouri State Advisory Council on EMS

Recreating Human Adrenal Gland In Dish: Toward Endocrine-Level Reconstruction
Kotaro Sasaki, M.D., Ph.D.
Associate Professor at The University of Pennsylvania
Member, Institute for Regenerative Medicine, University of Pennsylvania

Resources & Tips for Navigating Insurance, Financial, & Legal Issues
Joanna Fawzy Doran, Esq.
CEO, Triage Cancer®

Imaging adrenal adenomas with [68Ga]Ga-PentixaFor
Liza Lindenberg, M.D.
Molecular Imaging Branch
National Cancer Institute

My AI Registry and Emerging Trends in Treatment Strategies
Elizabeth A, Regan, M.D., Ph.D.
Physician-Researcher at National Jewish Health
Principal Investigator, My AI (Adrenal Insufficiency) Registry
 
FRIDAY, OCTOBER 3RD

Adrenal Insufficiency: An Overview
Smita B. Abraham, M.D.
Endocrinology, Diabetes and Metabolism
Montefiore Medical Center

Emergency Preparedness: Solu-Cortef Injections for Adrenal Crisis
AJ Connor BSN, RN, BME
Addison’s disease patient
NADF Pennsylvania Support Group Leader

Everything You Need to Know about Adrenal Insufficiency in Youth in 30 Minutes or Less
Mitchell E. Geffner, M.D.
Professor Emeritus of Pediatrics
Keck School of Medicine of USC
Children’s Hospital Los Angeles
Ron Burkle Chair in the Center for Endocrinology, Diabetes, & Metabolism

Cushing’s talk – details forthcoming

Introduction to Congenital Adrenal Hyperplasia: Daily and Emergency Treatment
Selma Feldman Witchel, M.D.
Professor Emerita University of Pittsburgh
UPMC Children’s Hospital of Pittsburgh

NADF Resources for patients and caregivers
Vanessa O’Rourke
Community Engagement Manager
NADF

💉 Helpful Doctors: New York

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

Robert Heller, M.D., has joined Albany Med’s Department of Neurosurgery and has been named assistant professor of neurosurgery at Albany Medical College. He specializes in the surgical treatment of pituitary tumors, meningiomas, acoustic neuromas and gliomas. He is also skilled in stereotactic radiosurgery, a precisely targeted form of radiation therapy to treat tumors.

As a cranial and skull base surgeon, Dr. Heller will work with a team comprised of neurosurgeons, radiation oncologists, and ear, nose and throat surgeons who make up Albany Med’s Pituitary and Minimally Invasive Cranial Base Surgery Program.

Dr. Heller completed a complex cranial and skull base neurosurgery fellowship at Tampa General Hospital and University of South Florida in Tampa. He completed his residency training at Tufts Medical Center in Boston, where he also received his medical degree. His research interests include clinical outcomes in minimally invasive approaches to skull base surgery, and he has authored or co-authored nearly two dozen journal articles and book chapters. His professional society memberships include the American Association of Neurological Surgeons and the North American Skull Base Society.

He resides in Delmar.

Dr. Heller is seeing patients at Albany Med’s Department of Neurosurgery at 43 New Scotland Ave. To schedule an appointment or for more information, call the Department of Neurosurgery at (518) 262-5088.

 

 

Media Inquiries:

Sue  Ford Rajchel

fords@amc.edu

(518) 262 – 3421

⁉️ What’s on *Your* Medical ID?

MaryO What do you think? , ,

You do have one, right???

I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.

There’s room for 5 lines on there – not enough for everything but enough to get me through an emergency…and I have had some.

 

 

There’s also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.

So – what do you have on yours?  Please share!

⁉️ Cushing’s Myths and Facts: “You should be all better by now!”

MaryO Uncategorized , , , ,

Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones: