Cushing’s

🦓 Day 2, Cushing’s Awareness Challenge

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The Seven Dwarves of Cushing's

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.


Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!


         

ℹ️ Understanding Cortisol: The Stress Hormone Explained

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The Double-Edged Sword of Cortisol

Cortisol often receives negative attention, typically branded as the “stress hormone.” This steroid hormone plays a crucial role in the body’s ability to manage stress. However, many people remain unaware of the signs of elevated cortisol levels and what they might signify.

Recognising Elevated Cortisol Levels

You may have encountered social media trends that equate certain physical features, like facial puffiness, with high cortisol, often referred to as “cortisol face” or “moon face.” These viral portrayals have sparked curiosity and concern, but they may not paint the complete picture. Experts emphasize understanding cortisol’s broader role in health.

According to Dr. Jeannette M. Bennett, an associate professor in psychological science at the University of North Carolina at Charlotte, cortisol is vital for regulating inflammation and supporting immune function. It helps us fend off illnesses by managing the body’s responses to toxins and pathogens. This hormone also has significant effects on metabolism, blood pressure, blood sugar regulation, and the sleep-wake cycle.

As Dr. Nia Fogelman, associate research scientist at the Yale Stress Center, points out, cortisol enables the body to respond effectively to immediate dangers, providing the energy needed for fight-or-flight responses. However, certain medical conditions can lead to abnormal cortisol levels, either too high or too low, such as Cushing’s syndrome or Addison’s disease.

Identifying Symptoms of High Cortisol

Elevated cortisol levels don’t manifest through a single, obvious symptom, making them tricky to pinpoint. Nonetheless, there are several signs to watch for, including:

Sleep Disturbances**: Difficulty falling asleep or frequent awakenings can be indicative of high cortisol levels, though the relationship remains unclear.

Physical Changes**: Symptoms such as weight gain around the face and abdomen, increased hair growth, fat accumulation between the shoulders, and the appearance of purplish stretch marks may occur.

Mood Swings**: Increased irritability or overreacting to minor annoyances can signal high cortisol levels.

Food Cravings**: A strong desire for sugary, salty, and fatty foods can be a coping mechanism for underlying stress.

Persistent Fatigue**: Increased fatigue, headaches, and muscle weakness may also hint at elevated cortisol levels, particularly in the arms and thighs.

Hidden Issues**: High blood pressure, elevated blood sugar, and bone fragility are silent symptoms that require medical diagnosis.

 Understanding the Root Causes of High Cortisol

Several factors can lead to heightened cortisol levels:

Chronic Stress**: Unlike temporary stress, chronic stress can keep cortisol levels elevated long after a stressor has passed. Chronic stress may result from traumatic events or ongoing pressures in one’s personal or professional life.

*Mental Health Issues**: Conditions such as chronic alcohol abuse, depression, and anxiety can similarly elevate cortisol levels.

Cushing’s Syndrome**: This rare condition results from prolonged high cortisol levels and can lead to serious complications, including diabetes and bone loss. It may arise from high doses of corticosteroid medications or specific tumors that induce excess hormone production.

When and How to Test Cortisol Levels

Cortisol testing is not routinely done during medical check-ups, and there currently aren’t any at-home tests available to assess cortisol levels. Most healthcare providers only recommend testing for cortisol if there are symptoms indicative of conditions like Cushing’s syndrome.

If you experience symptoms linked to high cortisol, your doctor may suggest conducting tests to investigate further. Keeping track of your stressors and observable symptoms can help guide this conversation. Noticing that your symptoms worsen with increased stressors might indicate you’re not dealing with chronically elevated cortisol.

Several methods exist for testing cortisol levels, and they often involve multiple assessments due to natural fluctuations in cortisol throughout the day. These methods include:

Blood Tests**: Useful for diagnosing adrenal insufficiency and Cushing’s syndrome, but the timing of tests is crucial.

ACTH Stimulation Test**: Measures how well the adrenal glands respond to ACTH, requiring blood samples before and after an injection.

Urine Tests**: A 24-hour urine collection can be used to screen for Cushing’s syndrome.

Saliva Tests**: These are often done at home and can help identify risk for Cushing’s syndrome.

What Constitutes Normal Cortisol Levels?

Cortisol levels are typically highest in the morning and decline throughout the day, reaching their lowest point around midnight. The interpretation of cortisol levels depends on the specific tests performed.

It is essential to discuss test results with your doctor, who can help determine if your levels fall within a healthy range or indicate potential health issues.

The Importance of Awareness

Cortisol is integral to our body’s response to stress and various essential functions. However, persistently high levels can lead to multiple health concerns, including fatigue, weight gain, and mood fluctuations. If you suspect your cortisol levels may be elevated, it is advisable to consult your physician for evaluation and possible testing.

From https://aseannow.com/topic/1347298-understanding-cortisol-the-stress-hormone-explained/

 

✍️ Day 20: 40 Days of Thankfulness

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I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

 

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

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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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📚 Cushing’s: A comprehensive guide to understanding a devastating condition

MaryO books ,

 

This book is perhaps something a little different than most would expect. Firstly, it’s a single-author book on Cushing’s syndrome. It is not, like most textbooks, a compendium of edited submissions from multiple authors where there are often divergent opinions from one chapter to the next. Instead, it’s a treatise reflecting my education and experience. It is not referenced but instead each chapter is followed by suggested readings. It represents my thoughts, understanding and a personal reflection on a career of evaluating a multitude of patients suspected of having the disorder and treating those confirmed to have hypercortisolism due to one cause or another. It reflects my perspectives of the art and science of the field.

In this book you’ll find my personal opinions about all matters from diagnostic testing to approaches to management. I share patient stories that are particularly informative and indicate how I learned from those patients and built on the foundation of my knowledge to take better care of subsequent patients. I relate scientific information, and results of studies, and comment on the utility and practicality of these results. While you are reading, you might learn a thing or two about statistics. I also relate some of the general essentials of the “art of medicine” that I have learned not only from professors I had encountered in my training and education, but also from my patients and colleagues as well as my nursing and administrative colleagues.

I trained in the era of what I like to think of as the modern-day Renaissance of “evidence-based medicine.” This approach dramatically changed the face of medicine, the doctor-patient relationship, and even the influence of third-party payors and government entities. Unfortunately, however, much of the art of medicine has been seemingly deemed less important that data mining and interpretation. I firmly believe that most physicians can acquire the skills and attitudes required to practice medicine with artful expression while incorporating evidenced-based recommendations. Much of this book illustrates an approach to using data and knowledge with experience to formulate action plans for the benefit of patients. I don’t think of the approaches I share as unconventional, but they may be unfamiliar to those who practice with an emphasis on evidenced-based medicine and who have not seen a lot of patients with the set of disorders leading to Cushing syndrome.

I think of the art and science of our craft as the foundation of what we now call “medical decision-making.” So many different factors need to be considered to make the right choices about diagnosis and treatment of diseases. Medical decision-making implies that one looks at all the evidence and facts about a patient, with an understanding of the applicable scientific evidence of medicine, and then utilize one’s experience to make several decisions, including whether a diagnosis is present or absent, the need for further diagnostic studies, and the best approach to treatment.

This approach should treat patients as individuals, according to need based on a multitude of assessments. I have often said, that if you show me 100 patients with Cushing’s disease, all with the same duration of the condition, identical biochemistry, and tumor sizes, you will show me 100 different illnesses. Everybody is different and I relate some examples in this book. Every patient deserves to be treated as an individual. This is where guidelines fail both physicians and patients. They try to fit square pegs into round holes where all patients are treated equally or according to a formulaic approach rather than according to individual needs. I suggest that physicians use their minds to devise an evaluation and management plan rather than defaulting to and following a guideline. If you’re unable to do so, then you probably should refer the patient to an expert.

On Amazon.

Adrenal Insufficiency

MaryO Basic Info , , , , , , , ,

 

💡 Did you know some people live without adrenal glands at all?
This can happen due to:
🔹 Surgery – for tumors like pheochromocytoma or Cushing’s
🔹 Metastatic cancer – when cancer spreads to both adrenal glands
🔹 Bleeding into the glands, infections like TB
🔹 Or genetic conditions (like CAH) where glands are non-functional
🧬 In all these cases, the result is the same:
➡️ No cortisol. No aldosterone. No hormone backup.
This is called absolute adrenal insufficiency.
📌 When you have no adrenal glands, your body relies 100% on replacement therapy. There’s zero margin for error – even a delayed dose or skipped salt can lead to crisis.
👉 That’s why we made today’s image – with everything you NEED to know if you (or someone you love) is living without adrenal glands.
💙 Save it. Share it. Advocate.

⁉️ Cushing’s Myths and Facts: “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

 

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

⁉️ Myths and Facts about Cushing’s: “Men1 and Men2 are the only genetic causes of Cushing’s”

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Myth: “Men1 and Men2 are the only genetic causes of Cushing’s”

myth-busted

FACT: This is a Myth. More current research has explored multiple etiologies of Cushing’s. It was once thought that heredity had no influence on the development of Cushing’s Syndrome/Disease and our knowledge was once limited in this sense. Researchers have done more work in terms of exploring genetic factors in the onset of this disease. *~Robin Ess (Cushing’s educator and advocate)

The following causes for Cushing’s have all been explored:

1. Men 1

2. Men2

3. FIPA

4. CAH/BAH

5. PRKAR1A(protein kinase,cAMP-dependent, regulatory, type I, ? gene)

http://www.medscape.org/viewarticle/564106_2

6.(PDE11A)

http://www.medscape.org/viewarticle/564106_4

http://www.medscape.org/viewarticle/564106_6

7.PRKACA

http://www.nature.com/nrendo/journal/v10/n8/pdf/nrendo.2014.89.pdf?WT.ec_id=NRENDO-201408

http://www.ncbi.nlm.nih.gov/pubmed/24700472

http://www.nature.com/ng/journal/v46/n6/full/ng.2956.html

https://www.genomeweb.com/sequencing/exome-sequencing-study-narrows-new-cushings-syndrome-gene-culprit

8.ARMC5

http://www.sciencedaily.com/releases/2014/10/141013090455.htm

http://www.nejm.org/doi/full/10.1056/NEJMoa1304603

ℹ️ Basics: Cushing’s Syndrome Overview

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

Cushing’s syndrome is a rare disorder that occurs when the body is exposed to too much cortisol. Cortisol is produced by the body and is also used in corticosteroid drugs. Cushing’s syndrome can occur either because cortisol is being overproduced by the body or from the use of drugs that contain cortisol (like  prednisone ).

Cortisol is the body’s main stress hormone. Cortisol is secreted by the adrenal glands in response to the secretion of adrenocorticotropic hormone (ACTH) by the pituitary. One form of Cushing’s syndrome may be caused by an oversecretion of ACTH by the pituitary leading to an excess of cortisol.

Cortisol has several functions, including the regulation of inflammation and controlling how the body uses carbohydrates, fats, and proteins. Corticosteroids such as prednisone, which are often used to treat inflammatory conditions, mimic the effects of cortisol.

Stay tuned for more basic info…

⁉ What Do *You* Think?

MaryO books, What do you think? , , , , , , ,

This question was originally posted on Facebook.

 

I responded with a quote from this book: Harvey Cushing: A Life in Surgery

“Dr. Harvey Cushing, who is the one responsible for discovering our disease, found some of his patients in circuses.”

Other responses so far:

OP:  Thank you for sharing this Mary Kelly O’Connor… as sad as this is… that our past cushing’s friends were on display as freaks in circuses, i am happy he was able to find them and help them and further his research.

Mary Kelly O’Connor: I remembered from reading this book many years ago.

For a long time, I was “mad” at circuses until I realized that they were the only people offering jobs to Cushies and others who should have had a better chance at life.

I know the circuses were exploiting the “freaks” but at least they could find a place in society.

I am so thankful to Dr. Cushing and the work he did…for all of us. I hate the disease but I am so glad that I’m alive after it was discovered and I didn’t have to run away to join a circus, too.

OP: Mary Kelly O’Connor i also am thankful to dr harvey cushing… even though i did read he was sorta an asshole arrogant jerk. Lol. I guess when you are the father of neuroscience you are entitled though…

Mary Kelly O’Connor:  My first “real” endo, the one who diagnosed me was that description. But he got me into NIH for surgery and I’m thankful to him, too. (But I never went back after I found another endo. LOL)