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Cushing's Syndrome

What is Cushing's Syndrome?

Cushing’s Syndrome (CS) is a rare endocrine disorder caused by an excess of the hormone cortisol. Cortisol is a vital glucocorticoid, a class of steroid hormones that play an important role in the regulation of glucose metabolism, and also influence the body’s response to stress. The disorder can occur in children but most commonly occurs in adults between the ages of 25 and 40. The cause of the condition can either be the result of prolonged exposure to elevated levels of glucocorticoids produced within the body (endogenous) or introduced from outside the body (exogenous, e.g. cortisol-like drug therapy to treat other medical conditions or inflammatory diseases like lupus or asthma). Symptoms can include weight gain, purple striae on the skin, increased fat around the neck and round face, but slender arms and legs. The name of the condition came from Harvey Cushing who first described features of the disease in 1912.

 

Cushing’s Syndrome (CS) is a rare endocrine disorder caused by an excess of the hormone cortisol. Cortisol is a vital glucocorticoid, a class of steroid hormones that play an important role in the regulation of glucose metabolism, and also influence the body’s response to stress. The disorder can occur in children but most commonly occurs in adults between the ages of 25 and 40. The cause of the condition can either be the result of prolonged exposure to elevated levels of glucocorticoids produced within the body (endogenous) or introduced from outside the body (exogenous, e.g. cortisol-like drug therapy to treat other medical conditions or inflammatory diseases like lupus or asthma). Symptoms can include weight gain, purple striae on the skin, increased fat around the neck and round face, but slender arms and legs. The name of the condition came from Harvey Cushing who first described features of the disease in 1912.

Acknowledgement of Cushing's Syndrome has not been added yet.

 

The majority of CS cases are due to exogenous corticosteroid medication. It occurs in approximately 13 per million people. Endogenous CS occurs with an incidence of approximately 0.7–2.4 per million population per year. When the disorder is endogenous and caused by either an adrenal or pituitary tumor, females are five times more likely to be affected than males. However, males are affected three times more than females by  the ectopic production of adrenocorticotropin hormone (ACTH), which is a hormone that stimulates cortisol production, due to lung cancer later in life.

Synonyms for Cushing's Syndrome has not been added yet.

Exogenous CS: This is due to long-term administration of a cortisol-like drug therapy either used to treat another medical condition, such as arthritis or lupus, or other inflammatory diseases, such as leukemia or asthma. 

Endogenous CS: The pituitary gland in the brain produces a hormone called adrenocorticotropic hormone (ACTH) which enters and travels in the blood stream until it reaches the adrenal glands which are located on top of the kidneys. Secretion of ACTH is managed by three regions of the body, the hypothalamus, pituitary gland and adrenal glands. These regions form the hypothalamic-pituitary-adrenal (HPA) axis. When cortisol levels are low in the blood, the hypothalamus will release a hormone called the corticotrophin-releasing hormone that stimulates the pituitary gland to secrete ACTH into the bloodstream. High levels of ACTH are then detected by the adrenal gland receptors. These receptors respond by stimulating the secretion of cortisol, and this then increases cortisol levels in the blood. As these levels rise, this in turn reduces the release of the cortiocotrophin-releasing hormone and ACTH from the pituitary gland. Because the ACTH levels begin to fall, so do cortisol levels. Therefore, excessive cortisol production can occur in the context of abnormally elevated ACTH levels that stimulate healthy adrenal glands to produce more cortisol or in the context of defective adrenal glands that produce excessive cortisol despite low or normal ACTH levels. Approximately 70% of Cushing syndrome cases are the result of Cushing disease. When there is excess ACTH production from a benign pituitary tumor (adenoma), the adrenal glands produce excess amounts of cortisol. Approximately 10-15% of endogenous cases are due to non-pituitary tumors that secrete excessive ACTH. Benign or malignant tumors commonly found in the chest cavity or abdomen cause the excessive ACTH production. Other types of ACTH-producing tumors include medullary carcinomas of the thyroid or pancreatic islet cell tumors. Some patients (approx. 10-15%) have benign or malignant tumors of the adrenal glands resulting in excessive cortisol production. 

While the majority of cases are not inherited, some cases of CS are the result of an inherited tendency to develop tumors in one or more hormone-secreting glands, such as the adrenal glands. 

The condition can affect many different parts of the body and can cause a range of symptoms, which include:

  • A rounded face

  • Dorsal fat pad or so-called Buffalo hump - a mound of fat formed at the base of the neck

  • Weight gain especially in the abdomen, while arms and legs become slender

  • Increased body hair

  • Thinning skin

  • Acne

  • Easy bruising 

  • Leg swelling

  • Purple stretch marks on abdomen and legs

  • Constant rosy cheeks

  • Diabetes 

  • Hypertension

  • Mood changes including feeling hyperactive or sudden mood swings

  • Muscle weakness

  • Irregular menstruation

Name Description
Excess sweating Excess sweating
Severe fatigue Severe fatigue
Striae Striae are irregular areas of skin that look like bands, stripes, or lines.
Buffalo hump Buffalo hump
High blood pressure High blood pressure that is often hard to control even with medication
Insomnia Insomnia
Muscle weakness Muscle weakness
Loss of menstrual cycle and/or ovulation Loss of menstrual cycle and/or ovulation
Loss of libido Loss of libido
Loss of hair on head Loss of hair on head

In addition to assessing a patient’s medical history, a patient with CS is commonly diagnosed by a physical examination and certain laboratory tests. If a diagnosis is made, the next step to follow is to determine what is causing the condition. For example, it could be caused by an adrenal tumor (adrenal Cushing’s), a pituitary tumor (Cushing’s disease), or a tumor elsewhere in the body (ectopic ACTH-producing tumor).

Tests used to diagnose Cushing syndrome include:

  • Blood (plasma) test to measure ACTH levels and cortisol levels. 

  • Radiologic imaging may be used to identify ACTH-producing tumors

  • Magnetic resonance imaging (MRI) may be used to identify a tumor in the pituitary gland

  • 24-hour urine cortisol test can be used to measure overall cortisol levels in a patient’s urine for an entire day and to determine any abnormal levels.

  • Salivary cortisol test involves swabbing inside of the patient’s mouth before going to bed and measuring cortisol levels in the saliva.

If the above tests are performed and the patient appears to be making too much cortisol, a low dose dexamethasone suppression test may be used. This test involves the administration of a pill containing 1 mg of Dexamethasone (artificial steroid) at 11pm and then checking the blood cortisol level the following morning. If the level does not drop, then this can confirm elevated levels of blood cortisol and help to confirm a CS diagnosis.

Treatment depends on the cause and can include surgery, targeted radiation, chemotherapy, or cortisol-reducing medications. 

If the cause is the result of long-term glucocorticoid use to treat another disease, a physician will likely reduce the dosage to the lowest dose to help manage cortisol levels but to also keep treating the other disease. In some cases, non-glucocorticoid medication may be used instead if disease treatment doesn’t require glucocorticoids.

Ectopic ACTH-producing tumors are typically first treated through surgical removal of the ectopic tumor. If the tumor is cancerous and has already spread, treatment may extend to chemotherapy, radiation or other treatment options. 

When a patient has been diagnosed with Cushing’s disease, and the pituitary tumor is benign, treatment would likely involve removal of the tumor by a neurosurgeon, or in some cases directed radiation treatment. If surgery and medications are unsuccessful, a patient may need to have both adrenal glands removed. 

When a patient has CS due to an adrenal tumor, the treatment typically involves removal of either one of both adrenal glands. If a patient has just one hyperactive adrenal gland, then the other gland typically shuts down temporarily. Therefore, when the hyperactive adrenal gland is removed, extra steroids through IV and pills will be used temporarily to assist in kickstarting the remaining adrenal gland to function properly again.

If both adrenal glands need to be removed, medication will be required for life to replace the cortisol and other hormones produced by the adrenal glands.

The prognosis for patients diagnosed with CS varies due the range of treatment options depending on the cause of the disease and it being exogenous or endogenous. In cases where patients have persistent hypercortisolism, CS is associated with a high number of metabolic, cardiovascular and cognitive complications, which can affect both quality of life and a patient’s prognosis. 

Tips or Suggestions of Cushing's Syndrome has not been added yet.

Aulinas A., Valassi E., and Webb S. M. Prognosis of Patients treated for Cushing syndrome. Endocrinología y Nutrición (English Edition). 2014; 61: (1): 1-64. DOI: 10.1016/j.endoen.2014.01.004

Columbia Surgery, Columbia Adrenal Center. N.d. Cushing’s Syndrome. Available from: https://columbiasurgery.org/conditions-and-treatments/cushings-syndrome 

National Institute of Diabetes and Digestive Kidney Diseases. 2018. Cushing’s Syndrome. Available from: https://www.niddk.nih.gov/health-information/endocrine-diseases/cushings-syndrome 

National Organization for Rare Disorders. 2017. Cushing Syndrome. Available from: https://rarediseases.org/rare-diseases/cushing-syndrome/ 


You and Your Hormones. 2020. Adrenocorticotropic hormone. Available from: https://www.yourhormones.info/hormones/adrenocorticotropic-hormone/

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Cushing's Syndrome? Created by vijhoni62
Last updated 6 May 2019, 09:51 AM

Posted by vijhoni62
6 May 2019, 09:51 AM

Cushing's Syndrome?

 
I would like to hear from people who have had or currently have Cushing's Syndrome. I want to know what your symptoms were and what treatment you had. I have read about it but I know disorders do not always effect all people in the same ways.

Welcome to the Cushing's corner! Created by fatnsassy
Last updated 28 Dec 2008, 02:22 AM

Posted by staticnrg
28 Dec 2008, 02:22 AM

Hey, ladies, I just joined and updated some of the info that was there. I'm not sure if they don't like what I said about the diagnostic tests or if they are waiting on approval....hmmmmmm...

Posted by suitechic1979
4 Aug 2008, 12:45 AM

Hi Gracie and everyone else. Thanks for joining me so I wasn't a loner in this group. :) I thought it would be nice to have a group here when I saw it and thought that we can help others learn about this illness. If anyone wants to add anything, I think that would be really cool.. to give more information about this disease. Welcome everyone!

Posted by fatnsassy
3 Aug 2008, 11:22 PM

I see there are three of us here now. Thanks for letting us know about this site Suitechic! It's another way for us to get the word out, and share our knowledge! Hopefully we will meet even more people through this site, and be able to help others as well. Hugs, Gracie

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Posted by biotechguy
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Hi Everyone, My name is David Isserman and I am one of the co-creators of RareShare. I just wanted to quickly welcome you all to the Site. If you ever have any questions about RareShare or suggestions on improving the Site, please feel free to contact me at david@rareshare.org. David

Community External News Link
Title Date Link
Recordati Rare Diseases Inc. Announces Availability of ISTURISA® (osilodrostat) in the United States 06/14/2020
Metopirone Safely Normalized, or Significantly Lowered, Urine Cortisol Levels in Phase 3/4 Trial 09/19/2020
Community Resources
Title Description Date Link
Cushings Help Organization

Cushings Help Organization provides information, support, RSS feeds, news, and education for people with Cushing's or other endocrine problems, their friends and families. Cushing's syndrome is a hormonal disorder.

03/20/2017
Survive the Journey

A blog about the journey of a Cushing's Disease survivor. There you will find information on testing, diagnosis, and treatment. The latest research is outlined, also.

 

 

The author talks about the personal side of her journey at times, and she relates the medical aspects in language anyone can understand.

03/20/2017

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Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
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  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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2002 - Diagnosed with a bronchial neuroendocrine tumour (4cm). Surgically removed; no further treatment required.

2011 - Diagnosed with Ectopic Cushing's Syndrome.  No ACTH/steroid...

Master's degree in human Nutrition

 

Master's degree in education

 

PhD candidate in health science
I have a 18 year old son who has had two transphenoidal surgeries. One in October 2010 and one in October 2011.
im a mother of two my daughter is nine and son is going to be three.
am an advocate, researcher, and patient with Cushing's Disease, a rare, often misunderstood illness. In sharing my journey, I hope to make others more aware of the illness and more enabled to...
Hi There,

 

 

Now post op (adrenalectomy). Not feeling much better yet. Any advice? Anything I can do in the meantime? I'm tired and have a very large stomach that is horribly...
It started with Stevens Johnsons Syndrome- a disease I was afflicted w/ induced by a drug called Lamictal, a mood stabalizer given to me in the hospital to fight my depression due to losing my son....
iM DOING A TERM PAPER ON cUSHING DISEASE AND I NEED A STORY ON THE OUTCOME OF THE DISEASE
I'm a post-op Cushing's patient who is doing very well and wants to help spread the word about this supposedly rare disease.
I have Cushing's disease. For me, it is caused from a pituitary tumor. I will soon be having surgery to remove my tumor, and hopefully have a cure.

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Community Details Update

Created by RareshareTeam | Last updated 5 Jul 2021, 01:20 PM

Stretch marks

Created by RichardB6 | Last updated 12 Sep 2019, 02:00 PM

Cushing's Syndrome?

Created by vijhoni62 | Last updated 6 May 2019, 09:51 AM

Welcome to the Cushing's corner!

Created by fatnsassy | Last updated 28 Dec 2008, 02:22 AM

Welcome to RareShare

Created by biotechguy | Last updated 19 Dec 2008, 10:31 PM


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