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Commonly Asked Questions About Cushing Syndrome Finally Answered

Cushing syndrome, otherwise known as hypercortisolism, is a general description given to a group of disorders related to elevated amounts of cortisol in the blood. The symptoms can come about due to certain hormone treatments for asthma, rheumatoid arthritis, and other ailments. People who are overweight, or suffering from hypertension and/or diabetes, may also experience some symptoms related to Cushing syndrome so it is important to get tested and receive a proper diagnosis.

When a tumor on the pituitary or adrenal glands is the cause of this elevated cortisol level it is referred to as Cushing disease instead. It is a relatively rare disease, and it affects women more than men.

This disorder can be life-threatening if left untreated, but there are surgical procedures available that are usually successful in curing it. There is also a drug that can be taken in some cases, which will be discussed in more detail below.

1. Is Cushing Syndrome the Same as Cushing Disease?

The short answer to this is no. Cushing disease is not the same as Cushing syndrome – these two terms refer to different things and are not synonymous. The syndrome itself is much more prevalent in the general population when compared to the disease.

The difference between the disease and the syndrome comes down to one main point. While they both refer to the blood containing excess amounts of cortisol, a steroid hormone, in the case of the disease it is due to a pituitary tumor. This tumor gives off ACTH (adrenocorticotropic hormone) which is also made by the pituitary gland.

In the case of Cushing syndrome, it is a much more general diagnosis that still refers to high amounts of cortisol but does not pinpoint the reason as being from a pituitary tumor. This increased amount of cortisol could be caused by other issues such as cancer in other parts of the body, or a tumor located at the adrenal glands, among other rarer causes.


2. What are the Most Common Symptoms?

Now that we have differentiated between Cushing syndrome and the disease of the same name, it is important to point out that the symptoms a person may be experiencing will actually be the same for both.

The most common symptoms involve physical changes to the body – some of these changes will be easier to see than others, and some may be associated with another medical issue or lifestyle factor altogether. One of these visible symptoms is what can be referred to as the “moon face” effect, which causes the face to appear plump and rounder than usual.

Other parts of the body may appear to gain weight as well, such as the back of the neck, abdominal area, and elsewhere, but with arms and legs appearing skinny. There may also be stretch marks around the abdomen that take on a purplish color.

The skin may become easier to bruise, the cheeks may appear red, and there could also be more hair growth than usual around the face, chest, and thigh areas.


3. How can Cushing Syndrome be Officially Diagnosed?

Many of the symptoms associated with Cushing syndrome are often dismissed as a regular part of life. For example, an increase in blood pressure or packing on some extra pounds could be brushed off by some people as something related to more general health or lifestyle issues. This makes it harder to get it diagnosed early on.

The only way to get diagnosed is to go through with lab tests from your doctor. These tests will then be looked at to find out whether an increased amount of cortisol is being given off into the blood or find out whether the regular hormones responsible for controlling it are not doing their job.

In most cases, your doctor will have you provide either a saliva sample or urine. Another method is to give you a tablet containing a substance that closely mimics cortisol, called dexamethasone, which will then be used to find out whether your body is managing cortisol levels in the usual way.

4. What is an Endocrinologist and am I Being Sent There?

If you have been officially diagnosed with Cushing syndrome or disease already, or if there is some doubt and your health care provider wants to be sure, you may be referred to see an endocrinologist. This is a specialist physician who deals with all kinds of hormone disorders. Because Cushing syndrome is related to the steroid hormone cortisol, as explained earlier, you’re in good hands with an endocrinologist.

Another reason you may be referred to a specialist like this is simply the rarity of this syndrome and disease. Even the most knowledgeable and skilled physicians in your area may have seen very little of this medical condition, which is complicated in how it interacts with the body, so they will likely refer you to an endocrinologist and possibly a neurosurgeon will be involved as well. Other conditions that endocrinologists treat include diabetes, thyroid issues, and menopause-related ailments, which are also related to hormones.

5. Are There Any Medications Available for Treatment?

There is a relatively new drug named pasireotide and developed by Novartis, currently available in the United States and Europe, that has been approved for medical use to treat the pituitary tumors associated with Cushing disease. It is only given to people who have undergone surgery which has then been deemed unsuccessful, or those who would not be eligible for surgery for a variety of reasons. In any case, it is only given to adult patients.

There are quite a number of side effects that may be experienced while taking pasireotide. Some of these potential side effects include nausea, fatigue, elevated blood sugar levels, diarrhea, abdominal pain, headaches, and more. This drug can also slow down your heart rate, which is known as bradycardia, as well as other possibly harmful interactions with the heart. For this reason, it is important that you tell your doctor or specialist of any underlying health issues you have while discussing the potential use of this drug.

6. What About Surgery for Cushing Syndrome? Is it Effective?

In the case of Cushing disease, which is caused by a pituitary tumor as mentioned earlier, yes the surgery can be very effective. However, in the case of the syndrome which is caused by something other than a tumor, the treatment may not involve surgery at all.

The most effective type of surgery for the disease, and also the most common, involves a cut in the nose area which is then used as an entrance to reach the pituitary gland. A surgeon will either use a microscope or another optical instrument called an endoscope to find out where exactly the tumor is on the pituitary gland. Once the location is known, the tumor should be able to be removed.

As with most others, this type of surgery is not without risk. The pituitary tumor will be quite small which makes it harder to accurately locate, and therefore damage may be done to the gland during surgery. This could, in turn, affect hormone production, and in this case, it may be necessary to start replacement therapy.

7. What Happens After Surgery?

Immediately after the surgery for Cushing disease, you will most likely be experiencing nasal congestion as well as headaches which vary in severity and duration. For the most part, these effects should pass within one or two weeks from the time of surgery.

In the case of a successful surgery, cortisol levels will drop because the pituitary gland is no longer producing too much of it. This can actually cause your body to go into withdrawal, with symptoms such as severe fatigue which could continue for weeks or even months. However, it is possible to have cortisol replacement therapy during that time which will give the pituitary gland a chance to begin normal production again.

Further testing will be needed in the days after surgery which will most likely be carried out by your endocrinologist, and will again usually involve urine or saliva samples, and sometimes blood. These tests should be able to confirm the success or failure of the surgery within two or three days.

8. What Happens if Surgery Fails?

If the surgery for Cushing disease described earlier, known as a transsphenoidal surgery, is deemed to be a failure then another course of action will need to be taken. In some cases this will involve another surgery of the same type – this usually occurs when a tumor was not discovered in the first procedure.

Another possibility is that radiotherapy will be used, which is a radiation treatment to stop or attempt to minimize the chance of the tumor regrowing. In this case, the production of other hormones may also be affected and therefore need to be replaced. Cortisol levels in the blood will also need to be monitored and controlled medically during this time.

The last possibility, other than the drug mentioned earlier, is the complete removal of the adrenal glands which will cause cortisol to cease production while leaving the tumor intact. All of these possibilities will need to be discussed with the endocrinologist and surgeon when and if that time comes.

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