Question 1

What is Ectopic ACTH Syndrome?

Accepted Answer

Ectopic ACTH syndrome is a rare condition where tumors outside the pituitary gland produce excessive adrenocorticotropic hormone (ACTH). It is caused by non-pituitary tumors, commonly small cell lung cancer, carcinoid tumors, or pancreatic neuroendocrine tumors, that abnormally secrete ACTH. The Adrenocorticotropic Hormone (ACTH) blood test is the most important test for diagnosis because it directly measures elevated ACTH levels that stimulate excess cortisol production.

Question 2

What causes ectopic ACTH syndrome?

Accepted Answer

Ectopic ACTH syndrome is caused by tumors outside the pituitary gland that abnormally produce adrenocorticotropic hormone (ACTH). The most common culprits are small cell lung cancer, carcinoid tumors of the lungs or digestive tract, and pancreatic neuroendocrine tumors. These tumors produce ACTH independently of the body's normal regulatory mechanisms, leading to uncontrolled stimulation of the adrenal glands and excessive cortisol production, which causes symptoms similar to Cushing's syndrome.

Question 3

What is the best test for ectopic ACTH syndrome?

Accepted Answer

The Adrenocorticotropic Hormone (ACTH) blood test is the most important test for ectopic ACTH syndrome because it directly measures the hormone produced by non-pituitary tumors. In this condition, ACTH levels are significantly elevated, often much higher than in pituitary-dependent Cushing's syndrome. Your doctor will typically order this test along with cortisol measurements to confirm that high ACTH is driving excess cortisol production. Additional testing, including high-dose dexamethasone suppression tests and imaging studies, helps locate the tumor source and distinguish ectopic ACTH from other causes of elevated cortisol.

Question 4

When should I get tested for ectopic ACTH syndrome?

Accepted Answer

You should get tested if you develop rapid-onset symptoms of excess cortisol, including sudden weight gain in the face and trunk, severe muscle weakness, easy bruising, purple stretch marks, high blood pressure, or diabetes that appears suddenly. Testing is especially important if you have a known history of lung cancer, carcinoid tumors, or other neuroendocrine cancers and develop these symptoms. Anyone experiencing unexplained severe fatigue, mood changes, or unusual physical changes like a rounded face and fat accumulation between the shoulders should seek evaluation promptly, as early diagnosis can guide appropriate cancer treatment and hormone management.

Question 5

What are the symptoms of ectopic ACTH syndrome?

Accepted Answer

Symptoms of ectopic ACTH syndrome develop from excess cortisol and often appear rapidly over weeks to months. Common signs include weight gain concentrated in the face, neck, and abdomen, severe muscle weakness especially in the hips and shoulders, thin fragile skin that bruises easily, and wide purple stretch marks. You might also experience high blood pressure, high blood sugar or new-onset diabetes, excessive thirst, frequent infections, depression or anxiety, irregular periods in women, and decreased libido. The sudden onset and severity of symptoms often helps distinguish ectopic ACTH from slower-developing pituitary Cushing's disease.

Question 6

Who is at risk for ectopic ACTH syndrome?

Accepted Answer

People with certain types of cancer are at highest risk for ectopic ACTH syndrome, particularly those with small cell lung cancer, which accounts for about half of all cases. Carcinoid tumors of the lungs, thymus, pancreas, or digestive tract also commonly cause this condition. Individuals with neuroendocrine tumors, medullary thyroid cancer, or pheochromocytomas face increased risk. Smokers have higher risk due to the strong association with lung cancers. The condition typically affects adults between ages 40-60, though it can occur at any age. Men are slightly more likely to develop ectopic ACTH syndrome than women.

Question 7

What happens if ectopic ACTH syndrome is left untreated?

Accepted Answer

Untreated ectopic ACTH syndrome can lead to serious and potentially life-threatening complications. Chronic excess cortisol causes severe muscle weakness that can progress to immobility, uncontrolled diabetes with dangerous blood sugar levels, severe infections due to immune suppression, osteoporosis with spontaneous fractures, and cardiovascular problems including heart failure and stroke. The underlying tumor causing the syndrome can grow and spread, worsening overall prognosis. Many patients develop psychiatric symptoms including severe depression and psychosis. The mortality rate is high without treatment, making prompt diagnosis and intervention critical for survival and quality of life.

Question 8

Can ectopic ACTH syndrome be diagnosed with a blood test?

Accepted Answer

Yes, ectopic ACTH syndrome can be diagnosed with blood tests, though multiple tests are typically needed for confirmation. The ACTH blood test is essential for measuring hormone levels, which are markedly elevated in this condition. Doctors also measure cortisol levels to confirm excess production and may perform specialized tests like the high-dose dexamethasone suppression test, which helps distinguish ectopic sources from pituitary tumors. Blood tests for potassium levels often show low values due to cortisol's effects. Once blood work suggests ectopic ACTH, imaging studies like CT or MRI scans help locate the tumor source, and occasionally specialized sampling procedures are needed to pinpoint the exact location.

Question 9

How is ectopic ACTH syndrome treated?

Accepted Answer

Treatment for ectopic ACTH syndrome focuses on addressing both the tumor producing ACTH and managing excess cortisol levels. The primary approach is surgical removal of the tumor if possible, which can cure the condition. When surgery is not an option or the tumor cannot be located, medications like ketoconazole, metyrapone, or mitotane help block cortisol production and control symptoms. Chemotherapy or radiation may be used for malignant tumors. In severe cases, bilateral adrenalectomy (removing both adrenal glands) may be necessary to stop cortisol production, though this requires lifelong hormone replacement. Treatment plans are individualized based on tumor type, location, and overall health status.

Question 10

How can I prevent ectopic ACTH syndrome?

Accepted Answer

Preventing ectopic ACTH syndrome is challenging since it results from tumors that develop unpredictably, but you can reduce risk through healthy lifestyle choices. Avoiding smoking is the single most important preventive measure, as it significantly reduces risk of small cell lung cancer, the most common cause. Maintaining a healthy diet rich in fruits and vegetables may lower cancer risk overall. Regular medical check-ups help detect tumors early before they cause hormone problems. If you have a known neuroendocrine tumor or carcinoid, close monitoring with your oncologist can catch ACTH production early. Being aware of symptoms and seeking prompt evaluation for unexplained rapid weight gain or severe fatigue enables earlier diagnosis and treatment.

Question 11

What can I do at home for ectopic ACTH syndrome?

Accepted Answer

While ectopic ACTH syndrome requires medical treatment, several home strategies can help manage symptoms and support overall health. Follow a low-sodium, low-sugar diet to help control blood pressure and blood sugar levels. Engage in gentle exercises like walking or swimming to maintain muscle strength and bone density, though avoid overexertion if you experience severe weakness. Prioritize good sleep hygiene and stress reduction techniques like meditation or deep breathing to help with mood and anxiety. Protect your skin from injury since it becomes fragile with excess cortisol. Take prescribed medications exactly as directed and attend all follow-up appointments. Monitor your blood pressure and blood sugar at home if recommended by your doctor, and report any concerning changes promptly.

Question 12

How’s this work?

Accepted Answer

Getting your blood test with us is easy, private & backed by the power of science.Long story short:
            
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Question 13

How do I know which test to get?

Accepted Answer

In the test options, find the test you want.
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            Just text or call us at 754-799-7833, email us at support@privatemdlabs.com, and we'll gladly help you. We've got your back and reply quickly.

Question 14

When will my lab results be available?

Accepted Answer

Most test results will be available within 1–3 business days. Once they're ready, we'll send an email and text message to let you know.
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Question 15

Is it possible to make changes to my lab order if I made a mistake with the name, date of birth, or any other details?

Accepted Answer

Absolutely! We totally understand that errors can happen. No worries, we're here to help you.
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            There are no changes necessary if your address is wrong on the requisition though. We don’t mail anything out.
            Our lab requires an address to be listed to generate an order.

Question 16

Do you accept health insurance?

Accepted Answer

Only HSA & FSA is accepted.
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Question 17

Can I cancel my order?

Accepted Answer

Yes.
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Question 18

How can I find a lab location near me?

Accepted Answer

During the ordering process, you’ll be able to select a specific lab near you, with no strings attached!
            You can switch it up later easily and visit any of our authorized locations as long as it’s the same lab company you selected your test for (Quest Diagnostics or Labcorp).
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Ectopic ACTH Syndrome Blood Test

What is Ectopic ACTH Syndrome?

What causes ectopic ACTH syndrome?

What is the best test for ectopic ACTH syndrome?

When should I get tested for ectopic ACTH syndrome?

References

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