CION Cancer Clinics
MEN1 and the parathyroid, pancreas and pituitary | CION Cancer Clinics
MEN1 mainly affects three hormone glands: the parathyroids in the neck, the hormone cells of the pancreas and the pituitary under the brain. Each causes a different problem, from high calcium to low blood sugar to missed periods. This page explains what each gland problem feels like, which tests check for it and how it is usually managed, so you know what the letters on your plan mean. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
On this page
- Why does MEN1 affect these three glands?
- What does each gland problem feel like?
- Which tests look at each gland?
- What do the gland words on your report mean?
- How is each gland problem usually managed?
- What do people often get wrong about the three glands?
- What can this page not tell you?
- Common questions about MEN1 and the three glands
The short answer
Why does MEN1 affect these three glands?
MEN1 causes growths mainly in the parathyroid glands, the hormone cells of the pancreas and the pituitary. Each gland causes a different problem, because each makes a different hormone. The parathyroids are affected most often, the pancreas matters most for long-term health, and the pituitary usually makes too much of a hormone called prolactin.
Why these three and not the others
The MEN1 gene makes menin, a brake on cell growth. Every cell carries the faulty copy, but the brake seems to matter most in these particular hormone cells. Nobody fully knows why. What is known is the pattern, and the pattern is what doctors use to plan checks.
More than one gland, over many years
Most carriers do not develop all three problems at once. A parathyroid problem often comes first, sometimes in the teenage years or early adulthood. A pancreas or pituitary growth may follow years later, or not at all. Treating one gland does not protect the others, which is why checks continue for life.
A growth in a hormone gland is not the same as cancer. Most MEN1 growths are benign.Gland by gland
What does each gland problem feel like?
Many growths cause no symptoms at all and are found on a routine check. These are the signs when they do show.
Overactive parathyroids
The four small glands in the neck release too much parathyroid hormone, which pushes calcium in the blood too high. In MEN1 several glands are usually involved, not just one.
Common signs
- Kidney stones
- Thin bones that break easily
- Thirst, passing urine often and constipation
- Tiredness and low mood
Pancreas growths that release hormones
A growth releasing gastrin causes stomach ulcers that keep coming back, heartburn and loose stools. A growth releasing insulin drops blood sugar, causing sweating, shaking, confusion or fainting, often when a meal has been missed.
Silent pancreas growths
The most common pancreas growths in MEN1 release no hormone and cause no symptoms. They are found on scans. These silent growths matter most, because a few of them can grow and spread without warning.
Pituitary growths
A growth releasing prolactin can stop periods, cause milk from the breasts, lower sex drive or affect fertility in men and women. Less often a growth releases growth hormone. A large growth can cause headaches or press on the nerves to the eyes.
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Ask an oncologistHow they are checked
Which tests look at each gland?
Calcium and parathyroid hormone
A simple blood test measures calcium and parathyroid hormone together. High values for both point to an overactive parathyroid. This is usually the first test to turn abnormal.
Pancreas hormones in the blood
Blood tests for gastrin, and fasting blood sugar with insulin, look for pancreas growths that release hormones. Some acid-lowering tablets raise gastrin, so tell the team what you take.
Pituitary hormones
Prolactin, and sometimes a marker of growth hormone, are measured in the same blood sample. A raised level leads to a closer look.
Scans
An MRI of the pituitary, and an MRI or CT of the pancreas, show growths that blood tests miss. An endoscopic ultrasound, passed through the mouth, can find very small pancreas growths.
On your report
What do the gland words on your report mean?
- Hyperparathyroidism
- Overactive parathyroid glands. The blood carries too much calcium, which slowly affects the kidneys, bones and mood.
- Gastrinoma
- A growth that releases too much gastrin, the hormone that tells the stomach to make acid. In MEN1 these are often small and sit in the duodenum, the first part of the small bowel.
- Insulinoma
- A growth that releases too much insulin, so blood sugar drops too low. It is the pancreas growth most likely to cause sudden symptoms.
- Prolactinoma
- A pituitary growth that releases too much prolactin, the hormone that normally drives milk production after birth.
- Non-functioning tumour
- A growth that releases no hormone. It causes no symptoms and is only found on a scan.
- Endoscopic ultrasound
- A thin camera with an ultrasound probe, passed through the mouth under sedation, to see the pancreas up close.
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Side by side
How is each gland problem usually managed?
Commonly believed
What do people often get wrong about the three glands?
The pituitary sits under the brain but is not brain tissue. MEN1 pituitary growths are almost always benign, and many are controlled with tablets alone.
Most ulcers are. But ulcers that keep returning, or come with loose stools, can be a sign of a gastrin growth. In a family with MEN1, tell the doctor about any ulcer.
Every gland carries the same faulty gene. Treating the parathyroids does nothing to protect the pancreas or pituitary, and parathyroid growth can come back years after an operation.
The pancreas growths that matter most are usually the silent ones. They are found by scans, not by how you feel, which is why checks continue even when you are well.
Being straight with you
What can this page not tell you?
It cannot tell you which gland will be affected in you, or when. It cannot tell you whether a symptom you have today comes from MEN1 or from something ordinary. Those answers come from blood tests, scans and an endocrinologist who knows your history. What your specific variant means is a question for the counsellor who ordered the test.
It cannot choose your treatment
Whether a growth is watched, treated with tablets or removed depends on its size, what it releases and how fast it changes. Surgery is one option among several, and the decision is made by a team who can see your scans.
Who this does not apply to
Most people with one of these problems on its own do not have MEN1. A single overactive parathyroid in later life, or one prolactin growth with no family history, is usually a one-off. MEN1 is worth asking about when two of the three glands are involved, when problems start young, or when a relative has a similar history.
Questions we are asked
Common questions about MEN1 and the three glands
Which gland is usually affected first?
Usually the parathyroids. High calcium is often the first sign, sometimes picked up on a routine blood test or after a kidney stone. Pancreas and pituitary growths tend to appear later, although some can appear in childhood, which is why checks for them start early.
Why are all the parathyroids affected, not just one?
Every parathyroid cell carries the inherited fault, so every gland can grow. That is different from the common one-off parathyroid growth, where one gland is enlarged and the others are normal. It is also why a quick single-gland operation is rarely enough in MEN1.
Can the parathyroid problem come back after surgery?
Yes. Any parathyroid tissue left behind still carries the fault and can grow again over the years. Calcium is checked for life after an operation. A surgeon with regular experience of MEN1 parathyroid surgery matters a great deal.
What should I do if I feel shaky and confused when hungry?
Eat or drink something sugary straight away, and tell your doctor the same day. Repeated episodes, especially if you faint or someone finds you confused, need prompt tests for an insulin growth. Carry a sugary snack until you have been checked.
Are pancreas growths in MEN1 cancer?
Some can be. Most are small and slow, but a minority can spread to the liver over time. That is the main reason pancreas scans are part of lifelong checks. Many are watched rather than removed, and your team decides when an operation is worthwhile.
Can a pituitary growth affect fertility?
Yes. Too much prolactin can stop periods in women and lower sperm and sex drive in men. It is one of the more treatable MEN1 problems. Tablets that lower prolactin often bring fertility back, so tell your team if you are planning a family.
Do I need a separate specialist for each gland?
Ideally one endocrinologist leads your care and brings in others as needed: a surgeon, a gastroenterologist for endoscopic ultrasound, and an oncologist if a growth behaves like cancer. One lead doctor stops problems being treated separately without anyone seeing the whole picture.
Are these tests available in Hyderabad?
Yes. The blood tests, MRI and CT scans are widely available in Hyderabad, and endoscopic ultrasound is offered at larger centres. Families from districts can often do the blood tests locally. Call the CION helpline and we will help you plan the checks.
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI) — Multiple Endocrine Neoplasia Type 1
- MedlinePlus Genetics — Multiple endocrine neoplasia
- National Cancer Institute — Genetics of Endocrine and Neuroendocrine Neoplasias (PDQ)
- MedlinePlus Genetics — MEN1 gene
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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Trying to make sense of an MEN1 diagnosis?
Tell us which glands have been affected so far. We will help you find an endocrinologist and a genetic counsellor and plan the checks you need. One helpline serves every CION centre.