English (Engels)

What is the Dutch Pituitary Foundation? 

We are a patient organisation for people with disorders of the pituitary gland. We provide people with independent information about pituitary disorders, facilitate peer support, and defend the interests of patients with a pituitary condition against external parties. 

Getting in touch with the Dutch Pituitary Foundation 

Do you need to talk to someone from our foundation? Please e-mail your question or telephone number to lotgenotencontact@hypofyse.nl. Our organisation includes peer contact persons who can speak English. 

What is the pituitary gland? 

The pituitary gland is an organ, about 1 cm in size, that is located in a cavity in the base of the skull just behind the nose bridge. It is often called the ‘master gland’ since it plays a central role in the production of various hormones in the body. The pituitary gland mainly produces hormones that regulate the functioning of other hormone glands.  

What hormones are produced by the pituitary gland? 

• TSH, or thyroid-stimulating hormones. This hormone regulates the production of thyroid hormones by the thyroid gland.
• ACTH, or adrenocorticotrophic hormones (adrenal gland-stimulating hormones). This hormone regulates the production of cortisol (a hormone produced in the adrenal cortex) by the adrenal glands. 
• Follicle-stimulating hormones (FSH) and luteinising hormones (LH). These hormones stimulate the reproductive organs to produce sex hormones (oestrogen and testosterone). They also play an important role in regulating the menstrual cycle. 
• Growth hormone. GH stimulates the liver to produce substances (such as IGF-1) that affect the growth of bones, muscles, and cartilage. 
• Prolactin. PRL stimulates the mammary glands to produce breast milk. 
• Anti-diuretic hormones. This hormone controls the amount of water that leaves the body via urination.  
• Oxytocin. Oxytocin affects the release of breast milk (lactation).  

What exactly goes wrong in case of a pituitary condition? 

Pituitary disorders can lead to either overproduction or underproduction of certain pituitary hormones. These conditions are usually caused by a tumour (adenoma) in the pituitary gland. Most pituitary tumours develop slowly (over the years) and they are almost always benign.  

Pituitary disorders are rare. There are between 10,000 and 15,000 people in the Netherlands with a pituitary condition. The average general practitioner only encounters one patient with a pituitary condition once every 25 years.  

What types of examinations are commonly used to establish a pituitary condition? 

• Blood test and pituitary hormone function test (stimulation and inhibition test)
  The hormone levels in the blood are checked to determine whether the pituitary gland produces too many or too few hormones. In some situations it is necessary to test the pituitary function with a special stimulation and inhibition test. 
• Visual field test
  Adenomata in de pituitary gland may cause health problems as they grow in size by exerting increasing pressure on the optic nerve(s) or the nerves that control eye movements. This may result in reduced vision. The ophthalmologist can use a visual field test to determine whether the pituitary tumour is pressing on the optic nerve(s).
• MRI scan
  The adenoma can also cause headaches, an accumulation of fluid in the brain, or leakage of brain fluid via the nose. An MRI scan of the pituitary area can provide a clear image of such problems. 

What are the most common pituitary conditions? 

• Acromegaly
  Acromegaly is caused by a hormone-producing tumour in the pituitary gland that produces too high a level of growth hormones. Adult sufferers from acromegaly will notice that their body starts to slowly grow – not in height, but at the body’s extremities (hands, ears, jaw). Organs may start growing as well.
• Congenital Hypopituitarism (CH)
  Some children are born without a pituitary gland, or with a pituitary gland that is underdeveloped as a result of a genetic defect. This is very rare. It usually becomes clear quite soon after birth that a child suffers from CH. CH leads to a lack of one or more pituitary hormones.
• Craniopharyngioma
  A craniopharyngioma is a very rare type of benign tumour in the pituitary gland that is already present at birth. A craniopharyngioma consists of solid tissue, bone, calcium parts and a cyst. On rare occasions, a craniopharyngioma may be either fully filled with fluid or completely solid. The condition is not hereditary; parents do not pass the disorder on to their children. Like all other pituitary tumours, a craniopharyngioma is almost always benign and does not spread through the body. 
• Cushing’s Disease
  Cushing’s Disease occurs when the adrenal gland produces too much cortisol. This happens when a tumour in the pituitary gland produces too much adrenocorticotropin (ACTH), a hormone that stimulates hormone production in the adrenal cortex. These tumours are usually benign. In addition, Cushing’s Disease can also be caused by other phenomena, such as an adrenal adenoma or prolonged use of prednisone.
• Diabetes Insipidus (DI)
  When someone suffers from Diabetes Insipidus, the kidneys are unable to retain fluid. This is caused by a deficiency of the antidiuretic hormone (ADH), also known as vasopressin. Vasopressin affects the kidneys and protects against too much urine being excreted. Typical of DI is that you urinate a lot (huge amounts of very watery urine), especially during the night. You are constantly thirsty. No matter how much you drink, the thirst remains.
• Non-functioning pituitary adenoma (NFA)
  A non-functioning pituitary adenoma is a tumour in the pituitary gland that does not produce hormones (hence: non-functioning). A non-functioning pituitary adenoma does nothing, except take up space and possibly grow in size. It is always benign and does not metastasise. The adenoma may put pressure on part of pituitary gland, which causes the pituitary gland to become less effective. In addition, the adenoma may start pressing on the optic nerves, leading to reduced vision. 
• (Pan)hypopituitarism
  Hypopituitarism is not a disorder in itself, but the result of another condition that has damaged the pituitary gland. Hypopituitarism means: A deficiency of one or more pituitary hormones. If the deficiency applies to all hormones, we call this condition ‘panhypopituitarism’.
• Prolactinoma
  A prolactinoma is a hormone-producing tumour in the pituitary gland that produces prolactin. As a result, the prolactin level in the blood goes up. Prolactin is also often called ‘lactotropin’, since one of its main functions is to stimulate breasts to start lactating following child delivery. Prolactinomata occur in both men and women but are much more common among women. On exceedingly rare occasions, children may suffer from a prolactinoma as well. 
• Sheehan’s Syndrome
  Sheehan’s Syndrome only occurs in women and can be the result of severe blood loss during or after child delivery. During delivery, the pituitary gland is very vulnerable. It becomes at least twice as large and extremely well-perfused. This is because there is a high demand for hormones and the pituitary gland is preparing for the lactation process. When the blood pressure is too low and insufficient oxygen reaches the pituitary gland via the blood stream, the anterior pituitary becomes damaged. Severe blood loss/shock during childbirth is the most common cause of Sheehan’s syndrome.  

Where do you go to be treated? 

Since pituitary disorders are so rare, it is important to have them treated in a Centre of Expertise that is specialised in pituitary conditions. In the Netherlands, such centres are part of the University Medical Centres. We have listed them here for your convenience. 

Are residual symptoms to be expected after treatment?

People with a pituitary condition are not only affected by a disruption of their endocrine system. Often, they are also suffering from residual symptoms, such as reduced energy levels, joint complaints, a relatively poor physical condition, and sleep problems. Various Dutch Centres of Expertise for pituitary disorders offer an educational program for patients and their partner/relatives to learn how they can better cope with the consequences of their condition. Ask your endocrinologist about this. 

What to do if you fall ill in The Netherlands

Consult this infographic: eng_Infographic_eerstelijnszorg_3

Would you like to support our organisation? 

The Dutch Pituitary Foundations is a volunteer organisation. For a mere fee of 30 Euro per year, you can become a member of our organisation and help support our causes. Of course, you can also make a one-time donation. 

Information Library

For more information in English check out our information library.