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Oct 2, 20234 min read

The Pituitary Foundation Awareness Month Focuses On Prolactinomas



What is a prolactinoma?

A prolactinoma is a tumour which grows on the pituitary gland which produces prolactin. There are two types based on the size of the growth. A microprolactinoma is 10 mm or less whilst a macroprolactinoma is a tumour in excess of 10 mm. These tumours are benign but can still cause significant and often distressing symptoms.


What is Prolactin?

Prolactin is a hormone produced by the pituitary gland that stimulates lactation (the production of breast milk). It is also involved in the development of mammary glands, the regulation of the menstrual cycle in females, and the production of sperm in males.


What are the causes of high prolactin levels?

Not everyone with elevated prolactin levels has a prolactinoma. Other causes can be pregnancy, stress, certain types of medication (often used for anti-sickness), mental health conditions or even an underactive thyroid.


If these are ruled out then prolactinoma will be considered. Simple blood tests and an MRI scan are used for diagnosis. Other tests may involve eye tests to check fields of vision and bone density scans to check for signs of osteoporosis.


What symptoms does it cause?

While it is normal for prolactin levels to increase during pregnancy and breastfeeding, abnormal increases—referred to as hyperprolactinemia—can cause sexual dysfunction, infertility, and lactation in non-nursing adults.


In females, there is often disruption to the menstrual cycle which can even be stopped (amenorrhoea) and there may be the development of excess breast milk (galactorrhoea).


In males, many experience larger tumours which lower testosterone levels and may result in a reduced interest in sex (low libido) and impotence.

What are the treatment options available?

The main treatment option for elevated prolactin levels is medication which lowers the level of production in the blood called Dopamine agonists. It can take some trial and error to find the right one to suit you. The three options are:

  • Bromocriptine — which is usually given twice or three times daily

  • Quinagolide — which is taken once daily, with the dose increased gradually over time to the required level.

  • Cabergoline — which is long-acting and requires one or two doses per week, although higher doses are occasionally required. Sometimes the dose can be reduced later during long-term treatment.

As with all medications, there can be some side effects. Some perhaps a little bit different, unexpected and unusual. Things such as addictive behaviour and impulsiveness can result from the use of these medications. Whilst more common side effects such as dizziness, nausea and headaches can occur. Usually, any side effects will be reduced once the body gets used to the medication.


What if surgery is necessary?

The use of surgery for prolactinomas has declined in recent years, due to the effectiveness of tablet treatment. If a prolactinoma doesn’t reduce in size with tablet treatment or if significant side effects are being felt then surgery may be required. This is especially important if your vision is affected and has not improved with medication.


The operation is called a trans-sphenoidal surgery which occurs through the air sinuses at the back of the nose and uses an operating microscope.


Establishing a good rapport and understanding with your clinical support is key to helping you manage your condition. The impact of a prolactinoma can have psychological implications as well as physical ones. It’s as important to address these as they can have a significant impact on daily living.


My personal experiences with increased prolactin levels - Living with a Prolactinoma

The symptoms involved and the process of diagnosis can be really scary to comprehend. The effects on everyday living can be significant and medication doesn’t agree with everyone.


At the same time surgery isn’t always seen as a viable option as I have the personal experience of knowing.


When my prolactin levels rose from a lowish 370 up to over 7000 in just three months I felt awful. The fatigue and headaches were debilitating. It took three attempts to get a medication that brought the levels down but that I could also tolerate.

However, things were still not stable and I was referred to a consultant surgeon. Under this team medication I was on for another condition was blamed for the cause of my high prolactin, despite evidence that a prolactinoma was present. At this point, I had stopped menstruating for three years and fertility was a serious concern. However, a multi-disciplinary meeting decided that I wasn’t the best candidate for surgery — I had no input into this — no control over what I wanted or needed.


After appointments continued to blame something I had then stopped taking and no treatment options were being offered I took the decision to remove myself from this hospital environment and to return to my local endocrinologist with whom I have remained ever since.


We have a good understanding of what is acceptable and what is not. When we resort to medication and what I just manage on a day-to-day basis. That doesn’t make it easy but it helps to know my limits and that my feelings count.


In some cases and for me more than one hormone level can be out of control making it a more complex situation to manage. In my case, that is cortisol and so an adrenal crisis is always a concern that needs to be managed. Additional care must be taken to ensure that one condition doesn’t impact the other.


Close monitoring, good communication and knowledge are all significant parts of everyday life. Triggers and warning signs are crucial to good management but it is possible.





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