This website is intended for an international audience, excluding the United States, Canada and France
This website is intended for an international audience, excluding the United States, Canada and France

What healthcare professionals are you likely to see?

From general practitioners (GPs), nurses, dentists, and ophthalmologists who work in primary care, through to specialist doctors and nurses who treat people with endocrine disorders (endocrinologists and endocrine nurses) in secondary care, you are likely to see several healthcare professionals while living with acromegaly.

Once you have a confirmed diagnosis of acromegaly a multidisciplinary team will usually coordinate your care, with the endocrinologist being your main point of contact.

From suspicion to a diagnosis

Acromegaly can take a long time to develop and may not show any specific symptoms at the beginning, which may make it difficult for doctors to spot the signs of the condition at an early stage.

Initial symptoms or signs can be similar to other ailments or situations and so they may be initially attributed to other conditions such as depression and anxiety, arthritis or the start of the menopause in women. More distinct symptoms, such as enlargement of the hands and feet, usually occur later in the disease process.

This is why the diagnosis of acromegaly can often take several years and people may see several clinicians, including dentists and ophthalmologists, before an endocrinologist formally diagnoses them.

Do not be afraid to seek out a second medical opinion, however, if you suspect you or a loved one may have acromegaly as it is often difficult to separate acromegaly, which is a rarely diagnosed condition, from these other more common medical situations.

Who will make the diagnosis?

Once a diagnosis of acromegaly is suspected by your GP or other primary care healthcare professional you will normally be seen by an endocrinologist, usually at your nearest main hospital that has a specialist centre.

The endocrinologist is usually the one who confirms the diagnosis and will oversee your care long term so it is important to feel comfortable with him or her.

Ask your endocrinologist to tell you generally about his or her experience of treating acromegaly to put your mind at ease, and perhaps put you in touch with a local pituitary patient support group.

What tests will be used?

To begin the diagnostic process, the endocrinologist will take a medical history and conduct a physical examination. Then he or she may recommend the following steps:

Who will give me my treatment?

A number of expert healthcare professionals will be involved in your care and will work together to decide what treatment is best for you. This multidisciplinary approach is the recommended ‘gold standard’ for managing acromegaly and it ensures that you will receive the most appropriate care.

The main healthcare professional that you are likely to see is an endocrinologist who will generally oversee your care.

If surgery is required, you will see a surgeon who specialises in pituitary surgery, usually a neurosurgeon.

If radiotherapy is required then a radiotherapist will also be involved in your treatment.

In some countries there will also be a specialist (endocrine) nurse to help and support you in hospital and he or she will act as a bridge between your primary care and secondary care.

If medicines are required to treat your acromegaly an endocrinologist will usually be the one to recommend this treatment. As most medicines used to treat acromegaly are suitable for administration in the community, a GP or practice nurse may also be involved in this part of your treatment.

Acromunity fast facts

People can see three or more clinicians before a diagnosis of acromegaly is made. Endocrinologists are usually the first to formally confirm the condition.

How can you keep track of who’s who?

As you are likely to see several healthcare professionals throughout your journey with acromegaly you may find it helpful to keep a log of who you have seen and when you have had an appointment.

You might also find it helpful to note down your medical details and the results of any tests you may have had, your treatments, and any side effects or symptoms you may have had or be experiencing.

See the keeping track of your medical care section of this website where you can download the Acromunity Medical Details and Treatment Tracker to help you share important information about your care with all the members of your healthcare team.

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Ipsen
Please always consult a healthcare professional if you require healthcare advice or if you have any specific concerns regarding your acromegaly, its treatment or side effects. The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with acromegaly and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference SOM-ALL-000556