Caring for Someone with 

a Pituitary Condition

Supporting a loved one — and looking after yourself

Living with a pituitary condition can affect many aspects of everyday life. Some adults may need additional practical, emotional or medical support from a partner, family member, friend or another person close to them.

At Pituitary Ireland, we recognise that caring for someone with a pituitary condition can also have a significant impact on the person providing that support.

Whether you are a spouse, partner, parent, adult child, relative or friend, you are a carer too — and your wellbeing matters.

What is a carer?

A carer is someone who provides unpaid support to another person who needs help because of a health condition, disability, illness or other circumstances.

Caring does not necessarily mean providing physical care.

For someone living with a pituitary condition, your role might include:

• Providing emotional support and reassurance

• Helping with medication routines

• Accompanying someone to GP, hospital or endocrinology appointments

• Helping them understand or remember medical information

• Supporting them during periods of illness or fatigue

• Helping with household responsibilities

• Assisting with appointments, prescriptions or healthcare arrangements

• Recognising changes in their health

• Supporting them during an emergency

• Helping them manage the practical impact of their condition on everyday life

Some pituitary conditions can cause fatigue, changes in mood, reduced energy, difficulty concentrating or other symptoms that may not always be visible to other people.

As a result, caring can sometimes involve considerable emotional and practical responsibility, even when there are few obvious physical care needs.

Recognising yourself as a carer

Some people do not think of themselves as a "carer". They may simply feel that they are supporting their partner, parent, child or friend.

However, recognising that you have caring responsibilities can be important. It can help you explain your circumstances to healthcare professionals and may help you access information, services and supports available to carers in Ireland.

It is also important to remember that asking for support does not mean that you are failing the person you care for.

Understanding the pituitary condition

If you are supporting someone with a pituitary condition, learning about their diagnosis can help you understand what they are experiencing.

Pituitary conditions can affect hormones throughout the body and may include conditions such as:

• Hypopituitarism

• Pituitary adenomas and other pituitary tumours

• Adrenal insufficiency

• Growth hormone deficiency

• Diabetes insipidus / Arginine Vasopressin Deficiency (AVP-D)

• Cushing's disease

• Acromegaly

• Prolactinoma

• Sheehan's Syndrome

• Rathke's Cleft Cyst

• Other disorders affecting the pituitary gland

Every person is different. The symptoms and treatment requirements will depend on their individual diagnosis and which hormones are affected.

The more you understand about their condition, the better prepared you may be to provide appropriate support.

Medication and treatment

It can be helpful to understand the medicines and hormone replacement treatments the person you support takes.

With their permission, make sure you know:

• What medicines they take

• When they need to take them

• What each medication is for

• Whether any medication needs to be taken at a particular time

• Where their medications are kept

• What to do if a dose is missed

• Which medications are particularly important during illness

• Who to contact if there is a concern about their treatment

Never change or stop someone's medication unless advised to do so by their healthcare professional.

Emergencies and adrenal insufficiency

Some people with pituitary conditions have ACTH deficiency and secondary adrenal insufficiency, meaning their body cannot produce enough cortisol.

If the person you support takes steroid replacement, it is particularly important that you understand their Sick Day Rules and know what to do if they become seriously unwell.

With their permission, you should know:

• Where their emergency hydrocortisone injection kit is kept

• How to check that the medication is within its expiry date

• How the emergency injection is administered, if you have been trained to give it

• When emergency hydrocortisone may be required

• What their endocrinology team has advised you to do in an emergency

• Where their medical identification is kept

If the person has been prescribed an emergency hydrocortisone injection, ask their healthcare team to make sure you understand how and when it should be used.

In an emergency

If someone with adrenal insufficiency becomes seriously unwell, loses consciousness, has a seizure or you believe they may be experiencing an adrenal crisis, seek emergency medical assistance immediately.

In the Republic of Ireland, call 112 or 999 and ask for an ambulance when urgent emergency medical attention is required. 

Keep their medication information available for paramedics and emergency healthcare professionals where possible.

Working with the healthcare team

The person you support remains the main decision-maker regarding their healthcare, unless they have made other arrangements or lack capacity to make a particular decision.

With their agreement, your involvement can nevertheless be extremely valuable.

You may wish to:

• Attend GP, endocrinology or hospital appointments with them

• Help prepare questions before an appointment

• Take notes during consultations

• Help them remember information afterwards

• Ask healthcare professionals to explain anything that is unclear

• Help keep track of medications and treatment plans

• Help monitor symptoms or changes in their health

• Make sure important information is shared with the healthcare team

If you do not understand something, it is completely reasonable to ask for it to be explained again.

Before an appointment

It can be useful to make a short list of:

1. The most important symptoms or concerns

2. Changes since the last appointment

3. Questions about medication

4. Any difficulties managing the condition

5. Any concerns about emergencies or illness

6. Any support that you or the person you care for may need

A written list can help ensure important questions are not forgotten.

You are a carer — and your wellbeing matters too

Supporting someone with a long-term health condition can be rewarding, but it can also be difficult.

You may experience:

• Stress

• Anxiety

• Frustration

• Tiredness or exhaustion

• Poor sleep

• Feeling isolated

• Worry about the future

• Financial pressure

• Changes to work or family life

• Reduced time for yourself

• Feelings of guilt about asking for help

You may also find yourself putting the needs of the person you support ahead of your own.

This is understandable — but your health matters too.

Looking after yourself is not selfish. If you become exhausted or unwell, it can become much harder to support someone else.

Make time for your own healthcare

Tell your GP that you have caring responsibilities.

Your GP may be able to help you identify appropriate support and can discuss any concerns about your own physical or emotional health.

Consider making a separate appointment for yourself if you have health concerns rather than continually putting them off.

It may help to ask yourself:

• Am I getting enough sleep?

• Am I feeling overwhelmed or exhausted?

• Am I becoming isolated?

• Am I experiencing anxiety or low mood?

• Do I have enough time for myself?

• Am I experiencing physical problems because of my caring responsibilities?

• Do I need help with household tasks?

• Am I worried about finances?

• Do I need respite or a break from caring?

• Do I know what to do if the person I care for has an emergency?

• What would happen if I became ill or was unable to provide care?

If any of these questions concern you, please ask for help.

Support available to carers in Ireland

There are organisations across Ireland that provide information, advice and practical support to family carers.

Family Carers Ireland

Family Carers Ireland provides information, advice, education and support to family carers across the Republic of Ireland. Their services include local carer support and information about available supports.

You can find support in your area through their website. 

Family Carers Ireland — Carer Support

Citizens Information

Citizens Information provides information, advice and advocacy on a wide range of public services and entitlements in Ireland.

They can provide information about areas such as social welfare, healthcare, employment and other supports that may be relevant to carers.

Citizens Information — Find a Centre

HSE

The HSE provides information about healthcare services and supports available in Ireland.

HSE Live can help if you have a general question about HSE services or are unsure who to contact.

HSE — Contact HSE Live

The HSE also provides information about supports for carers and family members. 

Carer's GP Visit Card

If you receive Carer's Benefit or Carer's Allowance, at full or half rate, you may be eligible for a Carer's GP Visit Card, which allows you to visit your GP without paying the GP consultation fee. 

Eligibility and application requirements can change, so always check the latest information from the HSE.

HSE — Carer's GP Visit Card

Plan for emergencies

If you are the main person supporting someone with a pituitary condition, it is worth having an emergency plan.

Consider keeping a record of:

• Their diagnosis

• Current medications

• Hormone replacement treatment

• Their endocrinology team or hospital

• GP contact details

• Emergency medication

• Allergies

• Important medical information

• Emergency contact details

Ask the person you support and their healthcare team what you should do if they become seriously unwell.

If you provide regular care, it is also worth considering what would happen if you suddenly became ill or were unable to provide support.

Having a backup plan can provide reassurance for both of you.

You don't have to do this alone

Being a carer can sometimes feel lonely, particularly when other people do not understand the impact that a pituitary condition can have on everyday life.

You may feel tired, frustrated, worried or overwhelmed at times.

These feelings do not mean that you do not care.

Talking to someone you trust can help. This might be a family member, friend, GP, healthcare professional, another carer or a support organisation.

Connecting with other people who understand the challenges of living with or supporting someone with a pituitary condition can also make a real difference.

How Pituitary Ireland can help

At Pituitary Ireland, we recognise that pituitary conditions affect more than the person who receives the diagnosis.

Families, partners and carers can also be affected.

We aim to provide:

• Reliable information about pituitary conditions

• Resources for patients, families and carers

• Signposting to appropriate healthcare and support services

• Opportunities to connect with others who understand

• Awareness and education about pituitary conditions

• Information about relevant research and developments

• A supportive community for people affected by pituitary conditions in Ireland

We are here to listen, provide information and help you find appropriate sources of support.

You are not alone — and neither is the person you care for.

Looking after the person you care for starts

 with looking after yourself

You do not have to know all the answers.

You do not have to manage everything on your own.

And you do not have to wait until you are overwhelmed before asking for help.

Your wellbeing matters too.

If you are concerned about the health of the person you support, speak with their GP, endocrinology team or other appropriate healthcare professional.

For urgent medical emergencies in Ireland, call 112 or 999.