adrenal and family life

Overview

Your adrenal glands are small but vital organs that sit on top of your kidneys. They make hormones such as cortisol and aldosterone, which help your body manage stress, balance salt and water, keep blood pressure steady, and respond to emergencies. An adrenal condition means these glands produce too much or too little of these hormones, affecting many areas of daily life and family routines.

Most adrenal conditions are uncommon. They can affect people of all ages and backgrounds, and they are just as likely to be diagnosed in men as in women.

Adrenal conditions can start in infancy, childhood, or adulthood. Some types are more often diagnosed in people aged 30 to 50. When a family member is diagnosed, everyone at home is affected—from meal planning to holidays—which is why this guide focuses on the whole family.

Symptoms

Common symptoms

• Feeling very tired or weak, especially after daily tasks
• Dizziness when standing up quickly (low blood pressure)
• Salt cravings and dehydration
• Nausea, vomiting, or belly discomfort
• Unintentional weight loss or weight gain, depending on the condition
• Darkened skin, especially on scars and skin creases (with underactive glands)
• Mood changes, irritability, or brain fog

Symptoms in children

• Tiredness and low energy compared to peers
• Slow growth or poor weight gain
• Belly pain, nausea, or vomiting
• Low blood sugar episodes (shaky, sweaty, or dizzy)
• Salt cravings (for example, licking table salt)
• With conditions present from birth: unusual genital appearance at birth (ask your midwife or doctor about newborn screening)

Symptoms in older adults

• Weakness and confusion that may be mistaken for ageing or dementia
• Falls or fainting due to low blood pressure
• Loss of appetite and weight loss
• Dehydration that doesn't improve with drinking
• Worsening fatigue that limits daily activities

Causes

Main causes

• Autoimmune disease: the body's immune system attacks the adrenal glands (most common cause in the UK)
• Infections that damage the adrenal glands, such as tuberculosis (more common in some parts of the world)
• Tumours of the adrenal gland or pituitary gland, which can cause overproduction of hormones
• Disruption of steroid medication — suddenly stopping long-term steroids can cause adrenal crisis
• Genetic conditions, such as congenital adrenal hyperplasia

Risk factors

• Having another autoimmune condition (such as thyroid disease or type 1 diabetes)
• Long-term use of corticosteroid medicines
• A family history of adrenal or pituitary disorders
• Previous serious infection or surgery in the abdominal area
• Stressful life events, which can trigger symptoms for the first time

When to see a doctor

See a doctor urgently if:

• If you have symptoms of adrenal crisis described above, call emergency services immediately
• If you are taking steroid medicine and develop vomiting or diarrhoea that prevents you from taking your dose, seek urgent medical advice
• If you have suddenly become very weak, dizzy, or confused, get prompt medical help

Book a routine appointment if:

• If you have been feeling unusually tired, dizzy, or weak for more than a week
• If you notice changes in your skin colour, salt cravings, or unexplained weight change
• If you have a condition that may require you to take steroids, or if you've recently stopped long-term steroids

Diagnosis

Your doctor will start by discussing your medical history and doing a physical exam. Because adrenal conditions affect hormones, the diagnosis is usually made through blood tests that measure hormone levels. You may also be referred to a specialist in hormones and metabolism, called an endocrinologist.

Tests that may be done

• Blood tests to measure cortisol, sodium, and potassium
• ACTH stimulation test (measures how your adrenal glands respond to a synthetic hormone)
• Imaging tests like CT or MRI to look at the adrenal glands
• Urine collection over 24 hours to check hormone output

What to expect at your appointment

Diagnosis can take time because symptoms often resemble those of other conditions. You may need a series of tests over several visits. Ask your care team what each test is for, and don't be afraid to bring a family member to take notes. Finding the exact cause is the key to an effective and personalised plan.

Treatment

The goal of treatment is to bring hormone levels back to normal and prevent emergencies. For underactive adrenal glands, this means replacing the missing hormones on a fixed schedule every day. For overactive glands, treatment may involve reducing hormone production, blocking the action of excess hormones, or removing a tumour if one is found.

Self-care at home

• Wear a medical alert bracelet or necklace that describes your condition
• Carry an emergency card in your wallet explaining what to do if you become unwell
• Learn sick-day rules and keep a written plan from your endocrinologist
• Always have spare medication with you, and make sure family members know where it is kept

Medical treatments

The mainstay of treatment for adrenal insufficiency is hormone replacement therapy, taken as tablets or, in emergencies, as injections. For overactive adrenal glands, your doctor may prescribe medicines to control hormone production or to manage blood pressure. Never stop or change a hormone medicine on your own—your dose must be adjusted by a specialist, especially during illness or injury.

When is surgery considered?

Surgery is sometimes needed if a tumour in the adrenal gland is producing too much hormone, or if there is a suspicious mass. The type of operation depends on the tumour and your general health. Your surgeon and endocrinologist will explain the expected risks and benefits before you decide.

Living with this condition

Day-to-day life with an adrenal condition is about routine and preparedness. Take your medication at the same times each day, eat regular meals, and keep simple rules in place for sick days. Tell trusted family members and friends what your emergency symptoms look like and what they should do. Small preparations—like packing extra medicine when you travel—can make a big difference.

Lifestyle tips

• Build regular rest breaks into your day, especially during flare-ups
• Learn breathing exercises or mindfulness to calm your stress response
• Avoid drinking too much alcohol, as it can worsen fatigue and blood pressure
• Get enough sleep and try to stick to a consistent sleep schedule

Diet and exercise

You don't need a special diet unless your doctor advises one. Eat balanced meals at regular times to keep your energy steady. Some people with adrenal insufficiency need extra salt, especially in hot weather or after heavy exercise. Walking, swimming, and stretches are good options, but always ask your care team what level of activity is safe for you.

Mental health and emotional wellbeing

Living with an adrenal condition can feel overwhelming. It is normal to feel anxious, low, or angry at times. Talk to your care team about how you're feeling—they can offer support or refer you to a counsellor. And if you ever have thoughts of harming yourself, call your local mental health crisis line right away; these thoughts are a medical emergency.

Prevention

Most adrenal conditions cannot be prevented because they are caused by autoimmune processes or genetics. However, you can prevent serious complications by staying on top of treatment, learning sick-day rules, and seeking advice early when symptoms change.

Vaccines

Stay up to date with recommended vaccines, including the annual flu vaccine and any other vaccines your healthcare team advises. If you take steroids, your doctor can tell you whether there are any special precautions around vaccination.

Screening programmes

There is no national screening programme for most adrenal conditions. However, if you have a known genetic risk or close relatives affected, your doctor may suggest testing. For people on long-term steroid treatment, regular monitoring of adrenal function is important.

Complications

If left untreated

• Adrenal crisis: a sudden, life-threatening drop in blood pressure and salt levels
• Severe and persistent fatigue that affects work, school, and family life
• Low blood sugar, which can cause confusion or unconsciousness
• Weight loss and muscle wasting with underactive adrenal glands
• High blood pressure, diabetes, and bone thinning with overactive glands (if left untreated)

Long-term outlook

With the right care, most people with adrenal conditions live long, active, and fulfilling lives. It takes time to adjust, and there will be ups and downs, but families who learn together and plan together often feel confident and prepared. You and your healthcare team can work as partners to keep you as well as possible.

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