adrenal after diagnosis

Overview

Your adrenal glands are two small organs that sit on top of your kidneys. They make hormones that help your body handle stress, control blood pressure, balance salt and water, and manage energy. “Adrenal after diagnosis” refers to the period after you have been told you have an adrenal gland problem. This may mean your glands make too little hormone, too much hormone, or that you have a harmless nodule. This article explains what to expect and how to manage your health.

Adrenal insufficiency is rare, but adrenal nodules (small growths on the glands) become more common with age. Most nodules are harmless and are found by accident on scans.

Adrenal disorders affect people of all ages, genders, and backgrounds. Adrenal insufficiency is more common in adults under 60, while adrenal tumors can appear at any age. Some types have a genetic link.

Symptoms

Common symptoms

• Ongoing tiredness that does not improve with rest
• Unintentional weight loss
• Low blood pressure, causing dizziness when standing
• Feeling sick or reduced appetite
• Skin changes, such as darker patches (with primary adrenal insufficiency)
• Muscle weakness or joint pain

Symptoms in children

• Slow growth or weight gain
• Tiredness and irritability
• Stomach aches or vomiting without a clear cause
• Puberty may be delayed if the condition is not treated

Symptoms in older adults

• Symptoms may be mistaken for ageing or other illnesses
• Increased falls due to low blood pressure
• Confusion or memory changes
• Persistent tiredness and weakness

Causes

Main causes

• Autoimmune damage: the immune system attacks the adrenal glands
• Infections, such as tuberculosis or certain viruses
• Prolonged use of steroid medicines, which can shrink the adrenal glands
• Tumors of the adrenal gland or pituitary gland
• Injury or surgery involving the adrenal glands
• Genetic conditions in rare cases

Risk factors

• Another autoimmune disease, such as type 1 diabetes or thyroid disease
• Long-term steroid treatment
• Cancer that spreads to the adrenal glands
• Tuberculosis
• A family history of adrenal disorders (for some types)

When to see a doctor

See a doctor urgently if:

• Call your healthcare team immediately if you are ill with vomiting and cannot take your usual medication
• Seek urgent care if you have signs of an adrenal crisis as listed under 'Emergency'

Book a routine appointment if:

• You should have regular follow-up appointments with your hormone specialist (endocrinologist) to adjust treatment and monitor your condition
• See your doctor for routine blood tests if recommended

Diagnosis

Your doctor will take a detailed history and do blood tests. In adrenal insufficiency, the main test is a morning cortisol level, followed by an ACTH stimulation test if needed. For adrenal tumors, you may have blood and urine hormone tests and an imaging scan of the adrenal glands.

Tests that may be done

• Blood test for cortisol and ACTH
• ACTH stimulation test
• Blood tests for aldosterone and renin
• Urine or saliva tests for cortisol
• CT or MRI scan of the adrenal glands

What to expect at your appointment

You may need to fast or stop some medicines before tests. Most adrenal tests are simple blood tests or scans. Ask your doctor how to prepare. Results may take days or weeks. A specialist will explain what they mean and agree a treatment plan with you.

Treatment

Treatment depends on the exact adrenal problem. If your glands make too little hormone, you will be given replacement hormones to take every day. If they make too much, you may need medicines to lower hormone levels or surgery to remove an adrenal mass that is causing problems.

Self-care at home

• Take your prescribed hormone replacement exactly as directed
• Learn 'sick day rules' from your specialist (doubling medication when unwell, if instructed)
• Wear or carry a medical alert bracelet or card stating your condition
• Avoid suddenly stopping steroid medicines
• Carry a steroid emergency pack (injection or suppository) if prescribed

Medical treatments

Hormone replacement therapy, such as corticosteroids and mineralocorticoids, replaces missing adrenal hormones. For overactive adrenal disorders, medications may be used to block hormone production. All treatment plans are individualised. Your specialist will explain your doses and how to adjust them. Do not start, stop, or change any medication without speaking to your healthcare provider.

When is surgery considered?

You may need surgery to remove an adrenal gland or a tumour if the gland is producing too much hormone or if there is a suspected cancer. Many procedures are laparoscopic (keyhole), which means smaller cuts and a faster recovery. Your surgeon will discuss risks and benefits.

Living with this condition

Living with an adrenal disorder means learning to manage daily replacement therapy, planning ahead for illnesses, and paying attention to energy levels. Many people lead full, active lives. You will work closely with your specialist to adjust treatment as needed.

Lifestyle tips

• Wear your medical alert bracelet every day
• Avoid becoming severely dehydrated
• Learn strategies to manage stress, as your body's stress response is affected
• Tell your dentist, doctors, and nurses about your condition before any procedure

Diet and exercise

A healthy, balanced diet is generally recommended. You may need extra salt if you have primary adrenal insufficiency, but only follow your doctor's advice. Regular gentle exercise can improve energy and mood. If you exercise heavily, you may need to adjust medication, so ask your healthcare team.

Mental health and emotional wellbeing

An adrenal diagnosis can feel overwhelming. Hormone imbalances may also affect mood and mental health. It is normal to feel anxious, frustrated, or low. Speak to your doctor if you are struggling — emotional support is part of your health care.

Prevention

Most adrenal disorders cannot be prevented. You can, however, reduce the risk of complications by taking your medicines as prescribed, following sick-day rules, and keeping up with follow-up appointments.

Vaccines

Keep your vaccinations up to date, including the flu and pneumonia vaccines, if your doctor recommends them. Preventing infections helps protect you from adrenal crisis.

Screening programmes

If you have a known genetic cause, family members may benefit from screening. Otherwise, there is no routine screening for adrenal disorders.

Complications

If left untreated

• Adrenal crisis — a life-threatening emergency with severe low blood pressure and electrolyte disturbances
• Poor growth in children
• Serious infections due to lowered immunity (if overactive hormone is untreated)
• Osteoporosis (thinning bones) from prolonged high cortisol levels

Long-term outlook

With the right treatment, most adrenal disorders are very manageable. People with adrenal insufficiency can expect a normal life span and good quality of life. Overactive adrenal conditions also respond well to treatment. Your outlook depends on the cause, but many people feel much better once treatment begins.

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