Understanding acromegaly symptoms, causes, and treatment options for patients and families in the UK
What Is Acromegaly? Understanding the Basics
Acromegaly is a rare but serious hormonal disorder that occurs when your body produces too much growth hormone (GH) after you’ve finished growing. This condition affects approximately 3-14 people per 100,000 globally, making it an uncommon but significant health concern that requires prompt medical attention.
Whilst acromegaly isn’t technically an autoimmune condition, many patients with autoimmune diseases may be at higher risk of developing other endocrine disorders, making awareness of conditions like acromegaly particularly important for this community.
When most people think of growth hormone, they picture children growing taller. However, acromegaly affects adults whose growth plates have already closed, meaning they won’t grow in height. Instead, the excess growth hormone causes bones, cartilage, body organs and other tissues to increase in size, leading to characteristic changes in appearance including larger hands, feet, ears, lips and nose and a more prominent jaw and forehead.
For those managing autoimmune conditions, understanding acromegaly is important as both conditions can cause fatigue, joint pain, and may require careful coordination of treatments with your healthcare team.
Acromegaly vs. Gigantism: Key Differences
It’s important to understand the distinction between acromegaly and gigantism:
- Acromegaly: Occurs in adults after growth plates have fused
- Gigantism: Occurs in children before growth plates close, leading to excessive height
- Both conditions result from excess growth hormone, but the timing determines whether someone grows taller (gigantism) or develops the characteristic features of acromegaly
Recognising Acromegaly Symptoms: Early Warning Signs
Physical Changes You Might Notice
Acromegaly symptoms develop very slowly over many years, which makes the condition challenging to diagnose. Many people only notice changes when rings no longer fit or shoe sizes increase. The gradual progression means that both patients and healthcare providers may initially overlook the symptoms.
Common Physical Symptoms Include:
- Enlarged hands and feet – Often the first noticeable sign
- Facial changes – Prominent jaw, enlarged nose, thicker lips
- Skin changes – Thick, coarse, oily skin with excessive sweating
- Voice changes – Deepening voice due to enlarged vocal cords
- Joint pain and stiffness – May worsen existing autoimmune-related joint symptoms
- Increased spacing between teeth
Internal Health Changes
Beyond the visible physical changes, acromegaly affects your internal health:
- Cardiovascular issues – High blood pressure, heart enlargement
- Metabolic problems – Type 2 diabetes, insulin resistance
- Sleep disorders – Sleep apnoea affects up to 70% of patients
- Vision problems – If the pituitary tumour presses on optic nerves
- Headaches – Due to tumour pressure
When to See Your GP
If your hands and feet swell and grow to a larger size, this can be an early sign of acromegaly. Contact your GP if you experience:
- Persistent joint pain (especially if you have existing autoimmune conditions)
- Changes in facial appearance
- Excessive sweating
- New onset of diabetes or high blood pressure
- Sleep apnoea symptoms
- Vision changes
Important for autoimmune patients: Some symptoms may overlap with your existing condition, so it’s crucial to discuss any new or worsening symptoms with your healthcare team.
What Causes Acromegaly? Understanding the Root
Primary Cause: Pituitary Adenomas
In more than 90% of cases, acromegaly is caused by a benign (non-cancerous) tumour in the pituitary gland called a pituitary adenoma. These tumours:
- Are almost always benign, not cancerous
- Grow slowly over many years
- Secrete excess growth hormone
- May also affect other pituitary hormones
Less Common Causes
In rare cases, a tumour elsewhere in the body, such as the lungs, adrenal glands, or pancreas, can lead to an overproduction of GH. These tumours may:
- Produce growth hormone directly
- Secrete growth hormone-releasing hormone (GHRH)
- Stimulate the pituitary to overproduce GH
Genetic Factors
Experts don’t know why some people get tumours in their pituitary that lead to acromegaly. Recent research has identified genetic factors that may contribute to the development of pituitary tumours, particularly in families with multiple endocrine neoplasia syndromes.
How Is Acromegaly Diagnosed? Medical Tests and Procedures
Initial Screening Tests on the NHS
IGF-1 Blood Test A blood test to check if your IGF-1 hormone levels are high for your age is typically the first diagnostic step. Whilst levels of GH in the blood fluctuate throughout the day, a predictable way to track GH is by measuring the level of IGF-1 in the blood.
Glucose Tolerance Test Your doctor gives you a sugary drink and they measure the sugar and GH levels in your blood over 2 hours. If your levels don’t drop, this is a sign you could have acromegaly.
Imaging Studies
MRI Brain Scan This can determine the location and size of the tumour. An MRI is crucial for:
- Locating the pituitary tumour
- Determining tumour size
- Planning treatment approach
- Monitoring treatment response
Additional Health Assessments
If you’ve been diagnosed with acromegaly, your provider may order additional tests to see if the condition has affected other parts of your body. These tests may include: An echocardiogram to check for heart issues. Sleep study tests to check for sleep apnoea. A colonoscopy to assess the health of your colon. X-rays or a DEXA scan to check bone health.
For patients with autoimmune conditions: Your medical team will carefully coordinate these tests with your existing treatment plan to ensure there are no conflicts with your current medications.
Acromegaly Treatment Options: Your Path to Better Health
Surgery: The Gold Standard Treatment
Surgery is usually the preferred treatment on the NHS; the smaller the tumour, the more likely surgery will be curative. Surgery often results in a rapid therapeutic response, immediately relieving pressure on surrounding brain structures and lowering growth hormone levels.
Transsphenoidal Surgery
- Performed through the nose
- Minimally invasive approach
- Available at specialist centres across the UK
- The goal of surgery is to remove all of a tumour that is causing excess growth hormone production
Success Rates The cure rate for surgical removal of a pituitary tumour that’s causing acromegaly is about 85% for small tumours and 40% to 50% for large tumours.
Medical Therapy: Long-term Management
When surgery isn’t curative or isn’t possible, medications can effectively manage acromegaly and are available through the NHS:
Somatostatin Analogues (SSAs)
The medicines most often used to treat acromegaly are called somatostatin analogues (SSAs). These drugs curb the release of GH and may also reduce the size of the pituitary tumour.
Common SSAs available in the UK:
- Octreotide (Sandostatin)
- Lanreotide (Somatuline)
- Pasireotide (newer option)
Growth Hormone Receptor Antagonists
Unlike other medicines, GH-receptor antagonists do not stop the body from making too much GH. Instead, they block GH from signalling the body to make more IGF-I.
Pegvisomant is the primary medication in this class and requires daily injections.
Dopamine Agonists
Cabergoline may be prescribed when IGF-1 levels remain mildly or moderately elevated after surgery.
Radiotherapy: When Other Options Aren’t Sufficient
Radiotherapy is available through the NHS when surgery and medications aren’t effective. This treatment uses high-energy rays to target tumour cells.
Types of Radiotherapy in the UK:
- Conventional radiotherapy
- Stereotactic radiosurgery (Gamma Knife) – available at specialist centres
- May take years to achieve full effect
Living with Acromegaly: Managing Your Condition
Treatment Goals and Expectations
In treating acromegaly, the goal is to restore growth hormone and IGF-I in the blood to normal levels. If treatment succeeds, the soft tissue overgrowth will improve over several months and the risk of decreased life expectancy will return to where it was before the condition was diagnosed.
Managing Complications
Cardiovascular Health
- Regular monitoring of blood pressure through your GP
- Heart function assessment
- Management of diabetes
Sleep Disorders Sleep apnoea is present in around 70% of cases but does not tend to resolve with successful treatment of growth hormone level. Treatment available on the NHS may include:
- CPAP therapy
- Weight management programmes
- Sleep study monitoring at specialist centres
Quality of Life Considerations
Living with acromegaly involves significant treatment burden, and patient preferences should be considered when choosing treatment options. A patient-centred approach should integrate conventional biochemical outcomes, tumour control, comorbidities, treatment complications, and patient-reported outcome measures.
For autoimmune patients: Coordinating care between your rheumatologist, endocrinologist, and GP is essential to ensure treatments don’t interfere with each other.
Prognosis and Life Expectancy
With Treatment
With treatment, life expectancy is not reduced. Effective management can:
- Normalise hormone levels
- Improve physical symptoms
- Reduce cardiovascular risks
- Enhance quality of life
Without Treatment
Failure to receive adequate medical treatment for this condition can reduce life expectancy by 10 years.
When to See a Specialist
Healthcare Team Approach in the UK
Managing acromegaly typically involves:
- Endocrinologist – Hormone specialist for ongoing care (available through NHS referral)
- Neurosurgeon – For surgical treatment at specialist centres
- Clinical oncologist – If radiotherapy is needed
- Ophthalmologist – For vision monitoring
- Cardiologist – For heart health management
Regular Monitoring
If you’ve been diagnosed with acromegaly, you’ll need regular follow-ups to ensure your treatment is working well. This includes:
- Hormone level testing
- MRI scans to monitor tumour
- Assessment of complications
- Quality of life evaluations
UK Support and Resources
NHS Services
- Your GP – First point of contact for concerns
- NHS endocrinology services – Specialist hormone clinics
- Pituitary centres – Specialist surgical centres across the UK
UK Patient Organisations and Charities
- The Pituitary Foundation – UK charity providing support, information and advocacy for pituitary patients
- Rare Disease UK – Umbrella organisation for rare disease charities
- Endocrine Connections – Educational resources and latest research
Regional Specialist Centres
- London: Kings College Hospital, St Bartholomew’s Hospital
- Manchester: Christie Hospital, Manchester Royal Infirmary
- Birmingham: Queen Elizabeth Hospital
- Scotland: Western General Hospital, Edinburgh
- Wales: University Hospital of Wales, Cardiff
Financial Support
- Personal Independence Payment (PIP) – For daily living difficulties
- Employment and Support Allowance – If unable to work
- Access to Work scheme – Workplace adaptations
- Blue Badge scheme – Parking concessions
Research and Future Treatments
Emerging Therapies
Medical research continues to develop new treatment options:
- Oral medications instead of injections
- Combination therapies
- Personalised treatment approaches
- Genetic therapies
UK Clinical Trials
The NIHR Clinical Research Network coordinates clinical trials across the UK for rare diseases including acromegaly. Speak to your endocrinologist about participation opportunities.
Key Takeaways: Understanding Acromegaly
Remember These Important Points:
- Early Recognition Matters: The sooner your acromegaly is diagnosed, the better. Don’t ignore gradual changes in your hands, feet, or facial features.
- Treatment is Effective: Modern treatments available on the NHS can successfully manage acromegaly and prevent complications.
- Surgery Often Cures: Surgery is the preferred treatment option for acromegaly and can successfully put the disease in remission.
- Long-term Management: Even after successful treatment, regular monitoring is essential.
- Quality of Life Focus: Treatment should address not just hormone levels but overall well-being.
- Coordination is Key: For those with autoimmune conditions, careful coordination between specialists is crucial.
Trusted Medical Resources and Further Reading
For additional information about acromegaly, consult these reliable sources:
UK Medical Resources
- NHS Acromegaly Information – Comprehensive NHS guidance on symptoms, diagnosis and treatment
- The Pituitary Foundation – UK charity providing patient support and medical information
- NICE Guidelines – Evidence-based treatment recommendations
- British Endocrine Society – Professional medical society resources
International Medical Authorities
- Cleveland Clinic Acromegaly Centre – Comprehensive acromegaly information and treatment options
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) – Evidence-based medical information
- Mayo Clinic – Patient education and treatment guidelines
- National Organisation for Rare Disorders (NORD) – Specialised rare disease information
Conclusion
Acromegaly is a complex but treatable condition that requires expert medical care and ongoing management. Whilst the gradual onset of symptoms can make diagnosis challenging, early recognition and appropriate treatment can lead to excellent outcomes and normal life expectancy.
For those managing autoimmune conditions, understanding acromegaly and maintaining open communication with your healthcare team is particularly important, as some symptoms may overlap and treatments may need careful coordination.
If you suspect you or a loved one might have acromegaly, don’t hesitate to discuss your concerns with your GP. With proper diagnosis and treatment available through the NHS, people with acromegaly can live full, healthy lives whilst effectively managing their condition.
This information is for educational purposes only and should not replace professional medical advice. Always consult with qualified healthcare providers for diagnosis and treatment decisions. If you’re experiencing symptoms, contact your GP or call NHS 111 for guidance.
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