Welcome

Acromegaly is a rare condition where the body produces too much growth hormone. This ‘over production’ is usually caused by a non-cancerous tumour in the pituitary gland, a small gland just below the brain.

If you haven’t been diagnosed with acromegaly but would like to know more about the signs and symptoms, please click on the button below.

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Too much growth hormone causes body tissues and bones to grow more rapidly than usual, resulting in lots of changes to the body, both inside and out, which vary from person to person.1

Whether acromegaly affects you directly, you have a friend or loved one with the rare condition, or you simply want to learn more about its signs and symptoms, you can find help here. Acromegaly can have an immense and sometimes overwhelming impact on the lives of those it touches, but, wherever you are on your journey with acromegaly, getting the right information and support can help a lot.

In collaboration with an international panel of people with acromegaly, acromegaly support groups, the World Alliance of Pituitary Organizations (WAPO) and health psychologists, we’ve created a short series of thoroughly researched and reviewed tips and advice to help you understand how acromegaly affects people.

We hope you’ll find something here to help you understand how to live well with acromegaly, whether you’re concerned about your own symptoms, those of a friend, whether you are newly diagnosed or you’ve been living with the condition a while.

Reference

What are the
symptoms of
acromegaly?

Acromegaly can affect people in lots of different ways; each person’s body will have a response as unique as they are.

If you are already working with a healthcare team, they will monitor you via regular check-ups, and help you manage any issues if and when required, although it’s sensible to be alert to some rarer but potentially more serious issues.

If you haven’t been diagnosed with acromegaly, but are concerned that you, or someone you know, may have it, these are some of the symptoms to discuss with your healthcare professional.

Common acromegaly symptoms

Headaches

These can vary in intensity and duration, and may be much more severe than regular headaches.1

Body changes

Acromegaly can cause your body to change shape, particularly around the hands, feet, your nose, cheekbones, forehead and lips. Skin may become sweatier (especially at night), oily and thickened, and may frequently grow skin tags.2–5

Joint/muscle pain

Bones and joints may grow and change composition in a way that makes them more vulnerable to pain or fracture. If this happens, it often affects the jaw, fingers, spine, ribcage, legs and/or arms.2–5

Hormonal issues

People living with acromegaly may feel unaccountably tired, sensitive to cold, or experience weight gain. A decreased sex drive is not uncommon and women may have irregular or no periods.2–8

Sleep disturbance

Snoring and sleep apnoea (a condition in which your breathing stops momentarily during sleep) can wake you up multiple times an hour during the night, even if you do not notice waking up.2–5,9,10

Cardiac issues

Structural changes in the heart and the way it pumps blood round your body can result in high blood pressure and/or an irregular heartbeat.2–5,11–14

Gut polyps

Small growths in the large intestine lining may develop (called bowel or colonic polyps) but for most people these are harmless and not something to be concerned about.2–5,15,16

Possible health problems to
watch out for

Visual impairment

The pituitary adenoma can sometimes press on the optic nerve, affecting its ability to send signals from the eyes to the brain. This may result in a blurring of mid-peripheral vision, followed eventually by the loss of outer peripheral vision. Some people do not notice any changes in their sight and a problem is only identified with testing.2,17

High blood glucose

Acromegaly can lead to an impaired ability to effectively process the glucose in the food and drinks we consume, usually because the body has developed a resistance to the hormone insulin, which can lead to diabetes. Consistently raised blood glucose level can lead to other health conditions, such as high blood pressure and heart problems.2–5,18–20

Heart failure

This is a very rare complication of acromegaly; only 3 in 100 people will experience it. However, sudden shortness of breath during light exercise and/or chest pain should be treated as a potential emergency.2–5,11–14

All this is a lot to keep track of, so keeping a health diary can be a great way to help you or your loved one feel more on top of things.
Symptom tracker

Download and print out our symptom tracker to take with you to your healthcare appointments. The first page is pre-filled to show you how to use it. The second page has been left blank so you can write down your own symptoms. Once you’ve downloaded it, you can print as many copies as you need.

Download
If you haven’t been diagnosed with acromegaly but are concerned that you have some of these symptoms, please speak to your healthcare professional for advice on next steps.

Supporting a friend?21,22

The emotional strain caused by all these symptoms and other health problems can feel overwhelming for people diagnosed with acromegaly – your understanding and support will be invaluable.

Here are some things to consider discussing or doing that might help:
  • Be there to acknowledge their thoughts and feelings – listening without judgement or trying to give advice
  • Consider offering to attend appointments
  • Try not to pressurise – respect their responsibility and autonomy
  • Try to see the positives in their diagnosis and express gratitude for them
  • Look after yourself – making sure you make time for you will help you be the best support you can be
Reference

References

Understanding your
treatment

Managing acromegaly can be time-consuming and may require several different treatment approaches, depending on individual circumstance.1,2 But it doesn’t have to take over your life.2,3

Finding out as much as possible about each step in the treatment journey can help. In many cases, the treatments available for acromegaly can effectively manage the condition, helping people live a relatively normal life.2,4

Treatment goals

Firstly, it’s important to consider the goals of treatment – knowing what you’re aiming for is key. Clear goals help people living with acromegaly and healthcare teams to manage progress and to work out what’s best when different treatment choices are available.

There are five core treatment goals to consider:
  • Managing the pituitary adenoma2,5–11
  • Maintaining normal pituitary function and hormone levels2,8,9,12–15
  • Normalising growth hormone/IGF-I levels6
  • Managing and avoiding related health conditions5,6
  • Minimising acromegaly symptoms and making life as fulfilling as it can be6

What does a typical treatment journey look like?

Here’s a rough overview of each of the main types of acromegaly treatment. Please bear in mind that the treatments and order in which they’re recommended will be individually tailored so may vary from those shown here.2,5,6

  • In general, people with acromegaly will move from one step to the next if treatment goals are still not met or side effects aren’t acceptable.

  • You might also be recommended a second surgery and/or radiotherapy alongside medical treatment, or you might be recommended to start medical therapy before or instead of surgery.6,14

Keeping track

Keeping a treatment diary is a helpful way to manage your progress, keep track of any side-effects, and note any questions to ask your healthcare team.

How long will acromegaly last?1,2,4

Although a high proportion of people with acromegaly can achieve stable control of the pituitary adenoma with treatment, the condition is considered lifelong. This is because, even with successful treatment, the pituitary adenoma can occasionally grow back – healthcare teams recommend periodic check-ups throughout life.

For people living with acromegaly, coming to terms with the long-term nature of the condition, its treatment and its impact on your life can be tough. Please speak with your healthcare team if you are concerned in any way about how you will cope. They may be able to refer you to a health or clinical psychologist, who can work with you to help talk through and manage your concerns.

Reference

References

Talking with your
healthcare team: Tips for
people with acromegaly

If you have been living with acromegaly for some time, you might feel quite used to speaking with healthcare professionals. However, if you are newly (or yet to be) diagnosed, liaising with a healthcare team might be a new experience. No matter how much experience you have, some appointments may be complicated or confusing. The key to a great relationship with the people helping with your care is to be prepared and ask lots of questions.1–3

Here are some suggestions of things you might like to consider to help you get as much as possible out of the healthcare visits you have coming up:

Preparing for appointments

  • Keep track of your appointments and symptoms4
  • Write a list of questions – this will help free your mind during the appointment itself3
  • Make your own notes – don’t worry about asking for more time to do so1

During the appointment

  • Consider taking a friend or making a recording5
  • Be honest about your symptoms – try not to worry about wasting time or feeling embarrassed4,5
  • Think of using written-down questions – this will help if there’s anything you find it difficult to say out loud
  • Use words and terms you’re comfortable with – this can help your healthcare team know how best to communicate with you5
  • Ask for explanations – don’t expect to understand everything; you could ask for a diagram or different way of explaining something5
  • Find out how you can ask questions afterwards5

Example questions to ask
– if you’ve been recently
diagnosed3,6–9

  • Is there any written information you can give me, or websites you can recommend?
  • Please can you explain what my treatment options are?
  • If it was a member of your family with acromegaly, what would you recommend they do in my situation?
  • Can you explain to me the possible long-term implications of having acromegaly (for example, might it impact my fertility or mobility, and can it cause further medical conditions)?
  • What do MRI scans involve and how long do they take?
  • How is pituitary surgery performed – please can you show me on a model / draw me a diagram?
  • How soon after surgery can I swim, fly abroad, or do my usual sports and activities?
  • What are the possible short- and longer-term complications of the treatment you’ve recommended, and how can they be managed?

Try not to put too much pressure on yourself to ask all the questions you might have in one go – remember, you can always check how you might ask further questions after your appointment.

Example questions to ask –
even if you’ve been living with
acromegaly for a while3,6–9

  • What are my treatment options if my symptoms aren’t fully managed?
  • How long might I expect to wait before experiencing an improvement in my symptoms?
  • Are there any specialist support services available to me/ my family?
  • Is it OK for me to exercise/start a new diet?
  • I would like to start/extend my family – might my treatment plan impact my fertility and, if so, what can be done about it?
  • Please can we discuss the potential impact of my joint symptoms on my long-term mobility?
Reference

References

Maintaining a healthy
self-image

Self-image – the way we think and feel about ourselves and our role in life – is important. Because how we look contributes to our self-image, the physical changes that often accompany acromegaly can impact self-image. It’s common to have concerns about it. It’s also important to recognise those concerns, because they can hold us back and weigh us down more than they need to.

How might self-image be
affecting you?

Regardless of how long people have had acromegaly, or how well their treatment has gone so far, absolutely anyone can be affected by self-image concerns, men and women.

Concerns might be because of visible symptoms of acromegaly, such as changes to facial features. Or they could be because of unseen things, like changes in fertility, interest in sex, fatigue or joint pain. Self-image concerns have a different impact on each of us. They may make some people feel uncomfortable or unhappy about themselves or their bodies, while others could feel anxious, and try to avoid situations or going out.

Could you strengthen your
self-image?

Taking care of your thoughts – considering why you think the things you do about yourself – can be just as important as looking after your physical health and appearance. Here are five suggestions to help you think more positively:

  • Give yourself time

    Managing your self-image can take time – but the first step towards improving your thoughts and feelings about it is accepting that it exists, that it’s completely normal and OK to feel this way

  • Find ways to be grateful

    Think about what your body has done for you. You can feel proud about making it to a diagnosis, getting through surgery or other treatments. You may even find that you appreciate the things your body can do for you more than before you were diagnosed.

  • Do things for you

    Make time regularly to treat yourself – it could be something simple like finding a quiet spot to read or just be, or take a relaxing bath.

  • Let friends help

    Try to surround yourself with people who are positive, who you feel really accept you for who you are, and who encourage your strengths. You could try letting them know whenever you could do with an emotional boost. You could also share your thoughts in an acromegaly community social group.

  • Look after your wellbeing

    From going to that healthcare appointment – to reading this right now. Think of all the things you’re doing to look after yourself already, and congratulate yourself for them. There may be things you could improve, like eating a more nutritious diet, getting enough sleep or moving a little more. Don’t be hard on yourself for not doing them yet. You can do them now. Head over to the Wellbeing section of this website for suggestions of things you could try.

Supporting a friend?1–5

Each of us loses sight of our self-worth at times. Someone who has been suffering with acromegaly symptoms and/ or undergoing treatment for the condition is no different.

It will mean a lot if you are able to help remind your friend or family member of their value, and the positive impact they have had and can continue to have on your life.

Remember, you don’t have to communicate this with words if that’s not you – taking time to be there for them, or helping them feel included in other aspects of your life can be just as important.

Reference

Getting specialist support:
For people with acromegaly

You might feel like you see enough specialist healthcare professionals already – but it’s important to get extra help if your self-image concerns are starting to impact your day-today life or overcome your thoughts. Even just speaking with your regular doctor about it can help, and they could refer you to other specialists, such as occupational therapists, physiotherapists, speech or language therapists and counsellors or psychotherapists who are all trained to help.

References

  • Eriksson E, et al. Living with a spouse with chronic illness – the challenge of balancing demands and resources. BMC Public Health 2019;19(1):422.
  • Lee A, et al. Family Members’ Experiences Supporting Adults with Chronic Illness: A National Survey. Fam Syst Health 2017;35(4):463–73.
  • Barello S, et al. The Caregiving Health Engagement Scale (CHE-s): development and initial validation of a new questionnaire for measuring family caregiver engagement in healthcare. BMC Public Health 2019;19(1):1562.
  • Sherman D. A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients. Healthcare 2019;7(2):63.
  • Rosland A-M and Piette J. Emerging Models for Mobilizing Family Support for Chronic Disease Management: A Structured Review. Chronic Illn 2010;6(1):7–21.

Looking after your
wellbeing with acromegaly

Understandably, people can sometimes feel overwhelmed by acromegaly and its symptoms. But you can choose how you respond to it. Getting treatment and support is of course a vital part of dealing with the condition. But, for people with acromegaly, focusing on wellbeing in general can be another important way to feel in better control of life.

Here are some things people can consider doing to boost their overall wellbeing.

Moving1–3

Moving is good for you, but when your life is already filled with managing acromegaly, how could you fit more into your daily schedule? Consider starting with what’s making things difficult for you. Here are a few common barriers to raising your blood flow or heart rate, and suggestions of ways to overcome them:

It makes my body ache
  • If you’re suffering from carpal tunnel syndrome, chronic pain, or an injury, the normal things you do to get out and about – like walking – can be painful in themselves. It’s especially important to get your healthcare team’s advice in this instance, but there are many activities that people who experience pain can find a lot of benefit from
  • Try doing activities in the water, for example swimming or water aerobics. Our buoyancy in the water takes pressure off our joints and helps to relieve pain. There are also specialist yoga classes that focus on relieving pain and increasing blood flow throughout the body
I don’t have the time or energy, and get out of breath too quickly
  • Start small
  • Could you try using the stairs instead of the lift, starting with just one floor?
  • Could you get off the bus or train one stop early and enjoy a little fresh air?
  • Could you try two minutes of moving where you are right now?
  • If the thing you choose works for you, try building up to three minutes tomorrow, four the next day, and so on; if it doesn’t work for you – think about why it didn’t work – is there something else you could try that could help to overcome that barrier?
I feel self-conscious
  • No one has to know – you can exercise in the privacy of your own home, or in the disguise of a normal walk in the park or to the shops
  • Overcoming worries about exercising in public can take time – be easy on yourself and remember, this is for you. Besides, it can be a massive confidence boost when you do get out in the fresh air
  • Why not get a friend to come with you and/or support you?

Congratulate yourself for every moment you spend moving – and if you can, track your progress with a smartphone app like Apple Health or Google Fit, or a step counter, or even a handwritten diary or exercise log. Seeing your progress in this way can be a great motivator until (and beyond) the point of enlightenment when you start physically feeling the progress and benefits to your body and health.

Eating well4

Because acromegaly can adversely impact the way your body processes sugar, and make you more susceptible to diabetes and heart conditions, it’s important to explore ways to get pleasure from eating and drinking beyond a bakery or your usual restaurant food choices or the adult drinks cupboard. Of course, that isn’t completely realistic for most people – there’s so much pressure from friends, peers, convenience, let alone the underlying pressure of having acromegaly…doing what we know is best for our bodies is hard. Eating well isn’t about giving things up (unless you’ve been prescribed a particular diet by your healthcare team). It’s about trying to be a little more mindful about what we eat and drink, trying to savour it for longer. And hopefully, feeling better about ourselves along the way.

If you’d like to start yourself on a healthier eating and drinking track, consider the following ideas:
  • Think of the reason why – for example, your health, being there for family – and write it down or put a picture of it somewhere you’ll see every day
  • Be clear about your goals – and make them realistic (for example, having 3-4 vegetable portions a day)
  • Find a buddy – it’s much easier to stick to something if you know someone’s there to keep you going
  • Tell your healthcare team – knowing you’ll report back can help provide that extra motivator to achieve your goals
  • Focus on only the next thing you’ll eat – how can you make that thing the right thing to eat, and when do you really need to eat it? And then congratulate yourself for having made that healthy choice. And then, plan the next one
  • Plan in advance – make meals for a week if you can; having a plan makes you much less likely to falter when you’re stressed, out and about, or feel like you have no time to cook
  • Discover new foods – healthy nutrition doesn’t have to be boring or bland; being open to trying new things can make it an exciting experience

It’s good to remember there’s no point beating yourself up if you slip up and stray away from your plans. Healthy eating isn’t all or nothing – it’s little changes that we can make every day, starting right now. And, of course, before you make any extreme changes to your diet – please remember to ask your healthcare team for advice as these could have an impact on your health in general and any medications you’re taking.

Connecting with others5–7

Feeling adequately supported can improve both your physical and mental ability to face day-to-day stresses and stressful events, from acromegaly symptoms to upcoming operations or treatments.

While friends and family members may try to be empathetic to what you’re going through, it can be difficult for them to fully understand your perspective. This can result in feelings of isolation even if you aren’t physically alone. But this makes it even more important to seek support and connections from a variety of places.

Remember, you are possibly one of a million – there between 200,000 to 1 million people living with acromegaly across the world right now. It’s hard to tell how many of them will be reachable – but it’s likely you’ll be able to find someone on your wavelength by asking your local pituitary centre or joining a local or international acromegaly social media group. They might be able to provide details of any face-to-face events or networking opportunities near you.

Prioritising sleep8–10

With acromegaly, it’s common to feel absolutely exhausted all the time, despite having a lot of sleep. This could be due to the impact of the condition itself, but it’s also important to note that up to eight in ten patients with acromegaly will also have or get sleep apnoea.

This is a condition caused by changes in the structure of your airways that can massively impair sleep quality and/or quantity. It’s a treatable condition that if unchecked could lead to impaired quality of life and a higher risk of life-altering accidents, so it’s important to be aware of the symptoms of sleep apnoea and get tested for it if you think it might affect you – ask your healthcare team for more information.

Here are some other ways to make sure you get the sleep you need to feel as good as you can:
  • Schedule it – set a fixed bedtime and wake-up time every day – respecting your biological clock can help ensure your body is ready to go to sleep and wake up when you need to
  • Exercise – for most people a minimum of 30 minutes of activity can help improve sleep quality. Aim to keep any high-energy moving no closer than four hours before your bedtime though, if possible
  • Watch food and drink – caffeine, alcohol and high sugar foods too close to bedtime (or after midday for some people) can all impair sleep, as can eating heavy meals or drinking too much fluid just before you go to bed
  • Manage stress – consider ways of coping better with the demands of day-to-day life, such as keeping a daily journal, noting things to do down to handle later, or getting further psychological support
  • Create a sanctuary – darkness, quiet and cool temperature are all important sleep-promoting conditions. Could you consider installing black-out blinds or curtains, wearing a sleep mask or earplugs, using a white noise machine and/or keeping any pets out of the sleep environment?
  • Comfort – make sure your sheets are cleaned regularly, and that your mattress is supportive. You could consider a specialist supportive mattress or pillow to help with any particular joint or back pains you’re suffering from
  • Winding down – create a calming bedtime routine for yourself; avoid TV, computer and phone screens before bed, take a bath, read with a dim light, try gentle stretching exercises or yoga relaxation techniques, or use a sleep meditation exercise

Explore mindfulness11–16

Mindfulness – focusing our attention on our experience in the present moment (our sensations, thoughts, bodily states, consciousness and the environment), noticing it with an attitude of openness, acceptance and curiosity – has been shown to help reduce symptoms of fatigue, persistent pain, sleep disturbance, stress, depression, and anxiety, and to improve general wellbeing.

How do I start?

From dedicated courses involving weekly face-to-face classes, daily practice, and mindfulness retreats, to smartphone apps that give you 2 minutes of mindfulness practice a day, there are many different ways to practise mindfulness. They all involve setting an intention to focus on a specific object or activity happening in the present moment, and gently redirecting attention back towards it whenever the mind wanders.

Once you’ve learned how to practise mindfulness, you can incorporate it into your day, for example by mindfully focusing on an activity like walking, eating, or even taking medication. Or you can take time out of your day to focus on mindfulness, for example through a guided meditation using a smartphone app. Yoga can also incorporate elements of mindfulness.

Breathing14

Hopefully you already know how to breathe! But do you know how to breathe with intent, with focus, in a way that can improve your wellbeing?

Taking a few moments out of your day (especially during a time when things might be starting to overwhelm you) and focusing on your breath can give you a little positive mental and physical boost just when you need it the most.

How do I do it?

Sit in a comfortable, upright position. If you can, find a quiet place or put on headphones or earplugs to block out any background noise or disturbance. Focus your attention on your breath. Take a deep breath over the count of four seconds, inhaling through your tummy more than your ribcage. Then gently exhale, noticing any tension in your body release as you do so. Then repeat for five more deep breaths with your eyes closed.

There are all sorts of audio guides and apps available to help you with breathing exercises like this.

Reference

Relaxation14

Purposefully making time to relax could be especially useful if you’re about to have MRI/CT scans, surgery, radiotherapy, or injections. There’s more to it than investing in monthly massages (or the persuasive effort required to get them from friends or family) – though that possibly wouldn’t hurt. A bit like mindfulness, relaxation is about focusing your thoughts and attention onto a single point of focus or activity. In contrast to mindfulness though, relaxation aims to eliminate all other thoughts, promoting a sense of calm in potentially stressful situations (whereas mindfulness is about training your mind to accept all kinds of thoughts, even discomforting ones).

How do I do it?

The way you can achieve total mind and body relaxation will be unique to each individual. This could be relaxation meditation such as deep breathing exercises, but also activities like gardening, cooking, cleaning, reading, and elements of yoga (savasana). It’s also good to note that practising relaxation isn’t for everyone – some people can feel disconcerted by relaxation techniques, in which case a mindfulness approach might work better.

References

Want to know more?

Please ask your local patient organisation, WAPO or treating physician for further information, tools and tips on living well with acromegaly.

Please note that by emailing WAPO at mail@wapo.org, you are giving your consent to be contacted by the World Alliance of Pituitary Organizations. You can opt out or change your preferences at any time by emailing WAPO again.