HealthUnlockedHealthUnlocked
AboutLog in

Experiences with

Acromegaly

Acromegaly is a rare condition where the body produces too much growth hormone, causing body tissues and bones to grow more quickly.

Over time, this leads to abnormally large hands and feet, and a wide range of other symptoms.

Acromegaly is usually diagnosed in adults aged 30 to 50, but it can affect people of any age. When it develops before the end of puberty, it's known as "gigantism".

Symptoms of acromegaly

Acromegaly can cause a wide range of symptoms, which tend to develop very slowly over time.

Early symptoms include:

  • swollen hands and feet – you may notice a change in your ring or shoe size
  • tiredness and difficulty sleeping, and sometimes sleep apnoea
  • gradual changes in your facial features, such as your brow, lower jaw and nose getting larger, or your teeth becoming more widely spaced
  • numbness and weakness in your hands, caused by a compressed nerve (carpal tunnel syndrome)

Children and teenagers will be abnormally tall.

As time goes on, common symptoms include:

  • abnormally large hands and feet
  • large, prominent facial features (such as the nose and lips) and an enlarged tongue
  • skin changes – such as thick, coarse, oily skin, skin tags, or sweating too much
  • deepening of the voice as a result of enlarged sinuses and vocal cords
  • joint pain
  • tiredness and weakness
  • headaches
  • blurred or reduced vision
  • loss of sex drive
  • abnormal periods (in women) and erection problems (in men)

Symptoms often become more noticeable as you get older.

See a GP straight away if you think you have acromegaly.

Acromegaly can usually be successfully treated, but early diagnosis and treatment is important to prevent the symptoms getting worse and reduce the chance of complications.

Risks of acromegaly

If you do not get treatment, you may be at risk of developing:

  • type 2 diabetes
  • high blood pressure (hypertension)
  • heart disease
  • disease of the heart muscle (cardiomyopathy)
  • arthritis
  • bowel polyps, which can potentially turn into bowel cancer if left untreated

Because of the risk of bowel polyps, a procedure known as a colonoscopy might be recommended if you've been diagnosed with acromegaly. Regular colonoscopy screening may also be necessary.

Causes of acromegaly

Acromegaly happens because your pituitary gland (a pea-sized gland just below the brain) produces too much growth hormone.

This is usually caused by a non-cancerous tumour in the pituitary gland called an adenoma.

Most of the symptoms of acromegaly are due to the excess of growth hormone itself, but some come from the tumour pressing on nearby tissues. For example, you may get headaches and vision problems if a tumour pushes against the nearby nerves.

Acromegaly sometimes runs in families, but most of the time it's not inherited. Adenomas usually spontaneously develop because of a genetic change in a cell of the pituitary gland. This change causes uncontrolled growth of the affected cells, creating the tumour.

Rarely, acromegaly is caused by a tumour in another part of the body, such as the lungs, pancreas or another part of the brain. It may also be linked to some genetic conditions.

Treating acromegaly

Treatment for acromegaly depends on your symptoms. Usually the goal is to:

  • reduce growth hormone production to normal levels
  • relieve the pressure a tumour may be putting on surrounding tissues
  • treat any hormone deficiencies
  • improve your symptoms

Most people with acromegaly have surgery to remove a pituitary tumour. Medicine or radiotherapy may sometimes be needed after, or instead of, surgery.

Surgery

Surgery is usually effective and can completely cure acromegaly. But sometimes the tumour is too large to be removed entirely, and you may need another operation or further treatment with medicine or radiotherapy.

Under general anaesthetic, the surgeon will make a small cut inside your nose or behind your upper lip to access the pituitary gland.

A long, thin, flexible tube with a light and video camera at one end, called an endoscope, is fed into the opening so your doctor can see the tumour. Surgical instruments are passed through the same opening and used to remove the tumour.

Removing the tumour should instantly lower your levels of growth hormone and relieve pressure on the surrounding tissue. Facial features often start to return to normal and swelling improves within a few days.

With surgery, there's risk of:

  • damaging the healthy parts of your pituitary gland
  • leakage of the fluid that surrounds and protects your brain
  • meningitis – although this is rare

Your surgeon will discuss these risks with you and answer any questions you have.

Medicine

Medicine may be prescribed if your growth hormone levels are still higher than normal after surgery, or if surgery was not possible.

3 different types of medicine are used:

  • a monthly injection of either octreotide, lanreotide or pasireotide – this slows down the release of growth hormone and can sometimes also shrink tumours
  • a daily pegvisomant injection – this blocks the effects of growth hormone and can significantly improve symptoms
  • bromocriptine or cabergoline tablets – these can stop growth hormone being produced, but they only work in a small proportion of people

Each of these medicines has different advantages and disadvantages. Speak to your doctor about the options available to you, and the benefits and risks of each.

Radiotherapy

If surgery is not possible, or not all of the tumour could be removed, or if medicine has not worked, you may be offered radiotherapy.

This can eventually reduce your growth hormone levels, but it may not have a noticeable effect for several years and you may need to take medicine in the meantime.

2 main types of radiotherapy are used to treat acromegaly:

  • stereotactic radiotherapy – a high-dose beam of radiation is aimed very precisely at your adenoma; you'll need to wear a rigid head frame or a plastic mask to hold your head still during the treatment, which can usually be done in one session
  • conventional radiotherapy – this also uses a beam of radiation to target the adenoma, but it's wider and less precise than the one used in stereotactic radiotherapy; this means this treatment can damage the surrounding pituitary gland and brain tissue, so it's given in small doses over 4 to 6 weeks to give your tissues time to heal between treatments

Stereotactic radiotherapy is more commonly used to treat adenomas because it minimises the risk of damage to nearby healthy tissue.

Radiotherapy can have a number of side effects. It will often cause a gradual drop in the levels of other hormones produced by your pituitary gland, so you'll usually need hormone replacement therapy for the rest of your life. It may also have an effect on your fertility.

Your doctor will be able to talk to you about these risks and other possible side effects.

Follow-up

Treatment is often effective at stopping the excessive production of growth hormone and improving the symptoms of acromegaly.

After treatment, you'll need regular follow-up appointments with your specialist for the rest of your life. These will be used to monitor how well your pituitary gland is working, check you're on the correct hormone replacement treatment and make sure the condition does not return.

Diagnosing acromegaly

Because the symptoms of acromegaly often develop gradually over several years, you may not get a diagnosis straight away. Your doctor may ask you to bring in photographs of yourself that span the past few years to look for the tell-tale gradual changes.

Blood tests

If your doctor suspects you have acromegaly, you'll need to have a blood test to measure your growth hormone levels.

To make sure the blood test gives an accurate result, you may be asked to drink a sugary solution before having a series of blood samples taken. For people without acromegaly, drinking the solution should stop growth hormone being released. In people with acromegaly, the level of growth hormone in the blood will remain high. This is called a glucose tolerance test.

Your doctor will also measure the level of another hormone, called insulin-like growth factor 1 (IGF-1). A higher level of IGF-1 is a very accurate indication that you may have acromegaly.

Brain scans

If your blood tests show a high level of growth hormone and IGF-1, you might have an MRI scan of your brain. This will show where the adenoma is in your pituitary gland and how big it is. If you cannot have an MRI scan, a CT scan can be carried out, but this is less accurate.

National Congenital Anomaly and Rare Disease Registration Service

If you have acromegaly, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

The NCARDRS helps scientists look for better ways to treat and prevent acromegaly. You can opt out of the register at any time.

HealthUnlocked contains information from NHS Digital, licensed under the current version of the Open Government Licence

  • Posts

  • Communities

28 public posts

Acromegaly

I would like to know if there other women who have the condition called familial acromegaly. I inherited that condition from my father and it never bothered him that he had large facial bones.
I would like to know if there other women who have the condition called familial acromegaly. I inherited that condition from my father and it never bothered him that he had large facial bones.
Dressmaker100
in Changing Faces

acromegaly update-the great fob off continues

,sat there in front of him I look too healthy,if I had had it for the last five years I would look dreadful.I replied that not everyone presents with the enlarged extremities and he said every one with acromegaly does actually!
,sat there in front of him I look too healthy,if I had had it for the last five years I would look dreadful.I replied that not everyone presents with the enlarged extremities and he said every one with acromegaly does actually!
flosslechops
in Pernicious Anaemia Society

big bones

sentence,this got me thinking about a DEXA scan I had as part of a well woman check I had in my 50th year.The results came back that my bones are a third larger than they should be so I was sent for another one to double check(same result came back)and then to a specialist to check to see if I had acromegaly
sentence,this got me thinking about a DEXA scan I had as part of a well woman check I had in my 50th year.The results came back that my bones are a third larger than they should be so I was sent for another one to double check(same result came back)and then to a specialist to check to see if I had acromegaly
flosslechops
in Pernicious Anaemia Society
Want to take advantage of all our features? Just log in!
or

Choosing an endocrinologist

Family history of Hashimoto’s, underactive thyroid, Cushing’s disease and Acromegaly. Wanting to choose the right specialist on my work’s list. Can anyone message me directly about these specialists and their experiences? Any general advice most welcome.
Family history of Hashimoto’s, underactive thyroid, Cushing’s disease and Acromegaly. Wanting to choose the right specialist on my work’s list. Can anyone message me directly about these specialists and their experiences? Any general advice most welcome.
Yppah
in Thyroid UK

Blood test results (probably Hashimoto’s)

Hashimoto’s, acromegaly, Cushing’s disease, endometriosis. I definitely feel better when I don’t eat bread, pasta and potatoes. Sugary things can make me feel bad, in particular jelly sweets and ice cream (no idea why!).
Hashimoto’s, acromegaly, Cushing’s disease, endometriosis. I definitely feel better when I don’t eat bread, pasta and potatoes. Sugary things can make me feel bad, in particular jelly sweets and ice cream (no idea why!).
Yppah
in Thyroid UK

Holby Sh*tty - Epilogue

It's used to treat acromegaly. A hormone overgrowth which causes large bones. Now, I know I have big feet but come on - that's a bit cheeky. So, I asked the doc when she visited - the loo handle one with the rubbish English - and she looked quite shocked that I had bothered to look it up.
It's used to treat acromegaly. A hormone overgrowth which causes large bones. Now, I know I have big feet but come on - that's a bit cheeky. So, I asked the doc when she visited - the loo handle one with the rubbish English - and she looked quite shocked that I had bothered to look it up.
Kryssy
in My Ovacome

Acromegaly ...

Unlike height variation across the normal range, acromegaly is abnormal growth due to the pituitary gland secreting unusually high amounts of growth hormone [GH] [2]. "A nationwide cohort study (1978-2010) including 529 acromegaly cases was performed."
Unlike height variation across the normal range, acromegaly is abnormal growth due to the pituitary gland secreting unusually high amounts of growth hormone [GH] [2]. "A nationwide cohort study (1978-2010) including 529 acromegaly cases was performed."
pjoshea13
in Advanced Prostate Cancer

Advice on Brother - Endocrinology Related

I've read that mildly high IGF1 can be linked to diabetes or hypothyroidism, interested in ruling out possible acromegaly. I would greatly appreciate any input. He is a smart young man but I am worried about his health.
I've read that mildly high IGF1 can be linked to diabetes or hypothyroidism, interested in ruling out possible acromegaly. I would greatly appreciate any input. He is a smart young man but I am worried about his health.
Andyb1205
in Thyroid UK

Toxic and Endocrine Myopathies

[/i] [i]SUMMARY:[/i] [i]Endocrinopathies known to cause myopathy include thyroid and parathyroid diseases, disorders of the adrenal axis such as Cushing syndrome, and acromegaly.
[/i] [i]SUMMARY:[/i] [i]Endocrinopathies known to cause myopathy include thyroid and parathyroid diseases, disorders of the adrenal axis such as Cushing syndrome, and acromegaly.
helvellaAdministrator
in Thyroid UK

Global pituitary community

My brother has Acromegaly for more than 20 years now. His wife Ekaterina runs Velikan, the Russian pituitary patient organization. And I participate in global pituitary patient activities.
My brother has Acromegaly for more than 20 years now. His wife Ekaterina runs Velikan, the Russian pituitary patient organization. And I participate in global pituitary patient activities.
andrusov
in Pituitary Community South Africa

Mri results breakdown....help?

Now I still have high pth and high igf1 which points to acromegaly or a problem with the pituitary. I am having another blood test in january to confirm this.
Now I still have high pth and high igf1 which points to acromegaly or a problem with the pituitary. I am having another blood test in january to confirm this.
cocobella
in Vasculitis UK

MRI results.....was the pituitary seen? Is it acromegaly?

Now I still have high pth and high igf1 which points to acromegaly or a problem with the pituitary. I am having another blood test in january to confirm this.
Now I still have high pth and high igf1 which points to acromegaly or a problem with the pituitary. I am having another blood test in january to confirm this.
cocobella
in Thyroid UK

HHT and Acregaly

Does any one suffer from Avm's pm the liver caused by HHT and also suffer from Acromegaly caused by MEN-1. Both are hereditary and genetic conditions. The Avm's clause heart failure and the only recommended treatment sessions to be a liver transplant which I at present reluctant to under g.
Does any one suffer from Avm's pm the liver caused by HHT and also suffer from Acromegaly caused by MEN-1. Both are hereditary and genetic conditions. The Avm's clause heart failure and the only recommended treatment sessions to be a liver transplant which I at present reluctant to under g.
Hidden
in British Liver Trust

diabetic?

my Gp said I was borderline diabetic (and this could be related to acromegaly(yet undiagnosed and waiting to see consultant)and to have it monitored in a year.couple of weeks ago my left foot felt cold and numb.the gp said "I cant see anything".heard that so many times before when will they realise
my Gp said I was borderline diabetic (and this could be related to acromegaly(yet undiagnosed and waiting to see consultant)and to have it monitored in a year.couple of weeks ago my left foot felt cold and numb.the gp said "I cant see anything".heard that so many times before when will they realise
Hidden
in Diabetes Research & Wellness Foundation

feeling concerned

when mentioned Acromegaly to practice manager she said she had never heard of it and a dr also said the same (cant remember if it s my own or another).if this is a condition then surely gps should know of it ?
when mentioned Acromegaly to practice manager she said she had never heard of it and a dr also said the same (cant remember if it s my own or another).if this is a condition then surely gps should know of it ?
Hidden
in Fibromyalgia Action UK

Feeling tearful and lost my post

I wake every morning to a swollen face and think why have I got bone growth in my nose and browbone.I am seeing a consultant re my hands on 24th but think that is only for CTS.I'm hoping they will see that my hands are swollen and have thickened skin -signs of acromegaly-and at least give me the chance
I wake every morning to a swollen face and think why have I got bone growth in my nose and browbone.I am seeing a consultant re my hands on 24th but think that is only for CTS.I'm hoping they will see that my hands are swollen and have thickened skin -signs of acromegaly-and at least give me the chance
Hidden
in Fibromyalgia Action UK

proposed letter to PALS

over the last two years I have developed a cough which remains undiagnosed and nasal sores and bleeding plus nasal and brow bone growth which i have been told is a condition called Acromegaly.,.Although having treatment for my nose ,it only provides temporary relief and then flares up again.After about
over the last two years I have developed a cough which remains undiagnosed and nasal sores and bleeding plus nasal and brow bone growth which i have been told is a condition called Acromegaly.,.Although having treatment for my nose ,it only provides temporary relief and then flares up again.After about
Hidden
in Pain Concern

Purple bruising on hand

I believe it to be lupus or acromegaly as was suggested by another member?
I believe it to be lupus or acromegaly as was suggested by another member?
Hidden
in LUPUS UK

cant sleep

I am hoping when I see the consultant about my hands he /she will recognize the swelling etc and tell me it is acromegaly and I when I see my gp on 26th im going to ask for referral to ENT to remove nasal bone growth and also to ask him to have bone growth removed from my foot as i cant get my shoes
I am hoping when I see the consultant about my hands he /she will recognize the swelling etc and tell me it is acromegaly and I when I see my gp on 26th im going to ask for referral to ENT to remove nasal bone growth and also to ask him to have bone growth removed from my foot as i cant get my shoes
Hidden
in Fibromyalgia Action UK

cannot do anything

more swollen and the skin on my palms is thickened the area around my nails are red and sore as are my knuckles.i cannot hold my dogs' leads in my hands nor carry shopping.I know this is not CTS as it affects my whole hands not just the first two fingers.as others have suggested -its lupus and /or acromegaly
more swollen and the skin on my palms is thickened the area around my nails are red and sore as are my knuckles.i cannot hold my dogs' leads in my hands nor carry shopping.I know this is not CTS as it affects my whole hands not just the first two fingers.as others have suggested -its lupus and /or acromegaly
anbuma
in Fibromyalgia Action UK
  • 1
  • 2
  • Next page
Filter results
Posted in
Sort by
HealthUnlocked
© 2021 All rights reserved.
App store
★ ★ ★ ★ ★ Average rating: 4.8

Company

About Us

Our Team

Partner with us

Careers

Blog

Product

Health terms A to Z

Communities A to Z

iPhone app

Start a Community

Support

Help Centre

Community Guidelines

Contact us

Cookies settings

App store
★ ★ ★ ★ ★ Average rating: 4.8
TermsPrivacySecurityCookies