“I’ve gone back to an active lifestyle”
This patient testimonial reflects only this person’s opinions about their own care. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of acromegaly.
Please note that all treatments may have side effects. They vary depending on the treatment and how your body reacts to it. Ask your doctor about side effects when considering a given treatment.
If you have had surgery for acromegaly then you should notice a reduction in your acromegaly symptoms.
This is because the amount of growth hormone in your body should be reduced within days of surgically removing the tumour from the pituitary gland.
You may notice that your rings become looser and your shoes and gloves may fit more comfortably although your hands and feet may not return to being the same size as they were before you were diagnosed with acromegaly. And, any excess sweating you may have experienced should also markedly improve.
Over time other symptoms may also decrease and soft tissue swelling around your face may lessen, but any bony physical changes that may have occurred, such as an enlarged jaw or dental changes, will not revert to how they were before your diagnosis.
Of course not everyone will have the same effects of treatment and there may be long-term after effects of having surgery. Loss of smell and taste can be a problem for some people and recovery may be slower than expected. Following surgery you will need to take things easy for a while, so don’t expect everything to go back to normal immediately after surgery.
Surgery may also not completely lower your growth hormone levels to within a normal range, meaning that you may require further treatment with either radiotherapy or medications.
Medications should help to reduce growth hormone and insulin-like growth factor 1 (IGF-1) levels within your body relatively soon after starting treatment. It is important that you receive your medicine regularly for it to be successful.
Remember also that all medications have side effects, although not everybody will experience them or to the same degree and the side effects experienced will depend on the specific medicine you are prescribed.
Always read the patient information leaflet that is provided with your specific medicine.
It is important that you talk to your endocrinologist or endocrine nurse about what to expect so that you can be prepared. They should be able to advise you on what to do is you do have side effects and help you mange them if needed or suggest alternative treatment options.
This patient testimonial reflects only this person’s opinions about their own care. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of acromegaly. Please note that all treatments may have side effects. They vary depending on the treatment and how your body reacts to it. Ask your doctor about side effects when considering a given treatment.
Indeed, it may take several months for your symptoms to start to improve and years for the effects of radiotherapy to be complete. Growth hormone will still be secreted during this time so you may need to take medication for your acromegaly.
Likewise it can take time for side effects of radiotherapy to appear, particularly loss of function of the normal pituitary gland. In some cases the effects of radiotherapy can be seen up to a year or more later. Regular or annual check-ups may be needed during this time.
People with acromegaly can develop a loss of normal pituitary function, either because of the pituitary tumour or its treatment.
This means that patients need to be continually monitored and, if there is a problem, replacement hormones such as hydrocortisone (to replace cortisol, the main adrenal gland hormone), thyroxine (thyroid gland hormone), testosterone (in men) and oestrogen (in women) may be needed long term.
It is important that your growth hormone and IGF-1 levels are monitored to ensure your treatment is having the desired effect, so it will be necessary to have regular appointments at the hospital.
How often you will need to be seen depends on your individual circumstances, your doctors’ usual practices as well as local hospital protocols and national guidelines.
After surgical removal of the tumour, for example, your neurosurgeon may ask you to come back in a few weeks to check that everything is OK, sooner if you have any issues. How often you will return after that depends upon the protocols that he or she must adhere to.
After radiotherapy you may only require hormone testing once a year, but if you are taking medication, your doctor may suggest you are tested more often. This may be every 2 weeks when you first start treatment and then every 6 months thereafter.
Always refer to the guidance of your healthcare team to find out how often you will need to be seen.
Read and hear answers to some common questions that patients with acromegaly have asked
Find an acromegaly patient support group in your country to find out about local activities and events that you may be able to attend
Information about the emotional, physical and social challenges of living with acromegaly