What can you expect from your acromegaly 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 repeat surgery, medications and/or radiotherapy.

What to expect after radiotherapy

Unlike surgery or medical treatment for acromegaly, it may take longer for the effects of radiotherapy to be noticeable.

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 to control your growth hormone levels in the meantime.

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 side effects of radiotherapy can develop 10 to 15 years later. Regular or annual check-ups may be needed during this time.

Will I need any hormone replacement treatment?

Even after initial treatment, people with acromegaly need to be monitored periodically by their doctor to make sure that their pituitary gland is functioning properly. Replacement hormones such as hydrocortisone or cortisone acetate (to replace cortisol, the main adrenal gland hormone), thyroxine (thyroid gland hormone), testosterone (in men) and oestrogen (in women) may be needed long term.

Your doctor will advise you if you need hormone replacement therapy.

How often will I need to visit my doctor?

It is important that your growth hormone and IGF-1 levels are monitored periodically to ensure your treatment is having the desired effect, so it will be necessary to have regular appointments with your doctor.

Your doctor will tell you how often they would like to see you following your initial treatment.

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 follows.

After radiotherapy you may only require hormone testing once a year, but if you are taking medication, your endocrinologist 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.