Talking to Your Doctor about Acromegaly
If you’ve been diagnosed with acromegaly, you might have some basic questions for your doctor. Go ahead and ask them!
For example, you might want to ask about the pituitary gland and exactly what causes acromegaly. If you feel any discomfort or if you’re tired all the time, you can ask about these issues or any other symptoms you have.
It’s important for you to get answers to all of your questions. Your primary doctor may be able to answer them. But he or she may not be an expert on acromegaly. If your doctor can’t answer all of your questions, you can ask for a referral to a specialist. The specialist will know more about your disease. Your doctor might refer you to an endocrinologist or a neurosurgeon.
How Do You Feel About Your Disorder?
It’s important to learn the facts about acromegaly, but it’s also important to talk about how you feel about it. Your doctor might ask you to take the AcroQoL questionnaire. This is a series of 22 questions that can help doctors measure how patients feel about their condition. It covers a range of topics, from how you feel when you look in the mirror to what might happen to your sexual relationships.
Whether or not you take the questionnaire, it’s important to discuss your feelings. Talking to your doctor, a family member, or a friend can really help. There are also many support groups available, so you can connect with someone else who has acromegaly.
Keep the Conversation Going
If you’ve been living with acromegaly for a while, what you know and how you feel about it may have changed over time. If your appearance has changed, maybe you've learned to accept it more, or maybe you've learned to cope with headaches and tiredness. You may have also made some lifestyle changes to help make each day with the disease a little bit easier. These could include changing your diet, exercising, or getting emotional support from friends.
These are positive steps, but your journey will continue. Talk to your doctor about what the future holds in the short term and the long term. Remember, he or she may have treated other patients like you and can help you find the answers to new issues that arise. Keep the conversation going with your doctor and others to get the support you need throughout your journey.