Five Tips to Make the Most of Your Doctor’s Visit When You Have XLH

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by Emily Malcolm |

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Effectively managing treatment and care for a rare disease such as X-linked hypophosphatemia (XLH) can be challenging. So, when you go to your doctor it is important to be prepared for a meaningful dialogue about your condition.

Here are five tips for making the most of your doctor’s visit:

Make a list of your concerns

Make a list of your concerns before the visit, so you can get all of your questions answered during the visit.

For example: What have you noticed since your last appointment? Do you have new symptoms? Have you noticed that you are having trouble completing tasks that weren’t a problem before? Have you had changes in medications? Have you noticed any side effects from your medications?

Keep your records together

Keep your medical records together and take them with you when you go for your doctor’s visit.

It’s a good idea to keep this package of records together with your health insurance information, as well as a current list of all medications and supplements you are taking. For each medication or supplement, be sure to note the dosage and how often you take it.

If you are on a special diet, record it so that you have the information at hand during the doctor’s visit.

Keeping good records of your symptoms and treatments makes it easier for your doctor to notice patterns or changes.

Have a plan for the appointment

What are your goals for the visit? Do you need to discuss a medication change or a new symptom. Are you curious about something you’ve read or heard about XHL and want to hear your doctor’s perspective about the topic?

Have a plan to make sure that everything you need to accomplish can be done, and that you don’t forget a key point while others are being discussed.

Record your appointment

Even when the doctor’s appointment goes according to plan, things can move very quickly and small details may be missed. Use an app on your phone or another device to record the doctor’s recommendations precisely. (But make sure you get your doctor’s permission before you start recording.)

Update your treatment plan

At the end of every appointment, ask the doctor to review your treatment plan. A treatment plan is a detailed file containing information about your disease, the goals of treatment, treatment options, potential side effects, and any other concerns.

Update your treatment plan after every appointment. If you are in school or receive treatment through an employee health clinic, you may want to make sure they have a copy of your updated treatment plan for their records.


Last updated: April 2, 2020


XLH News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.