Managing your health when you have a rare disorder such as hypoparathyroidism can be challenging. There is a lot to keep in mind and it is easy to feel overwhelmed during a visit to the doctor. Here are some tips to get the most out of your next doctor’s appointment.
Find a specialist
When you have a rare disorder such as hypoparathyroidism, it is important to receive specialized medical advice about your condition and its treatment. You can check with your local clinic to find out if anyone is knowledgeable about the condition. Alternatively, one of these organizations may be able to help:
- Hypoparathyroidism Association
- Light of Life Foundation
- Hormone Health Network
- American Thyroid Association
- Parathyroid UK
Make a list of your concerns
Before every doctor visit make a list of all concerns you have about symptoms, side effects from treatments, or possible changes to your treatment. This will help you remember to ask about your concerns while there.
Be sure to let your doctor know if you have changes in your symptoms. This could be increased muscle spasms, tingling or burning sensations, fatigue, or mood changes, and these symptoms may worsen as the disease progresses.
Up to 70% of hypoparathyroidism patients experience seizures. So, it is important to let your doctor know if you experience any warning signs of seizures. Those warning signs may include unusual sensations or odd feelings, loss of control of your body, unexplained confusion or loss of consciousness, loss of control of your bladder or bowels, or other unusual experiences.
Keep up with your records
Having a notebook that contains your notes, medical records, and insurance information can help you stay organized. Bringing this notebook to all appointments can help you keep all of your medical information in one place. You can find and update them as needed.
An organized notebook also can be very helpful if you need to see different doctors, especially if they are parts of unrelated networks and might not have immediate access to your medical history. Having notes about what medications you use, how much calcium, vitamin D, and other supplements you are taking, and how frequently you are taking them can all be very useful information during the appointments.
A food journal also can be helpful. It allows doctors to see how much calcium you may be getting in your diet so they can offer informed advice about adjusting your supplement levels.
Record the visit or bring some help
Many patients can feel overwhelmed during a doctor’s visit. It may be hard to write down and remember everything your physician tells you during the visit. This could be especially difficult if you have symptoms that distract you or make it hard for you to focus. Bringing along another person to help take notes and understand what the doctor is saying may be helpful. You also may want to ask your physician if you can record the session in case you need to review the meeting afterward.
Update your treatment plan
Before the session ends, make sure to ask your doctor to review your treatment plan for any necessary changes. A treatment plan is a document that contains information about your disease, possible symptoms, current treatments and their side effects, and any other recommendations.
The treatment plan is important to have if you see multiple doctors. It also is useful in case of emergency if you need to receive care from doctors who may not be familiar with hypoparathyroidism and your medical history.
Last updated: Jan. 29, 2021
Hypoparathyroidism News 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 provider 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.
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