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Preparing for your appointment
By Mayo Clinic staffYou're likely to start by first seeing your family doctor or a general practitioner. However, because prophyria can be difficult to diagnose, when you call to set up an appointment, you may be referred immediately to a doctor who specializes in blood disorders (hematologist).
It's a good idea to be well-prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet or not take any medications.
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins and supplements that you're taking.
- Bring a family member or friend along, if possible. Sometimes it can be difficult to soak up all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Preparing a list of questions before your appointment will help you make the most of your time together. List your questions from most important to least important. For prophyria, some basic questions to ask your doctor include:
- What is likely causing my symptoms or condition?
- Other than the most likely cause, what are other possible causes?
- What kinds of tests do I need? Do I need genetic testing?
- How severe is my condition?
- What is the best course of action?
- What are the alternatives to the primary approach that you're suggesting?
- I have other health conditions. How can I best manage them with porphyria?
- What restrictions will I need to follow?
- Is there a generic alternative to the medicine you're prescribing?
- Are there any brochures or other printed material that I can take home with me? What Web sites do you recommend?
- Should my family members be screened?
- Will I need a medical alert bracelet?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment any time you don't understand something or need more information.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them can save time. Your doctor may ask:
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
- Do any family members have similar symptoms?
What you can do in the meantime
Avoid the following:
- Sunlight
- Alcohol
- Any unnecessary drugs, including over-the-counter medications
- Smoking
- Fasting and dehydration
- Porphyria. National Digestive Diseases Information Clearinghome (NDDIC). http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/. Accessed March 24, 2009.
- Porphyria. Genetics Home Reference. Accessed March 24, 2009.
- Sassa S, et al. Understanding the porphyrias. http://www.uptodate.com/home/index.html. Accessed March 24, 2009.
- Learning about porphyria. National Human Genome Research Institute. http://www.genome.gov/pfv.cfm?pageID=19016728. Accessed March 24, 2009.
- About porphyria. American Porphyria Foundation. http://www.porphyriafoundation.com/. Accessed March 24, 2009.
- Anstey AV, et al. Liver diseases in erythropoietic protoporphyria: Insights and implications for management. Gut. 2007;56:1009.
- Sassa S, et al. Porphyria cutanea tarda, hepatoerythropoietic porphyria, and toxic porphyria. http://www.uptodate.com/home/index.html. Accessed April 2, 2009.
