If you have hyperkalemia, you have high levels of potassium in your blood. If you don’t get your potassium under control, the condition can be life-threatening. That’s why it’s important to advocate for yourself at your doctor’s appointments to ensure you get effective treatment to get your potassium back in check as soon as possible.
Here’s how to take control of your condition and your care.
Educate Yourself About the Condition
Before your appointment, it’s a good idea to learn as much about hyperkalemia as possible. You’ll better understand what your doctor says and the treatment they recommend, and you’ll ask more informed and useful follow-up questions.
Of course, you’ll likely take to the internet to find information. But don’t look just anywhere. Turn to credible sources to teach yourself about hyperkalemia. Start with sites including the American Kidney Fund, the National Kidney Foundation, and the National Library of Medicine.
Take Careful Notes
Studies show that people forget up to 80% of what their doctors tell them right away. As for what they do remember, they get about half of it wrong. But you have to remember what your doctor says if you want to get control of your hyperkalemia. That’s because you’ll need to follow their instructions to the letter.
At your next doctor’s appointment, plan to write down all of your doctor’s main points. You can do it with a notepad and pen or on your phone, computer, or tablet.
Some people bring a friend or loved one with them to take notes. They may do better at capturing everything the doctor says since the information may not be as stressful or emotional for them.
Another effective way to make sure that you understand what your health care provider tells you is to repeat it back to them, in your own words. If you’ve gotten anything incorrect, they can go over the information with you again.
You can also ask your doctor if you can tape your visit on your phone, so you can listen to it later.
Bring a Complete Medication List
There are many drugs that can interfere with potassium levels. That’s why it’s important you let your doctor know about everything you take or plan to start taking, including over-the-counter medications, vitamins, and supplements.
Some medicines that can affect your potassium include:
- Certain blood pressure medicines, like ACE inhibitors.
- Herbal supplements like milkweed, lily of the valley, Siberian ginseng, dandelion, hawthorn bitters, and dried toad skin.
- Over-the-counter nonsteroidal anti-inflammatories such as aspirin, ibuprofen, and naproxen.
- Immunosuppressant medications like tacrolimus and cyclosporine.
- Antibiotics, such as trimethoprim and pentamidine.
- Diuretics like spironolactone, amiloride, and triamterene.
Ask About Other Services
You’ll need to work closely with a nutritionist or other health professional to follow a low-potassium diet. Your doctor’s office may offer other services to help you manage your condition, like nutritional counseling or support groups. If they don’t have other services, they may be able to refer you to local hospitals or clinics that do.
Sometimes hyperkalemia is caused by another condition, such as kidney disease, Addison’s disease, diabetes, or HIV. It is very important that your doctor refer you to a specialist, such as an endocrinologist, who can manage such conditions.
To make the most of limited time with your doctor, make sure you take the chance to ask questions. This will help you understand your condition and treatment better. It will also signal to your doctor that you are engaged and advocating for yourself.
Even if you think you don’t have any questions. It’s a good idea to fire off a few. You’ll come away with more information than you otherwise would have, and that’s always a good thing.
Some good questions to ask include:
- What is the main cause of my hyperkalemia?
- How often should I get blood tests to check my hyperkalemia?
- What’s the ideal potassium level for me?
- How much potassium should I get every day?
- What foods or supplements are safe for me? Which ones should I avoid?
- What salt substitutes can I use?
- Am I at risk for kidney disease or even kidney failure?
- What are some complications I should watch for?
Make a Treatment Plan
You shouldn’t leave your doctor’s office without a treatment plan. Hopefully, you’ll both play a role in devising it. Ultimately, you should feel good about this plan and confident that you can follow it.
Here are some treatment options your doctor might suggest or that you can mention:
- A low-potassium diet
- Water pills (diuretics) to help your body get rid of excess potassium
- Potassium binders, which gather up potassium in your body, so that it won’t build up in your blood
In any discussion about treatment, you’ll want to ask your doctor:
- What are all the available options?
- What are the benefits, risks, and possible side effects of each?
- Which treatment do you recommend?
- What follow-up care will I need?
You should also tell your doctors what’s most important to you, and what you’re most concerned about, when it comes to choosing a treatment.
Ideally, you and your doctor should come up with a plan that includes routine blood testing, dietary changes, and, if necessary, medications.
Remember, you and your medical providers are all players on your health care team. It’s important that you have open communication with your doctors, so you can make informed decisions about your treatment options for your hyperkalemia.
Research shows that when you feel you’ve played a role in treatment decisions, you’ll be more likely to stick to your care plan and get better results.
Get a Second Opinion if You Need It
If your hyperkalemia isn’t managed properly, it can be life-threatening.
If you don’t feel your health care provider is checking your blood potassium levels often enough, or doesn’t seem concerned about lowering it, consider seeing another specialist for a second opinion.
You can ask family or friends who have been treated for hyperkalemia to recommend another doctor. You can also get a list of approved doctors from your insurance company or call hospitals in your area. Make sure to forward your medical records before your appointment.
You should also be on the lookout for signs of sudden, severe high potassium. These include:
- Heart palpitations
- Shortness of breath
- Chest pain
- Muscle paralysis
If you have any of these symptoms, call 911 right away.
Photo Credit: ADAM GAULT / SPL / Getty Images
National Kidney Foundation: “Your Kidneys and High Potassium.”
Agency for Healthcare and Quality: “Using the Teach-Back Method.”
National Institute on Aging: “Five Ways to Get the Most Out of Your Doctor’s Visit.”
UpToDate: “Low Potassium Diet (Beyond the Basics),” “Treatment and Prevention of Hyperkalemia in Older Adults.”
Cleveland Clinic: “Hyperkalemia.”
American Heart Association: “Getting a Second Medical Opinion.”
National Learning Consortium: “Shared Decision Making.”