Living With Hypoparathyroidism

Hypoparathyroidism is a rare and complicated condition in which you have little or no parathyroid hormone. This happens because the parathyroid glands are missing, damaged, or not working correctly.

Without enough parathyroid hormone, your body cannot regulate certain hormones responsible for keeping the body healthy. People with hypoparathyroidism often experience hypocalcemia (low calcium levels), hyperphosphatemia (high phosphorus levels), and/or hypomagnesemia (low magnesium levels).

Living with hypoparathyroidism can be challenging. It can affect your work life, personal life, confidence, and self-image. But knowing what to expect from hypoparathyroidism and how it may affect you can make you better prepared for challenges as they arise.

This article will discuss the emotional, physical, and social effects of the condition and how you can better manage these aspects of hypoparathyroidism.

Emotional

There will be plenty of instances in which symptoms of hypoparathyroidism can make you feel pretty ill. These physical feelings can make it harder to be happy, be positive, or even to cope. These feelings are normal, but the key is not to get stuck or let these emotions take over.

Research on hypoparathyroidism suggests mood disorders are unusual but can occur when hypocalcemia is present. In some instances, it is hard to differentiate between a primary mood disorder and mood or neuropsychiatric symptoms linked to hypoparathyroidism.

If you find you are experiencing symptoms of a mood disorder—such as anxiety, sadness, or feelings of emptiness—reach out to your primary care provider or a mental health professional who can help determine the source of your symptoms.

As you manage the emotions of living with hypoparathyroidism—alone or with the help of a therapist—it is important to surround yourself with the comforts and people that make you feel happy.

Life with a chronic condition can be a lonely experience. All the effects of the condition can sometimes make it hard to connect with others.

These feelings can be managed by reducing stress, improving sleep, eating a healthy diet, being activity, and following the treatment plan your doctor has prescribed.

Physical 

Hypoparathyroidism can cause physical symptoms that can affect your quality of life and ability to perform day-to-day tasks. It is important to work with your healthcare provider to find the treatments that best work to manage the physical symptoms of the condition.

Pain from muscle cramping and paresthesia (pins and needles feeling) can affect your quality of life. In addition, invisible symptoms like fatigue and brain fog can make it harder to function as you try to focus on the various aspects of your life.

Muscle Cramps and Spasms

Muscle cramping and spasms are the results of heightened neuromuscular activity from hypocalcemia. You might experience muscle spasms in your hands and feet, in your face, and in the large muscles throughout your body.

You can usually manage muscle cramps and spasms with self-care. Helpful self-care measures include stretching, massage, application of heat and cold, and staying hydrated.

If your cramps are severe enough to affect your quality of life, your doctor might adjust medications to deal with low calcium levels in the blood or prescribe medication to help relax your muscles.

Paresthesia

Paresthesia is a term used to describe numbness, burning, tingling, or prickling sensations. In hypoparathyroidism, paresthesia affects the fingertips, toes, and lips, but any body part can be affected.

If bothersome, temporary paresthesia can be treated by applying a cold compress to any area that is painful or bothersome. If there is pain, an over-the-counter medication can help.

If your paresthesia is severe, your doctor might prescribe nerve medicine to reduce symptoms. However, paresthesia linked to hypoparathyroidism often resolves when calcium, phosphate, and magnesium levels are treated and balanced.

Fatigue

Fatigue linked to hypoparathyroidism can sometimes be a main symptom of the condition or can be linked to other conditions, including muscle cramping and spasms, seizures, and brain fog. It can be described as "a feeling of weariness, tiredness, or lack of energy."

Managing fatigue often requires a variety of strategies—some are common sense, and others involve some routine and consistency. Ways you can manage fatigue linked to hyperparathyroidism are:

Addressing mood-related challenges: Fatigue is often linked to mood symptoms, such as depression and anxiety. Managing stress is one way to address these symptoms. Other methods include practicing yoga, massage, or relaxation, eating a healthy and balanced diet, getting plenty of sleep, and limiting alcohol and caffeine.

If you are still struggling despite trying to manage mood symptoms, reach out to a therapist who can help you learn ways to cope with the effects of hypoparathyroidism.

Pacing yourself: Pacing is an easy way to balance your activities day to day and week to week. Pacing involves taking regular breaks, planning your day, and keeping yourself organized to prioritize limited energy.

Practicing good sleep hygiene: Sleep hygiene means having a regular sleep routine. According to the American Sleep Association, this means practicing behaviors "to help promote good sleep using behavioral interventions."

Behavioral interventions include keeping a sleep schedule (going to bed at the same time every night and getting up at the same time every morning), avoiding daytime naps, keeping electronic devices out of your bedroom, avoiding caffeinated drinks close to bedtime, and getting your bedroom quiet and comfortable.

Keeping active: Staying active can reduce fatigue, lift your mood, make you feel more energetic, and help you to fall asleep more deeply. You can introduce exercise into your everyday activities. This includes efforts like parking farther away from your destination when on errands, taking the stairs instead of the elevator, or going for a short walk during your lunch hour.

Staying hydrated: Drink plenty of fluid, especially water, to keep your body and brain hydrated. Avoid beverages with too much caffeine, including coffee, tea, and sodas.

Eating a healthy and balanced diet: It is also a good idea to avoid foods that make you feel sluggish and add ones that give you energy. Foods such as sweets, sugary drinks and cereals, and white bread cause you to experience short-term energy bursts followed by decreased energy and concentration.

Healthier carbohydrates, such as brown rice and fruits and vegetables, contain fiber and help slow down the release of sugar in your bloodstream, helping your body maintain energy. You should also keep a balance in your diet to include protein from meat, fish, dairy, or plant sources.

Brain Fog

"Brain fog" is a term used to describe problems with focus, memory, and concentration. It tends to be a short-term symptom of hypoparathyroidism that comes and goes. An episode of brain fog can leave a person unable to think clearly for hours or days at a time.

It can affect the performance of day-to-day thoughts, organization of your thoughts, and even having conversations. Brain fog can affect language and words or cause speech to be slow or confused.

Many of the same strategies used to manage fatigue can also help you manage brain fog symptoms. Reach out to your doctor if brain fog becomes extremely troublesome or affects your ability to manage day-to-day activities, including driving.

Many of the main symptoms of hypoparathyroidism can be resolved with treatment for hypocalcemia, hyperphosphatemia, and/or hypomagnesemia. Your healthcare provider can also prescribe treatments to manage any symptoms that make it hard to manage day-to-day activities or that severely affect your quality of life.

Social

Hypoparathyroidism is a lifelong condition, and as with any chronic disease, it can affect relationships in ways that you wouldn’t expect. Here are some of the common social challenges that hypoparathyroidism can bring to your life and what you can do to improve them.

Explaining Hypoparathyroidism

It is important to learn as much as you can about hypoparathyroidism to know what to expect with the condition. You can also use what you know to educate others. Find out all you can about the signs and symptoms of hypoparathyroidism, as well as your treatment options.

Managing Relationships

Having a chronic condition doesn’t change your need or responsibility to maintain relationships.

Your family and friends can be great sources of support and help. But they need to know what you need from them to help. Whether it is providing a listening ear or helping with chores, these people can make your life easier until symptoms of hypoparathyroidism improve.

Of course, not everyone in your life will take the time to understand what you are going through or be supportive. Try to surround yourself with people who care about you and with whom you can talk openly.

Online Support

The Internet is full of resources for information and to help you to understand the effects of hypoparathyroidism better. These resources may also allow you to connect with others also living with hypoparathyroidism.

Online support groups are a great way to connect with others who understand your struggles. Being connected can improve your understanding of hypoparathyroidism and help you feel less isolated. 

National organizations, such as the HypoPARAthyroidism Association and Hormone Health Network, offer information about hypoparathyroidism and online forums to help you connect to others around the country living with the condition.

Practical

The key to living well with hypoparathyroidism starts with accepting what is important and understanding your limitations. After all, it takes a lot of energy to fight what is out of your control.

Acceptance and understanding do not mean you are giving up. They mean you are willing to find other ways to make your life easier and plan for the unexpected.

Taking Care of Yourself

Taking care of yourself can help get hypoparathyroidism under control. This starts with taking all your treatments exactly as prescribed. Reach out to your doctor if you are having any problems with medications and to get more details on how to stay current with your treatment plan.

You should also take your calcium and vitamin D supplements as directed by your doctor. You may need to take these for the rest of your life.

Attending Appointments

Make sure you go to all your appointments and reach out to your doctor’s office if you are experiencing any problems, including worsening symptoms. Your doctor will want to check your parathyroid hormone and calcium levels regularly so be sure to keep up with the bloodwork schedule your doctor has set for you.

Summary

Hypoparathyroidism is a condition in which the parathyroid glands in the neck do not produce enough parathyroid hormone. It is a chronic condition, and you will need to manage it for the rest of your life.

Living and coping with the condition requires having the right information, support, and resources. This starts with taking an active role in your care and managing the various aspects of hypoparathyroidism, including its emotional, physical, and social effects. 

Make sure you reach out to others who are also living with hypoparathyroidism. Having these connections and support is vital to living successfully with the many effects of the condition.