Talking to your doctor about hypopara

Chronic hypoparathyroidism (sometimes abbreviated to hypopara) is a rare disease that occurs when inadequate levels of parathyroid hormone (PTH) are secreted by the parathyroid glands. This results in a mineral imbalance in the body, a low concentration of calcium (hypocalcemia) and a high concentration of phosphate (hyperphosphatemia) in the blood. In people with hypopara whose mineral levels are not controlled through standard treatment, calcium and vitamin D, the disease has a significant impact on their lives. For many of these people, despite treatment, the symptoms and comorbidities/complications (primarily in the heart, nervous system and kidneys) are substantial, and have a negative impact on their quality of life.

Management of hypopara can be complex. Many people with hypopara often struggle to find the right dose of calcium intake which allows them to feel at their best.

Being aware of your symptoms

It is important to be aware of the different signs and symptoms that are associated with hypopara, so that you can communicate these with your doctor and they can manage your hypopara appropriately. It is also helpful to be aware of the signs of high blood calcium (hypercalcaemia) and low blood calcium (hypocalcaemia) to know when to
seek help and to help explain your symptoms effectively with a doctor.

The symptoms associated with hypopara vary from person-to-person, the symptoms of hypercalcaemia may include but are not limited to:

*other symptoms may be experienced.

Talking to your doctor

When talking to your doctor about your hypopara, you may find it helpful to keep a diary, to particularly if you are experiencing fatigue or brain fog, which can cause difficulty with memory. This can also be useful for a doctor so they can better monitor your disease and tailor treatment to your needs. Things which may be helpful in noting down, or general discussion points for your appointments, include:

Keeping a diary of symptoms over time can be a good way to monitor your symptoms, so your doctor can manage these appropriately. Being aware of the symptoms of hypopara and keeping a note of when they occur can be helpful to know when to seek help from your doctor, particularly if symptoms change, become more frequent or more severe over time. A good time to take note of symptoms is before and after taking medication, it may be good to note if there is any difference in symptoms or general wellbeing.

To help track when medications and supplements are being taken and the doses. This will help the doctor in deciding if they feel adjustments are needed in your medications or dosing regimen.

Alongside medication, it is important to take note of your dietary intake of calcium and phosphate. In hypopara, the ability of the intestine to absorb calcium from food is reduced, so eating foods rich in calcium and with good absorbability is essential; for example, dairy products have a high calcium content per calorie and enhance intestinal absorption. When ingested during a protein-containing meal, calcium is also better absorbed. However, to avoid too much excretion of calcium, dietary calcium intake should be evenly distributed. In contrast, to manage hyperphosphatemia your doctor can advise you how to avoid foods with phosphate additives, and also to limit commercially-prepared foods, which are often high in sodium and phosphates. To monitor all of these factors, you should feel encouraged to record your food intake throughout the whole day.

Some people with hypopara report the need to make unplanned hospital stays and trips to the Emergency Department due to their symptoms, especially those with more severe hypopara. If you make an unplanned trip to the hospital or doctor where you don’t see your regular doctor, it can be useful to note down why you went, when, and what treatments or medications you were given, even if you don’t think it relates to your hypopara.

Hypopara symptoms can often disrupt daily life, with many people reporting that hypopara can impact on their careers, relationships and ability to do day-to-day tasks. Symptoms of hypopara may have a direct influence on these factors, such as brain fog and fatigue impacting the ability to focus at work, or tetany and muscle spasms reducing physical ability. Informing the doctor if there are activities and events that you have missed due to hypopara can be useful, as it may help them to understand the impact your symptoms have on your life. Your doctor may be able to help you by adjusting your treatment to manage your symptoms.

Mental health symptoms can often arise because of this reduced ability to live life “normally”. People living with hypopara may report feelings of depression and anxiety, emotional sensitivity and isolation. If you are experiencing these kinds of feelings, it can be helpful to talk to a doctor, who may be able to refer you to a mental health specialist who can support you. It may also help to seek support from family, friends and other people with hypopara.