A Guide to Radioactive Iodine (RAI) Treatment for Children

Learn the basics of radioactive iodine used in children with thyroid disease. This post will also cover how to make your child’s experience more comfortable.

Diagnosed with Ewing Sarcoma at 11, Megan endured challenging chemotherapy and surgery, navigating the emotional toll of hair loss and post-surgery effects. Supported by her family and compassionate care team, she emerged resilient, eventually becoming a pediatric nurse to help others like her.

Radioactive iodine is a medicine commonly used to diagnose and treat individuals with thyroid disease. Though found more frequently in adults, thyroid disease can also affect children. This article discusses the basics of pediatric thyroid disease and radioactive iodine as a means of treatment. You will find out what your child can expect when undergoing radioactive iodine therapy. This post will also provide useful advice for communicating this information to your child—ensuring they have a comfortable treatment experience.

Pediatric Thyroid Disease

Learning why your child’s thyroid may not function correctly is a great first step in helping them understand their treatment process. When the thyroid gland doesn’t work properly, it can lead to conditions such as hypothyroidism or hyperthyroidism. Hypothyroidism results from an underactive thyroid gland that does not produce enough thyroid hormone. Hyperthyroidism, on the other hand, refers to the overproduction of the thyroid hormone, thyroxine. 

Graves’ disease ranks as the most common cause of hyperthyroidism in children. The rate of pediatric Graves’ disease peaks in late childhood and occurs more often in females. If left untreated, hyperthyroidism associated with Graves’ disease can lead to systemic complications involving the eyes, skin, bones, and heart.

Current treatments for pediatric thyroid disease include antithyroid medications, surgery, and radioactive iodine (RAI). While antithyroid medication can alleviate symptoms, studies show only around 30% of children achieve long-term remission (significant reduction of signs and symptoms) within two years of therapy. Children who do not achieve long-term remission may require more aggressive treatment. In that case, their doctor may suggest RAI treatment because it is safer and cheaper than thyroid surgery. Even in the case of thyroidectomy surgery (removal of the thyroid) to treat thyroid cancer, a small amount of thyroid tissue often remains and must be eliminated with RAI.

RAI and the Thyroid Gland

The thyroid gland manages how the body regulates energy and is particularly important for children as they play, learn, and develop. If your child has been diagnosed with thyroid disease, their physician may recommend radioactive iodine therapy. The thyroid gland is the only tissue in the body that absorbs iodine. Thus, administering different radioactive forms of iodine helps identify and treat thyroid disease. When undergoing RAI treatment, your child will have to modify their diet, stop taking certain medications, and temporarily isolate afterwards to prevent exposing others to radiation. Additionally, they may experience varying side-effects. 

Communicating with Your Child

It is normal for children and adults alike to be nervous about receiving radiation. Undergoing RAI treatment can add stress to a patient’s care process. Patients may fear the concept of being “radioactive” or having to isolate themselves from others. The idea of being alone may concern your child or even make them feel as though they are being punished for their treatment. 

When preparing your child for treatment, it is important that they are properly educated on how the RAI works and how long the treatment will last. You can assure them that the necessary isolation is temporary and can be done within the comfort of your home. The required isolation period varies based on the radioactive dose given, though it typically does not last longer than one or two days. To ease their fear of isolation, you may consider preparing their room ahead of time with their favorite movies, books, or toys.

Additionally, many of the side effects they may experience will resolve on their own and are rarely permanent. Over-the-counter pain relievers can help relieve any pain that arises in the neck area. Regarding the life-long thyroid hormone medication afterward, the medicine comes in the form of a simple pill and helps people continue to live healthy, normal lives!

What is Radioactive Iodine Treatment?

The cells in the thyroid gland absorb iodine and use it to create hormones. This means doctors can use radioactive iodine to observe and treat the thyroid gland. There are two types of radioactive iodine: I-123 and I-131

I-123 is harmless to thyroid cells and is only used to image the thyroid. It is not used as a form of treatment, and your child will not need to isolate or take any other radiation precautions after receiving I-123. 1-131, on the other hand, is given to treat the overactive or cancerous thyroid cells. Patients who receive this form of RAI will be asked to take certain radiation precautions and may experience other side-effects. 

Regardless of which form is administered, your child will take the radioiodine orally as a pill or liquid, after which it will then be absorbed by their thyroid. If given I-131, the radioiodine will emit a radiation that destroys the thyroid cells. This process is referred to as RAI ablation. 

RAI ablation can be administered as a stand-alone treatment or after surgery. In the case of thyroid cancer, small amounts of cancerous thyroid tissue may still remain after a thyroidectomy. To account for this, your child may receive additional I-131 to eliminate remaining thyroid cells. This greatly reduces the chance of the cancer growing back. This is referred to as RAI remnant ablation. 

Before Receiving RAI

Prior to receiving either form of RAI, your child must complete the following steps: 

  1. Low-iodine diet: They must consume a low-iodine diet during the two weeks leading up to treatment. An iodine-deficient thyroid will more readily absorb the radioactive iodine. Since it is hard to control what ingredients restaurants use, you may want to avoid eating out during these 2 weeks. Instead, you can use our low iodine cookbook as a guide to treatment-friendly recipes.
  2. Increase in TSH levels: The pituitary gland inside the brain secretes thyroid-stimulating hormone (TSH) to promote the absorption of iodine and production of thyroxine by thyroid cells. Your child’s TSH levels need to be elevated well above the normal range to ensure the RAI is effective. This is because an increase in TSH levels will stimulate the cancer cells to absorb more of the radioactive iodine. If your child is already on synthetic thyroid hormone, temporarily pausing their hormone replacement for two to four weeks can increase their TSH levels. Alternatively, man-made recombinant human TSH (rhTSH) can be given until the TSH levels are high enough. You should meet with your child’s specialists to discuss the best method of TSH elevation for your child. 

After RAI: Side Effects, Isolation and Medication

Your child may experience some acute and longer-lasting side effects from the I-131:

  • Nausea shortly afterwards. You may manage this with anti-nausea medication.
  • Neck tenderness and swelling that can be managed with over-the-counter pain medications
  • Salivary gland inflammation that leads to dry mouth, decreased taste, and increased risk of developing dental cavities. Strong dental hygiene is recommended. 
  • 15% of patients experience permanent saliva issues. Your child may avoid this by consuming sour candy or lemon juice a day after the RAI dosing, and getting plenty of hydration for the next week.

Your child’s body will eventually process the radioactive iodine through their urine, sweat, and saliva. A nuclear medicine technologist will review with you the extra precautions they should take—including avoiding traveling and temporarily isolating from others. Isolating will decrease the risk of exposing other people to radiation. Since radioactive iodine therapy destroys previously overactive thyroid cells, your child will need to take thyroid hormone medicine to compensate for a decrease in thyroid hormone production.

While RAI is an important step in treating your child’s thyroid disease, the thought of receiving radioactive treatment can worry anyone, regardless of age. We hope that this article has helped answer any questions or concerns you may have had regarding pediatric thyroid disease, why it is treated with RAI, what that treatment process looks like, and how you can prepare your child.

Healthcare Disclaimer

We encourage you to speak with your doctor if you have any other questions or concerns regarding your symptoms and treatment. While this information provides a helpful guide, it does not replace consultation with your healthcare provider.

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