Restless Legs Syndrome Foundation Blog

Peter Kendall Brooks — May 17, 1944 - January 21, 2023

The RLS community has lost a powerful friend and advocate. Peter K. Brook's steadfast support for the Foundation’s Research Grant Program has advanced knowledge in the field of RLS as we search together for better treatments and a cure. For at least four decades before his death, Peter suffered from an exceptionally severe case of restless legs syndrome. Despite the ongoing challenges of sleep deprivation and other effects of the disease, he never let it slow him down or reduce his commitment. His willingness to persevere was an inspiration to all who worked closely with him on the RLS Board and elsewhere.

Peter served on the Foundation's Board of Directors from 2000 to 2005. He brought a wide range of skills to his work on the Board. His career in investment banking with J.P. Morgan (now part of Chase Bank) equipped him with both financial knowledge and relationships to lead the Board’s development efforts. He was instrumental in creating structures that continue to support our work in finding and working with donors. His passion was discovering connections with others who shared his commitment to research. He was a believer in efforts to improve the lives of those living with the disease and strongly supported the Foundation’s three-part focus to raise awareness, develop better treatments, and find a cure for RLS.

After his retirement from the financial world in 1995, Peter developed a second career as an artist, recognized for his talent in two realms: abstract painting and music. His artworks now hang in permanent collections of prominent institutions including the Monterey Art Museum and the Crocker Art Museum in Sacramento. His songwriting and guitar performances took him around the nation, and, thanks to YouTube, around the world. More about his life and artistic pursuits can be learned at https://www.pkbrooksart.com.

Peter generously shared his RLS journey on film to raise awareness and to educate members of the public and those in the medical community. In a widely viewed RLS and Augmentation Video Peter stressed the importance of knowledge: finding a knowledgeable provider and becoming a knowledgeable patient. He urges those with RLS to work with a provider willing to have a two-way dialogue about addressing the challenges of the disease.

With Peter’s passing, the Foundation loses not only a dedicated advocate for the work we share in dealing with this disease, but we also lose a warm and talented friend. RLS Foundation Executive Director Karla Dzienkowski recalls the time that Peter detoured from one of his national musical performance tours to visit with Foundation staff. “We had a great afternoon at the South Austin Café, and we even helped to pick out some western wear for his upcoming shows,” she remembers.

As the RLS Foundation celebrates the 25th Anniversary of the Research Grant Program, we are reminded of Peter’s commitment to research. We are on the verge of funding our 50th grant proposal for groundbreaking scientific, medical research -- a program that has poured nearly $2 million into the field. We invite all to honor Peter Brooks as a leader, a tireless worker, and an inspiration for addressing the challenges that lie ahead through a memorial gift to research in his name.

My Experience with Iron Infusion

I was 12 years old in the summer of 2002 when I began having trouble sleeping. I would wake up in the middle of the night with creepy, crawly feelings in my legs and an immediate urge to get up and move around. I would walk downstairs to my parents’ bedroom to explain what was happening, only to have the symptoms stop when I got to their room. These episodes occurred throughout the night and led to exhaustion, daytime sleepiness and poor grades at school.

I was evaluated by six doctors in six medical specialty areas who could not pinpoint what was causing my sleep problems – or even give it a name. I was told multiple times that I was experiencing “growing pains” that would eventually go away. Finally, I was diagnosed with restless legs syndrome (RLS), and my family’s primary focus became finding a treatment plan to manage my symptoms. When one person’s sleep is affected, the whole family feels the impact of nightly sleep disruptions.

I tried several conventional RLS treatments, however, none thoroughly relieved my symptoms. My ferritin level was tested and found to be considerably low. Because I was so young at the time, intravenous (IV) iron wasn’t an easily accessible option for me. So, I began a course of oral iron to see if I could raise my ferritin level. For about 14 years, I tried several different oral iron preparations, combinations of oral iron, and different dosages and times of administration, but tests confirmed that none of these treatment strategies was effective in raising my ferritin level above the 75–100 mcg/L target range for individuals with RLS.

My RLS doctor tracked and plotted my ferritin level with successive iron tests. Despite my adherence to oral iron administration guidelines, I eventually reached a point where the iron stores in my body would not meet or exceed mid-level values for ferritin. At that point, my RLS doctor discussed with me the risks and benefits of IV iron, coordinated my care with a hematologist, and provided instructions for IV iron administration for me as an RLS patient.

In 2016, I found a hematologist to administer IV iron as a way to increase my ferritin level. For my first iron infusion, I received low-molecular-weight iron dextran (INFeD). Other formulations of IV iron were used in subsequent infusions.

Iron infusions are relatively easy procedures that, from start to finish, take about two to six hours, depending on the type of iron formulation approved by your insurance company. First, the nurse checks your vital signs and sets up equipment to monitor your pulse and blood pressure. Second, an IV is started, and a test dose of the iron preparation is administered by IV. This is followed by an observation period of up to one hour. During the observation period, the nurse watches to make sure there aren’t any allergic reactions to the test dose. If you do not experience any allergic reactions, the nurse administers the full IV iron dose via a pump to ensure a controlled rate of infusion. Throughout the infusion period, the nurse continues to monitor your vital signs and check to see if you are having any unusual feelings that may indicate a side effect of the therapy. Once the iron infusion is complete, the IV cannula is removed, vital signs are checked for the last time and you are allowed to go home.

Since my first iron infusion, I’ve received this treatment about once every two years. I’ve noticed two main symptoms that usually indicate my ferritin levels are low: feeling more tired during the day and restless feelings in my legs. That means it’s time for another iron infusion.

For me, iron infusions have made a significant difference in helping to increase my ferritin levels, which in turn make my RLS more manageable. I still limit my caffeine intake, exercise daily, and maintain a normal sleep schedule by trying to go to bed and wake up around the same times each day. However, I know that my increased ferritin levels, resulting from iron infusion therapy, have led to a significant decrease in the restless sensations that would otherwise keep me awake at night and seriously affect my quality of life.

For more information see Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report.

Iron, Diet and Management of Iron Levels

The relationship between RLS and iron is complex, but research over the last two decades has increased the understanding of this relationship. It is now clear that brain iron deficiency plays a significant role in the development of RLS.

Dietary Iron

Iron intake from diet is essential for maintaining iron stores in the body. Unfortunately, the body absorbs only 10%–15% of dietary iron, and all ingested iron is not absorbed equally. Knowledge of iron sources in the diet will help people make choices that aid in the maintenance of iron stores in the body.

Dietary forms of iron are divided into two categories: heme iron and nonheme iron. Heme iron is only found in animal sources such as meat, poultry, fish and shellfish, and is easily absorbed in the gut. The body absorbs about 15%–35% of heme iron intake. To enhance the absorption of iron, foods rich in iron should be consumed with foods rich in vitamin C, such as orange juice, bell peppers and tomatoes. It is the acid environment in the stomach caused by vitamin C that helps iron absorption. Conversely, some items can impair the absorption of iron in foods. These items include the tannins found in tea and coffee, and the calcium in milk products and antacids.

Nonheme sources of iron include leafy greens, nuts, seeds, whole grains, legumes and fortified cereals. Although these foods are a source of iron, the iron they contain is not easily absorbed by the body. The percentage of nonheme iron absorbed is only 5%–12% because the human gastrointestinal tract does not readily absorb this type of iron.

Medical Conditions

Several medical conditions can further impair iron absorption in the gastrointestinal tract, leading to iron deficiency anemia, a state of low stores of iron in the body. Malabsorption of nutrients, including iron, occurs with medical conditions such as:

• Celiac disease
• Ulcerative colitis
• Crohn’s disease
• Small intestinal bacterial overgrowth
• Irritable bowel syndrome

Iron deficiency anemia is also common during pregnancy due to increased blood volume and the need for additional iron by the mother and fetus. In addition, blood loss resulting from heavy menstrual cycles, surgery, or chronic blood loss due to peptic ulcers, hiatal hernia, polyps or cancer can cause iron deficiency anemia.

Brain Iron Deficiency and Iron Supplementation

Lack of available iron affects the brain and the dopaminergic system. Brain iron deficiency and dysfunction of the dopaminergic system play a central role in the development of RLS. That is why every individual with RLS needs to monitor their iron status and the steps they need to take to maintain their iron stores at the recommended levels. Low stores of body iron, as measured by serum ferritin levels and low serum iron saturation levels, correlate with low iron in the brain and the worsening of RLS symptoms.

RLS researchers recommend a serum ferritin measurement of 100 mcg/L or above to minimize the severity of RLS symptoms. If dietary sources of iron are insufficient to maintain iron stores in RLS patients, oral iron supplementation is the next step to help keep serum ferritin in the acceptable range. Oral iron is recommended when serum ferritin is less than 75 mcg/L, with the goal of raising serum ferritin levels to 100 mcg/L within three months of initiating therapy.

Guidelines to achieve maximum absorption of supplementary oral iron include:

• Use ferrous sulfate 325 mg tablets with 60–65 mg elemental iron (check the bottle, as the amount varies), taken once daily with a beverage containing vitamin C or with a 250 mg tablet of vitamin C.
• Take the oral iron at night; iron redistribution in the brain is highest during the nighttime hours and studies suggest it may be better absorbed later in the day.
• Avoid consuming tea, coffee, products containing calcium (dairy products, antacids), and reflux medications within two hours of taking oral iron.
• Schedule oral iron four hours before or after taking thyroid medications to maintain the effectiveness of the thyroid medication.

Intravenous (IV) iron infusion should be considered if ferritin levels of 100 mcg/L or above are not achieved after three months of oral iron therapy. In two recent randomized, double-blind, placebo-controlled studies, RLS patients with a normal hemoglobin level, serum ferritin of less than 300 mcg/L, and transferrin saturation of less than 45% were administered 1,000 mg of iron intravenously and showed improvement in their RLS symptoms. After infusion, it takes six to eight weeks to evaluate iron status and symptom improvement.

Administering IV iron to RLS patients with low serum ferritin levels will quickly raise those levels above 100 mcg/L and improve their symptoms in less time than it takes to evaluate the effects of oral iron supplementation. For individuals with low serum ferritin and a high level of symptom severity, IV iron is an important treatment consideration to ensure adequate iron stores in the body, iron distribution in the brain and better management of RLS symptoms. In patients with falsely elevated ferritin levels due to inflammation or infection, a low serum iron saturation of less than 20% may be a better indication of the need for iron supplementation.

Conclusion

For people with RLS, maintaining iron stores at therapeutic levels requires a close working relationship with an RLS provider who understands the connection between the level of iron stores in the body and its impact on RLS symptoms. Revision of an RLS treatment plan based on a periodic evaluation of iron tests will ensure better management of RLS symptoms and an improved quality of life.