In Online Forums, Women Share Copper IUD Fears

(WOMENSENEWS)– On a late afternoon in December 2013, Colleen Finan remembered chatting with one of her roommates after a day at work like any other. A savory pasta and chicken casserole was baking in the oven; a Food Network show was droning on in the background. In an odd instant, Finan began to feel hot and shaky. Her hands went numb. She sat down on the floor trembling. Then she looked up at her worried roommates, not sure of what was going on.

The healthy 25-year-old graduate student, who described herself as very organized and attentive, was suddenly, without warning, "out of it."

Finan made several doctor appointments. A cardiologist administered two electrocardiograms. One monitored her heart for 24 hours. She had her blood tested. None of the medical tests showed any abnormality.

The diagnosis was simple: Her medical doctor said it was a panic attack. More such attacks continued every day for two months. The sweating and pounding heartbeat she experienced are some of the typical symptoms of acute anxiety.

Her primary care physician prescribed Xanax, an anti-anxiety medication. She filled the prescription but never took the pills. Instead, she began to see a therapist. Still, the frightening episodes continued.

The therapist suggested that Finan examine her life to try to understand what had possibly triggered such an unusual reaction. She ruled out stress or any other psychological condition. She was in love with her boyfriend of seven years. She had a good relationship with her parents, and her graduate studies in public administration and her part-time job in a Providence, R.I., law firm were going well.

Finan remembered landing on the only new thing in her life; an intra-uterine device for contraception that her gynecologist had inserted in her uterus six months earlier.

She had opted for the copper-releasing IUD because of her genetic intolerance of hormonal treatments. Her gynecologist assured her that the T-shaped device was safe and effective for up to 10 years. Finan considered it "a great option." For the first six months she had no side effects other than a heavier menstrual period, which is common among copper IUD users.

IUD Ruled Out as Culprit

The panic attacks continued for about a month. Sometimes the symptoms included only numbness in her hands or headaches. Sometimes they were overwhelming. But all of the doctors Finan consulted agreed that she was physically fine apart from anxiety. All ruled out the possibility that the copper IUD was to blame for her symptoms.

Still, the attacks persisted. So Finan turned to the Internet. When she typed in keywords "copper IUD," "panic attack" and "anxiety," a website about a so-called copper toxicity syndrome caught her attention. Then she found a group on yahoo.com named "copperiuddetox."

"That group was a godsend," said Finan, who has gone almost one year without an episode since removing her IUD. "They understood what I was going through. I felt like I was reading a diary. I thought: This woman is me!"

The online discussion group included more than 600 women who shared their experiences with their copper IUDs. All mentioned similar symptoms, the same ones Finan had been fighting for weeks. She remembered thinking that it couldn’t just be a coincidence.

The group members — mostly from the U.S. and Europe — share a belief that the copper contained in their birth-control device somehow made them sick. The most common side effects mentioned in their posts are panic attacks, depression, chronic fatigue and hair loss, according to the group founder Florencia Kot Hansen, who lives in Buenos Aires, Argentina.

Many in the forum had their IUDs taken out and afterwards felt better.

Copperiuddetox now has almost 700 members and there are similar forums online for women who turn to them after finding no valid scientific explanation for their symptoms that they suspect are being caused by their contraceptive device.

Still, medical experts remain skeptical. "Just because something follows something else in time it doesn’t in any way imply they’re causally related," said David Grimes, a clinical professor at the University of South Carolina’s department of obstetrics and gynecology. "There are always rafts of complaints about the side effects of both birth control pills and IUDs, and most of them are bogus," he said in a phone interview.

Most family planning experts as well as gynecologists and medical researchers believe that the amount of copper contained in a copper-releasing device is so tiny that it cannot harm its users, and that just a very small percentage ends up in the bloodstream.

Copper Levels Checked in 1994 Study

In 1994, a study by researchers at the University of Bergen, Norway, found that the copper IUD does not cause any change in copper levels in the blood.

The researchers, who used techniques including microscopic observation and other types of measurement, observed increased copper levels in the lining of the uterus and in the fallopian tubes where fertilization occurs. The finding only confirmed the contraceptive function of the metal.

More recently, a group of researchers at the Universidad Nacional Autónoma de México in Mexico City also studied the effects of the metal contained in the copper IUD on the blood levels of some Mexican users. Although the 2005 study found that the levels of women who use the IUD are higher, it didn’t reach any conclusion on toxicity. "Further research should evaluate if the observed levels are associated to toxic effects with the general population or special groups," the authors said in the study.

In the U.S., the only available copper-releasing IUD is called ParaGard and is produced by Teva Pharmaceuticals, an Israeli company that acquired the product in 2005. Its contraceptive function is based on copper’s spermicide action, and is an alternative to hormone-releasing devices like Bayer HealthCare Pharmaceuticals’ Mirena and Skyla.

Teva’s representative in the U.S. said that the company has never received any adverse report regarding copper in ParaGard.

Gynecologists usually remove the IUD as soon as a patient asks. However, they are unlikely to blame the copper content as the direct cause of their patients’ symptoms.

"There is no such thing as copper toxicity with an IUD," said Susan Rubin, an associate professor in the department of family and social medicine at Albert Einstein College of Medicine in New York.

Doctors typically don’t recommend the contraceptive to women who normally suffer from heavy menstrual bleeding, have a sexually transmitted disease or have a genetic disorder known as Wilson’s disease, which affects the body’s ability to metabolize copper.

Still others believe that studies are not conclusive. Research on copper toxicity remains "surprisingly sparse," said Terry Gordon, a professor at New York University’s department of environmental medicine.

Diet Main Copper Source

Diet is the primary source of the intake of copper. Foods like beef, other meats, seeds, cocoa and shellfish are particularly rich in copper, the National Nutrient Database shows.

Exposure also occurs through inhalation and dermal contact with air, water or soil that contain the mineral.

The people most concerned about the concept of copper toxicity are nutritionists and researchers who study the effects of minerals in the body. Many of them are antagonized by medical conclusions that reject the possibility that the mineral can cause hormonal or psychological disorders.

"The medical profession is never, ever going to be interested in that because there’s no drug that you can use (to cure it)," said Theresa Vernon, a nutrition consultant in Santa Rosa, Calif. Like her other colleagues, Vernon believes that a nutritional balancing treatment is the only remedy to copper toxicity. A hair test is the best way to detect mineral imbalances in the body.

She agrees with scientists and medical doctors that the small amount of copper contained in IUDs does not harm women. Those who claim to suffer from the side effects of copper were already "copper toxic" before starting to use the IUD, she said.

That is why the vast majority of women who use the copper-releasing contraceptive do not suffer from those symptoms.

To cure the side effects of excess copper in her body, Victoria Holmberg, who is also a member of the Yahoo group copperiuddetox, is considering undergoing Vernon’s long-term nutritional balancing treatment, which involves supplements and aims to restore the body’s ability to excrete copper.

Holmberg, a 41-year-old native of Sweden, works for a hedge fund in New York and has a master’s degree in medical anthropology. Like Finan, she became interested in theories about copper toxicity when she began to suffer from symptoms she believed were directly related to her copper IUD.

Holmberg began using the contraceptive six months after the birth of her son Lucas. She opted for the copper device specifically because she knew copper is a natural element and the amount contained in the IUD is small. Holmberg remembered that at first she was very happy with her choice. But a few months after insertion she began suffering from anxiety attacks, exhaustion and bloating; all new to her.

None of her medical tests showed anything wrong, but when the symptoms became unbearable she decided to have the IUD removed.

That’s when she saw the copperiuddetox online group. After reading about other women’s experiences, Holmberg became convinced that the cause of her problems was "definitely" the contraceptive. Her gynecologist recognized only the very heavy menstrual bleeding as a possible side effect of the IUD.

Only four months after the IUD‘s removal Holmberg began to heal, she said.

Space for Doubts, Frustration

When Kot Hansen founded the copperiuddetox group in 2012, she wanted to offer other women a forum to discuss their doubts and frustration over their medical doctors’ conclusions.

Like other members, Kot Hansen experienced "mind fogginess," panic attacks and a heavy form of anxiety only after she began using a copper-releasing IUD. She didn’t use ParaGard, but Bayer’s Nova-T.

"Doctors tell you ‘it can’t be the IUD but if you want I can remove it.’ So it’s difficult because you need to take another direction from what science says and we live in an era where science is the big truth," she said.

Like her, women who cannot find a scientific solution end up considering theories on nutrition and alternative treatments as a possible remedy to their psychological and physical distress.

Many of them are drawn to online forums after they search for a possible relationship between "copper IUD" and "depression." Theories about copper toxicity are the first to pop up with a simple search on the Internet. Those theories instill the idea that the IUD may be the cause of the women’s symptoms, and many opt for its removal.

"I take everything with a grain of salt," said Holmberg. Her studies in medical anthropology have trained her to be critical of scientific theories, she said. She still doesn’t know if copper toxicity is "true" but considers it worth taking into consideration.

The copper IUD is still one of the least popular birth control methods. Only about 6 percent of American women use IUDs today. But researchers expect to see an upward trend. The expectation is in line with recent studies that have found a sevenfold increase in the use of IUDs from 2006 to 2010, as the Centers for Disease Control and Prevention’s National Center for Health Statistics reported in 2012.

From the early 2000s, the use of both copper and hormonal contraceptive devices has been "skyrocketing," said Katherine Rivlin, a family planning fellow at Columbia University Medical Center. In particular the copper-releasing IUD is believed to be one of the most effective reversible birth-control methods, she said.

In the 1970s an IUD called the Dalkon Shield became infamous for causing infections and infertility. It turned out that it wasn’t the materials in the IUD that wreaked havoc on women, but instead its flawed design because the string in the device facilitated bacterial infections.

But few young women are aware of that tainted history and now consider IUDs as a safe, long-term contraceptive option.

Still, in the past doctors have been reluctant to recommend the IUD to adolescents because they were concerned of complications including ectopic pregnancy and pelvic inflammatory disease.

Unsubstantiated Concerns

But in 2013, a study by the University of Texas’s Center for Interdisciplinary Research in Women’s Health found that the concern was unsubstantiated, deeming IUDs "appropriate" for any age groups.

The same study, however, suggested a hormone-releasing device as "a better choice" for teenagers than the copper IUD "as a result of lower odds of complications, discontinuation and failure."

Each year less than 1-in-100 women who use an IUD will get pregnant, compared to an average of 6 to 12 for every 100 women who take the pill, and 18 or more for condom users, according to the Centers for Disease Control and Prevention.

Those numbers are reassuring for most of the typical copper IUD users: Women who are wary of hormonal treatments, have a partner and don’t plan to have children for at least one year after insertion.

However, a small number of women such as Finan, Holmberg and Kot Hansen still have doubts about the effects the contraceptive had on their bodies. Their hope is that some day scientists will turn their attention to patients like them and study their symptoms.

About two months after her first panic attack, Finan finally decided to have the contraceptive removed. Her blood had tested negative for copper but she decided to remove the IUD. A few weeks later, she consulted with a nutritionist in Rhode Island and sent a sample of her hair to Analytical Research Labs. Unlike hair, blood is a late indicator of excess copper, according to experts in nutritional balancing.

When the white and blue booklet with the results of the hair test came in, they showed that her calcium-potassium ratio was 40:1, 10 times higher than what nutritionists consider ideal.

"Such a high calcium-potassium ratio is usually associated with copper toxicity," said Rick Malter, a psychologist who wrote a report about the relationship between copper toxicity and psychological disorders.

Depression and fatigue are common symptoms, Malter said.

To cure her mineral imbalances, Finan’s nutritionist recommended some supplements and a detoxing diet that was mostly based on water and vegetables, and "a lot of common sense," she said.

Finan isn’t yet quite sure what triggered the panic attacks and chronic fatigue. But the fact that those symptoms ended shortly after she had the IUD removed makes her think they are related.

She’s left with a sense of betrayal by the medical system. "I know that our symptoms are vague and can be attributed to other factors," said Finan. "But the lack of knowledge is frustrating."