At about the age of 14, Lily* started to feel tired a lot of the time. She would regularly oversleep and lacked the energy to do basic things. It was also the time she started menstruating and having heavy periods.
At 25, Lily was diagnosed with anxiety and depression, and prescribed antidepressants for her symptoms. While they helped her, she also had to put up with the side effects of memory loss, low sex drive and weight gain.
Another decade later, she went to a GP who asked her more questions than any of the previous doctors and ordered a blood test. They revealed her iron levels were the lowest they had ever been, bordering on anaemia. The doctor recommended an iron infusion.
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“The week after, I just felt so wildly different,” she said.
After decades of experiencing symptoms of tiredness and feeling overwhelmed, “you start to identify with that, as just who you are”.
Lily is among one in five Australian women who have an iron disorder, and many, like her, live for years with debilitating, untreated symptoms.
The scale of iron disorder misdiagnoses is not well understood, and there is a lack of research in the area.
One study of more than 1,000 Swiss women with iron disorders found 35% were initially misdiagnosed and treated for the wrong condition, most commonly depression.
Dr Nicole Jenkins, a scientist at the Florey Institute of Neuroscience and Mental Health, says such misdiagnoses are not surprising considering symptoms like feeling down or finding it hard to get out of bed in the morning are common between iron and mood disorders.
Iron is necessary for the production of dopamine, which is often called the “feelgood chemical”, so if iron levels are low, dopamine production tends to be low.
“Depression and iron deficiency can often occur at the same time,” says Jenkins, who is working on a new type of test to better detect iron disorders. “But if you’re getting treatment for depression and you’re not getting treatment for your iron deficiency, then the treatment for depression may not be as effective.”
Jenkins knows first-hand how hard it is to be diagnosed with an iron disorder. Seven years after she first developed symptoms of extreme tiredness she was finally diagnosed correctly and treated.
Having spent her career researching iron balance in ageing, Jenkins felt “a bit silly” that she hadn’t realised low iron was to blame for her own symptoms, which included feeling tired all the time and, eventually, an irregular heart beat.
But for many years, her blood test results had been normal.
As she looked more into the issue, she discovered why. Jenkins also had endometriosis, which not only caused the heavy periods leading to low iron, but was also the reason blood tests did not pick up her iron deficiency until her levels were dangerously low. Some chronic health conditions, including endometriosis, can distort the results of tests for iron levels.
Measuring the bottles, not the water
At the moment, the most accurate method for testing iron deficiency is to measure the protein that stores the iron, known as ferritin.
Jenkins says we can imagine our iron is like water inside tiny bottles. “The current test will tell us how many water bottles we have,” she says, “but they don’t tell you how much water is in them.”
The problem is that while some “bottles” are full of “water”, some are empty, she says.
Another issue is that at times of inflammation – which can be caused by an illness such as a common cold, as well as chronic health conditions – ferritin levels will go up independently of their iron levels.
This means ferritin-based iron tests can be inaccurate, particularly in people with chronic health conditions, and result in misdiagnosis, as well as delayed diagnosis.
Not just an issue of diagnosis
Lily’s problem did not lie in her diagnosis, as blood tests did pick up her low iron levels. But her body did not readily absorb the iron tablets she was recommended. They did not make a difference in her energy levels and gave her bad side effects, including cramps.
Lily stopped taking antidepressants after her iron infusion, but her GP prescribed her the birth control pill to manage her heavy periods and her anxiety spiked again.
“Everything is so intertwined, it can be really hard to make sense of what is low iron, what’s anxiety, what’s depression, what’s hormonal,” Lily says.
A new test
Jenkins is also CEO and cofounder of FeBI Technologies, a spin-out company of the Florey Insitute and the University of Melbourne, which is developing a world-first test that could measure iron itself – not ferritin.
She says the new blood test could not only help the issues of misdiagnosis and delayed diagnosis of iron disorders, but could also help the management of iron disorders, as doctors could better understand how patients are responding to iron tablets or infusions.
The new test uses quantum sensors based on nanodiamonds – tiny diamonds used in car polish which are not expensive but contain properties that react to a magnetic signal.
The iron within ferritin also has a magnetic signal, and so these sensors react when they’re in the presence of iron, Jenkins says.
“We’re measuring how much these sensors change, and that tells us how much iron is in the ferritin.”
The federal government’s Critical Technologies Challenge Program has provided almost half a million dollars to fund prototype development with Sunrise Health Service Aboriginal Corporation in Katherine, in the Northern Territory.
The six-month trial beginning in August will involve speaking to communities about how the test can be made accessible, affordable and able to operate in any environment.
Jenkins hopes the test will be widely available to help people by 2028.
Prof Derek Abbott, an expert in quantum systems at the University of Adelaide, who was not involved in the project, said using the quantum sensors based on the nanodiamonds to detect iron in blood is “entirely feasible”.
“Iron deficiency is indeed a significant global problem. To be able to do an accurate on-the-spot measurement would be a Godsend,” Abbott said.
*Name changed to protect medical information.