Gaslit, dismissed and treated as hypochondriacs: The gender divide in iron deficiency

Iron-deficient and anaemic women are being gaslit and denied effective treatment, while pathology companies systematically report “normal” blood test results for females who would be diagnosed with iron deficiency if they were male.

Among the more than 2000 women who shared accounts of medical misogyny with this masthead were more than 50 women with debilitating iron deficiency or anaemia who were treated as hypochondriacs or had their symptoms dismissed by healthcare professionals, including one woman whose haemoglobin count was that of a traumatic car crash victim.

Other women described their heavy menstrual bleeding being written off as a normal, untreatable part of womanhood, and experiencing damaging delays in investigating serious underlying causes of their low iron. Iron is an essential mineral for organ function, from carrying oxygen in red blood cells, to immune and brain health.

Some of Australia’s biggest pathology providers have for years set a significantly lower benchmark for what they consider “normal” iron stores in females compared to males, leaving a huge proportion of iron-deficient women undiagnosed and untreated.

“The fact that there is a difference in what is considered iron-deficient between men and women is insane,” Professor Nada Hamad, a Sydney haematologist and clinician researcher, said.

“Can you imagine how gaslit these women are when they are told that their iron level is normal, when, by definition, a man with the same results would have been diagnosed iron-deficient?” said obstetrician and gynaecologist Dr Talat Uppal, a leading international expert in heavy menstrual bleeding.

Following questions during this investigation, laboratory heads of pathology providers convened an emergency meeting, and those still upholding the “sexist practice” told this masthead that it would be overhauled.

Meanwhile, women with chronically depleted iron stores are offered no alternative to over-the-counter iron tablets, despite reporting brutal side effects, no improvements and pleading for iron infusions.

“I’ve got patients who have had untreated iron deficiency for years, then they wind up in emergency departments severely anaemic,” specialist haematologist Dr Lisa Clarke said.

“All because there are people in the healthcare system who truly don’t believe iron deficiency without anaemia in women is a problem.”

The women, doctors and experts are speaking not to blame individual healthcare professionals, but to expose entrenched, systemic gender bias in healthcare systems that can be traced back centuries, long before iron deficiency was believed to cause “hysteria” in women of the 16th century.

‘You have the blood count of a shark attack victim’

Abigail Rodwell had grown accustomed to being told by GPs not to worry about her fatigue, headaches and gastrointestinal symptoms.

“I can’t tell you how many times doctors have told me: you run a business, you’re studying your master’s degree, your doctorate, and you have two little children. You’re fine. Just rest,” Rodwell said.

“I’m pretty confident that men who work and have kids don’t hear that. They hear: how can we fix you?”

Rodwell got on with life until one evening in 2016.

“I was vomiting, I was struggling to breathe, and my whole body was cramping up,” she said.

Rodwell recalls screaming in pain as the paramedics carried her into the emergency department.

“The head nurse yelled at me, ‘I don’t know if you’re on drugs or something, but you will stop screaming’,” she said.

The mother of two was admitted for suspected influenza, but her blood test results showed her haemoglobin was 56 grams per litre (g/L). Normal haemoglobin levels typically range from 115 to 165 g/L. Rodwell was severely anaemic.

Iron is essential to make haemoglobin – a protein in red blood cells that binds to oxygen and transports it around the body. It is critical for tissue and organ function. Without treatment, iron-deficiency anaemia can cause life-threatening complications, including heart failure.

The attending gastroenterologist assumed she had cancer, Rodwell said.

“After an endoscopy, the gastroenterologist just said, ‘You don’t have cancer’ and told me to see my GP. That was it. Consultation over.”

At her GP, she was scolded for not taking iron supplements, Rodwell recalled.

Rodwell had tried taking various forms of supplements for years, but she couldn’t tolerate the gastrointestinal side effects.

Over-the-counter oral iron is the first-line treatment for iron deficiency and can be an effective option. But 30 to 70 per cent of people can’t tolerate the gastrointestinal side effects, including nausea, diarrhoea, constipation, and heartburn.

“[My GP] was so curt and rude, I had to stop myself from crying,” Rodwell said.

Between 2018 and 2020, her health slowly deteriorated. She had a constant headache, extreme fatigue, weakness, dizziness, pale skin, cold hands and feet, a slightly swollen tongue and loss of appetite.

“I was crunching ice all the time,” Rodwell said, unaware that craving ice is a symptom of iron deficiency.

“I was just withering away, but I was still working. I would just take myself to the doctor, and the doctor would look at me and she wouldn’t be worried.”

In mid-2020, another blood test showed her haemoglobin was 53. Her GP sent her straight to hospital, where staff had prepared the resuscitation room.

“They said, ‘Do you know you could die at any second? You have the blood count of a car crash or shark victim’,” Rodwell recalled.

But she hadn’t had traumatic blood loss. It was her iron that had drained away.

Clarke was the haematologist assigned to Rodwell’s case. She said years of living with undiagnosed food intolerances had likely damaged Rodwell’s gastrointestinal tract, preventing her from absorbing iron from her food.

“Iron deficiency is so insidious,” Clarke said. “Abby had become used to functioning with low iron levels and subsequent anaemia until her haemoglobin finally dropped to critical levels.”

Clarke ordered a blood transfusion and two iron infusions.

“It was like I walked into sunshine from a dark room,” Rodwell said. “Everything, in hindsight, had been slower and more exhausting, both mentally and physically.”

The blood test that erases iron-deficient women

A contentious debate is playing out in clinics, laboratories and medical journals between clinicians and researchers, raising the alarm about untreated iron deficiency in women and their colleagues who don’t believe it’s an issue worth treating.

“It’s incredibly frustrating because iron is critical for multiple functions beyond haemoglobin and red blood cells,” Clarke said.

But iron deficiency alone can impair the body’s cellular energy production.

“Iron is also required for the production of our feel-good messaging in our brains – serotonin and dopamine, which is how iron deficiency can be linked to depressed mood,” Clarke said.

There is a vagueness to some signs of iron deficiency (brain fog, fatigue) that medicine is not well-equipped to decipher.

Symptoms can also include hair loss, headaches, easy bruising, restless leg syndrome, a weakened immune system, and an eating or craving of dirt, paper, and ice.

A blood test for ferritin – a protein that stores iron, mainly in the liver – is the most sensitive indicator of a person’s iron stores.

National guidelines by the Royal College of Pathologists Australia were updated in 2021 to define iron deficiency as a ferritin level below 30 micrograms per litre (μg/L) for adults, eliminating a long-standing sex bias that meant women needed to have significantly lower ferritin levels than males to be diagnosed. Some pathology services, including Laverty, 4cyte and NSW Health Pathology use the same.

But other pathology providers, as well as the Australian Red Cross LifeBlood, still define iron deficiency as below 15μg/L for women. The variation means that for women whose ferritin level falls in the no man’s land between 15 and 30μg/L, getting diagnosed (and having a chance of treating it) can depend on which pathology service draws her blood. It’s a global problem.

Estimates suggest between 25 and 50 per cent of iron-deficient women are missed using 15 μg/L as a cut-off.

“I am seeing woman after woman who tell me that their iron results are always normal,” said Uppal, Australia’s appointee to the International Federation of Gynaecology and Obstetrics Committee on Menstrual Disorders and Related Health Impacts.

“I say, ‘No, your ferritin is 18. You have been iron-deficient for years’.

“Using lower, inconsistent cut-offs for women only perpetuates gender-based inequity and delays care for a condition that is both common and treatable,” Uppal said. “It is one of the reasons women with heavy menstrual bleeding can suffer and not get timely medical care.”

Setting reference ranges is not an exact science. But pathology sector insiders said the decision to set a lower floor for women comes down to the concern that too many women would be diagnosed as iron-deficient.

Up to 34 per cent of Australian women of reproductive age are iron-deficient – almost tenfold the proportion of iron-deficient men (3.5 per cent), according to an analysis of ABS data.

“It’s sexist. There’s no way around it,” said one pathology service employee not authorised to speak publicly.

Hamad said, “people will say, well, the World Health Organisation used 15 μg/L as the lower threshold. But WHO uses 15 [μg/L] for all adults and has to cater for services operating in some very limited-resource countries, so why are pathology services cherry-picking 15 for women and 30 for men?”

Chief medical officer for major pathology provider Douglass Hanly Moir, Adjunct Professor Annabelle Farnsworth told this masthead that after months of discussion, its laboratories will stop using 15μg/L as the cut-off for females, and instead use 30μg/L for all adults from September.

“It is completely the right thing to do,” Farnsworth said.

A spokesperson for SydPath, which also uses the lower floor for females, said its ferritin range was under review and its ranges would be updated to align with the RCPA’s.

Lifeblood’s medical director of pathology services Dr James Daly said the service was in the planning stages of changing the lower ferritin threshold for female donors to 30μg/L.

Research analysing other markers of iron deficiency suggests that even 30μg/L is too low.

The gold standard (but invasive) test that involves using a blue stain to visualise iron stores in bone marrow indicates 50 to 100 μg/L is the “sweet spot”, Hamad said.

‘Is this just in my head?’

It would take almost two years, countless doctors’ appointments, and the intervention of her father before Kate Burns was diagnosed with the condition for which she had all the hallmarks. Iron deficiency was just the precursor.

Burns was a 21-year-old with a deep trust in healthcare professionals when she started to believe that she might be a hypochondriac.

She had intense, almost constant headaches, waves of fatigue and extreme dizziness.

“My reflux was so severe I couldn’t lie flat. I had to prop up one end of my bed with chunks of wood,” Burns said.

The talented lacrosse player who had travelled solo overseas could no longer stay awake for the train ride to her university, walk upstairs without feeling dizzy and breathless, or keep up with her coursework. She was in almost constant pain and had lost an alarming amount of weight from her already slight frame.

But when her CT scan came back clear, her doctor intimated that she was exaggerating her symptoms, Burns recalled.

She told two GPs that the medication they had prescribed for reflux wasn’t working after several weeks of persisting.

The first doctor told her that she was overreacting, the second diagnosed her with anxiety and suggested she take antianxiety medication.

“I just burst into tears,” Burns said. “I went away questioning my sense of reality.”

When her blood test results showed her ferritin level was 6μg/L, indicating iron deficiency, her doctor told her to take iron tablets, but they exacerbated her reflux and nausea, and caused severe gut pain, Burns said.

“I’d been so unwell for a year now, and no one was listening to me,” Burns said.

“I was this shell of a human being … I would describe how drastically my life had changed to doctors, and it didn’t make any difference.”

Research analysing the use of iron supplements shows that by the time clinicians tell women to take them it’s often too late.

“We know it’s poorly absorbed, so we advise them to take it on an empty stomach and every day. That just increases gastrointestinal side effects, reduces compliance and sets it up for failure,” Clarke said.

Meanwhile, some iron supplements marketed as causing fewer side effects don’t contain enough absorbable iron to be effective, Hamad said.

“This annoys me because it’s a waste of money, generally for women, and a form of financial toxicity,” she said.

Kate Burns’ father, Mark, recalls her asking: “Dad, is this just in my head?”

“I would say, ‘What are you talking about, Kate? No, you’re unwell, look at you’,” he said.

“Seeing her world crumble … as a father, it tore me to pieces.”

He described coming home one evening to find his daughter deeply distraught and in pain.

“I said, ‘That’s it. I’m coming with you to the doctor’,” he said. “We saw a new GP and I insisted on some blood tests.”

Her ferritin was again 6μg/L. Further tests confirmed coeliac disease – a common cause of iron deficiency. Her body was not absorbing iron, calcium and other essential nutrients from her food.

Burns’ GP told her to stop eating gluten, take iron tablets, and directed her to a coeliac disease information website.

She discovered on her own that she needed an endoscopy to confirm the coeliac diagnosis and a bone density scan to assess the damage.

It took Burns two years to convince a doctor to prescribe an iron infusion – the most effective treatment for replenishing iron stores.

“They would just push the iron supplements” that only exacerbated her symptoms, she said.

Mark Burns can’t help but wonder whether Kate could have been spared the ongoing anguish of multiple autoimmune conditions triggered by her untreated coeliac disease if her doctors had intervened earlier.

“She has lost so much in her life,” he said.

From iron flood to a pregnant pause

Heavy menstrual bleeding (HMB) is considered the leading cause of iron deficiency. Defined as excessive menstrual blood loss which interferes with the woman’s physical, emotional, social and/or material quality of life, occurring alone or with other symptoms, it affects about one in four women of reproductive age.

Every month, these women lose a flood of blood (and iron) that seeps through their clothes or multiple forms of sanitary products, and pass clots larger than a 50-cent coin.

Studies suggest up to 60 per cent of women with HMB have severe iron deficiency, and half have not seen a doctor about it. No underlying cause (such as polyps, fibroids, adenomyosis, uterine or blood disorders) is found in about half of the cases investigated.

“These are staggering statistics,” said Uppal, who is also co-vice president of the Bleed Better initiative that helps co-ordinate the International Heavy Menstrual Bleeding Day (May 11). It aims to destigmatise HMB and raise awareness about available treatments.

“This is clearly a huge unmet clinical need and a public health issue,” Uppal said of the underdiagnosed condition.

Iron infusion is recognised as the most effective treatment for replenishing iron. But using iron infusion to treat pregnant women without anaemia is a contentious issue among obstetricians and gynaecologists. A lack of robust research underpins this.

Estimates suggest as many as 70 per cent of pregnant women in their third trimester are iron-deficient. Pregnant women need an additional 1 gram of iron throughout their pregnancy.

“You have some obstetricians who underplay the role of iron deficiency and are only interested once the woman becomes anaemic, and screening for iron deficiency is not uniform,” Clarke said.

The reluctance to use iron infusions is “a historic hangover”, Hamad said, “from decades ago, when there were problems with preparations, including allergic reactions, and the culture carried through to today”.

Dr Nisha Khot, president-elect of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, said the vast majority of obstetricians and gynaecologists recognise iron deficiency and will treat it.

“[But] it’s very hard to tease out whether they are caused by iron deficiency or if they are feeling this way because they are pregnant,” Khot said.

The scarcity of access to infusions and the common side effects of oral iron supplements (particularly for pregnant women) make managing iron deficiency very challenging, she said.

“It’s an issue of rationing,” Khot said. “We can’t provide everyone with an iron infusion as and when they need it.

“Within public hospitals, you can often say: ‘yes, this pregnant person needs an iron infusion’, but there just isn’t the capacity to give them [one] in a timely manner in all cases.”

Clarke, Hamad and Uppal were involved in the development of an unendorsed consensus statement to address the issue of untreated iron deficiency in pregnancy.

Khot said most obstetricians would feel uncomfortable giving pregnant women an iron infusion after only four to six weeks of taking supplements.

Iron infusions come with a risk – though very rare – of anaphylactic reaction, she said, as well as skin staining (a brown iron mark if the cannula is incorrectly inserted).

“What we want is some clear guidance on how to diagnose and manage iron deficiency,” Khot said.

It all adds up

Iron infusions can also be prohibitively expensive. There is no Medicare subsidy. Patients pay $200 to $700 per treatment if they can’t get a referral to the limited public hospital infusion services.

At Dr Rebekah Hoffman’s general practice in Sydney, about 90 per cent of iron infusion patients are females, from teenagers through to pregnant and perimenopausal women.

“Most of our patients have heavy menstrual bleeding. They literally bleed out their iron every single month, so much so that their bodies are just not able to keep up,” said Hoffman, who is the NSW and ACT chair of the Royal Australian College of General Practitioners (RACGP).

Hoffman’s patients pay $200 to $300 out of pocket for an infusion every two to three years.

“That adds up,” she said. “There needs to be improved funding to cover iron infusions, whether that be for GPs, for hospitals, for outpatient care or for private hospitals.”

The RACGP has been lobbying the federal government to introduce a $200 rebate for iron infusions.

In response to questions from this masthead, Federal Health Minister Mark Butler said he had asked the Medical Services Advisory Committee to look at a Medicare item for iron infusions in general practice.

“The Albanese government is tackling sex and gender bias in the health system and improving health outcomes, particularly for women at greater risk of poor health,” Butler said in a statement.

“Women have asked government to take their healthcare seriously, and we have listened,” he said.

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