Menopause or Hemopause? The biological irony of a medical misdiagnosis

by Stephen Cobb on October 17, 2019

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My name is Stephen Cobb. I’m a man in his sixties with a message about menopause; actually, two messages, one general, the other specific. The general message is that menopause needs to be talked about a lot more than it is, by women and men, young and old.

Why? Because society is riddled with ignorance and misperceptions about what menopause is and how we should be dealing with it, in the workplace, within relationships, and in healthcare. Such ignorance and misperceptions can lead to pain and suffering – physical and psychological – pain that can be avoided or reduced with greater awareness.

Fortunately, some great menopause awareness campaigns are being conducted around the world. For example, I have been tweeting for a while now about Menopause Café, a very cool organization in the UK that is aiming to get “the whole world talking about the menopause”. (Brits sometime put “the” in front of menopause.) Check out their guide to setting up one of these events where “people, often strangers, gather to eat cake, drink tea and discuss menopause.”

In fact, today, October 18, is World Menopause Day. And that brings me to my specific message about menopause, a warning that menopause can lead to hemopause. This is a life-threatening situation where menopause masks the symptoms of the potentially deadly genetic condition known as hereditary hemochromatosis or HH, sometimes referred to as Celtic Curse because it is particularly prevalent in people of Irish and Scottish descent.

Hemochromatosis disrupts the body’s normal handling of iron, leading to a potentially fatal condition called iron overload, the symptoms of which include debilitating fatigue, joint pain, diabetes, and cirrhosis of the liver (even in the absence of alcohol consumption). Here is a fairly blunt account of the symptoms of HH.

Men and women are equally susceptible to hereditary hemochromatosis, but it is more frequently detected in men because, before menopause, the menstrual cycle gives women a natural defense against excess iron buildup: that monthly loss of blood removes iron from the body. The most common treatment for iron overload is blood donation, blood-letting, or phlebotomy.

Can you see where this is going? Periods offer some protection against iron accumulation in women with hemochromatosis, but menopause ends that protection. For women who have hemochromatosis but don’t know it, the symptoms of iron overloading may well start to kick in at the same time as the symptoms and medical issues associated with menopause. And guess how well equipped the average doctor is to figure that out?

If you or a loved one has been through menopause you know that far too many doctors are capable of dismissing all manner of symptoms in women of a certain age as: “just part of the change.” And far too often the doctor’s advice is “don’t worry, it will pass” and “just deal with it, other women do.” This is both pathetic and potentially deadly. Unless iron overload is countered with appropriate treatment it can cause pain, disability, and death.

Fortunately, you can avoid becoming a victim of hemopause by getting your iron levels checked with inexpensive blood tests. Tell your doctor you want to know your serum transferrin saturation – the amount of iron bound to the protein transferrin that carries iron in your blood, and your serum ferritin – an indicator of the amount of iron stored in your liver.

If the levels are high your doctor should investigate further (high is often stated as transferrin saturation > 45% and serum ferritin > 200 ng/mL for women, > 300 ng/mL for men). If your doctor does not seem concerned, to try educate them, or get a second opinion.

While I am not a doctor, I’ve spent a lot of time studying this problem and I think that any woman in her forties who is experiencing any of the symptoms of hemochromatosis – or haemochromatosis as they spell in the UK – would be well-advised get her iron levels tested now, and re-checked once a year from then on.

Hopefully, as women around the world push for greater understanding and awareness of menopause, fewer doctors will dismiss everything that ails their menopausal patients as symptoms of “the change.” In the meantime, bear hemopause in mind. While hemochromatosis may affect “only” one in 250 women, even one woman suffering from undiagnosed iron overload is one too many.

(Photo by Trust “Tru” Katsande on Unsplash)

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