Hemopause

hemopause = when menopause meets hemochromatosis

Everyone dealing with menopause or perimenopause should be aware of a syndrome dubbed hemopause. This occurs when menopause or other factors cause a cessation of menstruation in people with a genetic condition called hereditary hemochromatosis or HH (also known in some countries as genetic haemochromatosis or GH).

If undiagnosed and untreated, HH/GH can cause toxic levels of iron to accumulate in your body, a potentially life-threatening problem known as iron overload. Unfortunately, some menopause symptoms—like night sweats, hot flashes, skin changes, and irregular periods—overlap those of HH/GH, so doctors can miss cases of HH/GH in patients experiencing menopause.

(Other serious conditions that can be confused with/by menopause include Giant Cell Arteritis and Dementia.)

Myths and facts about hemochromatosis (HH/GH)

Sadly, too many doctors lack detailed current knowledge of hereditary hemochromatosis. Some still think it's "mainly a man's condition" when in fact it is not. Diagnosis of hereditary hemochromatosis is also hampered by another myth: "it's a rare condition." (No it's not.)

HH/GH is surprisingly common in some populations, particularly those with "Celtic" genes, for example, 1 in 83 people in Ireland. and 1 in 150 in England. In America, more than a million people may have hereditary hemochromatosis. It is the most common genetic condition in people of Northern European descent but can also affect people who do not self-identify as Northern European.

Okay, but what has this got to do with menopause?

It's all about iron, blood, and bleeding. Our bodies need iron, but too much iron can cause problems. Anyone with the hemochromatosis defect in their genes is at risk of absorbing too much iron which leads to iron overload. If this is not quickly diagnosed and treated, the results can be very serious for your health, causing joint pain, chronic fatigue, loss of libido, diabetes, and damage to the liver, pancreas, heart, brain, and other soft tissue.

Whenever blood leaves your body it takes some iron with it. So the primary treatment for iron overload is to draw blood (variously referred to as phlebotomy, venesection, blood donation). The good news is that blood loss during the menstrual cycle provides a natural defense against excess iron buildup due to hereditary hemochromatosis.

The bad news is that periods may mask or postpone the symptoms of hemochromatosis, preventing prompt diagnosis and treatment. So, if you have undiagnosed hemochromatosis and your periods stop, there is a risk that iron overloading could begin. If this does happen, there is a risk that the symptoms it produces will be dismissed by doctors as temporary side-effects of menopause.

Bear in mind that some increase in iron after menopause is normal. This further complicates diagnosis; however, if you already know that you have hereditary hemochromatosis—through genetic testing which is widely available—you will know to pay close attention to your post-menopausal iron levels.

The good news about hemopause

Fortunately, there are two simple steps that will indicate whether or not you are at risk of iron overload due to hereditary hemochromatosis:

A blood test: to check if you have excess iron in your system.
A genetic test: to see if you have the hemochromatosis gene mutations.

If your menstrual cycle has stopped, or seems to be trending in that direction, tell your doctor you want a blood test (to check for fasting serum iron, total iron binding capacity, and serum ferritin). If your results are in the normal range, that is good news. But keep track of those numbers by having them checked, at least annually.

Tip: make sure you question any results that your doctor describes as "just a bit on the high side, but nothing to worry about." Ask what range is considered normal for your gender (for serum ferritin this seems to vary regionally, but 200 µ/l is widely considered the level at which women should be concerned).

If your iron numbers are higher than the normal range you should ask your doctor for the HFE gene test. This will determine whether or not you have hereditary hemochromatosis. In the meantime, you and your doctor can take steps to lower your iron numbers, specifically the ferritin number. This can often be done through a series of blood donations and simple changes to diet and lifestyle.

Here are four resources that can help you, and your doctor, better understand and respond to your condition:

Man-made medicine, and other complications

Unfortunately, life can be even more complicated than the last few paragraphs may suggest. Some of those complications are addressed in the rest of this article. But the following needs to be acknowledged up front:

As with most matters of human health, the research around hemochromatosis has been dominated by men, working from a male perspective. Documenting the many harms inherent in excessively patriarchal medicine is beyond the scope of this website; but chances are, if you're already dealing with menopause or perimenopause, you're already aware of this problem. (For more on gender bias in healthcare see this article and the book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.)

So yes, the impact of hemochromatosis on women is under-researched, and thus downplayed by many doctors. This adds to the risk factors for hemopause, a term that does not yet exist, it should be noted, in any official medical discourse, despite the fact that it is definitely is a medical thing, a thing that causes women harm.

How Hemochromatosis met Menopause

Hopefully, the information on this site can help prevent hemopause harming your health or that of a loved one. To be forewarned is the key, because untreated iron overload due to hereditary hemochromatosis can do serious damage, causing disability and even death. The following diagram may help you visualize this:

Fortunately, it is cheap to treat hereditary hemochromatosis and patients may not suffer lasting damage if is detected and addressed early enough. However, if not diagnosed early and treated properly, HH/HG can go on to cause serious harm, some of which may be irreversible.

While the above is true for everyone, the diagnosis of hemochromatosis can—as discussed above—get complicated when menopause is involved. I first became aware of this through the experience of my partner, Chey Cobb (she has given me her permission to share her story—you can check with her on Twitter @Chey_Cobb).

Chey's body started loading iron when she was in her early forties, but doctors did not diagnose her hereditary hemochromatosis until she was 55. At that point she was extremely ill and had been unable to work for three years. Her body had already suffered serious damage.

In 2010, two years after Chey's HH/GH diagnosis, I created a website to raise awareness of this under-diagnosed condition. The site is called Celtic Curse after an old name for HH/GH, derived from its connection to Celtic genes. (Another old name is Bronze Diabetes: HH/GH can produce a tan-like skin discoloration and cause diabetes).

Through that website, and the Fight Hemochromatosis page I started on Facebook, I was able share what I was learning through my research efforts. These included getting involved with the Iron Disorders Institute, a US-based non-profit organization that supports victims of hereditary hemochromatosis. I attended the institute's annual conference. I also went to meetings on blood-related disorders at the National Institutes of Health in Maryland.

Through these endeavors, and the feedback I received from visitors to the Facebook page and Celtic Curse website, I encountered many women who had experienced the same problems as my partner: doctors dismissing the symptoms of hemochromatosis as normal manifestations of menopause. I realized that this phenomenon was so common it needed a name, so I called it: hemopause.

Defining hemopause

We can define hemopause as a syndrome which afflicts women entering menopause with undiagnosed hereditary hemochromatosis (HH/GH). There are seven main elements of hemopause:

Women with HH/GH may not process iron properly which can lead to toxic iron accumulation.
Regular blood loss is the best known means of preventing/reversing the toxic iron accumulation caused by HH/GH.
The regular blood loss that most women have experienced since puberty can both mask and guard against HH/GH.
Menopause slows and then stops the protective blood loss and, because some increase in iron is common at menopause, this can lead doctors to discount increases due to HH/GH.
If you have the genetic defect that causes HH/GH, the onset of menopause may cause excess iron accumulation to damage your health.
Common symptoms of HH/GH include: joint pain; chronic fatigue; liver and heart problems; pancreas damage; thyroid and adrenal issues; diabetes; loss of libido; depression; skin rashes; orange or grey skin.
If you are menopausal or perimenopausal, your doctor may miss or dismiss these symptoms of permanent iron damage as temporary effects of menopause, and so the damage continues.

But my doctor says it's menopause

Item seven is perhaps the most important one. Quite frankly my wife and I have lost track of the number of conversations we've had with women of a certain age that go like this:

I started having joint pain. I lost interest in sex and was constantly fatigued. I talked to my doctor and he said it was “the change” and a lot of women experience these symptoms during menopause. He said things would improve, but they haven’t. In fact, things seem to be getting worse, but when I tell the doctor he says it may be psychological…

Note that having a doctor who is not a ‘he’ is no guarantee that you will have a different conversation. Doctors of both genders tend to be massively under-informed about HH/GH in relation to the prevalence of this genetic condition (there's actually a scientific paper that says this). Common misconceptions that doctors have about HH include the following:

It rarely affects women: Wrong! It might have seemed like that when fewer women lived beyond menopause (and we have met younger women who live with this condition).
It is only present if you have skin discoloration: Wrong! Although bronze or gray discoloration is one possible symptom, many patients don't get that symptom.
It only affects people of Irish descent: Wrong! Although HH/GH is highly prevalent in Ireland, having no known Celtic antecedents does not make you immune. People who self-identify as African American or Hispanic can have HH/GH.
It's no big deal because you can cure it with phlebotomy: Wrong! There is no cure, it's genetic. While removing blood may alleviate some symptoms or iron overload, some damage may be irreversible.
It is rare these days: Wrong! It remains the most common genetic defect in the USA-UK-Canada-Australia that can cause death if undiagnosed, and it continues to be passed from parents to children.

Back to the good news

There is a cheap and simple blood test for iron levels and it should be routine at the first signs of menopause (download this fact sheet that the Iron Disorders Institute publishes as a PDF). There is also a genetic test that you can take before, during, or after menopause, to see if you are susceptible to iron overload due to HH/GH.

Hopefully, the medical community and society at large will soon weigh those simple and inexpensive steps against the costly consequences of failure to diagnose iron imbalance until it is too late. When undiagnosed and untreated, HH/GH can cause unnecessary suffering and premature death from liver cancer, heart disease, stroke, no to mention disabling joint pain and chronic fatigue, vision loss, diabetes, and depression (not all of these symptoms can be reversed by treatment after diagnosis).

Ironically, hemochromatosis can cause early onset of menopause. That is yet another reason that, as soon as anyone starts to experience any signs of menopause, they should have their iron levels checked and, if there is a family history of liver and/or heart disease, they should seriously consider a genetic test for hereditary hemochromatosis.

If you found this web page helpful, please share it as widely as you can. We need to raise awareness of both menopause and hemochromatosis, because the latter is making the former a matter of life and death for too many people.

Disclaimer

This website contains general information about medical conditions and treatments. This information is not medical advice, and should not be treated as such. For more see Disclaimer.

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