Hemopause

hemopause = when menopause meets hemochromatosis

Everyone dealing with menopause or perimenopause should be aware of a syndrome dubbed hemopause. This occurs when menopause happens to people with a genetic condition called hemochromatosis (also spelled haemochromatosis).

If not diagnosed and treated, hemochromatosis can cause toxic levels of iron to accumulate in your body. Unfortunately, there is some overlap in symptoms between menopause and hemochromatosis. This can lead doctors to miss signs of hemochromatosis if you are experiencing menopause or perimenopause.

Sadly, too many doctors lack detailed knowledge of hereditary hemochromatosis and some think it is rare or "mainly a man's condition," when in fact it is not. Hereditary hemochromatosis is surprisingly common in some populations, particularly those with "Celtic" genes (for example, 1 in 83 people in Ireland). More than a million Americans may be at risk of hemochromatosis and it is the most common genetic condition in people of European descent.

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

It's all about iron, blood, and bleeding. Anyone with the hemochromatosis defect in their genes is at risk of absorbing too much iron which leads to a condition known as iron overload. If this is not quickly diagnosed and treated, the results can be very serious for your health (symptoms include joint pain, chronic fatigue, loss of libido, 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 hemochromatosis.

The bad news is that periods may mask or postpone the symptoms of iron overload, preventing diagnosis and treatment of the underlying hemochromatosis. Consequently, if you have undiagnosed hemochromatosis and your periods stop, then 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.

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:

  1. A blood test: to check if you have excess iron in your system.

  2. 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 refers to as "a bit on the high side, but nothing to worry about."

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 three documents that you can download (in PDF format) to help with these steps:

Complications

Unfortunately, life can be more complicated than the last few paragraphs might 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 Patriarchal Medicine is beyond the scope of this website, but chances are, if you're already dealing with menopause or perimenopause, you already know a lot about them. (For more on this see 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 factor of hemopause, a term that does not yet exist, it should be noted, in any official medical discourse, despite that fact that it is definitely is a medical thing, a thing that causes women harm.

This website was put together to even the odds by arming you with information about the symptoms and issues arising from hemochromatosis during perimenopause and menopause.

The information on this site can help you prevent hemopause messing up 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:

How Hemochromatosis met Menopause

Hereditary hemochromatosis is a condition that can affect people of all genders and ages, but fortunately it is cheap to treat and may do very little damage if detected and addressed early enough. However, if not diagnosed early and treated properly, hemochromatosis can do serious damage, some of which may be irreversible.

While this is true for everyone, menstruation complicates the diagnosis of hemochromatosis. I first became aware of this because of what happened to 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 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 hemochromatosis diagnosis, I created a website to raise awareness of hemochromatosis. That site, and the Fight Hemochromatosis page that I started on Facebook, were two ways for me to share what I had learned through my own research. This research included getting involved with a non-profit organization that supports victims of hemochromatosis: the Iron Disorders Institute. I attended the institute's annual conference and several meetings on blood-related conditions at the National Institutes of Health in Maryland.

Through these endeavors, including the feedback that I received on the Facebook page and the Celtic Curse website, I encountered many women who had experienced the same problems as my partner: doctors dismissed the symptoms of hemochromatosis as 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). There are seven main elements of hemopause:

  1. Women with HH may not process iron properly which can lead to toxic iron accumulation.

  2. Regular blood loss is the best known means of preventing/reversing the toxic iron accumulation caused by HH.

  3. The regular blood loss that most women have experienced since puberty can both mask and guard against HH.

  4. Menopause slows and then stops the protective blood loss.

  5. If you have the genetic defect that causes HH, the onset of menopause may cause iron accumulation to damage your health.

  6. Common symptoms of HH 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.

  7. 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.

Your Doctor Will Says It's Menopause

Let’s take the seventh element first because that’s the way hemopause tends to come up in conversation. 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. The doctor says a lot of it is in my head…

Note that having a doctor who is a ‘she’ and 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 in relation to the prevalence of this genetic condition (there's actually a scientific paper that says this).

Few doctors even know how often HH occurs in the population. In fact, it the most common genetic disease in North America. About 1 in 300 have the genetic defect that can give rise to iron overload. Among Caucasians the prevalence is 1 in 200. (In Ireland it is greater than 1 in 100, which gives rise to hereditary hemochromatosis being referred to as Celtic Curse.)

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, but we have met many young 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 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.

  • 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, some damage may be irreversible.

  • It is rare these days: Wrong! It remains the most common genetic defect in US-UK-Canada-Australia that can cause death if undiagnosed, and it continues to be passed from parents to children.

To be fair, there is some overlap between the effects produced by menopause and the symptoms of the iron overloading caused by hereditary hemochromatosis (which may be referred to as genetic haemochromatosis outside of North America). The problem is that too few doctors are even considering hemochromatosis when treating menopausal women. This needs to change.

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). Medical history should be factored in when consulting your doctor about menopause. There is also a genetic test that you can take before, during, or after menopause, to see if you are susceptible to this problem.

We think the medical community and society at large must begin weighing those simple and inexpensive steps against the costly consequences of failure to diagnose iron imbalance until it is too late: unnecessary suffering and premature death from liver cancer, heart disease, stroke, plus 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 any woman starts to experience any signs of menopause, she should have her iron levels checked and, if there is a family history of liver and/or heart disease, she should seriously consider a genetic test for hereditary hemochromatosis.

We all need to do what we can to raise awareness of both menopause and hemochromatosis, because the latter is making the former a matter of life and death for too many women.

Resources

Links to additional information about menopause: you can find a recent listing of eight menopause support groups in this article. One group that seems particularly active, especially in the UK, is Menopause Cafe. (Note that in the UK you will hear people say "the menopause" rather than just menopause.)

Links to genetic testing for hemochromatosis: To find out if you have the hemochromatosis gene (HFE) you need a genetic test. You can ask your doctor for this test although they may ask for justification (family history, Irish ancestry, high iron levels). If your doctor is not willing, or your insurance won't pay, you can buy a test privately. This can be done through the mail at home, for example with the 23andMe Health + Ancestry package. This gives you a lot of other interesting health data, and at a reasonable price compared to HFE-only tests like this one. In the UK there is a reasonably priced HFE test available from the Haemochromatosis UK charity.

Links to additional information about hemochromatosis: A growing number of awareness and support organizations for people dealing with hemochromatosis can be found around the world. Here are just a few of them:

Disclaimer

Please note that I, Stephen Cobb, am solely responsible for the content of this website, and I am not a doctor. This website contains general information about medical conditions and treatments. The information is not advice, and should not be treated as such.

You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.

The medical information on this website is provided without any representations or warranties, express or implied. I make no representations or warranties in relation to the medical information on this website. Without prejudice to the generality of the foregoing paragraph, I do not warrant that the medical information on this website will be constantly available, or available at all; or that the medical information on this website is complete, true, accurate, up-to-date, or non-misleading.