Menopause + Hemochromatosis = Hemopause (and women of a certain age are at risk)

by Stephen Cobb on February 25, 2018

Are you dealing with menopause, or the approach of menopause? Then this blog post is for you. Some women approaching menopause are at risk of absorbing too much iron, resulting in serious joint pain and damage to the liver, pancreas, heart, brain, and other soft tissue.

Why? Before menopause, the menstrual cycle gives women a natural defense against excess iron buildup; that monthly loss of blood removes iron from the body. However, this can mask a surprisingly common genetic disease called hemochromatosis in which the body’s normal handling of iron is disrupted, leading to a potentially fatal condition called iron overload.

Unfortunately, many doctors know very little about hereditary hemochromatosis (often called HH). That means the condition is under-diagnosed, so a lot of people suffer from HH without knowing it. In turn that means HH has a low profile in the media and public consciousness.

A few years ago HH got some attention when Tamra Barney, one of the Real Housewives of Orange County, found out that her son Ryan had hemochromatosis. However, it is hard to find high profile women who are known to be suffering from HH. Historically, the highest profile HH victim in the US is probably Ernest Hemingway (who committed suicide, but HH is really what killed Hemingway).

This blog post explains the under-reported connection between HH and menopause, and how women can defend against its potentially crippling effects.

What is Hemopause?

Without that natural monthly loss of blood, undiagnosed hemochromatosis can start causing damage that is hard to detect before it becomes irreversible. I know this because it happened to my wife. Her body started loading iron when she was in her early forties. Doctors did not diagnose it until she was 55 and extremely ill. (That was in 2008. In 2010, I created this website to raise awareness of hemochromatosis.)

Since then we have encountered many women who have experienced the same problem. Some of them have posted comments here on the blog, others have shared their stories over on the hemochromatosis page on Facebook. This syndrome is so common that in 2012 I gave it a name: hemopause.

(What follows is a new version of the first blog post that I wrote about hemopause, along with some advice on how to protect yourself from this potentially crippling condition. Note that hemopause is not an official medical term – I have coined it to name a previously nameless medical syndrome.)

I have defined hemopause as “a syndrome afflicting women entering menopause with undiagnosed hereditary hemochromatosis”. Here are the 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 that damages 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; suicidal tendencies; bronzed or orange/gray skin.
  7. Because you are menopausal your doctor may dismiss these symptoms of permanent iron damage as temporary effects of menopause, so the damage continues.

Your Doctor Says It’s Menopause?

Let’s take the seventh element first because that’s the way this hemopause syndrome tends to come up in conversation. 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 symptoms like this 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 this 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 in America 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 is how the term Celtic Curse come about.)

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 women of all ages 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 not a serious condition because you can cure it with phlebotomy: Wrong! There is no cure and irreversible damage can occur if not treated early enough.
  • It is rare these days: Wrong! It remains America’s most common genetic defect which 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. The problem is that too few doctors are even considering hemochromatosis when treating menopausal women. This needs to change.

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 (see this hemochromatosis website for more information). There is a a genetic test that will let you know if you are susceptible to HH and it can be taken before, during, or after menopause).

We think the medical community and society at large must begin weighing these simple and inexpensive steps against the costly consequences of failure to diagnose iron overload until it is too late. Those consequences include 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. Indeed, delayed diagnosis of hemochromatosis left my wife with chronic pain that continues to this day and she has been unable to work for more than a decade.

As a final piece of irony in the hemo-pause saga of menopause and iron overload, consider this: hemochromatosis can cause early onset of menopause. This 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.

So, let’s raise awareness of both menopause and hemochromatosis, because the latter is making the former a matter of life and death for too many women. Ask you doctor about hemopause! (He or she will say there is no such thing – I can assure there is, even though it has no “official” name, yet.)

{ 3 comments… read them below or add one }

Christine Smith April 11, 2015 at 4:02 am

I have an under active thyroid and through regular blood tests its been noted along with high cholesterol I have also had high iron which coincide with absent periods as I am 53 and going through the menopause and my periods are no longer as regular. Also as a child I got mouth ulcers from too much iron after my mother gave me iron tablets. I have terrible aches in joints and my neck. Also my granddaughter commented on my lovely skin colour I also have brown patches on my arms. I find this article very interesting and it has got me wondering.


Jill December 1, 2016 at 9:56 am

I’m 46 years old. I was tested last year for HH. I have been receving sporatic phlebotomies since last year. My maternal uncle is living with HH. My maternal grandmother went undiagnosed, and passed away from iron buildup in her liver, saying it was cirrhosis. My mother had HH, but after getting cancer, stopped getting phlebotomies, and passed away from a massive heart attack from the iron seizing her heart. My sister is 49. She finally went and got test. She is, not surprising, positive. I have two brothers, with all this knowledge, refuse to be tested.


Stephen Cobb March 11, 2017 at 6:08 pm

Jill – I am so sorry for your losses. This pattern is all to common including relatives refusing to get tested. If only the country took this condition more seriously there would be counselling available and programs for dealing with the emotional hit that the whole family takes when HH is diagnosed.


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