The Original Hemo-pause Post: What women of a certain age should know about HH
Update, October, 2020: Please visit hemopause.org for a more recent account of this syndrome.
Back at the beginning of September, 2010, I found out that September was Menopause Awareness Month. This rang a bell, and not just because I had recently written several articles related to Hemochromatosis Awareness Month, which is July. I had also been monitoring traffic on the hemochromatosis page on Facebook and noticing a trend, something I dubbed hemo-pause. Here is the first blog post I wrote about this, edited slightly to improve readability:
What is hemo-pause?
It's a term coined for a syndrome which afflicts women entering menopause with undiagnosed hereditary hemochromatosis, often referred to as HH for short There are 5 elements of hemo-pause
- Women with HH may not process iron properly which can lead to toxic iron accumulation.
- Regular blood loss is the best known means of preventing the toxic iron accumulation caused by HH.
- Menopause slows and then stops the regular blood loss that most women have experienced since puberty.
- If you have HH the onset of menopause can cause iron to damage your system (you experience joint pain, chronic fatigue, liver and heart problems, thyroid and adrenal issues, diabetes, osteoporosis, macular degeneration, loss of libido, depression, orange skin).
- Your doctor dismisses the symptoms of permanent iron damage as temporary effects of menopause and the damage gets worse.
Let's take the 5th element first because that's the way hemo-pause tends to come up in conversation. Quite frankly we have lost track of the number of conversations we have had with women of a certain age that go like this:
I started having joint pain. I was gaining weight but not eating any more than usual. 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 but eventually they pass. Well they haven't passed and 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 in America tend to be massively under-informed about HH in relation to the prevalence of this genetic condition (starting with the fact that too few doctors know how prevalent it is--HH is the most common genetic defect in North America). Common mis-conceptions that doctors have about HH include the following:
- Rarely affects women: Wrong! Although that appeared to be true when fewer women lived to be post-menopausal.
- Only present if you have skin discoloration: Wrong! Although bronze or gray discoloration is one possible symptom, many patients are asymptomatic.
- Only affects people of Irish descent: Wrong! Although HH is highly prevalent in Ireland, having no known Celtic antecedents does not make you immune.
- No big deal because you can cure it with phlebotomy: Wrong! There is no cure and some damage may be irreversible.
- Rare these days: Wrong! It remains America's most common genetic defect 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. There is a cheap and simple blood test for iron levels and it should be routine at the first signs of menopause. Medical history should be factored in when consulting 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).
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. Yet another reason that as soon as a 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 this month, let's raise awareness of both menopause and hemo-pause, because the latter is making the former a matter of life and death for too many women.
p.s. For loads of helpful information about menopause, be sure to visit the North American Menopause Society www.menopause.org.