Menopause or Hemo-pause? What women of a certain age need to know about HHC

by Stephen Cobb on September 5, 2010

Menopause Awareness Month

September is Menopause Awareness Month. Regular readers of CelticCurse.org will know that July was Hemochromatosis awareness month. So why is this website–devoted to raising awareness of Celtic Curse or hereditary hemochromatosis (HHC)–talking about menopause? The answer is: hemo-pause.

What is hemo-pause? It’s a term we coined for a syndrome which afflicts women entering menopause with undiagnosed hemochromatosis. There are 5 elements of hemo-pause

  1. Women with HHC may not process iron properly which can lead to toxic iron accumulation.
  2. Regular blood loss is the best known means of preventing the toxic iron accumulation caused by HHC.
  3. Menopause slows and then stops the regular blood loss that most women have experienced since puberty.
  4. As menopause progresses, iron starts 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).
  5. 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 HHC in relation to the prevalence of this genetic condition (starting with the fact that too few doctors know how prevalent it is–HHC is the most common genetic defect in North America). Common mis-conceptions that doctors have about HHC 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 HHC 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.

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.

{ 9 comments… read them below or add one }

R. Boyce September 6, 2010 at 11:24 am

DO NOT GET THE GARDASIL VACCINE IF THERE IS ANY CHANCE YOU MIGHT HAVE THIS GENETIC TRAIT!!! It has been suggested that the girls who may have died or are seeing serious side effects from the Gardasil vaccine have a celtic connection … and I believe this is it.

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Erin September 11, 2010 at 7:56 pm

Thanks for sharing your wife’s experience with hemochromatosis.

I am a 27 year old female in the process of being diagnosed with this condition… I am in Canada and have a 7 month wait until I can see a specialist. I am getting a little a worried because my saturation was 98% when my family doctor got my bloodwork! My serum iron was supposed to be between 11-27 and it was 57.

Anyway, thanks again for spreading the word.

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Stephen Cobb September 22, 2010 at 9:50 pm

Erin — Sorry to hear you are having iron overload problems. One thing I would suggest is that you donate blood. There are many good reasons to donate blood and having high iron levels does not make your blood unsafe for others. Simply participate in a normal blood donation, blood drive, or such.

Of course, I have make a disclaimer here: I am not a doctor. But unless there is some other reason that you cannot give blood, such as a history of low blood pressure or living in Europe during the “Mad Cow” years, then I see no harm in it, and some potential upside. A normal donation amount will tend to reduce your iron level.

There is a limit on how often you can give blood at a blood bank (8 weeks in most places) but personally I would be inclined to give blood once and see how you feel. If you feel okay or somewhat better, give again after the required two months gap. Of course, if you are a regular blood donor already, then these levels of iron are a matter of more immediate concern.

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Karen L. Martin October 4, 2010 at 7:06 pm

Ahhh finally I know what is wrong with me, It is now all starting to make sence. I broke out with hives (auto-immune) right after a hysterectomy. I have been to every doc under the sun including U of M. No one ever checked my iron levels until I was sent to a endrocranoligist. She checked my hormone levels and some where in there she saw my iron level which is at 1200. I have told every doctor that I ache and am extremly tired all the time. Finally sent to a hemotologist and was tested for the HH gene….I start my 1st phelb tomarrow. What a journey. 3 years of my life feeling like total crap and I was diagnosed by accident. I will make it my personal mission to spread the word and I will talk to each doctor I have seen. Thank you for all the information. I will continue to follow your journey for your wife and all of us.

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susan August 10, 2011 at 3:40 pm

Hey.. I also broke out in hives right after my hysterectomy. i just found out I have hemachromatosis. can you please tell me the connection of hives, hypothyroidism and this diagnosis as you understand it? Thanks.

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Danny Yates October 5, 2010 at 8:31 am

Thank you for understanding and supporting your wife and all of us with this New/Ancient/Common/Unknown curse.

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PAH March 3, 2011 at 1:45 pm

How does one tactfully ask their doctor for an HHC test w/out sounding hypochondrial? I have a doctor who rolled his eyes @ me because my bones began to ache & walking was difficult after I was given Levaquin & Flagyl for what they thought was diverticulitis. The doctor punched me in the abdominal area (very painful) while muttering, “diverticulitus?, diverticulitus?” with each hit. She was an Oncologist, too! I switched doctors, but the one I have now thinks I should just take glucosamine to get over the pain. So I took it, but I still have pain. They told me I was just old & need to take motrin & get on w/ my life. I never had pain before and kept a regular exercise routine, but now I don’t feel like working out anymore. blah!

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Stephen Cobb March 3, 2011 at 4:53 pm

There are a couple of strategies you can use. I will write them up as a new post in a day or so.

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Debbie May 15, 2011 at 1:19 am

l am very down lost 2 stone fighting to maintain weight bones hurt iron was affecting my digestive system and brain. Only had a reading of 425 but got parasite and candida. 2yrs of horror thought bleeding fixed hemachromotosis feel like l’m starving to death horrifically 52 gene h63d considered homoz. but l feel like l have it bad sad thing a couple of yrs ago was put on livial hormone treatment & it kept it under control if l only knew.

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