By: Dr. Kristina Lewis, ND
Many women do not learn that they have hemochromatosis until they are middle aged, and often after they have passed their childbearing years. As I pointed out in my article about Hemochromatosis in Women, the average age a woman begins to develop symptoms of hemochromatosis is 50.
However, this is not the case for all women.
Some women are getting diagnosed with iron overload in their 20s. Perhaps a young woman may have an older relative who has been diagnosed which led her to getting her own genetics tested way before any symptoms started. And maybe a young woman incidentally finds high iron as part of blood work her doctor ordered for her. Regardless of the manner in which she finds she has hemochromatosis, a woman will have to navigate her future healthcare choices with iron overload in mind.
Most sources suggest that when you are pregnant it is wise to stop your regular phlebotomy. Pregnancy is an unusual state for your body in that you actively need more iron than your non-pregnant state (to help nourish the health and growth of your baby). Even women with hemochromatosis can develop iron deficiency during pregnancy!
“While iron supplements should be avoided, iron deficiency is common and should be treated in a similar fashion to any other pregnant woman. If ferritin is high then venesection should be delayed until you recover from childbirth unless there are haemochromatosis related liver and cardiac issues. Then you should seek advice from your consultant who should be able to give reassurance or develop a treatment plan. Normal monitoring of mother and foetus should be sufficient but you should inform all medical staff involved in your pregnancy of your condition. In simple terms, you should be fine but if you have any worries, ask your doctors.”
If you do find that you need to take iron while pregnant, don’t fear! In a Hemochromatosis Forum at MD Junction, one woman wrote “[the] last 3 months of my pregnancy I became anemic and had to take an iron supplement. I know right?? I felt like Superman being forced to eat Kryptonite.”
So what happens if you want to become pregnant, or are pregnant, and you have hemochromatosis? How does this impact your pregnancy and how you need to think about iron? The following are some commonly asked questions about the risks and issues surrounding hemochromatosis and pregnancy and fertility.
Great question. First, there is a rare newborn iron overload disease called Neonatal Hemochromatosis. The Neonatal Hemochromatosis Information Center (NHIC) offers many resources devoted to this specific disease.One thing they note that I think bears repeating is that if you have Hereditary Hemochromatosis (Type 1, the most common genetic hemochromatosis) you will NOT have a baby with Neonatal Hemochromatosis. It’s a different condition, not genetic like Hereditary Hemochromatosis, and your baby is not at risk because of your diagnosis.
Now because you do have Type 1 Hemochromatosis, you carry at least one gene for the condition, which means you can pass it along to your baby. The GREAT NEWS in this situation, however, is that because you already know, your child can be tested when he or she is still young and can take proactive steps to take care of iron status way before any symptoms develop or organs are damaged.
This is a popular theory that you may have read in other places – that being pregnant and giving birth leads to an overall loss of iron that is good for your hemochromatosis and iron overload status. It reminds me a bit of the theory about menopause and hemochromatosis .
Medical research attempting to answer this question is sparse. As discussed in the paper Clinical features of genetic hemochromatosis in women compared with men, this sounds great in theory… but research doesn’t seem to point to it being true.
In pregnancy, a woman’s iron metabolism changes significantly, as her baby requires a large amount of iron to be healthy. Labor and delivery also come with a great deal of blood loss. So on the surface, it seems as if having children may spare a woman from the symptoms of iron overload, or at least delay the onset of symptoms.
However, although pregnancy lowers a woman’s iron levels temporarily, this does not seem to have a significant enough of an effect over the course of a woman’s life to make an impact on iron overload. Over time, women who have given birth to children still express symptoms of too much iron in the blood.
The only one other study I could find looking at this topic suggested a similar finding, that pregnancy really doesn’t seem to affect long term iron overload as much as one might theorize. In the study Hemochromatosis and pregnancy: iron stores in the Hfe-/- mouse are not reduced by multiple pregnancies the researchers looked at iron-overloaded mice and compared those who had never given birth to those who had had lots of mice babies, and they concluded that “multiple pregnancies do not reduce body iron” in mice with the HFE gene.
I’ve poured through PubMed (the NIH database for all clinical research) and searched for this topic, and as of yet, there are no research studies that I can find to definitively answer if hemochromatosis reduces fertility or causes miscarriage.
But if visit forums frequented by hemochromatosis sufferers, the same story shows up over and over: “I have hemochromatosis. I’ve had a miscarriage (or multiple miscarriages)” and then other women start to chime in, “me too.”
Is there something to this? Does iron overload contribute to infertility or miscarriage?
Anecdotal stories may suggest a possible link between hemochromatosis and infertility and miscarriage. Unfortunately, no one has fully explored this question in the medical research community.
Clearly, more research needs to be done for hemochromatosis and pregnancy and fertility. From all I can gather, it does seem like pregnancy temporarily reduces the iron level of a woman (even potentially to the point of anemia).
However, this effect does not seem to confer any type of long term benefit to overall iron stores in a woman’s body. Hemochromatosis symptoms in women occur, on average, in a similar time frame to men… indicating that the blood loss from menses, pregnancy, and childbirth does not affect the long term progression of too much iron in a significant manner.
Therefore, it’s essential that women with hemochromatosis that wish to become pregnant, or who have already had children, make sure to speak with their doctor on an ongoing basis to ensure proper care for iron overload.