Endometriosis & Iron Levels

dumbbell
(…no, not that kind of iron)

So, if you’re reading this you probably already know a little bit about Endometriosis.  One of those facts is that the Endometriosis implants/lesions shed (or bleed) inside the pelvic cavity (or wherever else the Endo is located).  Another fact is that women with Endometriosis tend to have much longer and heavier periods than women who do not suffer from Endo.  Recently at our support group meeting, the question of iron levels and anemia came up.   With all that bleeding, can we suffer from anemia or an iron deficiency?

And, again, the topic of iron levels and Endo came up at our Endometriosis Awareness & Support Walk : could the blood left in my pelvic region from shedding Endo have caused the “abnormally high” iron levels during a blood test?

Just what does Endometriosis and iron do to our bodies?  Anemia? An iron deficiency?  High levels of iron? What does iron do?  Why do we need it?  All of these questions have been swimming around in my head and its’ time to get them out…and you know what that means : RESEARCH!

I don’t know about you, but every time I swallow a multivitamin with iron in it, I’m throwing up within five minutes.  When I spoke with my primary care physician a few years ago about iron making me throw up, he asked me why I was taking it.  My response was simply, “Because I thought I had to…”  He clucked his tongue, shook his head, and told me he generally only advised pregnant women to take iron.  So, I steer clear of iron supplements or vitamins that contain any iron.

Anyway, on with the research!

 

Iron Deficiency:

How do you know if you have an iron deficiency?  Symptoms may include shortness of breath while exerting, fatigue, weakness, dizziness, an urge to eat ice, headaches, depression, temperature sensitivity, a sore tongue, restless leg syndrome, an increase of infections, poor muscle coordination, and a decreased mental function.

Many women who are anemic suffer from an iron deficiency (without iron, enough red blood cells cannot be created/maintained and less oxygen is delivered throughout the body).   This deficiency may be due to blood loss, a lack of red meat in a diet, their bodies may have trouble absorbing iron, they may not take enough vitamins, GI issues, or some diseases such as fibroids or cancer.

According to the Iron Disorders Institute, blood loss may be due to heavy menstruation, Endometriosis, and fibroids, which may lead to anemia.  An average healthy woman’s body increases iron absorption during her period to make up for the loss of blood during her cycle.  With Endo, we tend to have lengthy or heavy periods and the iron regulatory systems in our bodies may not be able to properly regulate the amount of blood (and iron) we are losing, leading to anemia.  With that being said; however, a 2006 study claims to debunk the theory that heavy periods lead to anemia.

You can also not get enough iron into your body through diet and supplements, which can lead to anemia.  The Center for Disease Control estimates that only one-fourth of women between 12-49 years old meet the daily recommendation of iron intake.  Red meat is supposedly the best food-source for iron, which, for many following the Endo diet, is out of the question.  If you must eat red meat, try to get the organic, grass-fed beef.  Also, eggs, beans, fish, nuts, dried fruits, whole grains, and dark leafy vegetables are rich in iron.  A word of warning, calcium may inhibit the absorption of iron.  A healthy digestive system and nutrient-rich diet is critical to ensure good iron absorption.

Looking to restore your iron levels if you’re anemic?  Adjust your diet or talk to your physician about iron supplements (taking it orally, injecting it, or infusions) or, in extreme cases, a blood transfusion may be necessary.

Too Much Iron:

Too much iron may be indicated by chronic fatigue, joint pain, abdominal pain, skin color changes, the loss of your period, loss of libido, and even hair loss.

Women who no longer have their periods are at risk for having too much iron in their systems.  (This is interesting to me since I’m on the pill and haven’t bled since Sept. 25, 2014).  Other causes of heightened levels of iron could include hereditary factors, genetic mutations in the cells, autoimmune diseases, or an iron overload due to blood transfusions, excessive alcohol, or too much iron supplementation in the diet.

Some of the risks of having too much iron include premature heart attack (especially of interest given recent studies that women with Endo are at a higher risk of heart disease), diabetes, liver disease, osteoarthritis, and hormonal imbalances.

How Can I Know My Iron Levels?

You an ask your physician to order a blood panel.  Give up a vial or two of blood, lab work is done, and *presto* you have a magical piece of paper that only medical professionals can understand.  You may prod your doctor asking to check your ferritin, transferrin, iron,  TIBC (total iron-binding capacity), CBC (complete blood count), and reticulocyte count.  You may even want him/her to order a check on your thyroid levels, as these may come into play.

Or you can contact and pay Health e-Iron to test you with their FeGGT LifePro test.  (I don’t know or endorse these guys…just found them through the Iron Disorders Institute webpage).

Iron & Endometriosis

A study published in 2002 found that the iron concentrations in the peritoneal fluid of the pelvic cavity of women with Endometriosis was higher than women without, and that those high concentrations remained throughout each stage of the disease.  It also found that the higher iron concentrations were found alongside the lesions, suggesting a link between the two.  The study surmised that “…cellular defenses might be overwhelmed owing to repeated bleeding of lesions…” and further research was needed.

A study in 2006 proved that iron deposits and iron overload are found within the pelvic cavity where Endometriosis is present and may contribute to the growth and spread of the disease.  Lab rats who were treated with an “iron chelator” known as Desferoxamine (aka DFO) had less iron deposits, less cell growth, and less iron concentrations!  An iron chelator is a drug which removes excess iron from the body.  The study concluded that iron may contribute to the growth of the disease and the use of an iron chelator may be beneficial to help control iron levels in women with Endometriosis.  A 2009 study confirmed the findings that iron chelators may prove beneficial in reducing iron overload and controlling inflammation.

In 2008 several scientists from the 2006 study published another.  This time it was to review and discuss the potential consequences of iron overload in women with Endometriosis.  Again, they conclude that treatment using an iron chelator with Endometriosis patients should be considered to help lessen the effects of iron overload.  Table 1 of the 2008 study identifies 21 prior studies which demonstrate iron overload in women with Endometriosis (click here).   The study suggests that women with Endometriosis are unable to stabilize the amounts of iron in their bodies as easily as women who do not suffer from Endo.  These excess iron levels may contribute to the development of Endometriosis, add to inflammation, or even aggravate symptoms.

Now what?

I found it interesting reading different articles, blogs, and studies today.  In one corner, you have the “eat iron-rich foods and take supplements to make up for what you lose during your period” campaign – and in the opposite corner, you have the “women with Endometriosis have an iron overload.”  And throw in the 2006 study that blood loss during a period doesn’t lead to anemia.  So just what to do?

I think Step One is talk to your physician (well, I plan to).  My next appointment with my Endo doc/gyno is on April 12, 2016 for my annual exam & check-up.  I also want to ask him his opinion regarding menstruation and anemia and/or an iron deficiency.  After that appointment, he always orders my blood work so it works out perfectly : I’m going to ask him if he can test my iron & Vitamin B levels.  Depending on those results, I’ll think about Step Two.

Possible Step Two(s):

a.  Increase the amount of iron-rich foods in my diet (if I’m iron deficient);

b.  Find a good iron supplement that’s right for my body (if I’m iron deficient);

c.  Talk about iron chelators (if I have too much iron);

d.  Do nothing different than what I have been doing (assuming my numbers are juuuust fine).

What are you going to do?  And what are your thoughts on iron, anemia, and Endometriosis?

(and thanks for reading!)

 

Resources:

American Journal of Human Biology – (2006; Article) Menstruation Does Not Cause Anemia: Endometrial Thickness Correlates Positively with Erythrocyte Count and Hemoglobin Concentration in Premenopausal Women

American Red CrossIron Information for All Donors

Endometriosis.org Overload of Iron in the Pelvic Cavity May Promote Proliferation of Endometriosis Lesions’ Epithelial Cells

Every Day Health

Fertility & Sterility – (Oct. 2002, Article) Iron Overload in the Peritoneal Cavity of Women with Pelvic Endometriosis

Health e-Iron, LLC

Human Reproduction– (July 2006, Article) Iron Overload Enhances Epithelial Cells in Endometriotic Lesions Induced in a Murine Model

Iron Disorders InstituteIron Deficiency Anemia

Iron Disorders Institute – Iron Out-of-Balance in Women

Iron Disorders InstituteIron Overload

Lab Tests Online

Livestrong Iron-Rich Foods for Iron-Deficiency and Anemia

Mary Vance NC

Molecular Human Reproduction – (May 2008, Article) Potential Involvement of Iron in the Pathogenesis of Peritoneal Endometriosis

National Heart, Lung, and Blood Institute

NHS.uk

Scientific American – (July 2011, Article) Iron-Deficiency is Not Something You Get Just for Being a Lady

SelfGrowth.com

The Curriculum in Iron Metabolism & Related DisordersIron Chelation Basics

US National Library of Medicine – (Sept. 2006, Abstract) Menstruation Does Not Cause Anemia: Endometrial Thickness Correlates Positively with Erythrocyte Count and Hemoglobin Concentration in Premenopausal Women

US National Library of Medicine – (Dec. 2009, Article) Synthetic and Natural Iron Chelators: Therapeutic Potential and Clinical Use

US National Library of Medicine – (Jan. 2009, Abstract) The Role of Iron in the Pathogenesis of Endometriosis

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

22 thoughts on “Endometriosis & Iron Levels

  1. I have endo and have always suffered from iron deficiency. I take an iron supplement almost everyday. They have some pretty decent ones with low side effects and less likely to have too much. FerraMax is a good one for me. It’s absorbed real well and taking it with orange juice helps as well. I have an iron level blood test taken every 3 months to ensure I stay OK.

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  2. Hypotension, Anemia and temperature control are huge ongoing issues for me….the less well treated the endo is the worse it is…its been a problem since I was 14 (first got my period) and my daughters all seem to have the same problem…..repeatedly showing up in blood tests and its not a dietary issue and even supplements can’t seem to quite be enough….

    but I also have Osteoarthritis… so joint pain is a given…

    My mother was prone to Anemia and low blood pressure too…still is even following hysterectomy but her full open heart surgery could be the why behind it continuing…..it had eased up between the hysterectomy and the heart surgery….

    My cousin on the other hand has the opposite problem…she has too much Iron in her blood to the point that without treatment she develops the equivalent of CFS….

    the treatment….Blood donation regularly…..

    I on the other hand after giving blood each time am told not to give blood again…..not due to infections….but because I hit the deck….

    Liked by 1 person

  3. It was so bad while breast feeding my eldest two in the first couple of months (of course with the post pregnancy bleed) I literally had to stop breast feeding….I could not stay awake….I couldnt keep my levels up….

    Finally my 3rd I managed to breast feed for 10 months….BUT the endo came back with a vengeance when she was about 2-3

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  4. I should mention my period doesnt even need to be heavy to become anemic….on mirena I barely get a slight change in colour for discharge for weeks but I get all the symptoms of pain and respiratory issues and anemia with it that I do if it was a full gush 7 day long period….no matter how short or long it is although if I have that light discolouration for weeks Maaaaaaan am I sick…its about where I’m at now….I can barely be up for a few minutes and I have to rest again. I need help with everything atm….

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      1. Besides supplements….never been any inclination to do so beyond telling me to get a bottle of ferro grad C

        its the least of their worries, you are anemic take supplements….

        just like a reality of life…

        they have always been more concerned with keeping me breathing

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        1. I am not doctor….

          but I have a suspicion that the Anemia or excessive Iron and general Dysregulation many experience during their period IS related to their period…but it isn’t necessarily Anemia or excess iron or High or Low Blood Pressure….

          I suspect for those of us with Endometriosis that whatever is behind/causes the endometriosis…..causes multiple systems to skip a beat….hence dysregulation….which can go either way….

          Immune System
          Iron

          for women without endometriosis those endometrial cells get cleaned up by the Immune system…..not for us….

          something fall’s over somewhere…not enough to kill us…but enough for us to notice and it to cause havok for us long term….just a few skips of the beat building up over time impacting multiple systems but not enough for them to put their finger on it…..

          women with endo often have other issues

          http://www.webmd.com/women/endometriosis/news/20020926/endometriosis-linked-to-other-diseases

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  5. Always had high iron levels despite lots of heavy bleeding, malabsorption problems (thanks Crohn’s!) and not eating meat, so in theory I should have been anaemic. So thanks for this post, would have never associated this with endo or any other “lady problems” if it wasn’t for it. (Also have PCOS, so that may be to blame though).

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  6. I’ve had heavy and painful periods and low iron levels since I was 12 – when I was 13, my family doctor said I had anemia and prescribed iron pills. I didn’t quite know what it was about – the doctor didn’t explain it directly to me. After that prescription ran out, that doctor retired and I don’t think my iron levels were even checked again until I was in my mid 20s and I finally had a job with decent health insurance. My iron was still low – I was again advised to take a daily iron supplement. Which I did take, for many years, but my ferritin never really rose much, never got above 35 or so, no matter what I did.

    Finally, in my late 40s, at a time in my life when I didn’t have health insurance, I was obviously having some substantial health problems that were impacting on my day-to-day life and making me feel exhausted and uncomfortable, so I paid privately for a few blood tests. One of the unusual results that came out of that was that I had a very high CA-125 result (which can mean cancer, or endometriosis) and on the basis of that test result, I was able to convince a doctor to let me have a pelvic ultrasound (actually, the first doctor I saw about the CA-125 result, a GP, said I shouldn’t have an ultrasound and should not “pursue” the issue because it would come to nothing, even with my bloated tummy, terrible period pain, and very high CA-125 score! Crazy. And she was a youngish female doctor in her early 30s. So I sought a second opinion, and the second doctor, a gynecological surgeon, took it seriously). The ultrasound showed that both ovaries had giant cysts on them, so I had surgery to partially remove them (could not entirely be removed due to severe adhesions amongst several organs in my pelvic cavity) and to see if they were cancerous (fortunately, the biopsies indicated that they were not), and it was determined that I had stage 4 endometriosis.

    [I had known since I was 20 that I probably had endometriosis (which was a pretty new concept back then, in the mid-80s) and I would ask about it at my medical appointments, but the doctors I’ve had for most of my life, male or female, just didn’t want to know about it, talk about it, or to actively help me (they always said that since I was not married and therefore not trying for a baby, that I was not going to be eligible for a laparoscopy) — the most they’d do was prescribe birth control pills, so that was the only treatment available to me, and I took them, even though they gave me unpleasant symptoms, until I was nearly 40 — when my doctor at the time said that 40 was the cut-off age in their health system for birth control pills, so I’d have to go off them cold-turkey (without offering me anything else to help with my terrible periods – pain, bloating, nausea, vomiting, heavy flow, unpredictability, low iron).]

    Anyway, even through my late 40s, and during and after the surgery for the ovarian cysts (which unfortunately all grew back just 3 months after the laparoscopy), my iron would be low, and various doctors would tell me to take a daily iron supplement. Therefore, I took more and more supplemental iron daily (I tried all different types and brands), and my serum blood iron became very high (higher than “normal” range) but my ferritin was still low and not moving upwards very much (hovering around 30, I think).
    Finally, the nurse practitioner of my hematologist (whom I went to for a different health problem) said to me, sort of off-hand (iron/ferritin was not what the topic of my appointment with her was about), that if she were me, she would stop taking the iron supplements, because it was obvious that my body simply does not convert supplemental iron into ferritin, and the iron was just floating around in my bloodstream with no where to go, building up to an inadvisable level in my serum, while my storage ferritin mainly bumped along at about 20/25, sometimes getting to 30/35. She said that my body was not assimilating the supplemental iron, so there was no point of continuing with it.

    I had not known before that conversation with the nurse that it was even possible that some people just don’t convert supplemental or dietary iron easily into storage ferritin! I had not realized that it was probably better to bump along at 20-22 for ferritin (there are different scales out there, but that was quite low on the scale of the particular bloodwork lab that my doctor group at the time used) than it was to try to force the body into accepting iron that it couldn’t store (or that it _didn’t_ “want” to store for whatever mysterious reason) as ferritin.

    Even after that, after I had heeded her advice and stopped taking the daily supplemental iron, other doctors would look at blood test results and say, “Oh, your ferritin is low, you should take some iron pills,” and I’d tell them what the nurse of the hematologist had advised me to do, and they’d shrug and say, “Well, do what you want,” but they’d act like their advice would still be that I should keep taking a daily iron supplement, even with my abnormally-high blood/serum iron and my lowish ferritin/storage iron test results.

    I’m in my 50s now, and I had not known until tonight (when I saw a link to this blog post on a different women’s health blog) that endometrial tissue and surrounding areas can have a very high level of iron, and that this high level of iron can encourage cancer to form in those areas.

    So… I wonder if maybe my body has been “protecting” me from all the supplemental and dietary iron I’ve been taking all these years, by NOT incorporating it as storage ferritin, instead keeping it separate and floating around in my blood stream, because of the potential harm it could do to me vis-a-vis my extensive web of endometrial tissue and endometrioma “chocolate” cysts and other forms of ovarian cyst (I have several forms of cyst co-existing, which is apparently unusual).

    (I — obviously! — don’t know much about biology/medicine, so I am not sure if the high iron levels that have reportedly been found in women’s endometrial areas are of ferritin iron, or serum iron, or what form. I have not read the actual studies that are cited here.)

    My grandmother died young of endometrial cancer. I was too young then to know that she had been in constant abdominal pain, with nonstop spotting/bleeding, for a long time, but had been too embarrassed to tell a doctor about it. She only went to a doctor when it was too late, and they discovered that she had womb cancer that had already spread to several other organs. She died shortly thereafter.

    Thanks to this blog for pointing out these studies. I am in my 50s but still menstruating, and I still have low iron, but I expect that I will not even consider taking supplemental iron again, now that I know this information about how iron accumulates in endometrial tissue/areas and can pre-dispose to cancerous growths.

    Liked by 1 person

    1. YOWZA! What an incredible journey! I’m so grateful you sought a second opinion, valued the opinion of your nurse, and follow what feels best for YOU.

      Thank you for sharing everything here today! I hope that you are able to find a way to improve your iron count. I hear lots of leafy greens and fish is a great way to do that 😉 But for all I know you already eat well. 🙂 (I say as I shove a square of Godiva chocolate into my mouth, licking my fingers before typing more…)

      Continue your research. Always. Talk to your doctors, regardless of eye rolls or groans. Always advocate for yourself. And do what feels right for you. ❤

      I'm so grateful you found my blog and that it's given you a voice and some sanity. I don't write as much as I used to because, well, timing issues *sigh* but I do hope to get back into it full-force next year. If there's anything you ever need, you know where to find me. ❤

      Yours, Lisa.

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  7. By the way, an easy and inexpensive way to remove some iron from the body (i.e., chelate it) is to take some milk thistle, which is a popular herbal remedy that is good for lots of things — liver health, digestive system functioning, etc.

    There are many brands out there (Nature’s Way, Swanson, etc.) and it’s easy to find in stores and online.

    Note that milk thistle (scientific name: silybum marianum) is in a plant family called Asteraceae that some people have allergy issues with (some other members of that plant family are ragweed, chamomile, and sunflower), so if you tend to have plant/food/pollen allergies, research milk thistle further before taking it. (Look up those topics on Wikipedia, for example.)

    Liked by 1 person

    1. I have now read one of the scientific reports about how iron may be linked with endometriosis, and I wanted to come back and highlight (by using some asterisks****) a point they made about about chelating/removing iron in a woman with endometriosis:

      ========================================================
      from: https://academic.oup.com/molehr/article/14/7/377/1000809

      “Iron chelators as endometriosis treatment

      Treatment with DFO, a common iron chelator, has proved beneficial and is currently used for pathologies characterized by iron overload, such as β-thalassemia and hereditary hemochromatosis….

      In a murine endometriosis model, DFO was found to decrease the number of lesions with iron deposits, iron concentrations in peritoneal fluid and the percentage of iron-loaded pelvic macrophages…. Moreover, DFO treatment was effective at reducing cellular proliferation of lesions.

      Treatment with an iron chelator like DFO could thus be beneficial in the case of endometriosis to prevent iron overload in the pelvic cavity, thereby diminishing its possible deleterious effects.

      However, in women suffering from endometriosis, menstrual periods are often longer and heavier… and cycles tend to be shorter….
      Therefore, iron overload observed in these patients is generally localized in the pelvic cavity, whereas
      ****body iron content may actually be decreased**** due to abundant menstruation.
      ****For this reason, iron chelator treatment should be applied locally, only inside the peritoneal cavity,**** by means of intrapelvic implants that release DFO over several months or years.”
      ==========================================================

      Therefore, if one is interested in the idea of using some over-the-counter products to chelate some iron from their body, it would be a good idea to consult a medical professional first, for iron blood tests and advice, to make sure that the systemic iron that might be removed by the chelator is genuinely “excess” and not needed by the body (in areas other than those stricken with endometriosis) to function normally.

      Liked by 1 person

    2. If you do decide to take something like milk thistle to remove some iron, it would be a good idea to start with a low dose and to do periodic blood tests of your serum iron and ferritin iron to make sure that the chelating product is having the effect that you want, and to make sure that your iron levels aren’t going too low.

      If your doctor/health insurance won’t pay for that kind of frequent testing, if you live in the US, in most states (but not all states), it is easy to order your own blood lab tests for hundreds of different health issues, and in many cases it’s not very expensive if you pay “out of pocket” for them.

      As a part of the test fee, they’ll have you to go into a blood draw lab in your area (a typical one with outlets across the country is called Lab Corp) and have your blood drawn by a phlebotomist, stored properly, and transported by overnight mail to the processing lab.

      There are a couple of main online companies that do this – I don’t know if they are all still around, but a few years ago, I used 4 online services for various tests — Private MD Labs, Direct Labs, Life Extension, and ZRT Labs.

      They’ll often offer a similar list of tests, but have different prices, so it pays to comparision-shop and maybe do some tests with one company and some tests with another to get the best prices; each company will probably offer a few unique tests that no other company does (like ZRT with some of the multiple-sample thyroid/cortisol saliva tests); and they often have coupon codes floating around out there for 10% off (I always used a coupon if I could!), etc.

      I am not promoting any particular company, but just as a random example that I typed into my browser this afternoon, here is the ferritin test from Direct Labs for $39: https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx

      Note that I undertook that “out of pocket” testing when I didn’t have any health insurance policy. I don’t know how having health insurance changes the process of buying those tests yourself (from the websites I mentioned above). I know that you CAN certainly still buy those tests on your own without having a local doctor’s order for them, but I’m not sure if you have to provide your health insurance policy number and maybe somehow route it through your insurance – I don’t know.

      —–
      When a reasonable person can tell that something a little odd and potentially serious is going on in her body, but her doctors don’t think it requires investigation, or she just wants to do an occasional “health check” of a number of indicators that often go untested in the normal course of being seen once or twice a year by one’s GP (like CA-125, vitamin D, ferritin, thyroid antibodies, 24-hour cortisol, and so forth), these services fill an important gap in the US marketplace and usually provide the same quality of standardized testing as a mainstream doctor’s office would offer (from Lab Corp, for example).

      It was only by doing a number of medical tests on my own, based on my health issues that were becoming increasingly concerning to me but were being pooh-poohed (or totally misdiagnosed) by doctors, that I found out some serious things were going on in my body, and I used those blood test results to advocate for ultrasounds/MRIs/further bloodwork so that doctors could see that I was reporting my issues accurately, and the end result is that I was found to require two surgeries right away and lifelong follow-up testing by specialists.

      Liked by 1 person

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