Iron Behaving Badly: The Role of Iron Overload in Metabolic Disease | Chris Kresser

Iron Behaving Badly: The Role of Iron Overload in Metabolic Disease

by Chris Kresser

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Screen Shot 2013-07-14 at 9.46.00 PMAt the Ancestral Health Symposium last year, I presented a talk entitled “Iron Behaving Badly: The Role of Iron Overload in Metabolic Disease” about the pathophysiology of iron-related metabolic disease, and propose a clinical framework for diagnosing and treating it.

We’ve known for almost a hundred years that aggressive iron storage disorders like hereditary hemochromatosis (HH) are associated with increased morbidity and mortality. Yet recent research suggests that even mild iron accumulation (at ferritin levels still well within the laboratory reference range) can cause significant metabolic problems, including insulin deficiency, insulin resistance and hepatic dysfunction. Studies have shown that the frequency of diabetes is increased in HH, that elevated ferritin levels are associated with increased incidence of diabetes, and that reducing iron stores reverses or improves the metabolic abnormalities associated with excess iron.

The talk is now available on Vimeo, so I’ve posted it here so that my readers can access the talk easily. I hope you enjoy it, and I’d love to hear your thoughts and opinions on the topic in the comments below.

98 Comments

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  1. I have the opposite problem from an overload. I am iron deficient (29 ug/dl instead of normal range of 50-170) and my ferritin is within normal range (54.4) and my saturation is only 11% instead of 20%-50%. My doctor prescribed iron supplements for me, but I have 2 problems with that: I have Crohn’s disease and when I take the supplement my colon swelled up and was cramping. It exasperated an already inflammatory condition. The other problem is that I wonder if I have “Anemia of Inflammation” because my C Reactive Protein and my SED rate are both high right now (I am in a flare up). I have Ankylosing Spondylitis also, by the way (another inflammatory condition). If it is true that my iron levels are off because of inflammation and my auto immune conditions, then I don’t know how to read these results and what treatment to accept. I read somewhere that it is dangerous to take iron supplements if you have Anemia of Inflammation with normal ferritin levels, because then you can get iron overload. In your video, however, you mentioned that ferritin can give a false “normal” on blood tests because inflammation can make it appear higher than it really is. So maybe I really do have low ferritin along with the obvious low serum iron. If that’s the case, then I suppose iron supplementation would be the course of action, except that my colon cannot tolerate it. My doctor suggested intravenous iron supplementation. I just am afraid to make an already horrible situation worse. I am sooooo dizzy, and also weak, with muscle cramps, restless legs, and insomnia. I have pain behind my eyes and feel like they are swollen. What should I do?

    • Magnesium should help your muscle crampa and restless legs. You should also check for low thyroid hormone (free T3, and Free T4. TSH is not a good indicator of thyroid status. High reverse T3 has the opposite effects of thyroxine and is probably inversely related to it.

      • Thank you. I already take Magnesium every day. It does help somewhat for the muscle cramps and restless legs. But it does not help with the dizziness and fatigue. And yes, I am Hypothyroid (diagnosed 20 years ago). I take Armor thyroid every day and have the levels tested every 3 months (free T3 and free T4). Everything is within normal range with the supplements.

        But this does not answer my question regarding what I should do for the low iron?

        • Hi Amy,

          I tried to post a longer answer with a few links but it wasn’t allowed. So I’m trying a shorter answer with no links and hope that will be allowed.

          Suggesting intravenous iron must mean that your doctor does think that you are low on iron. The American Society of Hematology has more information on IV iron. You might want to ask your doctor about possible causes for your iron being low, such as low-level bleeding from an inflamed intestine and/or not absorbing minerals in general very well? If mineral absorption is a problem, you might not be absorbing fat and fat-soluble vitamins very well either. A few things like vitamin D3 and magnesium can be absorbed through the skin, so you could ask your doctor about absorption vitamin D3 drops in oil for vitamin D, and magnesium chloride oil or lotion for magnesium.

          To increase iron absorption from food, it helps to eat iron-containing plant foods together with with vitamin C. Iron from iron-containing animal food tends to get absorbed well with or without vitamin C. Also avoid taking high-calcium food or tea or antacids with iron-containing foods because calcium, tea, and antacids can reduce iron absorption.

          Other possible thoughts on iron – people who have stomach infections with Helicobacter pylori don’t absorb iron (or B12) very well, so you might want to check with your doctor that you don’t have H. pylori infection.

          Another possible cause for not absorbing iron very well is celiac disease. I mention this because people who have celiac disease are both more likely to have Crohn’s and more likely to have thyroid disease. Also, a 2013 study on genes found a connection between gene mutations involved in ankylosing spondylitis, Crohn’s, ulcerative colitis, and celiac disease. So it might be worth talking with your doctor about getting tested for celiac disease, if you haven’t done that already? (You have to be eating gluten when you have testing done for celiac disease or the tests can turn out negative even when you do have celiac disease.)

          Even if the tests for celiac disease turn out to be negative, you might still want to ask your doctor about trying a gluten-free diet, because research has found that people whose tests for celiac disease are negative may react to foods like wheat, rye, or barley with gut symptoms and also with non-gut symptoms like fatigue and trouble thinking.

          I hope some of this might be helpful for you in talking with your doctor –

  2. For those with eye-health issues there is literature documenting the role of iron overload in causing Age-related Macular Degeneration (AMD), and other retinal degeneration illnesses.

    See at the following link:
    https://www.ncbi.nlm.nih.gov/pubmed/24160731

    During a recent eye exam, my ophthalmologist informed me I had a retinal hole in my right eye. That eye exam prompted me to revisit a my most recent annual blood lab results, now two years old.

    That two year old lab showed low ceruloplasmin and high free copper levels. My MD did not alert me of the fact and I was ignorant of its significance to overall health, much less to ocular health.
    I have now requested my MD to order a full iron lab panel to discover the status of my iron metabolism, as there are several studies linking iron overload to ocular illnesses.

    • Thanks, Edgar, for mentioning MD. I’ve been on the warpath of iron dysregulation/overload/toxicity…whatever you want to call it, but your comment reminds me of a friend who has this. I need to make sure he knows about iron overload. Most people are….I know I am. ?

  3. Can high iron serum levels increase your B12 levels? I have both high iron and B12 levels. I don’t take any iron supplements and I do take B12 but not in excess.

  4. I am a 55 year old female with high ferritin 530 – nil to haemachromatosis.
    In 3 months the ferritin went up 100.
    Doctor doesn’t seem to be as concerned as I think should???
    No to venesection – i am trying to get to bottom of it all – I have been having stevi tablets rather than sugar ? Is this the the las test source of problem?
    Naro

    • Did you have dna testing? Or been refered to a hemotologist those results are high, would recommend a test on transferrtin saturation may be something else going on. Or a carrier. If you have fatigue or joint pain….. get second opinion if you can. I have hemochromatosis and I go up about that much in 3 months and have venisections.

    • N Ross,

      How are you. Ferritin that high needs to come down, for sure.

      Not sure where you are located to know how possible blood donation is for you, but anything over 50 for ferritin is not healthy. ..Please check out the Iron Toxicity articles by Morley Robbins on http://www.magman.org.

  5. It is very depressing when people do not give credit, where credit is clearly due. Chris, you should have acknowledged Dr. Douglas Kell as the source for your presentation as used his work and attempt to pass it off as your own. Its a shame.

  6. I don’t know how I missed this two years ago. Fantastic resource! Thank you so much Chris. I am a C282Y carrier with high iron levels (a pre-menopausal woman with ferritin of 230, low UIBC, iron saturation of 58%, etc.) and have been trying to find more information on iron overload issues. One thing that got me back on track with this recently is that I eat extremely healthy paleo about 95% of the time, and yet my glucose metabolism is getting worse over time. I’ve become fairly certain that I’m experiencing some level of insulin resistance, but WHY? I eat well, exercise, etc. But recently I read that iron overload is strongly correlated with insulin resistance. I’m going to start taking all the steps suggested in this video. I purchased ip6 recently, but you say it doesn’t help reduce stored iron. Many ip6 users (based on online reports) claim it has helped enormously with ferritin levels. Shouldn’t lowering iron levels in the blood prompt stored iron to be released (which could then be removed as well)? I would love to see more articles on iron, and especially its relationship to insulin resistance, as it is such a ubiquitous and challenging health issue.

    http://www.ncbi.nlm.nih.gov/pubmed/10535879
    http://care.diabetesjournals.org/content/28/8/2061.full
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0003547
    http://www.sciencedirect.com/science/article/pii/S0016508599704014

    • There is certainly debate about how exactly IP6 works. Some claim that IP6 works as a chelator, removing stored iron from the body. Others dispute this, saying that it only acts as an iron inhibitor, in other words, only by preventing your body from absorbing more iron. Whatever the exact mechanism, it does seem to lower body iron stores over time. I personally used it a supplement on an empty stomach while also undergoing phlebotmies, and ferritin dropped a lot quicker than I expected. The only other thing to be concerned about with IP6 is that it can have a similar effect on other minerals (like magnesium and calcium).

      • Thanks for commenting! I have HH and struggling with low blood sugar and mineral deficiencies (magnesium, zinc so far …but having my levels checked soon for chromium, calcium and any others that iron competes with). I was on a high protein low carb (basically paleo diet) prior to this discovery and considering taking some Registered Dieticians’ advice to limit my meat/heme iron and go semi vegetarian.

        I’ve been taking mag supplements and my iron is much lower despite my current meat consumption. But the hypoglycemia is concerning as it can be a precursor to full on diabetes.

  7. I wrote to Dr. Keith Roach and his reply to me was, “Well, based on the genetic test, you have two abnormal copies of the gene, but because you don’t have iron overload (the ferritin is the best test), you are unlikely to develop any problems. The abnormal gene mutation you have 2 copies of confers a lower risk that the C282Y mutation. Only about 1% of women with your genes will have iron overload (versus 50% of women (and 85% of men) with 2 copies of C282Y). Donating blood periodically is a good idea, since your iron levels are slightly high, so you will help yourself and others by donating.”

    • New information all the time as more is discovered and made known:

      http://haemochromatosis.org.uk/conference-2017/

      “Professor Brissot clarified that both tests are very important indeed, and that the measure of transferrin saturation is, in his view, probably even more important that the measure of serum ferritin. He explained that ferritin is the iron STORAGE protein in the body, and transferrin is the iron TRANSPORT protein – which he illustrated by using the analogy of a loaded ship moving materials from place to place. His premise was that once the transport system for iron was overloaded, excess “unbound” iron was the result, leading to toxicity and overload.

      It became clear therefore that transferrin saturation is a crucial test in the diagnosis of GH – even more so than serum ferritin which can be elevated by other factors such as metabolic syndrome, alcohol consumption, and infections/inflammations.”

      “…anyone loading iron should be regarded as haemochromatotic, irrespective of the exact genetic mutation or combination of mutations involved.”

  8. I am 43/f have an abnormal iron panel (low TIBC/UIBC; high iron serum/saturation; normal but high end of reference range for ferritin). Also have C282Y and H63D mutations for HH. Have extreme fatigue/foggy thinking at times but otherwise very healthy & active. All reading suggests donating blood helps and that avoiding vitamin c is essential. However, one DO recommended vitamin C flushes and taking 3/4 of flush dose daily and flushes weekly instead of phlebotomy. Something about converting fe3+ to fe2+ which can be used and/or eliminated. Any thoughts. Is it safe or not to use vitamin C with HH? Any more articles about HH and treatment? I don’t want to wait until my labs are even worse to take action. Thanks!

  9. great presentation!
    I’m 52 – when I was 17 they told me my iron was high.
    Consistently the blood test showed over the years iron above the reference range. Through the years had unexplained liver enzyme tests above the normal range. In my forties I learned my mom’s brother and sister had HH. That prompted the genetic test and confirmed I had 1 copy of C282Y. I started donating blood and the liver enzymes fell back within range. Unfortunately 5 years ago a false positive in the donation screening prevented me from donating at this blood bank so if I was to remove the iron I would need an order from my doctor. Unfortunately the doctor will not order the therapeutic blood draw since is is not much higher than the reference range. As I get older I am noticing other issues and I suspect the prolong iron accumulation. I’m surprised my dr will advise a baby aspirin or Vitim D tablet in the interest of general good health but wont takes measures to keep iron optimum.
    Can you direct me to where you uploaded the research references? Its great info.

    • I am in a similar situation, Jack. I have the rarest blood type, AB negative, and the blood bank won’t take my blood because they never need it. The woman at the Red Cross told me that my blood would just take up space in the refrigerator and then have to be thrown out.

      Some of us have all the luck!

  10. Chris,

    Did you know that the obesity epidemic can be traced directly to iron fortification?

    Here are the countries that fortify foods. Note the countries that fortify with iron.

    Now cross reference that list with countries that consume the most meat per capita.

    The countries that consume the most iron, through food fortification and meat consumption, are the ones that have the most obesity and morbidity. It lines up perfectly.

    Due to significant fortification increases, and increased meat consumption as the country became wealthier, iron per capita content in the US food supply has nearly than doubled since WWII (see dramatic chart in that link). The FDA started at 8-12.5mg per pound of flour in 1943. 10 years later the first images of a new obesity epidemic was published in LIFE magazine.

    The FDA raised iron fortification to 12.5-16mg per pound of flour after the War. In the 1970s they tried to raise it to 40mg per pound of flour but rescinded after outcry from scientists. Finally, in 1983, they raised it to 20mg of iron per pound of flour. 10 years later, we had the latest obesity epidemic, which is finally leveling off.

    I don’t think people realize that 50% of iron in the SAD diet comes from grains now.

    In France, the French eat twice as much wheat as we do (largely as baguettes and pastries) but they have 1/3 the obesity we do. The French do not fortify their flour with iron. Furthermore, the French consume lots of non-heme iron inhibitors (tannins, coffee, tea, dairy, legumes).

    Iron fortification also explains the Pima Indians. They were lean and thin eating lots of beans, maize and squash (three sisters carbs), but got fat and diabetic on iron-fortified carbs from the government. Their obesity appeared 10 years after the government started giving them iron-fortified flour.

    The island of Nauru is considered the fattest place on the face of the Earth. They also have among the highest meat consumption per capita. They also import much of their food from Western main trading partners Australia, USA and the UK. The USA and UK fortify their foods with iron. This is a double-whammy.

    Nearly every obesity epidemic can be explained by iron fortification and increased meat consumption!

    A few months ago, a study came out linking niacin fortification in foods to obesity. However, B-vitamins are generally non-toxic and very easily excreted. Niacin is almost always fortified alongside iron. The researchers likely blamed the wrong culprit. Note in the niacin study the charts showing a 10-year lag from food fortification increases to obesity epidemics and a 26-year lag to diabetes. The data is all there linking iron overload from fortification (or lack thereof) to all these dietary paradoxes and obesity epidemics of the world.

    For instance, it explains the Northern Ireland Paradox—a population with a great deal of coronary heart disease, but which doesn’t have high rates of the expected ‘risk factors’. Belfast has a coronary artery disease death rate that is more than 4 times higher than in Toulouse, France, despite almost identical coronary ‘risk factors’ [1][2]. Nobody knows why. It’s a mystery… But guess what? Unlike the rest of Ireland, Northern Ireland fortifies flour with Iron and France does not.

    Incidentally, iron fortification is also considered to be obsolete and ineffective for modern countries in modern societies.

    And finally, iron fortification has been found to disrupt the gut flora…

    Iron fortification adversely affects the gut microbiome, increases pathogen abundance and induces intestinal inflammation in Kenyan infants (2014)

    The effects of iron fortification on the gut microbiota in African children: a randomized controlled trial in Côte d’Ivoire (2010)

    This would explain why gluten free diets seem to be popular in fortified countries, but not in unfortified countries. (Gluten free is almost impossible to find in France). Gut flora are responsible for metabolizing and detoxifying gluten.

    Ladies and gentlemen, we appear to have a major culprit in the obesity epidemic—iron overload from fortification combined with increased meat consumption.

    • Hello- you’re the 1st person who has also made this connection about the timing of iron fortification to flour and the multiple of autoimmune disorders and obesity rising at the same time. I’ve been avoiding flour products and eating very little meat, especially red meat for about 7 years. I also donate blood. My mother passed away from complications due to Myelodysplasia Syndrome (MDS) which is a blood/ bone marrow cancer. I feel that all my lifestyle changes will help prevent/ delay a possible onset of this sad decline in quality of life. My mother originally had the autoimmune disorder diabetes 2 and I have been fighting hypothyroidism. I consider these 2 disorders “canaries in the coal mine”. A forewarning to change my lifestyle before larger disorders develop. I’m glad to hear France doesn’t fortify it’s flour. Somebody is aware! Also, another gene that predisposes one to iron disorders that is not well known is DMT1 (divalent metal transporter 1). It is more prevalent in Polish people and other Eastern European populations. The “divalent metal” that is transported includes “ferrous divalent iron compound (+2 oxidation state)” which is the “ferrous sulfate” that is fortified or “enriched” in flour, flour products and “enriched rice” also. Many, many Northern Europeans are predisposed as mentioned on this web page to hemachromatosis and fortification of flour and rice have been exacerbating the problem and autoimmune disorders for our generation for the last 60 years. Coincidentally iron is being attributed to the recent curiously multiplying cases of the neurodegeneration of Alzheimers also. In relation, I also believe iron overload could be the attribute for the increasing rates of Autism disorders due to neurodegenerative issues and “poor ‘pruning’ of brain neurons leading to excess synapses”. The diagnosis of Autism suspiciously has also been increasing during this fortification time.

    • Also know that B6 stores in muscle! Not necessarily water soluble and ‘safe.’ It can be toxic and leave permanent nerve damage. Unfortunately, I know, and hopi g time reveals complete healing. (I became B6 toxic when I used the P5P form.)

  11. I’m a 59 year old female. My iron level was tested, at my request, during my recent annual physical. The results were FE @ 167, TRFN @ 230, TIBC @ 322, & FESAT @ 52. So, both FE & FESAT were High. My Primary Care Physician (PCP) ordered a Ferritin level and a Hereditary Hemochromatosis DNA test. The Ferritin came back normal at 30 but the Hereditary Hemochromatosis DNA test came back indicating “two copies of H63D mutation identified”.
    My PCP was uncertain about these results so he consulted with my Gastroenterologist who said, “If her Ferritin is normal she does not have Hemochromatosis”. This still left me with no action plan as to what to do about having too much iron. On my own I decided to give blood and felt really good the next day. Do I need to be concerned? What should my next steps be?

    • Margaret – I am a 40 year old female, and your numbers and lab values are nearly identical to mine. My bloodwork was done initially to investigate a relatively rapid onset of fatigue and lightheadedness (constant). As I have Celiac Disease, we tested iron, expecting it to be low, due to malabsorption. My iron was at 167, and saturation was 55%. My ferritin was within a normal range (29). but the genetic test showed homozygous H63D mutation. I noticed your post was from April, wondering how things have gone since then? I still have to talk to my doc, but my fear is with the normal ferritin level, that phlebotomies (or any sort of treatment) won’t be recommended. I’m desperate to get back to my “normal” self. Any input or follow up to your own situation would be most helpful!! Thanks!

      • Moni, I am doing great. I am voluntarily giving blood every couple of months. I feel good. I haven’t had my Ferritin or Iron test since April except when I give blood. I think I mentioned that I wrote to Dr. Keith Roach (the newspaper doc) who said that the H63D confers a lower risk than the C282Y mutation and that only about 1% of women with my genes will have iron overload. Interestingly when this all started, I had my sister and my son get tested and my son (age 31) also tested really high for iron AND Ferritin. He also has the two copies of H63D. I feel very blessed that this was discovered so my son can be monitored and treated as necessary. Hope this helps!

    • It’s possible. You didn’t mention whether your client is male or female. 305 in a female is much more significant than 305 in a male. But in either case, donating blood is a safe and easy way to bring it down and see if there is a link.

      • A Google search for severe tinnitus and iron overload is what brought me to this website. Until this past year, my hearing was excellent, with mild tinnitus occurring only when my sinuses were congested due to allergies. But now, oh my gosh, my ears are ringing so loud that I can barely hear myself think. I have to strain now to hear what people are saying, and I can’t hear the TV without turning it up way too loud for my daughter’s comfort.

        Right now, it is after three in the morning where I live and I am exhausted. But the ringing in my ears is so LOUD, it is keeping me awake! It almost makes me want to scream.

        I am four years post menopause. Twelve years ago I was told that my iron was too high. I then had genetic testing done and was told that I have inherited two identical copies of the most common gene for hemochromatosis, one from each parent. However, I was also told at that time that I did not actually have hereditary hemochromatosis, because all of my other tests fell in the “normal” range.

        Back in 2003, when the genetic test was done, I did some online research and learned that giving blood on a regular basis could prevent me from ever developing an iron overload problem. So I happily drove down to the locap blood bank, only to be told that they don’t ever need my extremely rare AB negative blood!

        Like they used to sing on the TV show Hee Haw: “If it weren’t for bad luck, I’d have no luck at all.” 🙂

        Thank you for all this information. My new doctor tested my iron a few months ago and said it was “normal.” But I am beginning to think that she doesn’t have a clue, like most doctors apparently. Because, in addition to the horrible tinnitus, my hands and various other joints ache, I am exhausted all of the time, my brain seems to be wandering around lost in a very dense fog, and I am struggling with depression and scary intrusive thoughts.

        My skin may also be bronzing, although it is hard to tell with my zillions of freckles. I actually look very fit and young for my age, but I feel extremely unwell.

        I am almost desperate enough to try doing some self phlebotomy!

        Just kidding… I think!

    • This conversation on the Healing Well link you posted is full of errors. They don’t even know what UIBC stands for. (It is NOT “unbound” iron, but “unsaturated” iron binding capacity. UIBC measures the unsaturated binding capacity of transferrin.) I am not speaking for or against supplementing lactoferrin, but good grief —that is not a valid source of info on the topic.

  12. very good information. I am starting my journey with hemochromatosis. After 9 phlebotomies am at low level and starting a every 2 to 3 month program .

  13. Even as a vegan (mostly fruits and veggies) and no supplementation (expect B12 & D) my hemoglobin stays above the minimum (12.5) while donating blood every 2 months. I now regret having consumed Total Cereal (100% iron) for many years.

    • I hear ya. I group up eating all sorts of cereal. Plus, when you figure this product has been ‘fortified’ with iron since 1941…. think bread, pasta, caje, cereal, etc. Grrrrrrrr

  14. Than you Chris for the iron overload presentation as I am now learning that my husband who has had type 2 diab. for 15 years and kept it stable with diet and supplements, now seems to have excess iron come suddenly in the lab work not too bad, but his Ferritin was 88 in the spring doctor visit, and this number had never been over 27 for years. When I saw this, I knew something was different because his hba1c and fbs were elevated too beyond anything before. Over the summer I researched a lot and found the HH factor a high risk for Irish descent families and he as that going back far. He was on iron pills for 8 years because our hematologist was treating him for severe anemia when he first got type 2. The hematologist studied him 3 years and said it must be genetic but HH never came up, this was in 1999-2003. So mid summer I took the iron supplements away! Then we had 2 months of normal readings. Then they elevated again when we tried chia seed which I found is high in iron, so we quit that. Than I found the inulin in our stevia packets were from chickory root, also high in iron and actually activated an iron transporter gene?????So we quit that brand of stevia. His readings are still mildly elevated and we are going to the blood bank next week. Adding to all of this I say we went gluten free with the Wheatbelly book in 2011, so we have been off gluten and sugar as much as we could, but got stricter with it Jan. 2014. The elevated Ferritin and diabetes higher number showed up in end of March in lab work. I am grateful that I got the paperwork to see the numbers myself as our doctor never said anything, but I felt right away the Ferritin of 88 just wasn’t good. I really think that going gluten free allowed him to absorb those iron pills a lot more plus what he was eating, like beefsteak, so I am grateful because I might never have gotten on this research path that lead me to where I am and the Web has been our salvation, providing information that I really needed. Thanks to you Chris! From Mary and Bill in Chattanooga.

  15. With straight phlebotomies of 450 ml a week my ferritin dropped 300+ points. With the same phlebotomies plus 500 mg of IP6 I dropped 1000+ points twice. One month I went up 150 points. I’m guessing that was because the blood level got low enough that the organs began to stuff off iron. My ferritin is currently at 3,256.

  16. Great source of information. I wish I could present it to the panel of doctors that is reviewing my appeal for Exjade. I know it is a medicine that wouldn’t fall under homeopathic medicine, but I’m desperate. I’ve been maintenancing my hemoch. with phlebots., for 15 years – good ferritin – but my iron saturation has remained above 90% all of that time. My doctor said it didn’t matter if iron didn’t have the ferritin to work with so I sat on it. I finally asked him so many times that he sought to pacify me with an MRI of my liver. “Damage indicadive of hemochromatosis” came back. Long story short, I can’t get the iron down even if I phlebotomize 500ml ever two weeks for months. I’m drained (literally) and exasperated. Last week I read about IP-6 as an inhibitor, today I heard about lactoferrin as a cheletor (?). Can anyone tell me if these things will do the job? Now that I’ve seen this presentation, I know what I’m in for if they don’t do the job. My insurance will only prescribe it for something having to do with transfusions. The Exjade I’m trying to get approved for costs $11K/month so my chances of getting it are slim. It

    • Just curios. Have you tried eating a plant-based diet? My husband has HH and was eating an abundance of animal based (heme iron) proteins before being diagnosed. The phlebotomist informed us she has seen patients have success when they switch to plant-based eating because the heme iron found in fruits-veggies-legumes etc is not as easily absorbed/stored. Much cheaper than a prescription! And he lost about 34 lbs in the process, which he needed to do. We’ve been plant-based for nearly 2 years and his iron levels are staying much lower now. Best of luck to you.

  17. I have really enjoyed reading more about this. I was recently diagnosed with HHC and I have 2 copies of the C282Y mutation. My ferritin levels at the time they were considering admitting me to the hospital were over 2,300. At the same time my HGB was only 9.1… As it turns out, I now have stage 4 liver disease. The joint pain is horrible and my sleep patterns are very disrupted. Nose bleeds are common for me as well and the phlebotomies leave me VERY tired. Chronic fatigue is probably the most upsetting to me. I have a wonderful hematologist at the Cancer Care Center in San Antonio, Texas and a large transplant team at the Texas Transplant Institute. I work for an Internest and I also have a GI doctor in San Antonio that is great. There is not a plethora of information easily available but if you are continuing to research, I would highly recommend the CDC website http://www.cdc.org and the Iron Disorders Institute at http://www.irondisorders.org . Also, I read The IDI Guide to Hemochromatosis, 2nd ed and have found many stories from people who have dealt with this. If you are on facebook, there are also a couple of “Closed Groups” for people affected by these diseases and talking to them has been a great support system for me! Good luck everybody!

  18. Doing trend testing on my iron parameters caught a life threatening disease in me. If you do trend testing and are supplementing with iron, I recommend a non-fasting iron panel after 30 days then 5 day fasting of iron supplementation and C panel. If Ferritin decreases materially and Transferrin increases, this most likely indicates you body still needs more supplementation of iron as it was assuming the iron would keep coming in at the supplementation rate. TIBC and UBIC will be medium to high as well. I am posting this since there seems to be not much of how-to out there.

  19. Great to find your presentation, Chris.

    I found out this year that I have genetic hemochromatosis (homozygote, C282Y, chromosome 6) after entering into emergency with congestive heart failure. I’m a 54 year old male who had not been to the doctor in years (decades). My Ferritin level upon entry was 26,205. Today I’m around 5,200. I have 2 phlebotomies per week of 250 ml.

    I discovered your presentation when I Googled hemochromotosis & Paleo. You were #1.

    I enjoyed everyones posts which are giving me some leads in which to explore further. Thanks!

    • ifinally found a doctor,who found i have high iron.their measure units only go to 1650,so they dont really know how high my iron really is. giving blood weekly but still no change.

  20. HI Mary it is not likely that platelets donation would lower Ferritin levels with any significance, as Ferritin is part of the iron stores in red blood cells, JTB

  21. Can Regular Double red donation be a cause of very low Ferritin, my iron was good 12.9 this past time before donation. I went on to have my blood tests and found my Ferritin to excessively low at 6. Suggestions anyone, JTB

    • Correction on the 12.9 that is hemoglobin not iron, but my Ferritin is at 6, and I have ruled out internal bleeding, and other internal anomalies. I am beginning to think there might need to be safeguards regarding checking ferritin levels in regular blood donors, as this might become an issue, as the blood banks are starting to be more aggressive about getting donors to donate double red (ALYX Donors). I am still looking for information regarding this topic please… JTB

  22. Just a bit of interesting data, I had some blood tests done for an entirely differetn reason but it showed up that my serum iron and transferrin saturation were high, so my doctor requested genetic tests and it turned out I have one copy of the C282Y gene (not too surprising, I’m Irish and about 20% of Irish people have one copy!).
    Normally with just one copy you would only be a carrier, it can cause a slight elevation in iron levels but not usually anything much to worry about and wouldn’t normally be treated.
    It was a bit of a puzzle as to why my iron was significantly high. I had noticed that on some of my blood tests my lymphocyte count was a bit low, I asked was there some correlation with the iron and was assured there wasn’t but I thought I’d check it out myself and found some studies that showed there is a correlation and that people with one copy of the gene but also have a low lymphocyte count have much higher iron accumulation than those with a normal lymphocyte count and that the low lymphocytes may be a marker for another genetic mutation that together with teh one copy of the haemochormatosis gene will cause iron overload.
    I brought one of the studies to the consultant I saw and he was quite sensible, he explained that there’s a lot we don’t yet know about iron overload and that although having one copy didn’t usually cause a problem, in my case my iron was pretty high and although my ferritin was in the normal range it should be kept an eye on and he prescribed a blood test every 6 months from here on out.
    He also said that it might explain a whole family that he was treating who all only had one copy of the gene yet all had quite severe iron overload and said he may test their lymphocyte levels to see!

    • Exactly the same here, though my lymphocytes are in the low, but still normal range–same with ferritin. Same hetero C282Y… Saturation % high and serum iron total is over lab range…. and the was after two blood donations. (August and October; December labs)

      Watching it, though my Dr said nothing at follow up appointment. Dr doesn’t know what I found on 23andme raw data about the hetero C282Y…..

  23. I’m so thrilled that I found your blog Chris. I’m a holistic nutritionist and this is exactly the information I needed to help a client this week. Keep up the excellent work, you are one of my trusted experts.

  24. I have the gene mutation for hemochromatosis that I inherited from my mother. I was diagnosed at 24 years old with a ferritin level of around 432. I am now 25 and 4 months pregnant. My hematologist and OB both suggested I find prenatals without iron in them. Luckily I did. I only take half the dosage I’m supposed to since I know supplements are bad for my liver.

    Before I was pregnant I had two phlebotomies, but I don’t know what my levels got to. (My doctor never told me.) Since I’m pregnant now she has put me on monitoring status and decided to not take any of my blood. She expects that the baby will suck up my excess iron.

    Although I do feel guilty for possibly passing on the mutation, I am doing fine in my pregnancy. I don’t eat meat everyday, and I’ve been sticking with soymilk and beans for my protein. I also don’t feel anemic. I avoid alcohol (obviously), cast iron skillets, and Tylenol. Next month I’m due to see my hematologist so I’ll see how I’m doing.

    I’d also like to mention that my mother had two successful pregnancies with her hemochromatosis. She didn’t take prenatals with me or my sister. She also wasn’t diagnosed until she was 38, long after we were born. My sister is a carrier for the gene, whereas I have the full-blown disease.

    • Hi, I am 8 weeks pregnant and have HH and the same question. Can you email me and tell me the outcome of your pregnancy and what your docs advised? smegmurf at gmail dot com. Thank you!

      • Meghan,

        I felt better when I was pregnant, I took some prenatal vitamins during 4 pregnancies and have 4 healthy kids non HH. I guess I was the lucky one in our family. My brother and sister were negative. My ferritin was over 3000 and after 7 years of phlebotomist my ferritin is at 44. Good luck god bless 😉

  25. Hi Chris,

    My issue is unique:

    My ferritin was tested as 20, and after 3 months of iron supplementation, my iron saturation got to an above-normal range of 58% and ferritin at 26. I’m not too sure what low ferritin and high iron saturation level means. Could you explain this? I stopped the iron supplementation after seeing the high saturation, and am now at 48% saturation and 27 ferritin. What actions should I be taking to ameliorate my low ferritin?

    Thanks,
    Francesca

  26. Thanks so much for this Chris, not a lot of information out there on this serious issue!
    One thing that I can’t figure out is what does the issue of hemochromatosis mean DURING a pregnancy. I understand we need a good dose of iron to create the 40% boost in blood volume that occurs during gestation, so part of me thinks that this moderate elevation will take care of itself during the pregnancy and sort of act like internal blood donation and bring iron levels down to a healthy normal during pregnancy. The other part of me worries that having naturally high iron/ferritin levels will result in a bigger build up of iron as blood supply grows and will lead to gestational diabetes and oxidative stress on the pregnancy. What are your thoughts on this issue? Generally blood donation during pregnancy is not recommended, but in this situation is regular donation advised? What protocol do you recommend to someone trying to get pregnant or already pregnant with this issue? Thanks much for your time! Appreciate all that you do.

    • I too have this same enquiry regarding pregnancy and iron overload. I have the C282Y homozygous gene and prior to my pregnancy I never had to have a phlebotomy. I would get tested every 3-6 months and it was always generally within normal range for someone with heamochromatosis.

      I am 38 years old and knew issues would likely arise after menopause but did not expect what I am now experiencing.

      Since having my child 4 months ago I have started to experience significant fatigue and terrible arthritic symptoms throughout my entire body, particularly my hands and feet. It turns out that my saturation levels are high and so I have to start doing regular phlebotomys to reduce my levels. My doctor is starting me on once a month for perhaps 3 months and then possibly a regular red cross arrangement.

      The only significant change in my life is pregnancy so am I right to assume that pregnancy can affect a person’s iron overload to this extent given menstruation doesn’t occur for approx 9 months or possibly more if breastfeeding?

      Thanks so much for this presentation as well. It is frustrating to have a condition where there is little information considering it can have a significant impact on one’s well being long term and how to best manage it.

      Jules

  27. Was interested to come upon this when googling the title of my paper: Kell DB: Iron behaving badly: inappropriate iron chelation as a major contributor to the aetiology of vascular and other progressive inflammatory and degenerative diseases. BMC Med Genom 2009; 2:2. It and others may be downloaded for free from http://dbkgroup.org/publications

  28. Thank you Chris,

    Another great article!
    I have been on paleo diet for two months now (feeling great, lost 10% of body weight). I have H63D gene, so better get iron test done in a few weeks time. I wonder if there will be any change..

  29. Thanks very much Chris,
    This is an excellent presentation of a major health problem that’s been continually neglected by a medical community sworn to pharmaceutical cures. We also thank you on behalf of Dr. Weinberg and all of us at Iron Disorders Institute.

  30. This was an excellent presentation on iron. That’s why I was doubly disappointed and offended to see you using the Torah scroll, the most sacred text in Judaism as a joke or worse. I would really like to know why you would do such an anti-judaism thing. Imagine using the crucifixion or a koran as an illustration to the joke, “Iron behaving badly”.

  31. Chris,

    Excellent presentation. I watched it at least 3 times (I’ve been slightly obsessed with the iron issue, if you can’t tell). Like I said in another comment, I lowered my ferritin levels from 440 to about 120 in about seven months both through blood donation and use of IP6. IP6 seemed to work in my case, as my ferritin lowered quicker than would be expected from blood donation alone, but I guess this could be due to the blocking of iron absorption, and not actual chelation (or possibly some other factor I missed). I would be interested to see the studies that showed lactoferrin was an effective chelator. I could find plenty of people on the internet singing the praises of IP6 (all anecdotal), but nothing, anecdotal or clinical, on the use of lactoferrin.

  32. This is a very informative article, Chris! I just researched about this rare disease and I find it interesting. The study that anyone can get this disease is more interesting.

  33. Chris,
    Is there any other way of getting iron out of the blood, they won’t let me donate blood d/t heart defect and when I’m in the hosp dr’s usually tell me I’m anemic and give me more iron. I’m almost done with menopause at age 54. I’ve had numerous blood tests, do they always test for ferritin level?

  34. I have the C282Y gene. Diagnosed ten years ago by a hematologist. My ferritin was over 1000 but After 50 phlebotomies, I finally got my ferritin down to 10. My doctor retired and since then no doctor I have seen knows anything about hemachomatosis. I get a phlebotomy once in a while when my ferritin climbs again and I try to keep it under 50.
    Does the fact that I have hemachomatosis and have phlebotomies have any thing to do with my aching and inability to sleep?
    Your site is by far the most helpful information I have found, and I am deeply grateful.
    I would like a hard copy of the video to keep and refer to.

    • I cannot bring the presentation up on my computer. If you happen to come accross it, I would very much appreciate knowing where you found it. I too have genetic hemochromotosis on the high end

  35. Chris,

    Thanks so much for this information. Just found out recently that my husband has one mutation of the HFE H63D gene. His total Serum Ferritin was over 300, high normal. When he went to give blood, he was told his hemoglobin is low (14)… which puzzled us. What would be some of the causes of High Serum Ferritin and low hemoglobin?

    Thanks!

    • Maria,

      The accepted range for hemoglobin for adult males goes from 14-18. So, while your husband’s is in the lower level of that range, it’s still within the “normal” range. The minimum hemoglobin to donate blood (at least in California) is 12.5. So this “low” level sounds like the opinion of the nurse at the blood donation center, maybe in comparison to other levels he or she has seen. When I’ve given blood, hemoglobin is the only iron related number they’ve ever checked.

      There are conditions that can create low hemoglobin (anemia) in the face of high iron levels. Low levels of B vitamins such as B12, B6 and folate are probably the most common. It can also be present in more serious conditions where the body has problems making hemoglobin, but this is mostly due to multiple blood transfusions, at least the way I understand it.

      • John,

        Thanks so much for the response and great info… interesting about the B vitamins, very possible. I also heard that it may be caused by a low thyroid, so we’re getting that checked out.

  36. Finally I have the answers as I was told ‘not to worry about it’ when tests showed I have 1& 1/2 genes. My ferritin levels were 2,000 post surgery & 10 units of blood via transfusions. Then a second brother died from Hemochromatosis & I wondered. Again doctors said no worries, no treatment. I finally demanded phlebotomy 3 mthly & my ferritin is now considered ‘normal’ at 200. Can’t win in Australian rural areas. No doctors know a thing about this disorder. Now I have morbidity, lung issues, high cholesterol so doc offers statins. From your video clip I see that 200 is still a problem & thyroid symptoms are probably the blood condition also. All bloods for liver & thyroid are ‘normal’. Many people like me will die unless we find our own answers. I am sorry the clip does not come in hard copy for non US citizens & it is a brilliant coverage of a mostly ignored condition in Australia. Thank you very much.

  37. Hi Chris,
    I have high levels of Iron (with supplementation), but very little Ferritin (3 – 4). Binding capacity is really high too. Doctors are scratching their heads. I’ve been grain free for over 3 years. Any suggestions?

  38. As a raw vegan, my ferritin dropped to 4. But so did my happy neurotransmitters, and I landed myself in deep trouble with depression. Back to beef, and now within 2 years I am Type II diabetic. My daughter has PCOS. I am a living example of what Chris defined! Thank you for an excellent presentation and for providing me with a starting place. As a woman now in menopause, I no longer have the automatic reset button of menstruation. My blood sugar problems began at menopause. Wish me luck!

  39. Hi Chris,

    Loved your presentation. I am 63 and have had a ferritin level of 400 or better for several years that I know of. I have every symptom you mentioned. Its getting worse and worse. Some days I can barely function. I live in Tucson Arizona and cannot find a doctor that seems to know anything about high ferritin. Do you know of any doctors here you could direct me to? Should I simply try to donate blood?
    I would greatly appreciate any help you can give me
    Thanks Marilyn

    • Hi Marilyn,

      I had a similar ferritin to yours back in December (it was 440), and as soon as I found that out, I started donating blood immediately. I got it down to about 120 with Blood Donation and some IP6 supplementation (I want to get it under 80). I personally didn’t look for a doctor, but I did monitor my iron levels and researched the issue. I wasn’t really experiencing any symptoms, except maybe fatigue. Anthony Colpo shared how he lowered his iron on his blog, which I kinda mimiced myself. You could look up his protocol if you decide to “Do it yourself,” or you could take it to a doctor and ask about theraputic phlebotomy. “Exposing the Hidden Dangers of Iron” by E.D. Weinberg is also a great resource. You can donate blood at a local hospital or the Red Cross without going to your doctor first. You may even want to call a blood donation center and see if they know any doctors that prescibe phlebotomies and are aware of the iron overload issue.

  40. One thing to make sure of here is that too- little iron and/or too-low ferritin levels can also be dangerous. Women are especially prone to low iron levels or low iron storage. This is even more true for menstruating women. It is rare for a woman to have too much iron. Ways to increase iron include: eating more (grass-fed, antibiotic and hormone-free) red meats and organ meats, dark green, leafy vegetables, and some nuts and seeds; cooking with a cast iron pan; or taking a low-dose, high-quality iron supplement. Taking Vitamin C with your meals can enhance iron absorption. Heme iron, which comes from animal proteins, is more effectively absorbed by the body than non-heme iron, which is found in plant foods. Your doctor can order iron tests as well as ferritin levels. These are simple blood tests.
    Men or woman who have too high levels of iron can donate blood to lower their levels.

    • “Women are especially prone to low iron levels or low iron storage.”

      SOooooo not true! Look at the full iron panel.

      • As Sunny says – look at the full iron panel!
        I have been put on iron pills (100 mg/day) on and off for whole of my life – only because of low hemoglubin levels. The last period of supplementing (by the diabetes doctor) was a 8 years long period – and not ever the hemoglubin levels got good- bearly above the lowest “normal range”.
        When, at last, at least Ferritin was checked- it was 361.
        During the past year I have requested the whole iron panel and my Hemoglobin have always been just above the lowest range in the same time when Ferritin has been 250-300 and serum iron between 10-22 (referenge range beeing 9-32), saturation between 17-28% and TIBC the same: 53-58 (ref. range 40-80). I have also gotton Hepcidin level that showed: 3,2. Hepcidin beeing the iron regulator hormone.
        So, if the doctors only take Hemoglobin- it tells us NOTHING! Low hemoglobin actually could demonstrate high iron levels in tissues!
        But – there are also B vitamines – they too affect body iron!!
        If the body is deficient on B12 and you start supplement on B’s- your blood irons will go down. I was pussled by my iron levels dropping so fast but then I found out that it is normal to happen after supplementing with B12 after being deficient on it.

  41. I just started donating my blood at a hospital that takes blood from patients with iron Overload. They can take two units of red blood cells at a time because they give back your plasma while you are donating. Iron is bound to the red blood cells, so you can lower your iron levels by removing red blood cells. The previous hospital I was going to was throwing by blood in the trash as part if my weekly treatment. I’m glad I found a hospital that is willing to take my blood.

  42. Hey Chris,
    I’ve been giving blood regularly for some time now. I am always asked if i want to give whole blood or plasma or just red blood cells. Is there a better method of giving blood for Iron overload than just Whole blood?
    Thanks
    Dutch

    • According to the book “The Hidden Dangers of Iron,” Double Red Cell Apherisis takes out twice as much iron as whole blood donation. It basically takes out twice the red blood cells, and returns plasma and other fluids to your body. Double Red Cell donation does take longer (like donating plasma), as they are returning fluids to your body. Blood Donation centers won’t even offer it to you unless your hemoglobin is high (I think about 16.0 g/dl), and I believe you have to wait 16 weeks instead of 8. Unless, of course, you have a doctor’s prescription for a phlebotomy or Apherisis.

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