At 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.
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I have a client with tinnitus with ferritin of 305. I was wondering if there could be a link between the two. Thanks.
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!
Sounds like B12 deficiency
I wonder if the iron lab (s) were the full iron panel or what? This is an old post. 🙁 Hope you’re OK.
Everyone, make sure it’s a full iron panel.
Thank you for this excellent info. Here is a caution.
Dangers of Lactoferrin/ Apolactoferrin
Please Read this healingwell.com post and be informed.
Lactoferrin may not be good..big increase to serum Iron.
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.
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 .
thanks for all the information I have 2 copies of c282y
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
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.
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.
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.
Sorry, that should read *non-heme* iron in fruits-veggies-legumes etc 😉
What is the blood panel that you run on all your new patients?
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!
Such a great presentation! Thank you!
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.
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.
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
Chris, do you know when you only donate platelets does your ferritin level go down (lowers)?
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
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…..
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.
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!
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 😉
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?