Welcome to Resiliency Radio with Dr. Jill Carnahan! In this episode, we dive deep into the topic of iron overload and its impact on our health. Joining us is the brilliant Dr. Christy Sutton, who will be sharing everything you need to know about this often overlooked condition.
Key Points
- Hemochromatosis and iron overload are common and should be screened for by physicians
- Symptoms of iron overload can vary and be multi-system in nature
- A case of alopecia related to iron overload and treatment success
Our Guest – Dr. Christy Sutton
Dr. Christy Sutton, lives and practices in Dallas, Texas. She is an author, teacher, and clinician. She is a pioneer in the world of natural health, genetic testing, and nutrigenomics. She works to make complicated topics easy to understand, and promotes a realistic, hands-on approach to conquer and avoid health challenges. She created the Genetic Detoxification report and wrote the groundbreaking books The Iron Curse and Genetic Testing: Defining Your Path to a Personalized Health Plan. Currently, she teaches cutting-edge Labrogenomics educational workshops, which bring depth, insight, and clinical pearls to creating personalized health plans.
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Dr. Jill Carnahan, MD
Dr. Jill Carnahan is Your Functional Medicine Expert® dually board certified in Family Medicine for ten years and in Integrative Holistic Medicine since 2015. She is the Medical Director of Flatiron Functional Medicine, a widely sought-after practice with a broad range of clinical services including functional medical protocols, nutritional consultations, chiropractic therapy, naturopathic medicine, acupuncture, and massage therapy.
As a survivor of breast cancer, Crohn’s disease, and toxic mold illness she brings a unique perspective to treating patients in the midst of complex and chronic illness. Her clinic specializes in searching for the underlying triggers that contribute to illness through cutting-edge lab testing and tailoring the intervention to specific needs.
A popular inspirational speaker and prolific writer, she shares her knowledge of hope, health, and healing live on stage and through newsletters, articles, books, and social media posts! People relate to Dr. Jill’s science-backed opinions delivered with authenticity, love and humor. She is known for inspiring her audience to thrive even in the midst of difficulties.
Featured in Shape Magazine, Parade, Forbes, MindBodyGreen, First for Women, Townsend Newsletter, and The Huffington Post as well as seen on NBC News and Health segments with Joan Lunden, Dr. Jill is a media must-have. Her YouTube channel and podcast features live interviews with the healthcare world’s most respected names.
The Podcast
The Video
The Transcript
202: Resiliency Radio with Dr. Jill: What you Need to know about Iron Overload w/ Dr. Christy Sutton
Dr. Jill 00:00
Hey, guys! I am so excited to announce that the movie that you've been waiting for, the documentary Doctor/Patient, is now available for rent or purchase at DoctorPatientMovie.com. Check out the trailer here.
00:13
Dr. Jill: When I really knew something was wrong, was when I started having trouble walking up the stairs. I was supposed to be grateful and happy and healing and well and thriving, but I did not feel that way. I was so sick. Like always, I wanted to find an answer, and I had to figure it out. And I had to figure it out to save my own life. So I dove in.
00:38
James Maskell: Jill is the leading voice in biotoxin illness and chronic conditions that are driven by toxicity.
00:43
Bree Argetsinger: Oh my gosh, you're dealing with mold? You have to work with Dr. Jill Carnahan.
00:47
Patient 1: Dr. Jill is the first person that actually began to shed some light on the problem.
00:53
Dr. Jill: What I do is listen to the patient, and we together talk about what else is possible.
00:59
Patient 2: I don't know why I'm crying.
01:02
Patient 3: She saved my life.
01:06
Dr. Jill: The deepest lessons and most profound insights come in the suffering, come in the dark moments. Self-compassion is the healing transition that shifts something inside of us. It's actually the thing that we need most in order to heal.
01:26
Narrator: Doctor/Patient—available now at DoctorPatientMovie.com.
Dr. Jill 01:41
Welcome to Resiliency Radio, your go-to podcast for the most cutting-edge insights in functional and integrative medicine. I'm your host, Dr. Jill, and with each episode, we delve into the heart of healing and personal transformation. Join us as we connect with renowned experts, thought leaders, innovators, and those who are at the forefront of medical research and practice, empowering you with knowledge and inspiration and aiding you on your journey to optimal health.
Dr. Jill 02:09
Hey guys! If you've been around me at all, you know my movie, the documentary Doctor/Patient, is now out. I just have to mention this because so many of you have been giving me feedback about how it's inspiring and transformational. I want to be sure that for those of you who have not yet seen the movie—DoctorPatientMovie.com—you can gift it, rent it, buy it, and pay what you want. But I hope you enjoy that, and I would love to hear your feedback after you've had a chance to watch it.
Dr. Jill 02:35
All right, today I'm super excited to have a special guest, Dr. Christy Sutton. She lives and practices in Dallas, Texas. She's an author, teacher, clinician, and pioneer in the world of natural health, genetic testing, and nutrigenomics. She works to make complicated topics easy to understand and promotes a realistic, hands-on approach to conquer and avoid health challenges. She created the Genetic Detoxification report and wrote the groundbreaking book that we're going to talk about, The Iron Curse and Genetic Testing: Defining Your Path to a Personalized Health Plan. Currently, she teaches cutting-edge labrogenomics… I haven't heard that word. I love it.
Dr. Christy Sutton 03:12
I made it up. [laughs]
Dr. Jill 03:13
I know. I'm like, ‘Whoa!' …educational workshops that bring depth, insight, and clinical pearls. And today, we're going to talk about iron. Before we dive into the topic, Christy, tell us a little bit about your journey. I know you have a very personal story. How did you really get into this? What led you to write the book, The Iron Curse?
Dr. Christy Sutton 03:31
Great, thank you. Personally, I have struggled with low iron issues, from digestive issues, primarily, and then just being a female menstruating—all of that stuff that causes low iron. I've always been interested in looking at iron levels and would early in my practice run labs, including all the full iron panel, and would occasionally see people that had high iron. I would usually say: “You should go donate blood.” I hadn't really thought through it fully, but I recognized it and I thought I was addressing it. But I didn't truly understand what it meant and how to identify why and manage that until I married a man who had undiagnosed hereditary hemochromatosis, which is where you have a gene that causes you to have increased iron absorption.
Dr. Christy Sutton 04:32
I knew that he had problems with high iron before identifying the issues with the gene because he would bring home labs from his primary care doctor. He would have high ferritin, somewhat high liver enzymes, high hemoglobin, hematocrit, and red blood cells. Things were not in a good place, but the doctor never said anything about it. But I would tell him: “You need to donate blood.” “You need to donate blood.” But we didn't have a regimented plan for monitoring and managing.
Dr. Christy Sutton 05:08
It wasn't really until the liver enzymes kept creeping up that we finally went through the process of getting him properly diagnosed and treated. He got diagnosed and treated much earlier than he would have had we not been proactive. But it was our own volition. He was being completely ignored by his primary care medical doctor.
Dr. Christy Sutton 05:32
We started at the gastroenterologist. Well, I should back up. I realized we really needed to take a different course. Also, when I was writing my first book—the Genetic Testing: Defining Your Path to a Personalized Health Plan book—and creating that genetic detoxification report that goes along with the book, I realized that he inherited a hemochromatosis gene. Then I was like: “Aha moment! This is why my husband has problems with high iron. It's not just because he's eating red meat. We eat red meat at a normal rate, whatever that is, but not excessively. We're not like carnivores who only eat red meat. So then I realized: “Aha! He's got this gene.”
Dr. Christy Sutton 06:17
We went to the gastroenterologist, and I gave him all the labs. At this point in time, I had ordered some extra labs to try to get a better picture: What's going on? Why is he not feeling well? Why is he tired? Why are his liver enzymes high? The gastroenterologist listened to me and I think he didn't really buy into what I was telling him as far as the iron and hemochromatosis. This was a while ago. I think this was probably 2016 or so. I was a much younger clinician and I was still a little bit more standoffish and wasn't really as confident.
Dr. Christy Sutton 07:05
The gastroenterologist decided to go through all the diagnostic tests that he runs, understandably so. We got misdiagnosed with autoimmune hepatitis. He was going to let us have that misdiagnosis for a year. The only reason we got unmisdiagnosed was because I ordered extra labs, which came back negative. And they were like: “Oh, that was a misdiagnosis. Liver enzymes are getting worse; smooth muscle antibodies are negative.”
Dr. Christy Sutton 07:35
Finally, the gastroenterologist circles back around and says: “Okay, wait. The ultrasound says you have mild fatty liver. You're just overweight. You need to lose weight and eat better. But I'm going to refer you to the hematologist because you have high red blood cells, and I think you have polycythemia vera, which is a genetic issue where you make too many red blood cells.” Now, he didn't have polycythemia vera. They did the genetic testing at the hematologist. But as soon as I gave the hematologist the labs and the genes, he was like: “Oh, this is easy. Hereditary hemochromatosis. We're going to rule out polycythemia vera. But this is hereditary hemochromatosis.” And he looked at the whole picture and said: “Okay, this is probably why his testosterone is low, his liver enzymes are high, his DHEA is high, and his cortisol is high. So we're going to get him treated for this, and probably all of that's going to get better.” And it was like, “Oh, thank God!”
Dr. Christy Sutton 08:30
So then we get him treated for hemochromatosis, and he does improve greatly. But his DHEA and cortisol are still high, and it's like: “Why is that?” “Well, we don't know.” I had attributed it to stress, maybe high iron—typical things—because it would go high and then back to normal and then high. So then we get referred to the endocrinologist, and that's where we discover that my husband has a pituitary tumor. The pituitary tumor was secreting ACTH, causing him to have high cortisol.
Dr. Christy Sutton 09:08
The interesting part of that story is that [during] the initial visit with the endocrinologist, I give her the whole spiel, and at this point in time, I'm realizing I have to give the medical information because my husband doesn't know what to say. Because he doesn't know what to say, the doctors may not be getting the right information. So I let my husband give his information, and then I was like: “Okay, so this is what's going on.” I ended that debriefing, for lack of a better word, with: “And I think my husband has Cushing's disease,” because I raised up his shirt and he had like these little striae, which happen. My husband had always said that they were stretch marks from when he gained a bunch of weight in college, and then he lost the weight. He had this big anxiety attack in college where he gained all this weight and then eventually he lost the weight and got put on anxiety medications.
Dr. Christy Sutton 10:04
When I told the endocrinologist, “I think he has Cushing's,” she was like: “No, he doesn't look like someone with Cushing's.” He was overweight, but not overweight like Cushing's—you know, all bloated—although he got bigger and bigger with time. Interestingly, his blood sugar was totally normal. People who have high cortisol—Cushing's [disease]—tend to have high blood sugar because cortisol increases blood sugar. So his hemoglobin A1C was in the fours. He's always had normal blood sugar, so he was a very atypical case. Again, they said: “Oh, we caught this so early.” In my mind, I'm like: “I don't know that we did. I think this started in college.”
Dr. Christy Sutton 10:44
I guess where I really started putting the dots together was when I was researching for The Iron Curse. Even having lived through seeing my husband have this, getting much more sophisticated at diagnosing this in patients, and realizing, “We have an epidemic of undiagnosed hemochromatosis,” I was shocked by the number of health problems that hemochromatosis can cause. One of the things that it can do is damage the anterior pituitary gland. We know it creates a lot of oxidative stress throughout the body, but it really can damage the anterior pituitary gland. It doesn't damage the posterior pituitary gland. The place where my husband's tumor occurred was the anterior pituitary gland. I think my husband just had high iron, oxidative stress, and low free radicals—the perfect storm—and that allowed this tumor to grow. Eventually, he got the tumor removed. And then he got the tumor removed again. Hopefully, that chapter is behind us. Ask me in a couple of years, and I'll tell you. So that's my introduction.
Dr. Jill 11:55
What a story! And it makes so much sense. First of all, I'm conventional-medicine trained. I know how my colleagues and even myself are trained. Your story is not unique. And I'm sure listeners can relate. And let's start here, because this is one really important thing. Then I want to dive into hemochromatosis and [consider]: How could it look? What are the symptoms and signs? And how could someone who might fear that they have this get tested?
Dr. Jill 12:19
But before we do that, there's something that happened to you. I want to talk about this because it's not uncommon. It's almost like medical gaslighting, where you come in with a real concern—like you, the spouse—and I can see most roll their eyes, shrug, put their arms in front of you, and are like: “Oh, whatever. You're jumping to conclusions.” But the truth is, the patient, and especially their spouse and their loved ones, know. They know. And it's the same as a parent bringing a child in and saying: “Something's not right with my baby. Something's not right with my child.” I've heard that over and over and over again. And later they find out the mother knew, just like you as a spouse knew.
Dr. Jill 12:58
You said the thing that is so relevant too is that in the beginning, you weren't an advocate for yourself because you were a little unsure. I've been that way too in a doctor's office, and I'm a doctor. So let's talk just a little bit about that. What advice would you give someone who has a real concern? There's “Dr. Google” now, so some people come in and their concerns aren't real, and then you want to listen. But how do you find an advocate in a physician who will listen and take your concerns seriously?
Dr. Christy Sutton 13:24
It is so hard. It is so hard. I was medically gaslit today. [laughs] I think you have to go in prepared. You have to get second opinions. You have to go in with a list of questions. You have to stick to your guns. Don't be afraid. But it's very easy to get afraid and intimidated, especially in a medical office. Even me, having a reasonable medical understanding, I will still sometimes get intimidated, like: “Oh, maybe you are right. You are the expert.” And then I often go back and realize like: “Oh, actually, they were not right. I was right. I should have listened to my gut.” I think you really have to get second opinions. That is hard because we live in a world where it's hard to get that first opinion—to get in with the expert and then get the imaging and the testing.
Dr. Christy Sutton 14:34
What really is disturbing is not just the initial gaslighting, but what I'm seeing a lot of—and this is the case not just with the iron labs but with imaging in general—is that they'll get imaging that shows something is wrong, but they'll still dismiss that as like: “Oh, well, that's a normal anomaly.” It's like: “Well, I'm having symptoms related to that specific part of my body that has a normal anomaly. Can we talk about that?” “You're fine. Take aspirin.”
Dr. Jill (pre-recording) 15:03
Hey, everybody. I just stopped by to let you know that my new book, Unexpected: Finding Resilience through Functional Medicine, Science, and Faith, is now available for order wherever you purchase books. In this book, I share my own journey of overcoming a life-threatening illness and the tools, tips, tricks, hope, and resilience I found along the way. This book includes practical advice for things like cancer and Crohn's disease and other autoimmune conditions, infections like Lyme or Epstein-Barr, and mold- and biotoxin-related illnesses. What I really hope is that as you read this book, you find transformational wisdom for health and healing. If you want to get your own copy, stop by ReadUnexpected.com. There, you can also collect your free bonuses. So grab your copy today and begin your own transformational journey through functional medicine and finding resilience.
Dr. Jill 15:59
It's so true. I love the things you shared, even [things] like making a list, sticking to it, and getting your questions answered. What I think was really powerful for you… And I've seen this as we did the documentary and followed patient stories: One of the key stories there was [of] a patient who had been suffering and gaslit for almost 20 years—his wife ended up being his advocate, just like your situation—where he wasn't able to advocate for himself. Maybe you can bring someone with you to take notes or ask questions—and I love that—because then, together, you can kind of have this camaraderie of the information.
Dr. Christy Sutton 16:30
Yes. And if you can bring somebody who has a medical background, that can be very helpful too.
Dr. Jill 16:37
Yes. So thanks for sharing that story. And it's so interesting because I experienced this too: It's unfortunate for your husband and your experience, but the beautiful thing that came out of it is your deep understanding and knowledge, the book that you've written, and educating people.
Dr. Jill 16:50
So let's talk about hemochromatosis. There are two genes they standardly test. You and I know there's a lot more, so you can talk briefly about that. But I'll just tell a quick story because I've had a patient—she was about 14 when she came in—who had alopecia totalis. That means hair loss—the whole entire head. It turns out—we did a big workup, and I, like you, check everybody's iron and sometimes genetics—she ended up having hemochromatosis and that was the cause of her hair loss. She's actually growing her hair back now that we've treated it. It's pretty profound because it's one of those things that, unless you were looking for it… Even me, I want to be a great doctor, but sometimes you don't think of those things. But I do check everybody's iron and I do check the genes if the iron is high.
So let's go to symptoms. This can affect so many organs. Can you give us a glimpse of what they might be experiencing if they should ask more questions or get their iron checked?
Dr. Christy Sutton 17:42
Absolutely. I was also just thinking about: Where do people typically go when they have hair loss? They often go to a dermatologist. Dermatologists don't do iron labs. They're not even looking for all of the possible causes, which is why this idea that we can compartmentalize health into, “This is my area of expertise, this is what I do,” and then, “You do that,” it's like: “Well, the body doesn't care.” We all have to be really good regular general practitioners and look at the whole body. Unfortunately, somebody—I can't remember who it was—said: “Doctors are becoming so specific and know so much about one thing that they end up knowing everything about nothing.” I think that that's true, especially with some of these really specific experts.
Dr. Christy Sutton 18:44
Back to your question, which is a very good question: What are some of the symptoms that you can look for? [For] a lot of the symptoms, you don't even want to wait until you have them because the earliest symptoms are on labs, and those show up before you have physical symptoms, which is why everybody needs to get thorough lab testing that includes an iron panel every single year at a minimum. Because 30% of the population has a hemochromatosis gene, I think that's a high enough percentage of the population that we just screen people—at least Caucasians, just because it's in a higher amount in Caucasians. But I've seen that gene in all different ethnicities because the Viking and Celtic ancestors have gotten their genetic pool throughout the world. So labs are the key for diagnosis.
Dr. Christy Sutton 19:45
The symptoms that you want to look for: If a doctor ever says, “Your liver enzymes are slightly high,” or if your iron is slightly high, it's time to do the full iron panel. It's time to get the genes. But the other symptoms: It's really common to have fatigue and joint pain because the iron gets into the joints. It can also cause fatigue because it can damage your heart, and then your heart has a hard time pumping blood because it's not working very well. It's damaged. Fixing the iron often decreases heart rate and increases heart rate variability. It will destroy your liver. There's a 200 times increased risk for liver cancer in people who have untreated hereditary hemochromatosis. It will destroy your pancreas, causing type 1 and type 2 diabetes. So a lot of people have diabetes but they're never diagnosed with the cause of the diabetes. It can cause infertility by destroying the pituitary gland, ovaries, and testes, and [it can] cause a low sperm count and a low-quality sperm count.
Dr. Christy Sutton 21:03
I see this a lot: Women who have hereditary hemochromatosis get diagnosed and treated and then they still continue to have a lower-than-normal AMH for their age. I don't have data to confirm it, but I've seen it enough where it's like: “I think maybe that low AMH, which we know can be caused by the high iron, is actually a result of having the undiagnosed hemochromatosis for so long when they were younger.”
Dr. Christy Sutton 21:34
If you're young and you develop high iron [levels], it can stunt your growth. It can cause your skin to get bronze from the iron accumulating. It can destroy your brain, causing brain fog and increasing your risk for Alzheimer's, Parkinson's, difficulty healing up from traumatic brain injuries, concussions, bipolar, schizophrenia, and depression. In fact, Ernest Hemingway had undiagnosed hemochromatosis. He committed suicide. He was so miserable. He was depressed. He had horrible joint pain and diabetes. They didn't realize that's what it was until after he had committed suicide. And he was at the Mayo Clinic. It's profound—the number of things.
Dr. Christy Sutton 22:19
And I've gotten some criticism with the book. I get a number of things. One, people criticize me because I'm a chiropractor. I'm like: “Well, that's a lowball hit. Can you at least criticize what's in the book?” The second criticism is that I'm just saying that hemochromatosis causes everything. I'm like: “I would just put the things that were documented on PubMed.” Don't shoot the messenger here. Just because I did a thorough job, including all the things it can cause, doesn't mean that I'm wrong. It means that, I think, the medical profession needs to expand their understanding of what this looks like so that they can do a better job diagnosing and treating something that's easy to screen for, diagnose, treat, and manage.
Dr. Jill 23:02
I love that.
And if we look at mold-related illness or autoimmunity and some of these things that I deal with as well, they have this huge multi-system, multi-symptom list of things because they affect every organ. So it makes sense that something like iron overload would affect organs and many, many, many symptoms. And what you're not saying is that everybody has it, you're saying: Why don't we test and screen for this? I couldn't agree more. Most of my colleagues in functional medicine… I know that for me, I am always checking a full iron panel, at least at the first visit. And if there's any inkling of something wrong, I'll go to the genetics.
Dr. Jill 23:40
Let's talk just a little bit about labs. What would be the basics? You and I know what the iron panel is, but do you want to describe just a little bit about what the labs might look like if someone is abnormal so that they could take it to their doctor?
Dr. Christy Sutton 23:52
Yes, absolutely. You know this: Typically, when you go to a doctor and they order labs, they don't order a full iron panel. They will often include just a serum iron. Maybe, if you're lucky, they'll include a ferritin. But that is not everything in the iron panel. They tend to always order a CBC, giving you red blood cells, hemoglobin, and hematocrit. Those are important because it is common for people with hemochromatosis to have high red blood cells, hemoglobin, and hematocrit because they have so much iron [that] they're storing. These are like iron hoarders, and they have to find places to put it, so they often will put it in the blood—in the red blood cells, hemoglobin, and hematocrit. Those will often go up—not all the time, but often they'll go up. If you see any of that on a CBC, which is commonly ordered, that's a red flag. We need to make sure we get the iron panel and genes.
Dr. Christy Sutton 24:52
The full iron panel has the serum iron, which is like a snapshot. You want to always do that [while] fasting because if you eat, that can affect the amount of iron in your blood at the time of the blood test. It has the ferritin, which is more of like a stored iron. Ferritin can be misleading because it can go up with inflammation too. But if you look at the ferritin with the rest of the iron panel, that can tell you: Is this because of just inflammation? Or is this because of iron accumulating, which also increases inflammation? I don't ever like to see ferritin over 100. The research is very clear. If it gets over 200, that's going to decrease your quality of life and longevity. A lot of lab ranges allow it to go into the 300s or 400s. I don't ever like to see it above 100, and there is some research in the book to support that.
Dr. Christy Sutton 25:54
The other part of the iron panel is the TIBC, the UIBC, and the iron saturation. The most important lab to look at for diagnosing hemochromatosis is the iron saturation, which can also be called the transferrin saturation. That is just looking at how much iron is in your blood. If your iron saturation is 45 or higher, that's too high. Most labs allow iron saturation to go above 45 before they screen it. I know the Labcorp [test] that I use allows it to go up to 55. For a long time, I allowed that to mess me up. I was missing hemochromatosis because I was following the lab ranges. Then I realized that the technical cutoff is 45% with hemochromatosis. Why did the labs allow it to go to 55? I don't know. But you have to know that 45% iron saturation is the cutoff.
Dr. Christy Sutton 26:55
And if you have that high iron saturation with high ferritin, which is a relative term… For a lot of these people with hemochromatosis, it's not relative at all. They're 400, 500, 600, [or in the] 1000s. That's not at all relative. Some people say, “You're too low with 100.” I don't think so. I've never seen somebody's health get worse because I got them below 100 or they got below 100. I've seen a lot of people's health improve because their ferritin got below 100. And ferritin at 100 is high enough that if it's from iron levels, you have pretty good storage there. That's why it's so frustrating. Literally, what you need is an iron panel to diagnose it. You always want to get that CBC too. If those are out of range at all, the next step [is to] get the hemochromatosis genes. It's not that hard. There's just a lot of miseducation and myths. I don't know if you're ready to talk about the carrier myth.
Dr. Jill 28:04
Yes, let's jump in. I just have one question. Once in a while, we'll see high iron and low ferritin. What do you make of that?
Dr. Christy Sutton 28:14
The high iron saturation and low ferritin?
Dr. Jill 28:17
Yes.
Dr. Christy Sutton 28:18
Yes, that's probably the hardest one because there are a couple of things you want to look at. Sometimes that will happen when the red blood cells are breaking, they're lysing, and then that will allow a lot of iron to get into the blood. I don't have a huge Lyme [disease] population in Texas with my patients, but you probably have a growing number in Colorado. You'll see that sometimes with people who have chronic infection issues where their red blood cells are lysing, whether it's Lyme, Borrelia, Babesia, or whatever. Those are not the only things that can cause it, but sometimes you'll see that. That's like those red blood cells are breaking and it's allowing the iron to get out. But overall, the ferritin's getting lower, so they're becoming more anemic; it's just showing up high in the blood.
Dr. Christy Sutton 29:21
If you're seeing hemochromatosis patients that are removing a lot of blood in a quick manner, sometimes their ferritin can get low, but the iron saturation goes up because their body is mobilizing iron. Their body thinks they're dying from blood loss, so the body will increase iron absorption and increase iron mobilization, and you'll get this temporary low ferritin and high iron saturation sometimes in those people. But that's always the hardest one to figure out.
Dr. Jill 29:59
I would agree because I do this every day, and those are always like: “Huh, what else is going on? Is this chronic?” I loved your explanation because I think even for me as a seasoned clinician, it's still sometimes puzzling. I'm like, “What's going on in this situation with these weird…” But thanks for explaining. That makes so much sense because ferritin is really like the carrier released in the blood. That makes sense.
Dr. Jill 30:23
Okay, so genetics. Then we'll talk about: What do you do about this? I just want to mention something you talked about earlier that I think is important—this 14-year-old I treated, and you treated your husband—the earlier we get the diagnosis… We know the statistics of someone with undiagnosed hemochromatosis. They're almost guaranteed to have liver failure at some point in life if they're never diagnosed. And what you just described earlier was all the different organ systems. This gets stuck in the organ. So you could probably make a case that almost any organ could get overaccumulation of iron. That's why it's so diverse in the symptoms.
Dr. Jill 30:56
But say someone like the 14-year-old; I was almost in tears with the mother because she realized this 14-year-old didn't have liver failure. But because of the hair loss, we checked. We found this. We probably prevented lifelong, significant things like [what] your husband experiences. And we were just talking together: What a miracle that we found this at 14! We should be screening anyone who has anything abnormal and anyone who has a family history. Speaking of, let's go into genetics because one of the things you and I talked about is that two copies are going to show up as positive. What about one copy? Let's talk about the genetics here.
Dr. Christy Sutton 31:30
Yes. I do want to mention something you said about the 14-year-old who was having hair loss. What a gift, not just for the rest of her life—to have something properly diagnosed that's easy to manage and treat—but also a gift to the rest of her family, who now can learn from that and get screened and tested. However—you have probably seen this; I have seen this more than I'd like to—often, after diagnosing somebody with having this gene, I'll say: “Hey, you have this gene.” Even if their iron levels are normal, I'll always say: “Hey, you have this gene. This needs to be on your radar and you need to talk to your family members because they all need to be screened. You got this from somewhere; it's in your family, and they all need to be screened for it.”
Dr. Christy Sutton 32:29
Oftentimes, they'll tell me their family members' family history. I'm like: “They have it. That's their problem.” And their family members will dismiss it for whatever reason. Often, the reason is: “Well, my doctor would be telling me about it if it was a problem.” It's like: “No! That is not true.” But I can only talk to the person in front of me. I can't talk to the family members who are not sitting there. But it is a gift to the whole family if you can diagnose this properly, because it doesn't have to be a health problem. It's only a problem to have this gene if your iron levels get too high.
Dr. Christy Sutton 33:12
The iron curse of having high iron—having this hemochromatosis gene—has been a protective shield for many people. It protects [a person] from low iron, which has killed a lot of people. So there's a reason that this gene exists and there's a reason it exists in such a large percentage of the population: It is protective. It is protective for the most important thing in evolution—it's protective to get you through pregnancy and childbearing years and through childhood, where you're eating a lot of calcium-rich foods that bind to iron and make you low in iron. When you're growing as a child, iron gets depleted rapidly. This is why if you're anemic and low in iron, you'll often be smaller—shorter stature.
Dr. Christy Sutton 34:08
The issue with evolution is that once you're done having kids, evolution doesn't have a way to screen for bad genes. This is why hemochromatosis, high iron, tends to be more of a problem later in life. But 50- and 60-year-old women are not having kids, so it's like: “Who cares? Evolution can't do anything about that.” It's the same thing with the Alzheimer's gene. [With] the Alzheimer's gene, these kids will have higher IQs and have even been shown to have higher survivability during pregnancy and acute infections. But evolution doesn't care that you die of Alzheimer's and have Alzheimer's in your 70s or 80s because they're not having kids.
Dr. Christy Sutton 34:58
That's a little bit of a tangent, but I'll get back to what you originally asked, which was the genetic piece. And I did want to mention that my colleague had a five-year-old with undiagnosed hereditary hemochromatosis. She had two genes—two of the H63D. Both of her parents are Irish, so she got two of them. It's very high in the Irish population. That's why I say that. But as a five-year-old, she was having neurological problems. We diagnosed it and then she went to the pediatrician, who was a good pediatrician, but they didn't know what to do about it. They had never seen it before because they're not doing full iron panels.
Dr. Jill 35:40
I just want to say we had the same thing. The pediatrician had no clue. Even the specialist who was the gastroenterologist, the liver specialist, basically only saw adults. So I had the same exact situation where a pediatric gastroenterologist doesn't usually deal with this because very few clinicians are diagnosing, right?
Dr. Christy Sutton 35:57
One hundred percent. The only reason this pediatrician even saw this patient was because the mom diagnosed her. The pediatrician was like: “I don't know what to do. I'm referring you to a pediatric hematologist.” They primarily see cancer patients, so they're not really seeing hemochromatosis patients because they're not getting diagnosed. Not because they don't exist; they're not being diagnosed.
Dr. Christy Sutton 36:22
Going back to “it's hard to get in with a specialist,” it is very hard to get in with a pediatric hematologist, especially if you're coming in with hemochromatosis and not deadly leukemia. There's a ranking here, and hemochromatosis is not at the top. Not because it's not important; it's just not at the top of the ranking. So they finally got in. By the time they got in, I talked to the mom about: “There are some things you need to be doing to lower this kid's iron.” We adjusted her supplement protocol and gave her a really high amount of curcumin to bind to the iron and lower it.
Dr. Christy Sutton 36:56
By the time she went to see the pediatric hematologist, her iron levels were normal. The liver enzymes were better. Things were looking much better. Then the pediatric hematologist was like: “Why are you here? You're fine. If it goes back up to over 45% iron saturation, let me know and we'll treat it then.” This is what the pediatric hematologist said: “Stop giving her those supplements. They're not doing anything.” The mom cut back significantly to a fourth of what she was giving supplement-wise on the curcumin. Then they rechecked, I think about six weeks later, and the iron levels had gone back up—over 45% iron saturation. I have this message conversation in the book in the case study on juvenile hemochromatosis.
Dr. Christy Sutton 37:52
Then they message the pediatric hematologist and they're like: “Hey, we're in the bad range again. We stopped giving the supplements. Can we come in and get treated?”—because the mom wanted them to remove blood, which you can't do on a child. The pediatric hematologist emailed her back—I have it in the book, it's unbelievable—totally gaslighting. One hundred percent gaslighting. You can read it if you want, but that's what it is. It was disturbingly gaslighting. And they referred her back to the pediatrician, who referred the child to the pediatric hematologist. It's like: “They were referred to you. Why are you referring them back?”
Dr. Christy Sutton 38:41
So the mom's dealing with it. And the mom will go and order all these extensive labs just to get blood out of her child. It's not ideal. She's [inaudible] supplements. It's really hard. I can't wait till that child starts menstruating, which is coming because that's natural blood loss. But I totally digress there.
Dr. Christy Sutton 39:05
I do want to answer your actual question, which was [about] the really important genes. There are three hemochromatosis genes. There are probably more, but there's three that have been—
Dr. Jill 39:16
There's actually many, many, many. I've done some. But you're right, there are three big ones. You can go on. I was going to say that if you do some of those big, extensive genetic tests, HFE is how they notate them. And some of these genetic tests that you can order out have 20 of them. But only a few are really significant.
Dr. Christy Sutton 39:35
Yes. For the sake of not complicating it any further, I'm just going to be simple-minded and say there are three because if you go to Labcorp and you get a hemochromatosis test at this point in time, they check for those three. It used to be that they just checked for the top two. And then, with enough research, they added that third one. So there are three hemochromatosis genes. There's a lot to say about these.
Dr. Christy Sutton 40:01
But basically, there's this myth that if you have one of those genes, if you only inherit one from one parent, you're a carrier and will never have a problem because you only inherited one gene. That is a myth because, in order to be a carrier, you don't ever have health problems. And there are a lot of people with only one hemochromatosis gene that do develop high iron [levels] because even if you only have one hemochromatosis gene, that one gene will increase your iron absorption. And then it's just a matter of: How much iron are you getting in your diet? How much are you absorbing? At that point in time, it's all environmental.
Dr. Christy Sutton 40:50
So this is a myth that has led to a lot of people being gaslit, misdiagnosed, and mistreated and [has been] allowed to progress. It's a very pervasive myth. CDC, Mayo Clinic, the whole thing—they're full on board with this myth. I think that's largely because clinicians are not the ones who are writing the information for screening. These are governing bodies that haven't probably treated a patient in a decade. But that's not really what we're talking about here.
Dr. Christy Sutton 41:30
But those three hemochromatosis genes are really important. There are three of them. The first one is HFE C282Y. That's the one that is the strongest at increasing iron absorption. So the worst genetic combination is if you inherit two of those C282Ys. Then you're going to have a really high risk for getting high iron. Those are the people who tend to get diagnosed because they're the most obvious. The people who don't tend to get diagnosed are less obvious. Those are people with maybe one C282Y or one of the other genes that are not quite as strong at increasing iron absorption. The second gene is HFE H63D. A huge amount of the population has one of those genes. [For] a lot of people who get hemochromatosis, that's the only gene they have. It's a lower risk than the C282Y. But because there are so many people with that genetic type, it's very common to see that genetic type. Is that the gene that you have?
Dr. Jill 42:41
Yes. I have one copy of [inaudible].
Dr. Christy Sutton 42:44
One HFE H63D. Yes. That's the most common one. And then the third one is HFE S65C. Because it's a little bit newer in the research, there's not as much. Most research just looks at the two, so I can't really spout off a lot of statistics about that one. But we do know that it increases iron absorption but less than the other two. It needs to be taken seriously and screened for. If you have one of those, then you are at increased risk of developing hemochromatosis, high iron.
Dr. Jill 43:20
Thanks for explaining that.
For those of you listening, if you've ever had high iron or any sort of liver issues, these are things you can ask your doctor to test for. It's a genetic test. It's easily available at Quest, Labcorp, any hospital lab, Mayo Clinic, you name it. They're going to have this. And I love that they've added that because I remember back 20 years ago getting just the first two. I think recently I've been seeing all three of them. At least at Labcorp, you said it's there.
Dr. Jill 43:42
In our last few minutes, let's talk about treatment. I want to frame that because of one of the things you mentioned, but I wanted to make sure it's obvious to our listeners. Let's say, for example, that you're a menstruating woman. You're going to be more at risk before you have periods because periods are your natural reproductive way of getting rid of excess iron. I would say—and I'd love to hear your opinion, Dr. Christy—generally, women who are menstruating, especially if they have heavy periods, are a little bit less likely to have a risk of iron overload. But then, as soon as you hit menopause, there's this massive inflammation, loss of hormones, and a whole bunch of things, like a symphony that happens. But one of the things we know [is that] there's a much higher risk of heart attack and liver issues after menopause. I'm assuming these women are at more risk as well because they're no longer losing blood.
Dr. Christy Sutton 44:25
Yes, I think so. It's the elevated iron and then it's probably the combo of all the other hormones crashing—the estrogen, progesterone, and testosterone crashing—while the iron goes up, which is never a good combination.
Let's see, there were a lot of things I wanted to say. The first question you asked—what was it again?
Dr. Jill 44:52
Sorry, the suck treatments because I took you off on a tangent there.
Dr. Christy Sutton 44:55
It's okay.
I wanted to talk about the menstruation thing for a second. You can have a hemochromatosis gene and develop low iron. Just because you have that gene doesn't mean you're going to get high iron. You can become low in iron if you have a heavy menstrual cycle. Maybe you have a GI bleed. Maybe you're just not absorbing iron because you have digestive issues. Maybe there's something you're doing in your life or something that's happening in your life that's causing you to not absorb or keep enough iron in your body. Just because you have one of those genes doesn't mean you're going to have hemochromatosis. You can actually get low.
Dr. Christy Sutton 45:41
But what generally happens is that you'll go on, like, a roller coaster. The high levels of iron tend to decrease during the childbearing years because you're menstruating or [when] you're pregnant if you're a female. Females, when they're pregnant, get low on iron because being pregnant is an iron-depleting event. It uses a tremendous amount of iron. Even women who have these hemochromatosis genes often have to take iron during pregnancy just because they get low in iron. So it's not like the genes are your destiny. You still have to look at the labs and the environmental situations.
Dr. Christy Sutton 46:22
Having said that, this just happened to me: I had a post-menopausal female who stopped menstruating six or seven years ago. I was shocked to see she had a hemochromatosis gene because she was extremely anemic and had been for a long time. I was like: “You should not be this anemic. You're not menstruating. You have a hemochromatosis gene. There is something wrong here.” She had been, for lack of a better word, medically gaslit for a long time before that. I think that we probably see that a lot because patients tend to come to us after they've already had a bad experience elsewhere.
Dr. Christy Sutton 47:07
But it's important to know that during childbearing years, you tend to get lower. And then, after you stop menstruating, things tend to go higher. Now, men tend to have more problems than women because they never menstruate and they don't give birth to children. They're at a lower risk of getting low in iron and a higher risk of getting high in iron.
Dr. Jill 47:33
Thanks for explaining that. And it's a perfect example because I have that one gene, so I'm not the full-blown [risk type], but I have a risk of hemochromatosis. And because in my 20s I had cancer and then Crohn's disease, malabsorption, and inflammation, I was anemic for decades. Then, [during] perimenopause, when I got healthy and my gut was fine and all that, I started seeing high iron for the first time in maybe [my] late 30s or early 40s. And that's when I checked. So it's like my N-of-1 is exactly what you're saying. I wouldn't have ever seen it or checked for it because it was a little bit misleading because I was anemic for a lot of years. Then, once I got rid of the gut issues and the malabsorption and the Crohn's and all of that, the iron started to go up. That's relevant if you're a woman and you've had anemia in the past: It doesn't mean that you don't have hemochromatosis.
Dr. Christy Sutton 48:20
Yes, you could still have the gene and hemochromatosis. I actually have Crohn's disease too. I have often wished I had a hemochromatosis gene because of the malabsorption issues that come with Crohn's. I know you said you look at genes a little bit; I look a lot at the celiac gene too. One thing I've noticed is that I've only seen one Crohn's patient without at least one celiac gene. Do you have a celiac gene?
Dr. Jill 48:48
I do. I love that you say that. I have DQ2—two copies.
Dr. Christy Sutton 48:52
Okay. I have a DQ8, which is rare. I have one person, she's like the weirdest Crohn's person. I'm like, “I don't even know if you have Crohn's.” It's just one anomaly. I'm like, “I don't know about that.” But every other person I've seen has a celiac gene and they have to stay off of gluten. I wonder if you have the same thought: I was diagnosed at 16—they took out part of my small intestine, and it was bad—and I think if I had been taken off of a gluten-free diet at a young age, probably like a small child, then I would have never been diagnosed with Crohn's or had that surgery where they removed the last foot of my small intestine.
Dr. Jill 49:44
I think that's very possible. I love that we're digressing a bit because you and I know what this is like. I think that there's a definite connection. Gosh, I could go on for a while. But let's get to treatments before the end.
Dr. Christy Sutton 49:56
Oh, yes. Sorry. Okay. Treatments for high iron: First of all, [for] anybody who has hemochromatosis, it is in your best interest to get in with a hematologist because they're going to be able to remove blood at the right frequency, the right rate, and the right volume. You're a medical doctor, so you could remove blood. I can't remove blood. Maybe people can go donate blood, but some people can't donate blood. There are other ways around that, which I go through in the Iron Curse Protocols. It is always a good idea to have a hematologist manage any hemochromatosis as part of the team because this is a lifelong condition that needs to be screened. You need to have regular lab testing. The hematologists are good about saying: You need to get in here and do labs and [they] are really specific about it. I have seen some bad hematologists out there, but there are some really good ones too.
Dr. Christy Sutton 50:58
There are multiple steps to lowering the iron [levels] in treatments in the Iron Curse Protocol as part of the book. The first step is: Remove blood if you can. That is the primary tool that traditional medicine uses to treat hemochromatosis. It is a very effective tool. However, there are limitations to it. You can only remove so much blood. Some people who have really horrible hemochromatosis and whose ferritin is like 1,000+ cannot get enough blood out of them to get all that iron out before they become low in red blood cells, anemic, and can't function. They get into this situation where they're unable to remove blood, but they're just plateaued, still having high blood. They kind of feel helpless. The doctor is like: “Well, we have to wait till your hemoglobin and red blood cells come back up.”
Dr. Christy Sutton 51:58
As soon as you find out you have high iron, this is where you want to look at the other steps in the Iron Curse Protocols. You can look at dietary intake. If you're trying to lower iron, decreasing the amount of red meat you're eating is going to help because red meat is the highest source of absorbable iron. It has heme iron, which is very absorbable, whereas vegetables have non-heme iron, like spinach, which is not very absorbable. This is why you don't tend to see vegans and vegetarians get really high in iron. They might be consuming a lot of iron, but they're not absorbing it. Whereas if you eat a small amount of red meat, you're going to get a lot of iron out of that. Anyway, looking at the dietary things, even just drinking coffee or tea with that iron-rich meal can certainly help decrease iron absorption. There are a lot of little tips like that. Cut out the extra vitamin C supplements. Cut out the NAC; that's going to increase iron absorption.
Dr. Christy Sutton 52:59
Step three of the Iron Curse Protocol is nutritional supplements. That's, I think, a really effective tool to know about that I feel is being underutilized. It's a unique part of the book. I mentioned curcumin. Therapeutic doses of these things: Often three grams a day or more to help bind to the iron and lower it and lower the ferritin and the inflammation. Silymarin is another supplement that can help bind to iron and lower iron. Silymarin also helps with liver damage, which is the Achilles' heel of hemochromatosis. Quercitin helps to decrease iron absorption by increasing something called hepcidin. When hepcidin gets higher, you decrease iron absorption. For people who have a hemochromatosis gene, the reason that they absorb so much iron is because they have low hepcidin. If you take quercitin or berberine, these things can increase hepcidin and decrease iron absorption. Alpha-lipoic acid can bind to iron and decrease iron. That's also great because that can lower blood sugar. It's also really good for your brain and neurons and peripheral neuropathy and stuff. I have a whole list of multiple supplements, what they're good for, and all that.
Dr. Christy Sutton 54:28
The next step is lifestyle—things like: Be careful about alcohol intake because alcohol intake will increase iron absorption. Try not to pair vitamin C-rich fruits with red meat while you're still too high in iron because that's going to increase iron absorption. Exercise will lower iron, but you have to be careful not to jump into a serious exercise program while you have hemochromatosis because it's a stress on the heart. So you really need to watch closely, but just exercising will help lower iron. Interestingly enough, there are a lot of people who get lower in iron because they're taking a PPI or they have some digestive issue. Sometimes when you fix a problem, like a gut problem, the unintended consequence is that you get high in iron, like you were saying. And there are so many people on PPIs now. A lot of times, that'll make them low in iron. But if somebody gets off a PPI—you fix the underlying problem or whatever—they might go high.
Dr. Jill 55:52
That was wonderful! Really concise in every aspect of it. And of course, if you guys want to know more, go get The Iron Curse. Dr. Christy is a wealth of knowledge. Dr. Christy, this has been so fun and so relevant. I remember when I got your book, I thought, “This is someone I want to talk to” because I see this. I told you about that 14-year-old. I have many other stories of hemochromatosis, which I've diagnosed and treated. And I know that we're saving lives because this is sometimes missed. So I hope we bring awareness not only to patients and listeners but even to other physicians listening. If you're not testing out there, if you're a doctor, go ahead and start.
Christy, where can people find you? Where can they get more information about you, your book, your programs, or whatever else you have going on?
Dr. Christy Sutton 56:37
For The Iron Curse information, my book, and all that, you can go to IronCurse.com. That has more about the book. And I teach an educational workshop that goes through a lot of what we talked about, plus much more. My website is DrChristySutton.com. That has all the information about my books, my educational workshops, how to become a patient, and all that good stuff.
So thank you so much! I've really enjoyed this. You are such a wonderful person to get to talk to because you're so bright and clinically minded.
Dr. Jill 57:20
Aw, thank you. And thanks for your work. It really is so important. So if you guys are listening and want to know more, go visit DrChristySutton.com for the main site. If you're in your car driving, don't stop and write it down; I'll have it in the show notes.
Christy, thank you so much for coming by today.
Dr. Christy Sutton 57:35
Thank you.
* These statements have not been evaluated by the Food and Drug Administration. The product mentioned in this article are not intended to diagnose, treat, cure, or prevent any disease. The information in this article is not intended to replace any recommendations or relationship with your physician. Please review references sited at end of article for scientific support of any claims made.
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