The joint pain in the hands, brain fog, extreme fatigue. We’ve all heard of the standard Hemochromatosis symptoms. But if joint pain, brain fog, and extreme fatigue were the only symptoms that came with this condition, well then, eh. Those three things are…. workable.

However, there are symptoms that almost never get mentioned with this condition, even though the research is clear they’re common. And by never mentioning them, we might not know to include them into our discussions with our healthcare team.

The Symptoms That Rarely Get Discussed

Loss of libido and hormonal changes. This is one of the most under-discussed symptoms, despite not being a rare one. A clinical source found that 45% of patients experience this as an early symptom, right up there with fatigue and joint pain in frequency. Iron can deposit directly in the pituitary gland, the part of the brain that controls hormone signals to the reproductive system. In men, this can cause low testosterone, erectile dysfunction, and loss of muscle mass. In women, it can cause irregular or missed periods, amenorrhea, and reduced libido, and there’s genuinely encouraging evidence that these hormonal effects can reverse if iron levels are brought down early enough, before permanent damage sets in.

Skin changes beyond a “good tan.” Real hemochromatosis-related skin changes have nothing to do with achieving the perfect tan (something I used to take great pride in) - they’re a bronze or gray-toned pigmentation, caused by iron depositing directly in the skin while also triggering extra melanin production. One source estimates this affects roughly 70% of people with significant iron overload, most visible on the face, neck, forearms, and the backs of the hands. This combination, alongside diabetes, is where the old term “bronze diabetes” came from. For those of us with HH, a broad-spectrum daily high-digit SPF should be a part of our regular routine.

Diabetes risk from pancreatic iron deposits. Iron accumulating in the pancreas can damage the cells responsible for producing insulin, leading to elevated blood glucose and, over time, diabetes documented specifically as adult-onset (Type II) diabetes in hemochromatosis patients. It’s frequently caught only incidentally, through routine bloodwork showing rising glucose or triglyceride levels, rather than through any symptom a patient would think to connect back to their iron levels.

Loss of body hair. Genuinely underappreciated, one clinical source cites partial loss of body hair in 60% of patients, particularly in the facial, pubic, and underarm areas, tied to the same hormonal disruption from pituitary iron deposits. (I could make a joke here about menopausal women finding this particular symptom welcome or useful, but I won’t)

Heart palpitations and arrhythmias. Iron accumulating in heart tissue can cause irregular heartbeat, with atrial fibrillation being the most common type. In younger patients especially, cardiac symptoms can sometimes be the very first sign, appearing before joint pain or fatigue ever show up. And I myself found this to be true. Palpitations are also attributed to peri-menopause and are almost always chalked up to this, but it’s worth noting that it is a symptom of iron overload too.

Thyroid problems. Iron doesn’t only affect the pituitary’s reproductive signaling, it can also cause thyroid dysfunction, a documented effect of iron deposition in the endocrine system.

Mood swings and personality changes. Documented alongside the more commonly discussed brain fog are irritability, depression, and anger, which are listed specifically among recognized hemochromatosis symptoms, not just a side effect of feeling unwell generally. Again, these can also be symptoms of menopause, and so we rarely mention them to our hematologist or considered as part of a treatment plan.

“Iron fist,” which is a very specific kind of joint pain. Not joint pain in general, but pain specifically in the knuckles of the index and middle fingers, common enough to have its own nickname in clinical literature. For me, this pain manifested in my thumb joints.

Unexplained weight loss and abdominal pain or distention. Both documented, both easy to attribute to almost anything else first, but are absolutely symptoms of HH. Again, always worth mentioning any symptoms you’re having with your healthcare team.

Why This List Matters

For me, this list matters for a variety of reasons. The conversation around HH is generally dumbed-down to "just give blood" without any comprehensive discussion about the real impact this condition can have on our overall health. A UK study comparing people with genetic hemochromatosis to a healthy control population found significantly worse quality of life across multiple validated measures and is worth knowing given how many symptoms rarely make it into the conversation. We talk so much about the iron-loading and then the phlebotomy, but so little about the life lived in between those two things, the damage done during the loading process, and the consequential health issues known to develop alongside HH. So much of what we hear is "you have HH, you get blood drawn, the end." A deeper, real conversation about how HH impacts our lives is warranted. I'd rather know how to play the whole game than just the beginning and the end.

The Practice | 3 Things Worth Knowing

• Heme, Non-Heme, and Healthy Choices | So much of what I’ve learned over this last year is that not all HH management options align with some established health information. Take phytates - a compound found in whole grains, legumes, and brown rice, generally praised for its antioxidant properties in mainstream nutrition advice. For those of us managing iron, phytates are actually useful precisely because they block mineral absorption, iron included, and what the same nutrition guides sometimes frame as a downside is, for us, part of the point. Our individual decisions are truly personalized to our desired goals whether it’s heart health, avoiding diabetes, staying strong and fit, or preserving our liver.

• HH & Vitamin/Mineral Levels | There’s a lot of research out there that shows HH people are often deficient in other vitamins and minerals, and that balancing them can help alleviate some of the symptoms we experience. Discussing with your healthcare team a plan to routinely check these levels and make adjustments when necessary has proven beneficial for many.

• Movement is Medicine | Though this is true for everyone, it’s especially beneficial for those of us living with HH. Sweating, muscle strengthening for joint support, joint movement, cardiovascular support, lymphatic drainage, and so much more. As our bodies are dealing with the overload and damage done by free iron, it’s more important than ever to support all areas of our body in this battle. Whereas for those who are not dealing with this condition, movement makes an overall impact, for HH people, these movements have real, direct, specific impact on supporting systems and organs under strain. Decide on a movement practice you can get on board with, and commit.

In the end, the conversation on the true impact of HH has been minimized in the medical community, and this leaves those of us living with HH grossly uninformed about what is happening within our bodies, what it means for our lives and longevity, and what, if anything, we might be able to do to improve our quality of life, hold off, if not eliminate, potential health issues in the future, and age well. It is my hope that as more and more of us start talking about it, comparing notes, and running our own experiments with our choices, we might raise more awareness, help more people live in wellness, and find a way to curate the health we hope for.

Health is a practice. Wellness is a practice.

In practice,

Lisa

OVER TO YOU | Which of these symptoms did you have that never got connected to HH until after diagnosis? Tell me about in the comments below. I’d love to know.

Leave a comment

Medical Disclaimer: The information provided in this article and within my work is for entertainment, educational, and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

It was a cold, gray morning - November 4th, still dark at 7 AM - and the parking lot was already full when I pulled up to the oncology clinic. I was nervous, slightly sick. My nervous system had been running at full-tilt since diagnosis, cortisol high enough that I could feel it. That icky, slightly nauseous, no-identifiable-reason feeling that had been sitting with me for weeks. I was tired, confused, and angry. I’d spent my whole life trying to take care of my health so I’d never have to step foot in an oncology clinic.

And yet, here I was walking through the big automatic sliding glass doors into the dull, quiet reception area, past people in every degree of upright, everyone in masks, some in hats or headscarves. My stomach knotted and I instinctively pulled my coat tighter around me. I went to stand in line for check-in, still struggling to wrap my head around the fact that I was actually here.

My only previous visit had been my first meeting with my hematologist. Just to get established as his patient, not for treatment yet, so I hadn’t seen the treatment floor.

Big, overstuffed black recliners lined the front of the clinic in a single row in front of the floor-to-ceiling windows, running the full width of the room to the sidewall corner, where the line took a hard left and continued on down until it disappeared out of view. At least 40 recliners, each with an IV pole standing tall behind it, each with an attached side table for convenience.

On that dreary fall day, a nurse escorted me to my recliner. I’d opted for the first one, at the beginning of the line and the furthest from any of the patients already seated and receiving chemo. Most patients were lined up in front of the nurses’ station at the center of the open space, for easy assistance. Tucked in at the far end, I could avoid the main hub and all the activity happening there.

The reluctance I felt at having to explain to anyone but the nurses that I wasn’t sick, that I only needed to drain a bit of blood to bring me back to baseline, while they were fighting for their lives held a weight I didn’t think I could bear. I sat down in the recliner, feeling the shift into this new part of my health journey, and put my bag on the small side table. As I started to remove my coat, the nurse asked if I’d prefer a heated blanket. I said yes. The chill I felt had nothing to do with the room’s temperature, and the blanket was more for a sense of security than warmth.

Last month, I donated 500 mL of blood to the American Red Cross. My ferritin had finally reached a level safe enough to donate, and because my iron and saturation percentage were just over the “high” mark, I wanted to get “topped off” in order to start closer to my baseline for this next phase of my management experiment.

It took me a long time to understand that donation was even possible for someone with hemochromatosis, and longer still to understand the actual eligibility and timing involved.

I had a brief moment of panic that previous October, researched the American Red Cross’s rule on HH donations, and went in for my first ever blood draw. After which, I ended up in clinical phlebotomy for three weeks, until my ferritin and other numbers made further blood draws unadvisable for the time being.

During those three treatments, watching them detach the blood bags from my arm and toss them into the “Biohazard” bin felt like an insult on top of the injury of forced blood draws. It felt like such a waste to throw away blood whose only crime was being iron rich.

A Door Closed for a Long Time, Quietly Opened

For years, if you had hereditary hemochromatosis, most of the blood industry, from the FDA’s regulations to the American Red Cross, would not take your blood. Not because it wasn’t safe; everyone involved has always agreed HH blood is perfectly safe to donate. The issue, for both, came down to the same concern: motive.

Hemochromatosis patients need regular blood removal as treatment, and treatment costs money. If donating blood let someone skip a bill they’d otherwise owe, the worry was that a donor might be tempted to hide a real health risk just to qualify for a free draw which is exactly the kind of dishonesty a blood supply’s safety depends on not allowing. The FDA and the Red Cross landed on the same concern, but handled it differently, and on very different timelines.

The FDA’s response was a labeling rule: for decades, blood drawn from HH patients had to be specially marked as coming from a diseased donor, which meant it was rarely used and usually thrown away. That requirement didn’t fully lift until 2016, when the FDA gave blood banks the option to accept HH donors without the special label. Some organizations acted on this change quickly: UCLA’s blood center, the Rhode Island Blood Center, and the New York Blood Center all started accepting HH donations soon after.

The Red Cross, however, went further than labeling. They refused HH donors outright and held that position for six more years after the FDA had already loosened its rule. It wasn’t until June 2022, after real, sustained pressure from patients and advocates who’d been asking for years, that the Red Cross began accepting HH donors at all. The organization has since acknowledged that its “past inability to accept individuals with HH has caused frustration for many who want to donate blood.”

One more thing worth knowing: the FDA opened the door, but never made it mandatory. Individual blood centers still decide for themselves, and some still don’t accept HH donations. If you’re interested in donating and run into a center that says no, that’s not the final word. Keep looking because plenty of others will say yes.

Why This Is a Maintenance Tool, Not a Treatment Replacement

Here’s the part that matters most if you’re actually trying to use this as part of your management protocol: the Red Cross applies the standard 56-day interval to HH donors, same as any other donor, even though the FDA’s own rule technically allows more frequent donation for HH patients specifically, because iron overload can make it harder for them to become anemic*. Some blood centers, like UCLA, actually do let HH patients donate weekly with a doctor’s note. The Red Cross doesn’t. If you need more frequent draws than every 56 days, they can refer you to their own therapeutic phlebotomy program instead of a standard donation, if they offer it.

For the treatment phase, a 56-day interval simply isn’t fast enough for aggressive depletion. That phase needs a clinic.

But once you’re through that phase and into maintenance, the 56-day interval stops being a limitation and starts being a close fit depending on your own preference to give more regularly or only when you just need to be “topped off.” That’s exactly the phase I was in this June. Not urgent. Just upkeep.

*One caveat worth noting: HH patients are only resistant to anemia while they have excess iron in reserve. Once it's depleted, an HH patient can become anemic from continued donation, same as anyone else, which is exactly why ongoing bloodwork and healthcare team oversight matter throughout, not just at diagnosis.

The Cost of A Pint

Something to consider is that out-of-pocket therapeutic phlebotomy at a clinic typically runs somewhere between $50 and $274 a session, depending on where you go and what your insurance decides to cover. Even with decent insurance, plenty of people still end up paying something for the draw or for the lab work, or both. If you’re in maintenance and need a session every couple of months for years, possibly decades, that adds up into real money.

A Red Cross donation, on the other hand, is exactly that: a donation. You’re not billed for it, and no one bills your insurance for it either. The Red Cross itself absorbs the cost of collecting it. The process is simple: schedule an appointment (or walk in, though appointments get priority), check in with an ID, answer a short health history questionnaire, go through a quick mini-physical to check things like hemoglobin and blood pressure, then the actual draw, which takes about 8-10 minutes. Start to finish, the whole visit runs about an hour. If you’re eligible and you’re in a maintenance phase, this is worth knowing exists as an actual option, not just a nice idea.

A Quick Understanding Of Blood Types

Every single type carries real, specific value, which means whatever you are, your donation matters for a genuine reason, not just a general one. And every type is needed.

O negative | the universal red cell donor usable for almost anyone, critical in emergencies, and chronically in short supply.

O positive | the most common type and the most frequently transfused overall. Sheer volume makes it constantly needed.

A and B positive and negative | each serve specific, ongoing transfusion needs within their own type groups.

AB positive and negative | are rare, under 4% of the population combined, but AB donors are universal plasma donors, meaning their plasma can help patients of any blood type, especially burn and trauma victims.

Whatever’s running through your veins, there’s a real answer to “does this matter.” It does.

What I Actually Want You to Take From This

I'm not a doctor, and nothing here is telling you what to do with your own body or your own treatment plan because that conversation only belongs with your own healthcare team, always. What I actually want is simpler: if you're managing HH and you're in maintenance, ask whether donation might be a real option for you. It was closed to people like us for a long time. It isn't anymore. And it turns out the thing your body needs to let go of is something someone else is, right now, waiting for. We have to have the blood taken anyway, so why not make it mean something amazing?

The Practice | 3 Actions Worth Taking

• Find Out If You’re Eligible | Contact a local Red Cross or blood donation center directly and ask whether HH donors are accepted at your specific location, and confirm you meet the general donor eligibility requirements beyond the HH-specific policy.

• Know Your Type | If you don’t already know your blood type, ask your doctor’s office or check your last lab work. Knowing it tells you exactly how your donation is being used, and why it matters. If your lab or doctor’s office cannot or will not identify your blood type, and you are eligible to donate through the American Red Cross, they will identify it for you, so don’t sweat this exactly. Nice information to have upfront, but not a deal-breaker if you don’t.

• Ask About Timing | Bring donation up with your hematologist or care team specifically once you’re in maintenance, not during active depletion, so you know whether the 56-day interval actually fits where you are in your own treatment plan.

Donation isn’t a replacement for treatment, and it isn’t for everyone at every stage. But if you’re in maintenance, working with a healthcare team that’s actually supportive of this option, it’s one more tool worth having and one that costs nothing, but happens to help someone else while it helps you.

That’s not nothing. That’s actually pretty rare.

In practice,

Lisa

OVER TO YOU | Have you ever looked into whether you could donate, or did you assume, like I did, that the door was closed? I’d love to hear where you’re at.

Leave a comment

Medical Disclaimer: The information provided in this article and within my work is for entertainment, educational, and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

It’s beach season!

I’m so grateful to live within a lovely drive of the coast, and I take any opportunity that comes my way to get in the car and go.

On our most recent trip, Father’s Day weekend, we drove out to the coast and decided to stroll down the beach to see the pelicans. As we stepped out onto the sand, I was suddenly hit by the reality that a simple beach walk is a little more complicated for me now than it was over a year ago. It’s not just a carefree stroll anymore.

Now there are rules.

Let’s talk about the one beach hazard nobody’s warned you about yet.

Not sharks. Not sunburn (though we’ve covered that one already). Something smaller, sneakier and worth knowing about before you wade into the water, if your body’s like mine.

Meet Vibrio, Your New Least-Favorite Beach Fact

Vibrio vulnificus is a bacterium that lives in warm coastal water, and it thrives specifically on iron. For a body already carrying extra iron, that’s a coincidence worth paying attention to.

Here’s the part that made me actually pay attention: researchers at UCLA figured out why HH bodies are so susceptible to this bacterium. Most people’s bodies have a built-in defense against infection by temporarily pulling circulating iron out of the bloodstream, starving the bacteria of what it needs to grow. It’s called nutritional immunity.

The catch, for those of us with HH, is that this defense runs on hepcidin. It’s the same hormone that’s already underperforming in HH bodies, which is exactly why we load iron in the first place. The move a healthy body makes automatically is a move our bodies largely can’t make.

Not a reason to panic. Just a real reason to plan ahead, the way you’d want to know your tent has a hole in it before the rain starts.

What This Actually Looks Like

Infection happens two ways: through contaminated raw shellfish, or through an open cut exposed to warm seawater.

From food, it can become a bloodstream infection which is real and serious, and one where HH is specifically named in medical literature as a risk factor for worse outcomes, given that missing defense.

From a wound, it can turn into a fast-moving skin and tissue infection, sometimes requiring surgical treatment to fully resolve.

This is documented, not hypothetical and there are recorded cases of HH patients developing serious infections this exact way, from something as ordinary as a scrape on a shell during a day at the beach.

That’s the part worth knowing plainly, without dressing it up: this is a real risk, specific to our bodies, and it’s also a genuinely preventable one. Which is the whole point of the three things below.

The Practice | 3 Ways to Beach Like a Pro This Summer

• Water shoes, non-negotiable. Shells, rocks, and barnacles are the real culprits here, not the water itself. A five-dollar pair solves this entire category of risk before it starts.

• Any cut, however small? Land day. If you’re already nursing a scrape, cut, or split in your skin, no matter how minor, today’s the day for sandcastles, not swimming. The water will still be there tomorrow.

• Shellfish, cooked through, every time. Not a lifetime ban on oysters, just always fully cooked, no exceptions.

  ---

None of this means staying off the sand or skipping the shellfish tower forever. It means knowing your body’s specific quirks well enough to plan ahead. And if you’ve been reading along, you already know that’s basically my whole personality at this point.

So buy the water shoes and go enjoy your summer.

In practice,
Lisa

Over To You | What’s your go-to beach precaution, HH-related or otherwise? Drop it below, I read every one.

Leave a comment

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

My thumbs tell me everything I need to know about my iron levels.

My thumbs.

When the pain builds at the base of my thumb joints where the thumb meets the palm and down into the wrist I know my iron is climbing. My labs have confirmed it every single time. Both hands, usually at the same time, and it affects everything. Opening a jar, gripping a pen, holding a phone, typing, brushing my teeth. Anything that involves the thumb becomes a challenge.

It took me a while to connect the dots. Now that I have, I watch my hands like a dashboard.

Hereditary Hemochromatosis Joint Pain Is Not Arthritis And That Distinction Matters

HH arthropathy is its own thing, and it gets missed constantly, even by doctors. The classic textbook description targets the second and third knuckles but research confirms that virtually every joint can be affected. Mine showed up in my thumbs and wrists. Not the textbook picture. Still HH.

What makes it distinct from rheumatoid arthritis: no visible warmth, no redness, no dramatic swelling. Just a deep, mechanical ache that lives inside the joint and quietly makes everything harder.

The kind of pain that gets called “just getting older.”

It isn’t.

What I Found Out About Women, Hereditary Hemochromatosis, and Joint Damage

When I started researching HH arthropathy, one finding stopped me: women with HH who are experiencing hand and joint pain face a higher risk of early joint deterioration than men.

That got my attention.

HH is already chronically underdiagnosed in women because our cycles mask iron buildup for years. By the time we’re diagnosed, our joints may have been quietly accumulating damage for a long time. I’m not willing to add to that by being careless with my hands now that I know what’s happening.

So I take my hand care seriously. Anti-inflammatory practices, daily strengthening, support when I need it. My hands are too important to my yoga practice, to my writing, to my life in general to treat as an afterthought.

The Practice | 3 Tools for Keeping My Hands Happy

• FREETOO Ergonomical Thumb Brace - amazon.com | Supports the thumb joint and wrist simultaneously. Exactly the right architecture for where my HH hand pain tends to live. I wear these during high-use periods to reduce joint load without losing hand function.

• Gyroscopic Exercise Ball - amazon.com | Five to ten minutes of rotational resistance daily. Builds wrist and hand strength to support the joints without joint compression. I notice the difference when I skip it.

• A quality CBD topical | Applied directly to the joint each night at bedtime and during active pain periods. My current product is discontinued and I’m finding a replacement but this practice has genuinely worked. High concentration, applied directly.

No affiliations, no compensation. These are things I actually use.

My hands were trying to tell me something long before I had a name for what was happening. Now I listen. And I take care of them accordingly.

In practice,

Lisa

Over To You | Where does your HH joint pain show up? The classic knuckles, or somewhere unexpected? Drop it in the comments, I’d genuinely like to know.

Leave a comment

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

Almost a year ago, just after my 57th birthday, I was diagnosed with Hereditary Hemochromatosis. My hematologist’s instructions were simple: eat, drink, live your life, and come back when your ferritin hits 1000. Nothing to change. Nothing to do differently.

I went home and cried. And then I started researching.

What has followed is twelve months of building my own protocol in coordination with my naturopath around a central question: how much could I slow my iron absorption rate through diet, lifestyle, and deliberate management? Or could I even slow it at all? Not to replace phlebotomy permanently. Not to pretend I had found a cure. But to understand my own body well enough to make phlebotomy a strategic tool rather than a reactive one. To use it a couple of times a year to maintain my baseline rather than waiting until my numbers demanded it.

That has been the experiment. And today I’m moving into phase two.

What This Last Year Actually Looked Like

The protocol I’ve been following is built around four pillars: what I eat, how I move, how I manage stress and environment, and how I advocate for myself within a medical system that largely doesn’t believe management is worth trying.

On the plate: I decided to start from a completely non-heme diet. No meat. Tannin-rich tea with every single meal to inhibit iron absorption. Calcium sources strategically placed. No vitamin C with meals. Every food choice made with iron absorption in mind, without losing the pleasure of eating well and enjoying food because that matters too.

In the body: daily movement, breathwork, restorative yoga, and a commitment to keeping my lymphatic system flowing and my stress levels managed because cortisol affects iron metabolism in ways that don’t get discussed nearly enough. Strategic time in the sunshine and sweating as a tool.

The results have been compelling enough to keep me going. Compelling enough to document. And compelling enough to now test the next variable.

The Labs Came Back

I’m saving the specific numbers for my one-year piece next month, where they’ll tell a fuller story in context. What I’ll say now is this: my ferritin has climbed to exactly where my naturopath and I agreed it needed to be before donating safely. We had a threshold. My body hit it.

So I’m donating blood this week.

I have O+ blood and I’m not interested in throwing away a perfectly good donation just to have it medically disposed of after phlebotomy. Someone needs it. I’m giving it. And in the process, I get the clean baseline I need to move into the next phase of this experiment because starting the meat reintroduction from the lowest possible iron point gives me the clearest picture of how fast I actually load.

What Phase Two Actually Looks Like

Once I donate, I’m reintroducing one serving of lower heme meat (think chicken breast and white fish) per week into my otherwise non-heme diet. One serving. Once a week. For roughly two months. Then labs again with my hematologist at the end of August and a follow-up review with my naturopath shortly after.

Last December, when my ferritin bottomed out at 12 (normal is 50-100), my naturopath and I made the decision to reintroduce heme iron temporarily, not as part of the experiment, but to bring my iron stores back to a safer level and ease the symptoms of having too little stored iron. It was agreed I could eat all meat types, regardless of iron levels, because to have such low ferritin isn’t good. For nearly three weeks - over the holidays - I ate a serving of meat every day. But on January 1st, it was back to the plan, I returned to the full non-heme protocol.

What that brief window gave me, unexpectedly, was a small glimpse of how quickly my body responds to heme iron. I wasn’t tracking it with any real intention at the time because I was focused on feeling better. But the data was there, and it’s part of what made me curious about what a deliberate, controlled reintroduction would actually show.

That’s what phase two is about.

I’m going into this phase with a year of data behind me, a clear sense of what my numbers look like when the protocol is tight, and a body that has gotten very good at telling me what’s happening before the labs confirm it. My thumbs are usually the first indicator - when the pain builds at the base of my thumb joints, my iron is climbing. I’ll be watching them closely.

The Possibility I’m Not Really Looking Forward To

I’m a little scared of what I might find out.

If one serving of meat per week loads me faster than my protocol can manage, I’ll have a clear answer about whether heme iron has a place in my life going forward. And that answer might be no.

I’ve made peace with a lot this past year. The non-heme diet, the no alcohol. A level of food intentionality that would have felt completely ridiculous to the version of me that existed before July 19th, 2025. But I haven’t fully made peace with the possibility that meat is permanently off the table. Not yet.

So I’m running this phase with intention and with my eyes wide open. Because I’d rather know than wonder. Because the whole point of this experiment has always been to understand what’s actually happening in this body and not to assume, not to hope, but to find out.

Cautiously optimistic. Genuinely curious. Fully committed to seeing this through and to facing whatever I find honestly. If management slows iron absorption in some real way and improves quality of life, that matters. If the evidence points the other way, that matters too.

Either way, I'll know. And knowing, for me, is always worth the work.

In practice,

Lisa

Over To You | Are you running your own experiment with Hereditary Hemochromatosis? Testing something, tracking something, trying to understand how your body actually responds? I’d love to hear what you’re learning. Drop it in the comments.

Leave a comment

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

Even when our numbers are good, our blood draws consistent, our diet is supportive - we never quite feel right anymore.

I used to wonder why I always felt this “ick” that I described to friends, family, and doctors as a low simmering flu-like feeling that never ever went away. All my labs were normal, my diet was good, I was active. But that awful feeling was always there.

I didn’t know what “feeling good” was.

Almost a year into this HH journey, I realize most people sharing their experience say the same thing. The confusion over blood draws not easing symptoms, as is universally expected (hoped for), and when we do get a bit of relief after a draw, we’re grateful. But wondering why we still feel sort of sick.

It wears you down.

So …..push through or give in?

Not give up, but give into the idea that this is the new normal and just get on with it.

Or push through. Amp up the self-care and lean into higher nutrient loading, more sweating, more stretching the muscles that ache. Dry brushing and rebounding for lymphatic flow. Power resting. Working it all like it’s my job.

But pushing through doesn’t always feel right either. As if I’m ignoring what my body actually needs.

Here’s what I now understand and what I wish someone had told me at the start.

The treatment is working.

The lifestyle changes are working.

And some of what you’re feeling isn’t going away.

Not because you’re doing something wrong, but because iron overload leaves a mark that phlebotomy alone doesn’t erase. Understanding what’s actually happening doesn’t make it easier exactly. But it makes it make sense. And sense, it turns out, is its own kind of relief.

What’s Actually Happening

This is not a doom list. It is a map.

• Oxidative Stress - Excess iron generates free radicals faster than the body can neutralize them. Widespread inflammation, accelerated aging, and that persistent sense of systemic unwellness.

• Mitochondrial Dysfunction - Iron overload impairs the cellular machinery that produces energy. The deep, unrelenting fatigue that sleep doesn’t fix and bloodwork doesn’t explain. This is why.

• Pituitary & Hormonal Disruption - Iron deposits directly in the pituitary gland - the master control center for thyroid, adrenal, and sex hormones. Low testosterone, hypothyroidism, loss of libido, hair loss, depression, weight changes, persistent low energy. All of it connected.

• Brain & Neurological Effects - The pituitary sits outside the blood-brain barrier, making it vulnerable to iron deposits that disrupt the hormonal signals governing mood, energy, and cognition. Brain fog, anxiety, depression, irritability, common HH symptoms even when everything else looks managed.

• Persistent Joint Damage - Iron embeds in synovial tissue and cartilage. Structural damage phlebotomy can’t undo. Chronic pain, stiffness, reduced mobility. Particularly in the hands, hips, and knees.

• Irreversible Organ Scarring - Iron-driven inflammation leaves scarring in the liver, pancreas, and heart that remains even after iron normalizes. Digestive issues, blood sugar instability, fatigue, heart rhythm irregularities.

You’re not crazy. It’s not that the treatment isn’t working. This is the now-explained normal.

Worth A Discussion With Your Healthcare Team

With guidance and oversight by your healthcare professionals.

• Oxidative Stress: Antioxidant support is worth exploring with your team as there are several well-studied options.

• Mitochondrial Dysfunction: Ask about options that support cellular energy production.

• Pituitary & Hormonal Disruption: Get a full endocrine panel for thyroid, testosterone, cortisol, LH/FSH. What isn’t tested can’t be treated. Ask whether HRT or adrenal-supportive options make sense for your specific results.

• Brain & Neurological Effects: Ask about nervous-system-supportive options, alongside meditation, breathwork, and gentle yoga to help regulate the nervous system directly.

• Persistent Joint Damage: Low-impact movement like walking, cycling, swimming. Chiropractic or physical therapy targeted at HH joint patterns. Ask your team about anti-inflammatory support options.

• Irreversible Organ Scarring: Ask about liver-supportive options, alongside a low-glycemic diet for blood sugar stability and regular cardiac and liver monitoring echocardiogram, FibroScan, liver enzymes.

NOTE: Each person’s situation is different, and there’s no one-size-fits-all supplement regimen. Any additions to your management protocol should be a conversation with your own healthcare team, based on your own labs and needs.

The Practice | 3 Places to Start This Week

Get Your Endocrine Panel Done | If you haven’t had a full hormonal workup since diagnosis, make that appointment this week. Iron deposits in the pituitary silently. What isn’t tested can’t be treated.

Supplementation Discussion | HH patients can show significantly depleted vitamin and mineral levels. Having a full panel run and then a discussion with your healthcare team on what supplements may help to elevate any depletions you may be expericing can be beneficitals.

Bring This To Your Next Appointment | The symptoms you’re experiencing have names now. Use them. You are not a number on a lab slip, you’re a whole person managing a complex condition and you deserve a provider who treats you that way.

We’re going to have to get comfortable with some discomfort. Some pain. Some ick and blah. That’s the honest truth of living with HH and I’d rather say it plainly than let you keep wondering if you’re doing something wrong.

You’re not.

This is the new normal. And within it, with the right information, the right support, and a practice built around what your body actually needs, there is still an enormous amount of room to feel better than you do right now.

And that’s what we’re working for.

In practice,

Lisa

Over To You | Which of these six areas hits closest to home for you? Drop it in the comments - I want to know what we’re all carrying.

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Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

Photo by Simona Todorova on Unsplash

Nobody tells you very much when you get your HH diagnosis. If you’re lucky your hematologist hands you a pamphlet and schedules your first blood draw, but then sends you off into the world where the sun is out, the grill is going, and your body is quietly doing things nobody mentioned and you’d never know to ask about.

So let’s talk about what summer is actually doing to your iron-overloaded body.

Not in a scary way.

In a you deserve to know this way.

The Sun Is Literally Releasing Your Iron

Here’s a summer HH plot twist : UVA rays - the ones present year-round, all day, through clouds and windows - trigger the release of free iron in your skin cells. Your skin stores iron in ferritin, and UVA light breaks that ferritin down, releasing iron directly into surrounding tissue. That free iron then generates what scientists call reactive oxygen species - which is a very technical way of saying: oxidative chaos.

For someone without HH, this is a manageable side effect of being a person outside in the summer. For someone whose body has been over-loading iron for decades? There’s simply more iron available to be released.

More fuel for the fire, so to speak.

This is also likely part of why HH bodies tend to tan faster and more deeply than expected. UV exposure and excess iron each independently drive melanin production, and HH bronzing is known to show up most prominently on sun-exposed skin, so while the exact interaction between the two isn't fully mapped by research yet, it's a reasonable bet that they're compounding each other.

You’re not imagining it. Your skin is responding to two things at once.

Wear the quality SPF. Not because it’s always a summer trend, but because your skin is working harder than most people’s, and it deserves the backup.

Heat + Sweat = A Ferritin Number to Watch

Here’s something worth knowing before your next summer blood draw: heat and intense exercise temporarily spike ferritin and not necessarily because your iron stores have changed.

Ferritin is a dual-role protein. It stores iron, yes. But it’s also an acute phase reactant - meaning it rises in response to inflammation. When you exercise hard in summer heat, your body’s inflammatory response kicks up, and your ferritin number can reflect that inflammation rather than your actual iron load. Studies on exercise in heat have found real, measurable spikes in inflammatory markers like IL-6 and in some cases nearly doubling compared to the same effort in cooler conditions

What this means practically: a summer ferritin reading, especially one taken shortly after intense outdoor activity, may read higher than your baseline. It’s not necessarily cause for alarm. Its just context.

Tell your provider when you last exercised hard, how hot it’s been, and whether you’ve had any recent illness or stress. These things matter for reading your numbers accurately. You are not just a number on a lab slip, you’re a whole person who may have been outside doing things in the heat like a functional human, and your results should be interpreted accordingly.

This is why the high-maintenance body doesn’t hide from summer. It moves through it. Deliberately, smartly, and with excellent timing.

Sweat As Management

Here is a piece of genuinely good news, which feels worth announcing clearly: sweating is one of the very few natural ways your body moves iron out.

The body loses iron daily through sweat, shed skin cells, and intestinal cell excretion - roughly one milligram per day through these combined routes. That’s modest. It’s not a substitute for treatment. But for an HH body that has very limited iron off-loading options, it matters.

Summer - with its heat, its outdoor movement, its invitation to actually use your body outside - gives you more opportunity to sweat intentionally than any other season. Which means summer isn’t just a season to survive. For an HH body, it’s a season to use.

Movement Is Still Medicine. Timing Is Everything.

And here’s more good news: regular exercise over time actually lowers ferritin. It reduces chronic inflammation, supports liver function, and keeps the whole system moving - literally. Your yoga practice, your morning walks, your commitment to showing up for your body - all of it works.

The summer amendment is simply this: the when and how matter more this season.

Move in the early morning or evening when the heat isn’t at peak. Hydrate before you think you need to - heat depletes faster than you expect, and dehydration concentrates everything in your bloodstream, including iron markers. Favor the practices that calm your system: like yin instead of hot power flow when it’s 90 degrees outside. A walk at dusk over a run at noon.

The high-maintenance body doesn’t stop performing in summer.

It just adjusts its schedule.

Enjoy The Sun

Seriously. Get outside. Feel it. Let summer do what summer does - reset, restore, remind yourself that your body is capable of extraordinary things when you give it what it needs.

The Practice | 3 Steps for Your Summer

1. Use SPF Like You Mean It | Finding a good SPF is a challenge - most I find are sticky, tacky, slimy, uncomfortable to wear. You now know why it matters for HH specifically. This week, find a broad-spectrum SPF you’ll actually use daily and commit to it. Make it part of your morning routine.

   1. NOTE-Leave the SPF for AFTER your walk | Early morning light -specifically in the first 30 minutes after sunrise - has real physiological value. That low-angle sunlight on your skin and eyes helps regulate circadian rhythm, supports serotonin production, and signals cortisol to peak at the right time. Blocking it with SPF first thing undermines that benefit. So get your early walk in without SPF, then apply before the sun has any real intensity, generally after 8am when UV index starts climbing.

2. Schedule One Intentional Sweat This Week | Sweat moves iron out. Use that. Pick one thing this week that makes you sweat on purpose. Outside. Let your body use this off-loading tool to help move the numbers. Even a little bit is better than nothing at all.

3. Summer Blood Draws: Write Down the Conditions | You now know heat and exercise spike ferritin artificially. So starting today, keep a simple note on your phone regarding temperature, exercise, stress. Bring it to your appointment. Change the conversation with your provider. When we understand how those numbers are being affected, we can view them as part of a process, not just a warning sign.

   ---

Summer with HH isn’t a season to manage your way through. It’s a season to move through intelligently and to enjoy. At first, I was really sad to learn that sun and HH don’t play well together, but I won’t allow my iron load to rob me of my favorite season. It may take a little more planning than it used to, but I’m up to the challenge.

The sun is out.

And now you know what to do.

In practice,

Lisa

Over To You | What's your best summer body hack? HH or otherwise - drop it below.

Leave a comment

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

The first year of a Hereditary Hemochromatosis diagnosis is a crash course in biological crisis management. And when I say crisis, I don’t just mean the labs. I mean the emotional breakdowns, the fear of dying, the wishing I knew which ancestor was responsible for this, and wondering why I’m the only one in the family who “got it.” It’s mourning alcohol, wine, and steak; it’s crying in grocery stores and resenting my family for eating hamburgers while I gnaw on a block of tofu.

It’s a sprint of learning words like ferritin, hepcidin, and transferrin; the frantic refreshing of lab portals; and the steep learning curve of “HH math.” It’s loud, it’s urgent, and it demands your full attention. But eventually, the siren stops. The ferritin stabilizes. The bruising fades. And suddenly, you find yourself standing in the quiet of the “After.”

There is a strange, hollow feeling to the maintenance phase. When you are in the crisis, you have a clear enemy and a clear goal. But when the emergency is over, you’re left with a permanent, silent management contract that has no expiration date. This is the Maintenance Paradox: the “all-clear” signal from your hematologist isn’t an exit; it’s just the transition from a sprint to a lifelong, low-impact marathon. The first time my doctor used the phrase “for the rest of your life,” I genuinely wanted to ask if he was threatening me.

Maintenance is arguably harder than the crisis because you first have to opt in. In the HH community, this is a loaded topic. You’re either for it or against it, with very few people in the middle. At first, I judged those who readily dismissed management. I was called a fear-monger or naive for asking if we could control our absorption rate. To opt in is to commit to being on the “outside”, to go it alone. I understand now why so many opt out; it’s a complex, contradictory path of to-do’s that would make anyone feel overwhelmed.

It requires discipline without the fuel of fear. It’s the subtle, daily labor of remembering that while you are “fine,” your blueprint is still fundamentally different. You aren’t “fixed,” you are optimized. And optimization is a quiet, repetitive art form. It’s the decision to stay vigilant when you no longer feel the immediate weight of the iron in your joints or the fog in your brain. It’s the quiet acceptance that “how it used to be” is no longer available, and the final surrender to the idea that you were always built this way, you just didn’t know it.

I’ve realized that living with HH in the long term is less like being a “patient” and more like owning a vintage Italian sports car. It’s beautiful, it’s high-performance, and it’s capable of incredible things, but if you don’t change the oil and watch the fluids with obsessive precision, the whole thing seizes up. I’ve moved past the “Why me?” phase and into the “How do I tune this engine today?” phase. I’m no longer fighting a mutation; I’m just a very diligent mechanic of my own chemistry.

I won’t lie: some days I’m resentful as hell. I watch my friends share a bottle of chardonnay and get prickly feelings of resentment. I still wish I could scream “why me” at the top of my lungs and keep some self-respect, but I can’t.

Nearly forty articles ago, I was just trying to keep the wheels on. Now, I’m learning how to drive the car. Living well with HH isn’t about the grand gestures of the initial diagnosis; it’s about the quiet, grounded rituals of the everyday. It’s about accepting that the manual for my body is written in a slightly different language, and I’m finally becoming fluent.

I still have a loooooooooong road ahead in learning the deeper role of iron, how to brew the perfect tannin powerhouse cup of tea, or how to stop sending mean comments to “non-alcoholic” wine companies claiming they have “complexity” when their chardonnay just tastes like water gone bad.

In practice, Lisa

OVER TO YOU: Whether you’ve been managing HH for a decade or you just got your first "high" lab result yesterday: What was the one piece of advice (or "rule") that made you realize your relationship with food and your body had officially changed? Please leave your answers below in the comments. I’d love to hear where your journey has taken you.

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Sneak Peek: The Guide - On a related note: I’ve spent the last year documenting the “how” behind the lifestyle, the tactical, real-world ways I’ve turned this management into something that feels more like a choice than a chore. I’m currently distilling those thoughts and strategies into a comprehensive guide. It’s for those of us who are tired of being told that you have no power in management and who are looking for the actual manual for the high-performance machinery we’re living in.

Choosing to manage HH is the difference between being a passenger in your own body and finally getting behind the wheel. If you’re ready to move past the “Why me?” and start the “How to,” I’ve built the tools to help you navigate the road.

• Master the Menu: Stop the “HH Math” at dinner. Get The Restaurant Edit on Gumroad.

• Master the Kitchen: Coming June 1st, The Plate will help you stop mourning your meals and start loving your food again.

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

Hereditary Hemochromatosis Has Been Around Longer Than We Think

There’s a version of this story that begins in a doctor’s office with a diagnosis, a lab report, a number that’s suddenly too high.

But the more interesting version starts much earlier.

It moves through Northern Europe, across centuries of migration, scarcity, and survival, through populations that may have quietly carried a genetic advantage long before it became something to manage.

In the late 19th century, physicians began documenting a peculiar combination of symptoms in certain patients: liver disease, diabetes, and a distinct darkening of the skin.

They called it “bronze diabetes.”

The name says more about the limits of medicine at the time than it does about the condition itself. It was descriptive, not diagnostic, a way of labeling what could be seen without understanding what lay beneath it.

What they were observing, without realizing it, was iron.

Not a deficiency, but an excess. A body accumulating more iron than it could safely store, depositing it quietly into organs over time.

It would take decades before researchers began to understand that this was not incidental, and not random. And it wasn’t until 1996 that the HFE gene mutation was identified, providing a clear genetic link and finally giving shape to what had, until then, been largely misunderstood.

What makes this story more interesting is the possibility that this so-called condition may not have originated as a problem at all.

Hereditary hemochromatosis is most common in people of Northern European descent, particularly Irish, Scottish, and Scandinavian populations. The distribution isn’t incidental. It reflects patterns of migration and inheritance, often traced back through Viking expansion and settlement.

The mutation persisted and spread.

Which raises the obvious question: why?

One prevailing theory is that in environments where iron intake was inconsistent or limited, a body that absorbed and retained iron more efficiently may have had a measurable advantage. In periods of famine, dietary restriction, or chronic illness, the ability to hold onto iron could have supported survival in ways that a “normal” metabolism might not.

There are even hypotheses, still debated, that altered iron regulation may have influenced outcomes during events like the Black Death. The bacteria responsible for the plague relied on iron to proliferate, and it’s been suggested that differences in iron handling could have affected susceptibility or progression.

Similarly, during the Irish Potato Famine, when diets became severely restricted and nutritionally narrow, a metabolism inclined to conserve iron may have offered some degree of resilience.

None of this is definitive. But it reframes the narrative.

What we now call a disorder may, at one point, have been adaptive, useful, even necessary under entirely different conditions.

Today, hereditary hemochromatosis is often described as a disease of excess. Too much iron. Too much accumulation. Too much of something the body cannot easily discard.

And yet, the primary treatment remains remarkably simple:

Remove blood. Reduce iron.

It is a solution that feels almost primitive in the context of modern medicine and yet it is effective. There are no widely adopted pharmaceutical interventions that replace it. No elegant technological solution.

Just a direct, mechanical way of correcting what the body cannot regulate on its own.

What continues to be surprising is not the mechanism, but the visibility.

Despite being one of the most common genetic mutations among people of European descent, hereditary hemochromatosis often goes undiagnosed for years. Its progression is slow. Its symptoms are vague. It rarely announces itself in a way that demands immediate attention.

It sits in the background.

Until it doesn’t.

What to Consider

• Not every condition begins as a flaw, context matters, and biology evolves within environments that no longer exist

• The body’s strengths are not fixed; they can become liabilities when the surrounding conditions change

• Simplicity in treatment does not equal simplicity in understanding

• There is a meaningful difference between identifying a number on a lab report and understanding the system that produced it

There’s something fascinating about a condition that has likely been moving through generations for centuries, unnoticed, unnamed, and, for a long time, completely misunderstood.

It forces a different kind of perspective.

Not everything the body does is a mistake. Sometimes it’s a response, one that made perfect sense in a different time, under different conditions, in a world that required something else to survive.

And now, here we are living in a completely different environment, with the same underlying biology, learning in real time how to work with it rather than against it.

That, more than anything, is what makes this worth understanding.

Because maybe it allows me to feel a little more settled, more comfortable, with having to deal with this condition. To understand how it came to be, and to recognize that it wasn’t always as malicious as it feels sometimes.

That it was once a benefit, just no longer an asset.

Out of time in this current world.

And I’m right smack in the middle of that evolutionary shift.

And that makes this feel… not easier, exactly.

But a lot more interesting.

In practice,
Lisa

Medical Disclaimer

The information provided within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis.

And though I do my best to be as thorough in my research as possible, I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

Lab Day — the first check-in since reaching baseline, and the first real look at whether management might be possible for iron overload.

After my diagnosis in early July, my iron panels were all over the place for months - high, higher, normal, low. Month after month, the numbers were unstable, and my anxiety rose with each blood draw. I imagined an invisible wrecking ball inside of me, moving through my organs and tissues, causing damage I wouldn’t be able to reverse.

I kept looking for something that would calm it all down - a method, a medication, a practice that would bring the system into some kind of steady state.

As I’ve mentioned before, when you’re diagnosed with HH, you’re given very little direction. You’re told you have an iron overload disorder and that you’ll need blood draws to treat it.

That is, almost verbatim, the extent of the guidance I received.

So after months of research, I decided to explore management. There is a substantial body of work around iron and liver disorders, and enough evidence, though still debated, to suggest that management may be worth considering. I hired a naturopath and began building a structured approach.

By late October, I had a protocol in place, and I was cautiously optimistic.

At the same time, my saturation had reached 85%, and my ability to sit and wait had reached 0%. In early November, my doctor and I agreed to proceed with phlebotomy, although reluctantly, and largely for my mental health.

By early December, my numbers had dropped. Ferritin, however, fell quickly to 14 (with ~50 considered a more comfortable range). But for the first time in months, I felt my anxiety lift.

To support recovery from depletion, my naturopath suggested adding one serving of heme iron per day for a short period. The agreement was simple: support the system through December, and begin the full management protocol on January 1.

The goal was to establish a baseline: stable enough to observe whether management could influence the rate of iron loading over time.

By early February, my iron and saturation were in range. Ferritin remained low at 12.

Baseline. That’s when the experiment truly began.

From that point forward, I held the structure:

• a non-heme diet

• targeted supplementation

• intentional pairing with meals

• supportive lifestyle practices

No adjustments. No cycling. No reacting to individual numbers.

Just consistency.

And now we arrive at this week, my first real check-in under those conditions.

There has finally been enough time to see how my body responds when I don’t interfere with it.

In early February, that consistency brought my labs into a place I hadn’t seen since before diagnosis, and I have held that same structure since.

That’s what makes this set of labs meaningful.

• Iron is now 159

• Saturation is 50%

• Ferritin is 15

Nothing extreme. Nothing urgent. But no longer still.

What stands out to me isn’t that the numbers moved, but how they moved.

Slowly. Gradually. Over months.

Not the rapid rise I saw before structure was in place. Not the sharp swings that came with more aggressive changes.

This time, it’s been a steady climb.

That feels important.

Because it suggests that what I’ve been doing is not irrelevant, but it also isn’t absolute. The consistency I’ve held brought my numbers into range and kept them there for a period of time.

It didn’t stop the system from moving.

And that was never the point.

This week, I saw my hematologist for our scheduled two-month check-in. A phlebotomy had been planned immediately following the appointment, as usual.

It was canceled and my follow-up was extended from two months to four.

I have no symptoms, and all other vitals remain stable, good. There was no urgency in that room and if anything, my doctor seemed genuinely surprised by where my numbers were, having had no treatments up to this point since early November.

That doesn’t prove anything on its own. But it does provide context.

Clinically, I’m not in a place that requires immediate intervention. So now I find myself in a different phase than where I started.

• Not trying to bring numbers down quickly

• Not trying to push ferritin back up

• Not trying to control every variable

Just watching more closely.

Because what I’m beginning to see is that this isn’t about whether management “works” in a fixed way. It’s about what it changes while you’re doing it.

• It appears to slow things down

• It appears to create space between phases

• It appears to give me time

Four months is not a long time in the context of a lifelong condition. I’m not interested in pretending that it is. But it is long enough to see that the system behaves differently under consistent conditions than it does without them.

That’s enough for me to keep going.

Now the question becomes how to move forward:

• Do I add something back in—like a single heme serving each week?

• Do I remove something—like one of the daily tea pairings?

• Or do I hold the same structure for another four months?

This is where the experiment becomes more precise.

Where I begin to look for the point at which my system accumulates iron at the slowest possible rate or whether that slower pace is something that cannot be consistently maintained at all.

From the beginning, I’ve been clear that I’m not trying to force an outcome here. I’m exploring whether management is possible, because if it is, to me, it’s worth it.

If it isn’t, I’ll know and I’ll direct my attention to supporting my health in other ways.

But if it has even a small impact on absorption rate or treatment frequency, that matters. That’s enough.

So this isn’t a conclusion. It’s the first moment where a pattern begins to take shape.

And from here, the work remains the same:

• pay attention

• hold steady

and let the next set of months show me what changes next.

In practice,

Lisa

Let’s be honest: some days, being High-Maintenance is just plain exhausting.

Seven months into this journey, I still have moments where I deeply miss the easy version of myself. I miss the Lisa who could walk into a dinner party and eat whatever was passed to her without a second thought. I miss the spontaneity of a road trip where stopping for snacks didn’t require a label-reading session. I miss the version of me who could push through a stressful week and a hard workout without feeling that strange, heavy vibration in my joints. I miss the simple, unburdened luxury of not knowing my own lab results.

If you are feeling the weight of your diagnosis today, I want to give you permission:

It is okay to mourn the low-maintenance version of your life.

You don’t have to be a warrior or a success story every single second. There is a real, valid grief in realizing that your relationship with the world and your body has fundamentally changed. Pretending that this isn’t a loss only adds to the fatigue of the management itself.

But here is where we find our voice: we don’t live in the mourning. We acknowledge the loss, we let it breathe, and then we fuel the move. This move is the pivot from being a passive recipient of medical ambiguity and that frustrating space where you’re told you’re fine for now while you’re clearly feeling the burn to becoming the absolute owner of your own vitality. It’s the moment you stop seeking permission from a system that isn’t designed for your optimization. It’s the moment you stop apologizing for your complicated requests to people who don’t have to live with the consequences of your iron load.

We aren’t just restricting our lives; we are selecting a different kind of freedom. We are choosing the resilient liver, the quiet joints, and the vibrant, clear-headed 80-year-old version of ourselves over the temporary comfort of being easy to be around. The real luxury isn’t the steak or the martini we gave up, it’s the total agency we’ve gained over our own longevity. We are no longer waiting for a crisis to tell us what to do; we are curating the outcome we demand.

Your High-Maintenance Challenge:

• The Unapologetic Audit: Identify one place in your life where you are still playing small or making yourself easy to avoid explaining your health needs. This week, stop explaining. Let your needs be the baseline, not the exception.

• The Ghost Habit: Write down one easy thing you miss the most. Maybe it’s spontaneity, maybe it’s a specific food. Acknowledge it without judgment: “I miss the ease of this, but I value my vitality more.” Then find ways to create a new ritual to replace the one you’ve let go of or a new way to do something you’ve given up.

• The Owner’s Investment: Spend 15 minutes today doing one thing that is purely about your long-term health, not because a doctor told you to, but because you are the one who has to live in this house.

The Move isn’t a one-time event; it’s a daily reclamation. We are voicing a new standard for how we intend to show up for ourselves, not just in the doctor’s office, but at our own dinner tables and in our own skin. We’ve traded the mindless ease of the past for the conscious power of the future.

Life is the practice,

Lisa

COMING MAY 1st: The Plate: A Guide on How to Think About, Use, and Love Food Again After Diagnosis. Because when you find your voice, the boundaries aren’t a burden—they’re the blueprint.

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

One of the hardest parts of being High-Maintenance on Purpose isn’t the labs or the lifestyle changes, it’s the social friction. It’s the moment at a dinner party when you decline the wine, or the family brunch where you’re navigating the menu like a chess grandmaster to avoid a saturation spike.

Too often, we feel the need to defend our choices. We over-explain. We apologize for being difficult. We turn our self-care into a debate where we’re waiting for the other person to give us a pass.

But here is a shift I’ve been practicing: I don’t owe anyone an explanation for my longevity.

The Mat Stays With You

Owning the mat doesn’t just happen in the yoga studio or the doctor’s office. You take that authority with you into every restaurant and every social gathering. When you decide to protect your liver, you aren’t being fussy or difficult. You are being intentional.

When we stop explaining, we start leading. We show the people around us that our health is a non-negotiable priority, not a diet or a food trend we’re trying out.

Your Voice Challenge

Ready to protect your peace (and your liver)? Here are 3 ways to exercise your voice in your social world:

• The Zero-Defense Script: Next time someone pushes a drink or a food that doesn’t fit your math, try a simple: “No thank you, that doesn’t work for me right now.” No “because,” no “doctor’s orders.” Just a firm, kind boundary.

• The Social Scout Ritual: Before you go out, check out the menu online first. Decide what you’re having before you arrive. You might even be able to message the venue with questions about replacement options or trade-outs before you get there. This removes the decision fatigue in the moment and lets you stay grounded in your choice.

• The Shift the Focus Move: If someone keeps asking why you aren’t drinking or eating a certain way, pivot the conversation to the positive: “I’m actually feeling the best I’ve felt in years with these shifts, and I’m really focused on keeping that momentum. Tell me about [Topic X]!” I also find a simple: “do you really want to hear about my condition” allows the person asking why, a chance to either learn or change the subject. Works great.

You are the primary stakeholder in your life. You don’t need a permission slip to be well.

Life is the practice,

Lisa

COMING MAY 1st: The Plate: A Guide on How to Think About, Use, and Love Food Again After Diagnosis. Because knowing the math makes the boundaries a lot easier to set.

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

I asked for a refund recently on a service that didn’t meet expectations. It was a rather large ask, and I felt it was warranted, but it was also highly unlikely I’d be granted my request.

But right now, I’m working on exercising my agency. In the wake of my diagnosis, it feels more important than ever that I feel empowered to be heard.

So I asked, and I was denied the refund. I didn’t argue with them or demand an explanation; I just asked the one time. And then, today in my inbox, nearly a week later, I got the confirmation of my refund.

It was a small, quiet victory, but it reaffirmed a major pillar of my health: My Voice.

Owning Your Mat

In my yoga practice, there is a fundamental rule: You own the mat. As a teacher, I can offer a cue or suggest a modification, but I am not inside your skin. I don’t know where your breath is catching or where your edge is. Only you know that. The final authority on how a pose is held always stays with the person on the mat.

I’ve realized that my healthcare has to function the same way. For too long, our culture has allowed the medical profession to minimize the importance of the patient. We’ve been conditioned to be passive, to sit quietly and wait for instructions. But while I don’t Google my medical opinions or devalue the years of rigorous training my doctors have undergone, I also refuse to devalue the fact that I am the leading expert on my own body and physiology.

The Team You Hire

I respect the expertise of my medical team deeply. I hired my naturopath and my doctors because I value their knowledge and their training. But I did hire them. They are the expert consultants I’ve brought on to help me navigate Hereditary Hemochromatosis, but I am the one living the life.

My voice isn’t just a secondary detail, it is as critical to my care as my ferritin levels.

If I don’t understand the why or the how of a recommended treatment, I don’t just nod and move on. I stay in the conversation. I ask for the logic. I make sure my mental and emotional health are being considered alongside my blood work. If a path doesn’t feel right for my long-term goal of a resilient liver, I have the right to redirect.

The Quiet Strength of Agency

My liver has zero damage, so I took an active role in directing my care from day one. I didn’t wait for permission to care about my baseline; I used my voice to make sure we were looking at the whole picture, not just the numbers on a screen. I made sure that when a suggested number for concern was beyond my comfort zone, I voiced my opposition and intention to advocate before we reached that number.

Just like that refund I received, the results of using my voice aren’t always immediate. Sometimes they show up a week later in an inbox or a month later in a lab report. But they show up because I had the courage to remain the director of my own health.

Standing in Your Truth

If you are feeling overwhelmed by a diagnosis, remember that you are the primary stakeholder in your life.

• Trust Your Expertise: You are the only person who knows what it feels like to live in your body. That is a form of expertise that no textbook can replace and a good doctor will value.

• Be an Informed Partner: Value your doctor’s training, but don’t let it silence your intuition. Ask the questions that matter to your peace of mind. Being on board with a treatment helps ensure its success. If you have doubts, guaranteed the treatments will be more challenging and less likely to be as effective.

• Lead with Clarity: Advocacy isn’t about being loud; it’s about being so grounded in your own medical needs that you can lead your medical team toward the best possible outcome for you.

Subtraction protects the organ. But the Voice, the quiet, firm authority of owning your mat, is what protects the person.

The voice is the authority.

And life is the practice.

Lisa

COMING SOON: The Plate: A Guide on How to Think About, Use, and Love Food Again After Diagnosis.

Medical Disclaimer: The information provided in this article and within my work is for educational and informational purposes only and is based solely on my personal experience and research as a yoga professional living with Hereditary Hemochromatosis. I am not a doctor, licensed nutritionist, or medical professional. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. Reliance on any information provided is solely at your own risk.

Back on December 10th, I was staring at a paradox.

Due to aggressive lifestyle management and three poorly timed phlebotomy treatments, my iron panel was a mess of extremes. My iron was normal and my saturation level had finally dropped from a staggering 85% to a healthy 22%. But there was a catch: my ferritin had bottomed out at 12.

In my fear of the “free iron” circulating through my system and potentially damaging my liver, I had demanded phlebotomy. By the time of my first treatment on November 3rd, my ferritin was actually at 60—exactly where it should be. But because the hospital was unwilling to veer from the doctor’s original orders, we proceeded anyway. I reasoned that since my saturation was still high, it was a necessary evil.

Two more treatments followed without checking my ferritin levels. By the fourth and fifth appointments, my hemoglobin and hematocrit had plummeted so low that the treatments had to be canceled.

My hematologist’s solution? Cancel everything and wait until February to start a new bi-monthly routine.

My naturopath had a different perspective. She was concerned that my ferritin was dangerously low, but she was also excited. She believed that my supplementation protocol and strict meat-free diet had played a massive role in that saturation drop.

Her advice for the holidays was a gift: “Enjoy Christmas. Eat one serving of whatever meat you like, pause the iron-chelating supplements, and let’s see where the numbers land after the New Year.”

I enjoyed the freedom, though I kept up with my tea and other supplements. However, once January 1st hit, I’ll admit I got sloppy. I didn’t immediately cut the meat back out, I was inconsistent with the chelators, and I even skipped my tea because it was upsetting my stomach.

When it was time for my check-in blood draw, the results were a wake-up call. While my ferritin had risen slightly to 24, my iron and saturation levels had spiked right back to where they were at diagnosis.

I spent a few hours feeling sorry for myself, but then I realized: This is actually the perfect place to start. 2026 is my year-long experiment to see if I can manage these numbers through lifestyle modifications alone. This time, there will be no phlebotomy treatments to falsely inflate my progress. It will be my choices, my diet, and my protocol on the line.

I have 18 days until my next blood draw, and I am leaning into a hardcore reset:

• Zero meat and low-iron meals.

• Layered supplementation (timing chelators and inhibitors for maximum impact).

• Strategic hydration with iron-prohibiting drinks.

• Sweat-producing workouts to assist in elimination.

I want to see how much my body reacts to a management protocol that doesn’t rely on the needle. My goal? To cancel that February phlebotomy and prove that a phlebotomy-free 2026 is possible.

I can’t wait to report back on what I find.

Remember: self-care is A practice. Life is THE practice.

In practice,

Lisa

I am officially damage and injury-free. My scans and MRIs confirmed we caught this early—before the iron could take hold.

Scrolling through HH chat rooms often leaves me frustrated and confused. While there is no “one right path” for everyone, I’ve realized that the road most traveled isn’t the one for me.

I don’t believe that treating overload is my only option. After six months of intense research and high-level medical conversations, I am choosing Condition Management over reactive treatment.

Starting from a place of wellness, I’ve curated a protocol—diet, supplementation, fitness, and mindset—with one goal: To make overload treatment unnecessary. I’m already seeing promising shifts in my iron numbers. This year is my experiment in proactive management vs. reactive treatment. I am not dismissing medical advice. My doctors and hematologist are fully aware of my intentions. We are learning together, filling the gaps where “standard” medical experience with HH often falls short.

In the coming weeks and months, I’ll be sharing the raw data: my iron panels, my protocols, and exactly what is (or isn’t) working.

If you aren’t comfortable with the “wait, watch, and bleed” method, I invite you to follow along. Let’s find out what’s possible when we treat wellness as a daily practice.

#HHLife #Hemochromatosis #LeadResearcher #ProactiveHealth #InPractice