Hemochromatosis: How Iron Overload Damages Your Liver and How Phlebotomy Fixes It

Most people think too much iron is a good thing-until their body starts storing it like a hoarder storing old newspapers. Hemochromatosis isn’t about eating too many steak dinners. It’s a genetic condition where your body absorbs iron like it’s going out of style, even when you don’t need it. Over time, that extra iron piles up in your liver, heart, pancreas, and joints. Left untreated, it can lead to cirrhosis, diabetes, heart failure, and even liver cancer. The good news? There’s a simple, proven treatment that reverses most of the damage if caught early: phlebotomy.

Why Your Body Keeps Taking More Iron Than It Needs

Every cell in your body needs iron. It’s how your blood carries oxygen. But your body doesn’t have a built-in off switch for iron absorption. Normally, your liver makes a hormone called hepcidin that tells your gut to slow down iron uptake when levels are full. In hemochromatosis, a faulty gene-usually the HFE C282Y mutation-breaks that signal. Your gut keeps absorbing iron like there’s no tomorrow. Your liver, the main storage site, gets overwhelmed.

This isn’t rare. About 1 in 200 people of Northern European descent carry two copies of the C282Y mutation. That’s over a million Americans. Yet, only 10 to 15% of them know they have it. Why? Because symptoms show up slowly. By the time you feel tired, have joint pain, or notice your skin turning grayish-brown, you’ve been absorbing extra iron for decades.

What Symptoms Tell You It’s Not Just Aging or Stress

People with hemochromatosis often go to doctors for years with complaints that get brushed off as depression, arthritis, or just getting older. But there’s a pattern. The three most common early signs are fatigue, joint pain (especially in the knuckles), and loss of sex drive. Men usually show symptoms between 30 and 50. Women often don’t notice anything until after menopause, because monthly blood loss used to help them shed excess iron.

Later on, things get more serious. About 25% develop diabetes because iron destroys insulin-producing cells in the pancreas. Around 45% develop skin discoloration-gray or bronze, like a bad tan that won’t fade. Abdominal pain, heart palpitations, and unexplained weight loss follow. By then, the liver is often already scarred.

Here’s the kicker: your blood tests might look normal if your doctor only checks hemoglobin. But if they don’t check serum ferritin and transferrin saturation, they’re missing the diagnosis. Ferritin above 300 ng/mL in men or 200 ng/mL in women? Transferrin saturation over 45%? That’s your red flag.

Phlebotomy: The Treatment That’s Been Working Since the 1950s

There’s no pill for hemochromatosis. But there’s a treatment older than most modern drugs: blood removal. Phlebotomy is simple-about 450 to 500 milliliters of blood (roughly one unit) is taken out weekly or every other week. Each pint removes about 200 to 250 milligrams of iron. Your body replaces the blood volume quickly, but it has to pull iron from your organs to make new red blood cells.

This isn’t donation. It’s therapy. Most insurance covers it. You don’t need to pay out of pocket. Blood centers that accept therapeutic phlebotomy often charge less than $50 per session, compared to iron-chelating drugs that cost $25,000 to $35,000 a year.

The goal isn’t just to feel better. It’s to get your ferritin down to 50-100 ng/mL and keep it there. That’s the sweet spot where iron stops damaging organs but doesn’t cause anemia. For someone with ferritin at 2,000 ng/mL, that can take 30 to 60 sessions over 12 to 18 months. One patient in Boston, diagnosed at 42 with ferritin at 2,850, needed 62 sessions over 15 months. He now feels like he did in his 20s.

What Happens If You Wait Too Long

Time is the enemy here. Once ferritin hits 1,000 ng/mL, your risk of cirrhosis jumps to 50-75%. Once cirrhosis sets in, phlebotomy can’t reverse the scarring. Your liver can’t regenerate. Your chances of liver cancer rise. Survival drops from 95% over 10 years if treated early to under 60% if you wait.

And it’s not just the liver. Iron in the heart causes arrhythmias and heart failure. Iron in the pancreas causes diabetes. Iron in the pituitary gland shuts down testosterone and estrogen production. These aren’t side effects-they’re direct consequences of iron overload.

That’s why experts say: if you’re diagnosed before ferritin hits 1,000, you can prevent almost all long-term damage. That’s 99% of cases. But if you wait until you’re already cirrhotic? Phlebotomy helps, but it won’t undo what’s done.

What Comes After the Initial Treatment

Phlebotomy isn’t a one-time fix. Once you reach your target ferritin level, you switch to maintenance. That means getting a pint of blood every 2 to 4 months, depending on how fast your body re-accumulates iron. Some people need it every 6 months. Others need it more often.

Here’s where people slip up. They feel fine. They stop. Then, years later, they’re back in the hospital with high ferritin again. Maintenance isn’t optional. It’s lifelong. Skipping it is like stopping blood pressure meds because you don’t feel dizzy.

Some patients struggle with vein access as they age. Others have trouble scheduling with blood banks that don’t offer therapeutic phlebotomy. That’s why it’s important to find a hematologist or liver specialist who knows how to coordinate care. Some clinics have dedicated phlebotomy programs just for hemochromatosis patients.

Testing Your Family Could Save Their Lives

Hemochromatosis is inherited. If you have it, your siblings have a 25% chance of having two faulty copies. Your children have a 50% chance of carrying one copy. That doesn’t mean they’ll get sick-but they’re at risk.

Genetic testing for HFE mutations costs as little as $150 now. It’s simple: a cheek swab or blood test. The American Hemochromatosis Society says 70% of diagnosed patients are found because a relative got tested first. Cascade screening-testing family members after one person is diagnosed-is the most effective public health tool we have for this condition.

If you’re diagnosed, tell your parents, siblings, and children. Get them tested. It’s not just about you. It’s about breaking the cycle.

What About Diet and Supplements?

You don’t need to give up red meat entirely. But you should avoid iron supplements, vitamin C pills (which boost iron absorption), and alcohol. Alcohol makes iron damage worse in the liver. It’s not just about quantity-it’s about synergy. Iron + alcohol = faster liver damage.

Tea and coffee can help. Tannins in them block some iron absorption. Eating calcium-rich foods with meals can also reduce uptake. But none of this replaces phlebotomy. Diet is a side note, not a solution.

The Future: New Drugs and Better Screening

Researchers are working on drugs that mimic hepcidin-the hormone your body can’t make properly. One experimental drug, PTG-300, reduced iron levels by over 50% in early trials. If approved, it could mean fewer blood draws. But it’s still years away.

Right now, the best tool is still the same: blood tests. Yet only 12% of primary care doctors routinely check transferrin saturation in patients with fatigue or joint pain. That’s a gap. If you’re over 30, have unexplained fatigue, joint pain, or high liver enzymes, ask your doctor for ferritin and transferrin saturation. Don’t wait for them to bring it up.

Screening programs are starting to change. The CDC now recommends testing everyone with unexplained cirrhosis. That’s catching people who’ve been suffering for years. But early detection? That’s still up to you.

Next Steps If You Suspect Hemochromatosis

If you’re tired all the time, have joint pain, or have a family history of liver disease, don’t wait. Ask your doctor for two simple blood tests: serum ferritin and transferrin saturation. If either is high, get genetic testing. If you’re diagnosed, find a specialist who understands maintenance therapy. And tell your family.

This isn’t a condition you can ignore. But it’s one you can beat-if you act before the damage becomes permanent. The treatment is cheap, effective, and has been saving lives for 70 years. You just need to ask for it.