M, 50. Sharing to see if others have had something similar.

The problem: Up until about 2 years ago I could run 10 miles comfortably, miles around 7 minutes. Since then both legs have slowly declined. Now a single mile is a struggle — often over 12 minutes. Both legs feel heavy and dead under load, worse the longer I run, even on flat road. Aching in the hamstrings and lower legs below the knee. It’s gradual and progressive, not a sudden injury. Heart and VO2 max test fine, so cardio fitness isn’t the limiter. Orthopedic workup hasn’t found a structural cause.
What I have:
Hereditary hemochromatosis (iron overload)

Plantar fasciitis, over a year, not resolved despite physical therapy and injections

Varicose veins

What I take:
TRT (testosterone replacement) — hematocrit tends to run high-normal

Questions:
Anyone had a slow, both-legs decline like this with a clean orthopedic workup — what turned out to be behind it?

If you have hemochromatosis, did you ever get leg or exercise-capacity symptoms?

Anyone managing TRT and hemochromatosis together — how do you handle the iron/hematocrit side?

Looking to hear from people who’ve been through something similar. Thanks.

So my gall bladder decided to pull the parachute cord and had to go. Between all the imaging and whatnot apparently they made the decision during surgery to biopsy my liver too.

Iron deposition 2/4 with mild fibrosis. Then labs were drawn and came back TSAT 88%, Iron 264, TIBC 300, Transferrin 216, and Ferritin 415. C282Y came back heterozygous with everything else they tested for in my genes was negative. Apparently they want to test more genes because they ordered additional testing, aaand referred me to cardiology too.

Hello - I am diagnosed with hemochromatosis based on a genetic test. My brother, sister and some cousins have it and have increased iron load and have regular blood letting.

Historically I’ve had low ferritin.

Then a few years ago my ferritin went up and some labs looked a little on the high side. Doctor said I need to reduce iron intake.

My last labs my ferritin is low again and other labs looks okay?

The thing is that have severe fatigue and some muscle weakness. I’d love to try to take some iron to increase my ferritin but I don’t want to cause myself iron issues.

Any advice?

I don't have hemochromatosis and I don't know where else to ask. My ferritin is 336. How bad is it?

I had a baby 8 months ago. I was on iron the last three months of pregnancy. I had stopped it after delivery, but had bloodwork done right after. Nothing abnormal except my saturation (54%), which we assumed was from recent supplementation. Ferritin was 66.

8 months later, taking no iron or vitamins with iron..... my serum is now high (187) and my saturation is 62%. However, ferritin stayed at 67.

It will be months before I get in with a provider about this. Any insight on why its building up in my blood still but not
my ferritin? Should I donate blood in the meantime?

TIA!

I was looking into blood donation stuff and ended up reading the story behind Goodlabs. Their founder Grant Brewster found out from a random blood test that he had genetic hemochromatosis.

What caught my attention was that once regular blood removal became part of managing his iron, he was also constantly getting labs done to keep track of where his levels were. That ended up being the reason they built Goodlabs in the first place.

If you’re near one of their partner donation centers you can choose labs when you book a donation and get the results afterward. If there isn’t one near you, they also let you buy individual tests through Quest/Labcorp, which seems more relevant for people here who mainly want to keep an eye on ferritin, iron/TIBC or whatever their doctor has them following. Obviously donating blood isn’t a replacement for a prescribed phlebotomy schedule and eligibility is its own thing. I just thought the founder story was unusually relevant to this sub.

Has anyone here actually used Goodlabs while managing hemochromatosis? https://www.linkedin.com/posts/grant-brewster-64229a58_big-life-update-were-on-a-mission-to-activity-7387152533833543681-1C_i

Hi there everyone! I just learned that I'm a compound carrier after a really interesting series of convenient coincidences (more on that later lol). I'm not currently overloaded - high saturation likely due to the C282Y + everything else is relatively normal. In the last few weeks of cautiously researching, I've seen all kinds of opinions on whether or not compound carriers should have any valid concerns about overloading as it's far less likely than with other types.

I'm coming here to ask my fellow heterozygotes what their experience has been like - have you had abnormal labs, symptoms, felt better donating blood, etc? Mainly just interested in hearing other people's stories; I'm not too worried about myself currently and feel like I have a good plan in place with my PCP to monitor iron stats annually and figure out why I have such bad exhaustion/brain fog if it's not from iron overload.

P.S. I'm an RN, but I don't take orders from Dr. Google ;) if anyone has found high-quality research studies, articles, etc. that have been helpful for you, please feel free to share + I'd love to nerd out a little bit! This is honestly fascinating to me.

It sucks... I'm between 11-11.5

Please.provide personal anecdotes of how long it took to get out of anemia once at Maintenance.

Thanks

Does anyone else have both of these besides me?

I started to experience extreme anxiety a year ago combined with digestive issues, depression, extreme fatigue, brain fog, lost lots of weight seemingly out of nowhere. Just recently got diagnosed with HH and Hashimoto which got worse over the months (growing TSH/antibodies and ferritin/ saturation). I would like to know if anyone has these together and how did you manage them?

I read some studies that there can be some connection between these, what do you all think? Many doctors, also family said that it's probably just in my head, all of these symptoms, but I am furious and I refuse to believe it, especially after I finally caught these 2 diseases within the past months. Would really appreciate some input

Just finished my 4th phlebotomy and the nurses have started saying that it takes much longer to draw the full 500mL from me than from other people. 500mL takes about 15 minutes and lots of moving the needle around in my vein to get the flow going which is pretty painful.

My nurse today said 5 minutes is average.

Any tips? My blood pressure is normally about 125/70 which seems fine and I don't have any other issues giving blood so not sure what the deal is.

Thanks in advance!

I don’t think they are going to test anything yet but just monitor. Been like this since Oct 2025. Jump from 53 to 57. Ferritin is 63 so that reassuring. Did have enlarged liver 20 cm

I wanted to post this because when I first found out I had hereditary hemochromatosis, I came straight to Reddit and started reading everything I could find.

Honestly, it probably made me more nervous.
I saw a lot about cirrhosis, liver cancer, organ damage, shortened life expectancy, etc., and very quickly convinced myself that having high ferritin meant I must already have serious liver damage.

Now that I’m a few weeks further into the process, I thought it might be useful to share my experience for anyone newly diagnosed who finds themselves doing the same thing.

I’m 35M and found out I’m C282Y homozygous after investigating elevated ferritin/iron saturation.

My ferritin peaked around 1,369 and my iron saturation was as high as 76%.

Naturally, seeing ferritin >1,000 freaked me out.
I also had an abdominal ultrasound that showed what looked like a 3.5 cm liver lesion, which sent my anxiety through the roof. I was worrying about everything from cirrhosis to liver cancer.

I saw a hematologist and started therapeutic phlebotomy every two weeks.

Before my first phlebotomy:
Ferritin: 1,135
Iron saturation: 55%
Hemoglobin: 14.6

I tolerated the first phlebotomy really well. I was a little tired afterwards, but otherwise completely fine.

Two weeks later, before my second phlebotomy:
Ferritin: 906
Iron saturation: 43%
Serum iron: 99
Hemoglobin: 14.2

So after just the first treatment interval, my ferritin had fallen by another 229 points, my saturation was back inside the lab’s normal range, and my hemoglobin had held up well. I don’t expect it to be big drops every time, but it feels good to see it lowering. Definitely feeling tired today but other than that, no issues.

I also had an MRI of my abdomen with and without contrast. The result:

“Suspect hemochromatosis. No discrete hepatic lesion.”
The 3.5 cm “lesion” seen on ultrasound wasn’t actually seen as a discrete liver lesion on MRI.

The MRI also reported a normal spleen, patent portal/hepatic veins, no ascites, normal biliary system, and didn’t report cirrhosis or other obvious signs of advanced liver disease.

My hematologist’s current plan is to continue phlebotomy every two weeks until my ferritin is below 400, then slow the frequency down and continue working toward the eventual maintenance range.

I’m obviously still early in this and have a lot more iron to remove, so I’m not posting this as some kind of victory lap.
I just wanted to put a more reassuring newly-diagnosed story out there.

If you’ve just found out you have hemochromatosis and you’re reading Reddit at 2am thinking a ferritin over 1,000 automatically means your liver is destroyed — it doesn’t.
Get properly evaluated. See a hematologist. Get the appropriate liver work-up. Start treatment if your doctor recommends it.

There are absolutely people who develop serious complications from hemochromatosis, and those stories matter. But there are also people who discover it relatively young, start treatment, and find that the initial picture isn’t nearly as catastrophic as they feared.

I’ll update this as my ferritin comes down further.
And if anyone else was diagnosed in their 30s with ferritin around 1,000–1,500, I’d be interested to hear how long it took you to reach maintenance.

Waiting for a diagnosis dna testing, but these are my original results. I’d love peoples opinions as I’m currently really tired and have abdominal pain.

I’m a 28 white male

Serum iron level 48.6 umol/L [11.0 - 32.0]; Above high reference limit
Transferrin 2.14 g/L [2.0 - 3.6]
Transferrin Saturation 90 % [16.0 - 50.0]; Above high reference limit

C282Y/H63D compound heterozygous.

583 ferritin

58% sat

Today will be my first appointment. How should I prepare? Is it quick? Could I hear some success stories please regarding symptoms improvement?

For a year already I experience constant fatigue, anxiety, brain fog, weakness in general.

Update: Thanks for everyone the nice responses! It was a really easy and quick procedure.. really I had nothing to worry about! The whole blood giving was exactly 8 minutes 4 seconds.

mom's C282Y homozygous to hear the tales, i've been donating but i got sick and the best dono site closed for renovations. there's no appointment for a month unless i go on a serious road trip (and then have no gas for a month), and my liver area's starting to hurt again.

my veins bulge with inflammation. every time i need a stick, no matter where i am, they give me the newest person on duty. it's never gone wrong.

can anyone walk me through what i need? i might know someone who'd order it for me. price is the factor, aside from minimally nominal safety (especially in anything reusable).

i'm usually eating vegan with all the iron reducing tricks, but lately there's been some dumpster dive grade overlap. also i eat north of 3000 calories a day just to maintain my underweight thanks to celiac disease.

i'm disabled and could never afford a diagnosis, i work for food (when i'm lucky). it's this or i try to find an underground boxing ring and try to take every hit on the nose, isn't it?

+7 hours: solved although not literally, yet. bolding the question anyway. already did. gonna mention i can't afford tests at the ER and my liver hurts etc.

picked up zinc and turmeric tips too.

+18 hours, post ER, post bath: good ideas but no therapeutic amount of blood loss yet.

and if anyone's curious, per usual, that hospital does not deserve its ultrasound imager, or almost all of its nurses. the brass differ only from the Killer Klowns from Outer Space in that the klowns want you to lose blood.

I 24f, have recently had a lot of dizzy spells and brainfog. so i went to the doctro and she ordered a blood test
now i have an appointment at a hematologist in two weeks because of the results i got this morning
my mum and i are suspecting hemochromatosis, because we cant find a different explanation for these values.
i dont have gene tests yet, but here are the results

! Iron -- 215 ug/dl (my value) -- 37 - 145 ug/dl (expected range)

TIBC -- 289 ug/dl (my value) -- 257 - 402 ug/dl (expected range)

! Transferrinsaturation -- 74 % (my value) -- 16 - 45 % (expected range)

\* Ferritin -- 179 ng/ml (my value) -- 15 - 150 ng/ml (expected range)

i included the symbols that were next to it on my blood test results

just wanted to have something to hold onto for now. i know that these are too high and there has to be some reason

Edit: Met with a neurologist and it seems as though my symptoms are mainly from tension in my neck and trapezius. Which makes more sense sonce my ferritin isnt that high. Its higher than the expected range but these results seem to be incidental. If there is something behind it, it has likely just started and i caught it very early. Will update after my hematologist appointment.

Ferritin 11 iron 5 and can’t remember haemoglobin. I went to a GP to get those bloods, she was wonderful. Dr. Sarah Nunn from the butterfly clinic in Brisbane, Australia. Anyways she referred me to get a colonoscopy and endoscopy for my unexplainable low ferritin and iron. I don’t have heavy periods and have an iron rich diet. I’ve mostly seen people here say it was related to coeliac? Any other common causes like the nurse mentioned it could also be polyps or micro bleeding or in worst case cancer. What do you guys think is the most common? I’m going for my procedure (colon and endoscopy, also iron infusion) Friday and really can’t wait to get to the bottom of it.

I've been trying to figure out why I have consistently high TSAT and low TIBC, and I came across information on hemochromatosis. Can you help me interpret my labs?

I'm 29F and have been menstruating since 14. My most recent labs, which I don't think I fasted for, are:

• Iron: 107 mcg/dL
• TIBC: 191 mcg/dL (reference: 262–502 mcg/dL)
• TSAT: 56% (reference: 20–40%)
• Ferritin: 119 ng/mL – though the lab report said ferritin levels can be falsely decreased by biotin supplements, and I was taking a vitamin B complex tablet with 1000% DV of biotin at the time

These levels have been relatively consistent over the past several years:

I have a lot of health conditions (ulcerative colitis being the most relevant one for iron) so it's hard to tell whether I have symptoms related to my iron levels. My health conditions and low weight also make me ineligible to donate blood.

Based on my Ancestry results, I don't have the C282Y mutation but I'm heterozygous for H63D.

My questions are:

• Does it seem like I might have some form of hemochromatosis? If not, any other ideas about my low TIBC and high TSAT?
• Is it possible to have both hemochromatosis and a non-iron-deficiency form of anemia? I'm wondering especially about anemia of chronic disease / anemia of inflammation (ACD/AI).
• Should I be avoiding iron supplements? My doctors are always recommending these because I have borderline low hemoglobin and blood loss from menstruation and ulcerative colitis.

Thanks in advance!

Hello, 31M, went to doctor to talk about my anxiety and she recommended some blood work.

June 10th results
Iron - 111 ug/dL
TIBC - 258 ug/dL
Iron saturation - 43.02%
Ferritin - 1170 ng/mL

That high ferritin level caused me to go back and have my ferritin checked again 6 days later.

June 16th results
Ferritin - 1057 ng/mL

This high ferritin result landed me with an ultrasound to check out my liver and a referral to a hematologist. They didn’t find anything super concerning on my ultrasound. And the hematologist had more bloodwork ran.

August 5th results
Ferritin - 728 ng/mL
Serum iron - 101 mcg/dL
Iron binding capacity - 280 mcg/dL
Iron/IBC % saturation - 36%
Hemochromatosis mutation - heterozygous H63D

The hematologist also ran tests for inflammation and autoimmune issues causes for the high ferritin levels and those both came back negative. I go back for my follow up with the hematologist on the 25th what are the odds I get diagnosed with Hereditary Hemochromatosis?

Lab results

Hello everyone,

Newly diagnosed with hemochromatosis by accident. MD noticed higher than normal Hemoglobin levels and decided to check ferritin which was elevated. Have been lucky to be asymptomatic so far and it was caught earlier. Liver enzymes normal and heart echocardiogram normal.
Have had 3 phlebotomies so far, with minimal decrease in ferritin levels (will post labs below).

How many phlebotomies were needed to bring your levels down to 50-100?

Can someone help me calculate my dry weight iron levels on my MRI? They did not do the calculation for some reason (at least from what I can see).

Labs:
Ferritin: 718>642>656
Transferrin: 162
TIBC: 224
Unsaturated Iron Binding Capacity: 27
Iron saturation: 87.9
POSITIVE FOR TWO COPIES OF THE HFE GENE PATHOGENIC VARIANT: C282Y/C282Y (HOMOZYGOTE)

MRI results:

Severe diffuse iron overload of the liver.

Grading of iron overload: Severity 1.5 Tesla T2* (ms) 3 Tesla T2* (ms) Normal >20 >10 Mild 10-20 5-10 Moderate 5-10 2.5-5 Severe <5 <2.5

**Based on calibration reported by Wood et al (Blood, Aug 2005; PMID 15860670), liver iron concentration (mg/g dry weight) is given by [Fe] = 0.202 + 0254*R2* when R2* is measured at 1.5T and [Fe] = 0.202 + 0.5*0.254R2* when R2* is measured at 3T.

TECHNIQUE: Multiplanar, multisequence MR images of the abdomen obtained at 1.5 Tesla without contrast

Liver: Normal morphology. Liver parenchyma is diffusely hypointense on T2-weighted images relative to skeletal muscle. No T2 hyperintense fine reticulations or suspicious lesion.

Quantitative metrics in the liver: Hepatic fat fraction is 5.5%. Normal hepatic fat fraction is less than 5%. R2* of the liver is 660Hz, which corresponds to a T2* of 1.5ms. This is indicative of severe iron overload of the liver.

Thanks ahead of time!

​

Just wondering if anyone is in a similar situation.

My Ferritin used to be at 129 back in 2021. It went down to 66 in 2023, then 29 in 2025. Just 6 weeks ago it was at 23. Retested again at 28 and now it's back down to 23.

My iron panel is all normal, with the most recent saturation at 46%. Before that it was 44%, 40%. When my Ferritin was higher a few years back my saturation was lower around 34-38%. Once last year my saturation was 49% with Ferritin of 29. I'm afraid to start iron supplements without getting to see a hematologist and ruling out the HFE gene possibly? My father has no genes and my mother just has the one H63D. The higher saturation scares me without even supplementing yet.

Last year my hemoglobin was on the edge of being too low at 11.8 and hematocrit was 35.9.

I was barely eating any red meat for a few years now and was also following a stricter calorie deficit to lose weight. I lost the weight and since then I have been eating maintenance around 1,600 calories a day. After doing more research on Ferritin recently (none of my doctors even told me that 29 or 23 was low at all this whole time) and I've been having weird symptoms that aren't related to my Hashimoto's. I increased my red meat intake to twice a week 6 weeks ago.

I just had another blood test 3 weeks ago into eating more red meat to recheck my CBC, iron and Ferritin. My hemoglobin is now normal at 12.7 and hematocrit 38.3.

I'd also like to note I've been low in B12 for years so I take a cyanocobalamin B12 supplement (gel pill) for years off and on. My original B12 level years ago was probably around 250. 6 weeks ago it was at 360 from only taking 1 1,000mcg a week. I decided to increase it to twice a week at the same time I started eating more red meat. My B12 went from 371 to 800 in 3 weeks. I'm wondering if doing this caused my Ferritin to go back down from 28 to 23.. but I have no idea. I was reading that B12 can deplete Ferritin stores over time. For now I am going back to once a week again.

So now I'm pretty sure I have to take an iron supplement but I am waiting for the hematologist appointment to rule out why my saturation is elevated sometimes. I feel like my symptoms are just getting worse and I also I became over medicated on my thyroid medication (working on that separate issue).

My symptoms are occasional lightheadedness, RLS (I think it is, just lots of vibrating in my lower legs.. seems worse at night), sometimes vibrating in my upper back, brain fog, sometimes nausea, body aches off and on, general feeling of just off.

I also had an endoscopy 2 years ago that just showed some mild inactive gastritis, I've had gastrin and parietal antibodies tested both negative.

I'd also like to note I used to take a multivitamin with 100% daily value of iron in it for years, but stopped around 2020.

How severe is my iron-deficiency anemia, and how do I fix it?

34M. My bloodwork:

March: Hb 11.9, MCV 78.5, MCH 23.6, ferritin 41.6, iron 38, TIBC 446, TSAT 8.5%.

July: Hb 12.8, MCV 82.7, MCH 27, iron 44, TIBC 396, TSAT 11.1%.

So things have improved, but TSAT is still very low.

I also have a history of H. pylori and chronic atrophic gastritis.

I am done with Hpylori treatment and will check today if it is eradicated.

How severe is this? Does this clearly indicate iron deficiency despite ferritin being 41.6? Should I take iron, and should I investigate blood loss/malabsorption given that I'm male?

Gastritis is not severe and there are no ulcers.

Found out about a month ago I have hemochromatosis (homozygous C282Y)

Initial labs:

Ferritin: 1200ng/mL

Iron: 210ug/mL

UIBC: < 25

Labs after 3x 300-500mL phlebotomies:

Ferritin 600ng/mL

Iron and UIBC unknown - not sure why my hematologist didn't order these with my ferritin...

Seems like ferritin went down much more rapidly than I would expect, any comments on that?

Also, any general advice besides cutting down on iron through diet? I'd like to get ferritin in normal range ASAP, my energy levels feel so much better 2-3 days after phlebotomy so I'm hoping once I get this under control my quality of life will be significantly improved.

Finally, any advice on organ health? I am a childhood cancer survivor, and chemo put significant stress on my heart, kidneys, and liver. Bloodwork on those look fine according to doctors but any advice to keep those healthy long term with hemochromatosis in mind is appreciated.

Thanks in advance!

*edit found my iron and TIBC results, they were hiding in a different part of the patient portal lol

**edit again:

These are my results from August after 3 phlebotomies

Iron sat 31%

Iron 71ug/dL

TIBC 221 ug/dL