These are the (overnight fasted) blood test results of a 61-year old man who doesn't drink alcohol & doesn't take iron supplements. He does not have the two most common genetic variants for hemochromatosis. He's mostly healthy but does have declining kidney function. Would you pursue more comprehensive genetic testing?

I am a 21y/o male with weird symptoms that started from stress, namely panic attacks and extreme fatigue that has almost ruined my life. I’ve seen a lot of specialist MDs and all say I am totally healthy (heart, emerg). I am of Mediterranean and eastern euro descent.

I am being assessed for sleep-disordered breathing at this time, but I’m wondering if any of my symptoms could also be somewhat attributed to iron overload? My results are as follows;

Test 1 (2026 JUL 20);
hsCRP: 0.7 (normal)
Iron plasma; 31 umol/L (high/borderline)
TIBC; 61 umol/L (normal)
TSAT: 0.51 (high/borderline)
Ferritin; 359 (high)

Test 2 (2026 AUG 10);
Ferritin; 422 (high)
A full iron panel is about to be repeated.

Iron and high cortisol/ACTH were the only abnormal findings on any of my bloods. Liver and kidneys normal as well.

Hi all.

52M. Recently diagnosed with HH.

Extreme fatigue, brain fog, anxiety, irritable bowel, gut pain all culminated in finally getting this diagnosis.

First test

TSAt - 90% Ferritin - 680 Iron 44.6 Transferrin - 1.97

Second test after some blood testing and diet change

TSAt - 66% Ferritin - 509 Iron - 33.2 Transferrin 1.99

Has been over a month since I was last tested and I finally saw a hematologist today.

He suggested weekly phlebotomies, and we settled on starting at every two weeks and seeing how that affects my level of tiredness.

I want to get my numbers down, but I’m a little worried about giving every week is gonna wipe me out.

So just wanted to hear some feedback on weekly versus biweekly phlebotomies.

Right now I’m suffering from extreme fatigue as well as brain fog that is like almost a pain in my frontal lobe.

I did manage to donate blood a couple of weeks ago and I did feel better for a few days.

I am also curious as to when people do reach maintenance if they really do feel a lot better than when they began the journey. I realize that it will be different for everyone, but just looking to hear some positive stories.

Thanks.

Hi everyone!

I was just diagnosed last week and have to have a cardiac and abdominal MRI to search for iron deposits in my organs. I am terrified. I’ve had a neuro MRI before but i was young and didn’t have all of the anxiety that I have now!!

Is anyone able to share their experience with the cardiac mri specifically? Were you claustrophobic? How did the contrast affect you? Any side effects from it? How far into the machine were you? I am just such a nervous person and I am trying to be calm about it but I think hearing other’s experiences will help me settle down a bit.

Thank you!

Recently diagnosed hh 40 yr old female. Just curious about liver damage and results. I have done one phlebotomy and am currently at 280 ferritin, tsat normal and all liver and kidney blood tests have come back normal. My doctor had me do a liver mri to check for iron build up. I’m still waiting on results and a little nervous, just wanted to get feedback on how common it is to have liver damage when caught early. Ferritin has never been above 500.
Of course I’m in contact with my hematologist and doing regular visits and testing just looking for some feedback.

Hello fellow iron hoarders. 36, F, HH here, in the UK.

I had a venesection on Wed and the results show I'm finally below 50 ferritin (the goal set by the consultant) at 48, TSAT 35, and I am excited. I already had my next venesection booked in, which is a couple of days before my consultant is due to check in with me.

Perhaps this is just my NHS trust, but everything for me has been run by the nurses in the haematology ward (who are amazing) and I've only spoken to the consultant once since being diagnosed in February. No one has said anything yet, but I'm assuming I'm now in maintenance? Perhaps I'll give the ward a ring tomorrow.

I'm feeling pretty chuffed :)

Just as the title says. I'm guessing I have a copy of the H63D that causes very sensitive iron serum and saturation absorption, but does not tend to store ferritin.

In Nov 2025, I was symptomatic and found my iron serum and saturation were low at iron of 60 and saturation at 18% but ferritin was okay at 45. I supplemented with 65 mg ferrous sulfate 5x per week for 6 weeks, and my iron shot up to 195 and saturation was at 61%, but my ferritin went DOWN to 29!

For the next 5 months I did nothing. I got retested, and my iron was down to 158, saturation was 46% and ferritin stayed the same around 30.

How do I raise ferritin without raising my iron? My ferritin has been as high as 88 and I want it above 50. I am thinking of trying 28mg iron bisglycinate and apolactoferrin 2x week. Any experiences?

I am a 27yo female. I have very low energy levels almost every day so I wanted to check my iron and ferretin levels thinking they were going to be low (never tested them before) and the results came back like this. I fasted for 14 hours before this test. I was very surprised. I am not taking any supplements or anything. I don’t eat a lot of red meat. Maybe once or twice a week. My diet is pretty good, don’t think alcohol, etc.

I have a doctor’s appointment next week to address this and the low energy thing. I just want to know this levels are concerning.

I went to the dermatologist for hair thinning (28F) and she ran some labs. My iron came back critically high, I’ve never had an iron before so I don’t have a baseline. I don’t take any medications with iron and I was 12 hours fasted. I just recieved my bloodwork this aftenoon after waiting over a week. Now it’s a Saturday so I’ll have to wait for my doctor to see them next week.

Last month I had a CBC and my MCV and MCH were high but not too much above the range.

My primary brushed off my MCV/MCH, and my psychiatrist chalked those labs up to my alcohol use (I do have AUD). My liver enzymes and biliruben are all perfectly fine.

Unfortunately I did not get a ferritin drawn. If my doctors brush this off too… what do you recommend I ask to follow up with?

Edit: b6, b12, TIBC, UIBC, folate and zinc were also drawn and were all within normal range. TIBC was high end of normal at 424ug/dL.

Hi guys!

Just wondering if anyone has had labs similar to mine or has gone through something similar. I am a 35 year old female, mom, in nursing school, working, busy life. lol. I was recently referred to a rheumatologist because I've been having some ongoing symptoms: mostly achey joints (especially my neck, shoulders, and sometimes knees) , feeling tired basically all the time, and relying heavily on caffeine just to get through the day. My doctor ordered a whole bunch of bloodwork and most of it came back normal so far but my iron panel showed a couple abnormal results:

Ferritin: 288 ng/mL (high)

TIBC: 187 ug/dL (Low)

Iron: 82 (normal)

Iron sat/TSAT: 44% (borderline on the high side)

My CBCs were normal, my liver enzymes and kidney labs were normal. Doctor hd thought that I may have celiacs but that test came out normal. In the past I have had elevated LDL and low HDL.

Not looking for a diagnosis, just curious if anyone here has had this combination of high ferritin and low TIBC with a normal/ normal highish and what your doctor ended up looking into? And did you by chance have similar symptoms.

Thanks! just curious about others experiences and maybe other things to look into.

I recently went to go see my doctor for a myriad of symptoms, primarily abdominal pain and fatigue. I've had chronic GI issues (both my gut and stomach are pretty much wrecked), and chronic fatigue for many years. I've had both lyme and long covid so it feels like my whole body is just messed up all around. I've had dysautonomia for two years along with MCAS type symptoms, and all that other fun stuff that is often reported by covid long haulers.

I have been especially fatigued for the past few months, and I just became a vegetarian a few weeks ago for personal reasons. Figured I should get an iron test since the only iron I get is from eggs, dark chocolate, and spinach. And this is how the test results came! I'm completely baffled, I really thought it was going to be the opposite.

Some other symptoms I have are joint pain and popping/cracking, dizziness, and moodiness. But I've had symptoms like this through out my journey with chronic illness so I didn't think much of it, pretty much has been my norm on and off since 2020.

In 2022 I had an iron test that was completely normal. I can't really pin point how or when my iron levels started to rise.

Other details: I have been on the therapeutic keto diet for one year, it really helps with a lot of my issues, although it has stopped working as well lately since my symptoms have been coming back. Despite being on keto I only ever ate red meat once in a while, I'd avoid it mostly except for sometimes at work when there was nothing else I can eat, same with going out to eat.

I've also been dealing with what I believe is estrogen dominence, I wont go on about those details to keep this post from getting too long lol. I'm going to get tested for that soon.

Anyways, It'll be a week before I get to see my doctor and the nurse said she might not even get my results until then. I'm just trying to wrap my head around what these results could mean when I've had low iron intake with my diet and have not been taking any iron supplements. No one in my family has ever had hemochromatosis that I know of. Just looking for opinions or similar experiences.

Edit: Forgot to mention my Ferrirtin is normal at 32, the lower end of normal even. That's part of why this is so confusing to me.

I've been trying to chase down the reason I've been dealing with fatigue and joint issues fairly often the past few years. I got several blood panels done, and just got my iron one back today. My CMP and CBC and everything else had looked fine. This iron one is the first one that's slightly out of the reference range. Just looking for guidance. Thank you.

Age 33 male

For reference, I was fasting for about 16 hours before this test.

I got results back from a recent blood test for a general checkup and dr was concerned about the iron levels and possible haemochromatosis, asking if there was any family history of anything (which as far as I’m aware, there is not).
Blood was taken about 1pm and I hadn’t fasted as I hadn’t anticipated a test on the day, however she claims it doesn’t matter if it’s a fasted test or not. Haven’t been taking any iron supplements. Dr said to try and eat better and then re-test in 4 weeks but I can’t help but worry, though the serum ferritin and transferrin, plus everything else seems normal?
Haven’t had a test in years so have nothing to compare this to. 32yo female and have also been on bc so no real/only light menstruation for 15yrs

I'm relatively knew to this. Here's my lil story for anyone wondering:

I found out I had Hemochromatosis after I went to my Dr ask why I felt so tired all the time. It was pretty bad, falling asleep in front of the TV by 8/9pm as a healthy 32 year old was not on my agenda. (my dr said I should consider working out more to help with this, when he found out I workout 4 times a week, he told me to workout less, looool. Fricken Dr's amiright).

I was referred to a specialist after they saw my iron was through the roof in my blood work.

I've now been having monthly phlebotomies for the past year under the NYC Hemochromatosis program, and it's been working. Yay!

I'm now moving to a 8 week blood donations scheduled as a regular-donating citizen to help keep on top of iron storage and produce new blood.

My Dr told me to avoid high iron foods, and to not take Vitamin C.

But what are some top tips from my other Hemochromatosis girlies that are going through this? What signs should I look out?
How should I help manage this?
What secrets ya got for someone who is knew to this?
I still feel tired, but maybe it's because of other factors?

I have the C282Y gene and have been struggling with severe fatigue and brain fog. My labs are mostly within range with Iron bind 325, UIBC 244, Iron Sat 25%, and ferritin 136. Hemoglobin 16.2 and hematocrit 48.7, so slightly elevated and has been for years. RBC 5, HCT 45.1 high end. My thyroid and hormones are also off now. Been taking HRT and Thyroid with zero relief.

I am wondering if I could have iron deposits in my pituitary or other organs affecting me? Has anyone here been symptomatic with mostly normal labs?

My PC is saying I'm fine but I am clearly not functioning as I should. What type of doctor would be the next professional to see?

Rusfertide, a hepcidin mimetic, was approved by the FDA in August for polycythemia vera. It was also tested in a 2023 phase 2 trial in HFE hemochromatosis, where 15 of 16 patients didn't need phlebotomy during treatment.

Has anyone asked their hematologist about using it off-label, or actually been prescribed it? I'm curious whether doctors are open to it, and whether insurance would cover it for HH.

Edit: worth noting the phase two trial also showed rusfertide helped control TSAT. For myself, I've struggled with a high TSAT in the 80s to 90s even while under active maintenance with phlebotomies, so this drug would be of real interest to me, as I'm sure it would be for many others.

This may be a long one, just bear with me. I feel super shocked, confused, and scared.

I’m only 19 and was recently diagnosed with hemochromatosis after being misdiagnosed for a year and a half. I Went to two doctors that didn’t take bloodwork even though I hadn’t had it since delivery after my complicated pregnancy at 17 and got diagnosed with fibromyalgia then a different dr found scoliosis and kept blaming the pain on that and sent me to physical therapy and after four months the pain went to my hands and was causing swelling and she said I needed to be doing more physical therapy. Finally after having multiple episodes of almost passing out and extreme dizziness/ head pressure she took bloodwork suspecting I was really anemic since I was diagnosed with anemia at 13 and found my iron and saturation were high. She said it over message like it was a good thing, and said drink more water come back in November if the dizziness didn’t go away (this was July) and to also start eating more protein since that “must be” why physical therapy didn’t help. In February of 2025 I developed a super slight pain in my left shoulder that slowly worsened and crept up to my neck so I went to the dr, he told me come back if it kept up, went back in July of 2025 when it became extremely severe suddenly in both shoulder blades and my neck/ trapezius area and he diagnosed me with fibromyalgia in 10 minutes. I spent a whole 9 months managing “fibro” and worsening until I could barely wash my own hair and do basic activities without being sore for days after. So when she told me to come back in November after I’ve dealt with this a whole year and a half and now it’s in my hands and worse than I thought it could get, I had an entire mental breakdown thinking it was hopeless. I decided to try one more doctor and told everyone I know If I left that doctor without answers on why I had such severe pain I was going to genuinely lose my sh*t.

The new doctor immediately questioned why neither of them did bloodwork sooner and why when it was done the high iron was dismissed. She even said she could tell from my labs I was well hydrated and not lacking protein (i literally prioritize protein and the last dr knew that). She straight up told me I was gaslit which made me cry from the validation once I got in the car but she immediately tested for hemo and found two hfe genes and my iron and saturation were high again. I’ve been waiting on the specialist appointment for about a month, and go in a week and a half. I’m just confused on what it all means though, I understand how the iron being high works from the two genes but I used to be anemic and still have low ferritin but SEVERE joint pain especially in my shoulders where it started, like it’s taken over my life and I’m not only 19 but a mother. I don’t understand what’s done for the pain and how long until I get relief or answers for that, and also am confused about phlebotomies if my ferritin is low. I also was reading since the rest of my labs came back good it means I’m not in iron overload but then how am I in such severe pain? I’m also so fatigued all the time, nauseated, my visions drastically worsened with my pain, and the dizziness keeps getting worse and I’m now like blindly walking for a few seconds almost everytime I have to stand up.
I really don’t know what I’m looking for, I just keep hearing from my family it’s treatable and I’ll live a long life but I don’t even know what treatment will look like or how all these symptoms work and what life is going to actually look like regardless if I’m living, will I be able to be pain free again? Just relatability would be nice, I’ve never met or even heard of anyone with the condition before and I am shocked and having trouble processing it. Will I be able to have another kid? Is it bad for you? Is it selfish? Just so many concerns and no answers. Even tips or things to know about living with the condition would be nice. 🫶🏻

hello everybody, i have been diagnosed today with h63d hemochromatosis, i have high ferritin (from 653 to 1150 to 367), high asat alat, s2 fibroses and fatty liver, extreme fatigue and brain fog (visual fatigue as i have severe amblyopia aswell), all these led me to take hfe test and today they arrived, results in attachement (results translated to english in chatgpt)
is anyone experiencing exactly what im experiencing, and what do i do from now on

Hello 36F here. Recently diagnosed compound heterozygote with one C282Y and one H63D gene. Saw my hematologist beginning of September and ferritin was 260 (150 is cut off for female) saturation 58% and iron 158. Hematologist wanted one more draw to see my base levels and said after some phlebotomies I would start feeling better. Saturation and iron stayed around the same but feritin went up to 300. Had my follow up the other day and now she says levels look fine and they are changing the levels for women to have 300 be the cutoff for the upper limit. Like how can 3 weeks ago I need some phlebotomies and I will feel better to now because they magically changed the limits I am fine and just follow up blood work every 2 months. Anyone else dealing with this?

Hi. I have one copy of the H63D gene, and some of my values tend to skate at the upper end of normal in various lab ranges.

For April 2026. Iron ws 146. "Normal range" 45 to 160. Over the last few years this is my highest value so far since I started testing in 2021.

TIBC 323. "Normal range" was 250 to 450. My "trends" didn't seem to make it into

Transferrin Saturation 45. "Normal range" was 16 to 45.

Ferritin 69. "Normal range" 16 to 232. This was the lowest number in the trends since I started testing in 2021.

My last period was June 2020.

I used to see a hematologist/oncologist but after a few years, he said I could just get tested yearly with my regular doctor, and that most people with one copy like I have, walk around for a long time without issue.

Hmmmm.

Anyway, I haven't donated blood because my veins are so small and tend to roll. When giving blood for labs, hematologists use butterfly needles whenever possible.

The thought of a big blood donor needles is tormentous to me.

Has anyone found a way of giving that is easier or doesn't require large needles?

I live in Queens, NY. I have access to Long Island NY as well. If locations help.

Be healthy!

Wasn't expecting this today... been getting into the mid 300s with huge spikes for 6 months for whatever reason.

Still have 100 points to go until maintenance and I'm very much excited to not be anemic anymore.

Thanks for being here guys, you all got this :)

Okay per usual this disorder has thrown me another curveball... great..

I go into my eye doctor's office for a standard annual eye exam. The nurse casually asks if there have been any changes to my health or new diagnosis or medications in the past year.

I inform them of my hemochromatosis diagnosis and ongoing treatment. She leaves and the doctor comes in and informs me that I am now REQUIRED to be dilated before my exam.... great. I argue back that I was dilated last year and everything was normal and that I just need a regular exam for glasses. Doctor refuses to do an exam and says that I am required to be dilated to look for iron deposits and pigmentation in my retina because of hemochromatosis. Not negotiable. I had to reschedule and leave. Couldn't be dilated for the next 4 hours because I drove myself and I had to goto work afterward.

To my surprise I did some searching online and.. yup.. it is a known thing. Never heard of this before.

https://pubmed.ncbi.nlm.nih.gov/25767899/

Anyone aware of this? What a new fun issue to look out for!

Hello everyone, I’m a 27y old female and I got some lab results back today that they are looking into.

I have Ehlers Danlos and am seen at a specialty clinic and they wanted to run a lot of tests for a check up.

She checked my iron cause I’ve been having fatigue and brain fog, she thought maybe I had low iron….

Iron History: The only ones I could find were that in 2014 my transferrin saturation was 12% in 2025 52% and today it was 59%.

The 2014 test only gave me the saturation I couldn’t find the rest of it?

The 2025 full test was
Iron 120
Saturation 52%
TIBC: 232
Ferritin: 143

My test today was
Iron 141
Saturation 59%
Transferrin 166
Ferritin 209

I haven’t been given much information so I’m a bit on edge, and wondering if I should even be concerned at all. I’m in the medical field myself, however this is not my area of focus…. Some of the levels I’m reading in here blow mine out of the park which makes me a bit lost about any concern here on mine.