Mines currently up at 86.5% with ferritin of 167 and every time I mention my TSAT they’re dismissive and say we just need to get the ferritin down (it’s not even excessively high)
Just annoys me I don’t currently have symptoms (I don’t think) just joint pain but it’s bearable
I've just found out that I'm C282Y homozygous. I had a normal iron panel in August 2025 (checking for something else), then in April my results came back as iron 197 (normal 30-150), UIBC <17 (normal 70-310), TIBC and TSAT couldn't be calculated because my UIBC was so low. Ferritin is 263. AST and ALT are fine.
I'm waiting for my doctor to send me next steps, but am particularly curious about dietary changes. I typically eat high-protein, low-processed food and low on grains with maybe 1-2 flex meals a week and some snacks based on social events, and my usual meats are chicken, eggs, and salmon. I drink socially but not super heavily. I was feeling pretty good on that diet and I feel worried about changing it too much.
I was diagnosed with hemochromatosis about five years ago (heterozygous for C282Y and H63D). I typically have phlebotomies every six months and try to keep my ferritin levels under 100. During that six month period my ferritin levels slowly rise and sometimes reach 140 before I undergo another phlebotomy. During the past 8 months my ferritin levels, for some inexplicable reason, have been falling. I haven’t had a phlebotomy in eight months and my ferritin level is currently at 67. One month ago it was 78, so it seems I’m dropping 10 points a month. No indication I have internal bleeding. I’m male and 66 years old. Any suggestions why my ferritin is suddenly dropping?
Just a scary, but kinda funny story...
I had stomach issues on and off for 20 years and no one figured it out. My grandmother died of stomach cancer so, of course, I was paranoid when the stomach issues would not go away. I had an endoscopy and colonoscopy when I was in my 20s, and was told I had inflammation all over my stomach lining and they thought I had stomach cancer. I took my mother to the follow-up prepared for the worst, but then the biopsies came back clear for everything, even H Pylori. I was never given answers.
Summer of 2020 I was having stomach issues again, just constant belly aches. GP did bloodwork. Fine. Had a CT done. Clear. Sent me to a gastroenterologist and I had another endoscopy and colonoscopy done. Same exact result as the first time. All said and done, and I'm paraphrasing, we couldn't figure it out, but you're not dying. You'll be fine. *grrr*
Over a year later (fall of 2021), stomach issues continued. GP was blowing me off. I asked to see a different doctor and was scheduled with the PA. She said "I was going over your chart and I wondered if you ever followed up on the CT from a year ago." Ummm, what are you talking about? "There is a note on your CT that said they found iron deposits in your liver." As I thought WTF?! NO ONE TOLD ME ****, I calmly said, "No one told me anything. I have no idea." She scheduled a follow-up CT.
She calls me a few days later. "They found more iron deposits in your liver (and some somewhere else, but I don't remember now). I'm going to call a liver specialist because I want to have a consult." Cool. Someone is doing something.
She calls me back another few days later. "He's pretty sure he thinks he knows what's going on. Can you come into the clinic just for bloodwork?" Yep.
It's now just after Thanksgiving and BOOM. She says she's referring me to a specialist because I have hereditary hemochromatosis. I had never heard of it, had no idea what she was talking about, and was so focused on the holidays I didn't even think much about it.
And then I got a letter from an oncology clinic. 1 day before Christmas. WTF? Do I have cancer?? Merry Christmas, here's your gift. I called the number on the letter and they were closed for the holidays. I had to wait 5 days (which felt like FOREVER) to find out what the hell was going on. They called me and said they were setting me an appointment with a Hemotologist. On my God, phew. Couldn't you have put that in the letter???
And to top it off... My 1st appt with my hemo doc...
"Well, we need to do some bloodwork and test to see if you have hemochromatosis, but I doubt it. You seem to be fine and your iron is normal. IF you do, you could have this kind, or this kind, or... (she's explaining them all to me) and the worst kind is hereditary hemochromatosis with 2 gene mutations. (I don't know if this is true, but that's what she said.) So I tell her that I'm confused. I was already told I was diagnosed, and that's why I was referred to her. She said OH and starts looking over my chart. She was like oh, yes you do have it. I asked which one. She said "the last one," with a frown. I swear to you I had lost my ever loving mind over this whole experience and I just started laughing. She thought I HAD lost my mind. I gave her a very brief synopsis of what happened over the past 20 years (and especially the last year and a half) and that she just topped the whole thing off. She scrunched her face and "well, they didn't tell me." I said, "clearly!" and started laughing again. We actually became friends and she ended up being my favorite doctor I had ever had.
BUT SERIOUSLY, how could this happen? Doctors blowing me off, not telling me about the CT, and all this could have been found years earlier. BUT, in their defense, (and this is going to sound like absolute BS, but completely true), MY IRON WAS NEVER HIGH in all the years it was ever checked. Even with the iron deposits. She checked my Ferritin and it was just under 500, which isn't crazy high for Hemochromatosis (if you're unaware). My bloodwork did not scream Hemochromatosis. If it wasn't for that PA seeing the note on my CT from 13 months prior, they may not have found it until it was too late. PA Jennifer was absolutely amazing and I love and miss her to this day (and mad she left my town).
So I am living proof, YOU DO NOT HAVE TO HAVE HIGH IRON to have Hemochromatosis. I don't remember how they explained it, but something about... because my body kept depositing my iron into different places, my regular bloodwork never showed it. I was finally diagnosed at 45 years old. The good news is after multiple phlebotomies, and follow-up CTs, the iron deposits are gone. I (obviously) continue to have follow-up bloodwork and CTs, but so far so good.
Hi! When I googled “high iron, high ferritin, high liver enzymes” this was the subreddit that popped up. I’ve yet to get an official diagnosis. (iron is 200, ferritin is 240 and my AST/ALT are 99/100 and maybe relevant? My estrogen is so low it’s undetectable but other hormones normal, everything else is normal too and my doctor says she is “puzzled” at my lab work)
I’ve been feeling “off” for awhile now. My hair is thinning, I feel unusually fatigued, and my GI issues are worse than ever. I am in a constant state of discomfort with severe acid reflux, constipation and painful bloating.
I was wondering if GI issues were something you all have experienced and if so- did getting treatment for your iron help ease your GI symptoms?
Have you found that you have to explain the condition and your symptoms to any GPs you see?
For context I was diagnosed homozygous c282y with ferritin at 325 and TSAT at 72%, my last bloods in march were ferritin at 275 and i had another set a week later right before my first venesection at 301 and 61% (redone at the hospital because the GP didn't check my TSAT).
I have basically all of the early symptoms and have done for months, my Ferritin had reduced due to just how little I was eating for a while because of the loss of appetite. (I dropped 4kg in 2 months while not exercising due to fatigue and have never been capable of losing weight beforehand)
I went today for a follow up appointment after an ECG because of palpitations (which have become more often since the ECG 2 weeks ago) and I had to explain HH, that my Ferritin and TSAT are in fact a problem, I'm waiting for a liver ultrasound next week, I have symptoms from the HH and that HH can cause heart problems. All after he looked at me confused and said "why did you get an ECG" READ THE NOTES.
He also tried to say I'm fine because my Ferritin isn't in the 1000s so I shouldn't have symptoms anyway.
He's referred me for a 24hr Holter Monitor so I guess at least they're looking into the heart symptoms but bloody hell I didn't think I'd have to explain why my bloods are in fact not normal to a doctor!!
I am kind of bummed. I was so excited I hit 43 three weeks ago after my 9th weekly phlebotomy. I was thinking I am in maintenance I probably won't have to do this again for a few months. I just did my labs as I have a hemo follow up tomorrow and my ferritin is already back up to 78. Does this mean I am going to load fast and donate often?
What was lightheadedness throughout the day in January has turned into me feeling like I'm spinning in a washing machine all day. I can't focus at work or at home. I don't want to even get out of bed anymore. Gastro told me to keep donating through Red Cross until I see her next month, but I've only been able to donate twice in the past 5 months. I can't get my appointment bumped up. At this point I'd happily take joint pain over this brain fog. Maybe it's copper deficiency? I'm wary of just taking a copper supplement though.
I, 19F, have recently had 2 blood tests and found to have high iron (60 umol/L) and saturation (92%) but my ferritin level was normal (37 umol/L). I am waiting for a haematologist appointment in June as its obv suspected hemochromatosis. Just wondering if i should cut out drinking currently as i don’t want to do any damage just in case?? as i am a uni student who goes out occasionally, thank you! :)
43/f with mirena x3 over 15 years, no bleeding. Physically active. Healthy BMI. Hydrate a lot. Healthy diet.
About a year ago, I was changing psych meds (worked off low dose SSRI over months, started low dose adhd meds prior) and everything was great until it wasn’t. My heart rate would jump from 55 to 100 when standing or just randomly. A “zing” feeling up neck to behind ear. A feeling like vertigo (had labyrinthitis twice 15 years ago— similar in a way but not on stairs). Left arm would feel heavy at times. Fatigue. Feeling dizzy when standing and like I pass out for half a second (people have noticed). Forearms and inner elbow super itchy without rash. ANA: 1:160 one year ago. ANA 1:320 6 months ago. Negative for Lymes (I hike a lot). Severe androgenic alopecia onset age 19, but plantar palmer psoriasis at the same time. Have lost most body hair which is incongruent with AGA. But diffuse areata was ruled out with biopsy, though excellent derm suspected it. Hair changed texture last couple years.
Heart was cleared last summer. Started low dose SSRI again, and anxiety has settled.
Rheum ran a variety of basic tests in the fall and eos was 5.9% at one point, but everything else was normal. Eos is now normal at .3 (I think they used different measurements). Allergist said no real allergies (surprising— as a kid, pediatrician said my dark under eye circles meant I had allergies).
Started figuring out when my period was since fall when I started getting cramps every 2-3 weeks for 5-8 days. Had not had cramps prior while on mirena. Anxiety spikes before cramps. Prior to birth control, period was heavy and erratic. Latest mirena inserted 2 years ago. Basically no testosterone. Obgyn ran some tests in fall. DHEA-s low 37; insulin high 38. Insulin last week is 5.
Routine blood work last week and she ran iron panel. Rechecked two days later and consistent results so she ordered more tests. Waiting on genetic test for hemochromatosis but 23andme said negative for two main variants. Northern euro ancestry, no known family history. Stopped multivitamin 7 days prior to tests. No supplements. Very little red meat in diet. No alcohol for ten years but drank regularly prior.
This week’s iron results (she said liver looks good which she said is reassuring):
UIBC : 105, 108
Iron saturation : 60, 57
TIBC : 264, 249
Iron serum: 159, 141
Ferritin : 187, 173
Could the mirena explain all or most of this? Will the “hemochromatosis mutation” only check for the main two variants that 23andme already checked, or all? Many in our family have the enlarged knuckles on pointer/middle finger with age. I assume I have carpal tunnel from work. I’ve always had normal results for regular tests until this year. I wind up waiting so long to see a specialist just to find out they aren’t the right specialty, it’s stressful. Plus, until my current GP and obgyn (who are both WONDERFUL!), everyone said it was all anxiety. I understand none of these results are critical, but my overall wellbeing is suffering and I would like to connect the dots.
31 M, Taken over the course of three weeks. 6 years ago I also had a TSAT result of 55% (whilst eating a vegan diet).
Overall I have lived a very active lifestyle, often surfing, free diving and working outdoors.
However I tend to suffer from severe fatigue & in general seem to have poor exercise recovery.
I also have severe brain fog & forgetfulness, and experience frequent periods of depression and anxiety. Sometimes I get body and muscle aches too.
Prior to the first test I had no idea about HH, and ate an iron heavy roast lamb meal. I felt terrible for the next 2-3 days, also tend to feel awful after saunas... Hangovers were the worst for me so I stopped drinking 10 months ago.
Since the first result I altered my diet eliminating red meat, vitamin C and adding calcium & tea with meals. I'm not sure how to read into these results. Waiting on test results for genetic test, until then any insights are much appreciated.
32y female had iron tested at a physical after complaining of fatigue and hair loss. Iron is high but ferritin is within normal range. Mcv is elevated as well. Np said we will keep an eye on it but since ferritin is normal it is probably fine. Should I look into a second opinion?
Сколько принимать меди на кг массы тела спортсмену паурлифтеру
I've just had my results back. After reading more on the subreddits, I'm still a little confused as to my diagnosis. I've got another appointment next week to discuss it with my GP, but just looking for some clarity. I'm 49 and male.
Hey everyone, 25M here. Just got some blood work back and I'm totally confused by my iron panel.
My results:
Has anyone here ever had a result over 100%? I have seen results in this subreddit around a maximum of 107% so this is making me very concerned.
I’ve been reading about "Non-Transferrin Bound Iron" (NTBI) and wondering if that’s what’s happening here.
For context, I’m also dealing with severe insulin resistance (HOMA-IR 3.52) and ADHD meds that feel like absolute sugar pills no matter the dose.
I'm starting to wonder if this "overflowing" iron is the smoking gun for why my pancreas is struggling and my brain's dopamine receptors seem "deaf" to medication.
Any insights would be huge. Is this a common "error" or a sign of something serious like Hemochromatosis? Thanks!
33, Male, Heavyweight
For the last year, I have found that despite being a very active, healthy person who considers himself to be low anxiety all of his life, I developed a feeling of a pounding heart in my chest, light-headedness in areas of bright, artificial lights, and general sleeplessness. Last year when I went to my doctor and said these things, I watched as the nurse simply marked "anxiety" on my file.
(Random thing - A nurse friend a few years ago was draining my ears (martial arts stuff) and made a comment that my blood was dark and thick.)
I decided to take my health into my own hands and signed up for Function, electing to get some blood tests. Here are some of the things I found:
April 1, 2026 - 13 vials for Function blood tests
Hematocrit - 52.6% (Normal range is 39.4-51.1)
Hemoglobin - 17.5 g/dL (Normal range is 13.2 - 17.1)
Red Blood Cell Count - 6.06 million/uL (Normal is 4.2-5.8)
...... so we're seeing that my red blood cell count is high
Iron - 238 mcg/dL (Normal range is 50 - 180)
Iron % Saturation - 83% (Normal is 20 - 48)
Ferritin - 357 ng/mL (Considered in range)
TIBC - 287 mcg/dL (Considered in range towards the low end)
Ok, so I take this to my doctor. In the 3 weeks between my first blood draw and my doctor visit, I stop eating all red meat (normally I'm a huge consumer of steak). I learn about hemochromatosis and he tests me. Now it turns out from the test that I am Heterozygous C282Y (one copy)
But check out the blood tests from my doctor:
April 22, 2026 - 4 vials of blood drawn
Iron - 37 mcg/dL (Holy shit it DROPPED REAL LOW) (Normal range is 50 - 180)
Iron % Saturation - 14% (What?? This dropped too??) (Normal is 20 - 48)
Ferritin - 217 ng/mL (Much lower all of the sudden too?...)
TIBC - 274 mcg/dL (Remains the same as the first test)
Before I got these results from my doctor, I went a few days later and donated blood and man do I feel GREAT for the last week after having donated blood. It's like I've had this weird hypertension for a year and someone let a little air out of the over-inflated tires.
But I just don't understand...
-Was I in hemochromatosis territory on my first blood draw?
-Is it normal for people with our condition to wildly swing towards the low end of iron?
-Do I feel better not because of iron, but because I got my super high levels of red blood cells down? (I heard too much blood puts me at risk for heart and cardiovascular issues)
Just trying to make sense of all of this and if I'm looking at a future of regular blood draws with being a Heterozygous C282Y. I really wouldn't mind. I felt so good after my first blood draw that I'm almost eager to do it again
I was diagnosed 25 years ago (C282Y) after a horrendous hospital experience: initially misdiagnosed with a rare blood condition and put on steroids for months before anyone figured out what was actually wrong. What followed was years of managing not just iron overload but the downstream complications: low testosterone, joint pain, liver monitoring, thyroid and Left Ventricular Hypertrophy (LVH). I later lost my mother to complications from her undiagnosed hemochromatosis. Add to this a post covid Small Fiber Sensory Neuropathy (SFSN) diagnosis.
Not whining. All this is to say that I've learned that managing these conditions long term meant tracking multiple organ systems simultaneously over years. Labs, medications adjustments, specialist appointments. Result: I have 13 years of office visit notes and lab results living in my iPhone Notes app.
I'm a digital product designer by profession so I started building a private web app to help me with the chaos. This eventually pivoted to an iPhone app to track meds, doses and schedules (with reminders), keep appointment notes and record lab results (graphs) over time.
Free App - Not a sales pitch
I was hesitant to post but after I was diagnosed I spent a lot of time lurking here for advice and consolation. This community helped me a lot so I'm paying it forward. Part of my job is buildings systems that collect and manage peoples' data. This app doesn't do any of that. The app doesn't require an account, connect to external services, or transmit data to servers (on the flip side it doesn't connect to any specialists, pharmacy or online medical records if thats important to you).
Hope it's helpful to some of you.
Here are my lab results. I have extreme fatigue, my hair is falling out, and aide been having some joint pain. I know my numbers are kinda conflicting with what I’ve seen… has anyone else had this as their results?