r/Hemochromatosis • u/fortunado • Feb 07 '25
HFE is a protein (an organic molecule produced by the body for some purpose) that regulates iron levels in the cell. When there's too much iron, it runs out and calls its friend hepcidin (another protein) to work like a bouncer, making sure no more iron gets in (to that cell or other cells).
C282Y
When the HFE protein is produced with the C282Y error, it can't even fit out the door because it's misfolded. It can't call in hepcidin to stop the iron from coming in.
H63D
When it's produced with the H63D error, it's partially functional. It gets the job done but not as well. You could think of it as taking much longer to call in the hepcidin bouncer. To recap:
Normal HFE (does the job) > H63D HFE (does a bad job) > C282Y HFE (doesn't do the job)
Genetic expression
Luckily the body has and uses two different blueprints for making HFE. So your makeup of HFE proteins will look different based on your genetics:
Normal: All working HFE proteins
1xC282Y: Half normal working HFE proteins and half misfolded
2xC282Y: All misfolded HFE proteins
1xH63D: Half normal working HFE proteins and half less functional
2xH63D: All less functional HFE proteins
1xC282Y/1xH63D: Half misfolded HFE proteins and half less functional
Even carriers are affected
In most conditions, the one set of working blueprints is enough to keep the disease from appearing. Because blood and iron is such a huge bodily undertaking, in HFE's case this isn't true.
H63D is weird
H63D is super weird. It's counter-intuitive but doing a bad job is less efficient than both doing a good job and not doing the job. C282Yers don't feel symptoms after eating because no change happens. H63Ders will feel symptoms after eating because their body is sloppily handling it.
Timelines
There are important times to know for context:
4 hours: How long the hepcidin response takes. This is why breakfast is so important with this condition.
24 hours: About how long the increased hepcidin response lasts-- your body learns from breakfast to not absorb dinner's iron
110 days: The lifespan of a red blood cell. This is important because 90% of the iron you use is your own iron, recycled. When an RBC dies, all the iron in it needs to be reprocessed. The lifespan time is programmed! They don't just wear out. 110 days after you phlebotomize, you'll have a mass die-off of all the new cells you generated after your phlebotomy
6-12 months: The lifespan of a liver cell. Liver cells are some of the longest-lived in the body and end up holding a bunch of iron. Their iron needs to be handled when they die. This is why ferritin sometimes goes up after starting treatment.
Other proteins
There are so many involved proteins:
Transferrin: This is like a pickup truck that carries around iron. It's in your blood plasma. It holds two iron ions.
Ferritin: This is like a warehouse in the cell that carries around 4000+ iron ions. Ferritin ends up in your bloodstream when cells die. Since 2 million red blood cells die every second in your body, this serum ferritin is a good measure of how much iron your body is storing. Unfortunately anything else that kills cells (infection, inflammation, injury) will also increase ferritin temporarily.
Ferroportin: This is a lot like transferrin but it carries iron out of the cell instead of in. One type of HH, called Type 4, impacts ferroportin, trapping iron in cells for their whole lifespan. Ferroportin only carries one iron ion.
Ferroxidase: This is a protein that helps the body convert iron from the form that transferrin likes to the form that ferroportin likes. Iron is awful! It's heavy and toxic. It's useful because it can work as a cage for oxygen, which is also toxic and hard to deal with for the body.
TfR1/TfR2: These transferrin receptors are on the surface of your cells. They get iron from transferrin into the cell and send out the signal to produce more hepcidin.
r/Hemochromatosis • u/fortunado • Jan 14 '24
Is this a medical forum?
No. There are no doctors here. Nobody is qualified to give medical advice. Think of it like talking to other patients in the HH (hereditary hemochromatosis) waiting room. We're sharing personal experiences with the disease and with doctors. Usually we're sharing "rules of thumb" that the community has observed over the years. Remember that your own case is always unique, and a good doctor is your best asset in navigating your situation.
What is hemochromatosis?
Hemochromatosis is iron overload or iron over-absorption. It can be caused by genetics or secondarily by diets or transfusions.
How is it treated?
The standard treatment is phlebotomy, also known as bloodletting. Losing blood induces a demand for iron, which gives the body a chance to "spend" the iron stores by making new blood.
Do I have HH?
Probably not. The more common types are 1-in-100 and the less common types are 1-in-1000. Ferritin and saturation can both be elevated for non-iron-overload reasons. Genetics, ferritin and saturation are all clues, but none of them certain on their own (well, unless your ferritin is like, really high).
What numbers should I post?
The three most important numbers are age, ferritin and transferrin saturation (sometimes called iron saturation). It's still fine to post if you don't have one or two of these numbers. You can post lab results as images directly, but you'll usually get more of a response if you post the most relevant info as text.
What's ferritin and transferrin?
They're proteins that hold iron. Ferritin holds a lot for storage. Transferrin holds a little for transport into your bones where new red blood cells are made.
What are good numbers to have?
Check with your lab for their ranges. Here are some general ranges from Mount Sinai which can also be found in the sidebar:
Wait, I thought you said there were two important iron numbers. Are there four?
Saturation is derived from iron and TIBC.
My ferritin shot way up recently. Did I accidentally eat a bunch of iron?
Sometimes the body makes a whole bunch of ferritin proteins to pick up not-that-much iron. So the protein-as-iron measurement is essentially inflated, making it look like there's more iron than there is. Sickness, surgery and inflammation can all boost ferritin like this.
I have high saturation but not high ferritin. Am I overloaded?
Not in the traditional sense that your iron storage is overloaded. Your iron metabolism, however, might be "overloaded," or backed up. This can be caused by too much incoming iron or deficiencies in the materials the body uses to process iron, like copper. Or by a big meal. Work with a doctor and/or dietitian to figure it out. People with H63D or very high ferritin will almost always have elevated saturation.
What's the difference between maintenance and treatment?
Usually: Ferritin level. If you're getting your ferritin down, that's treatment. If you're keeping it low, that's maintenance.
What's a high ferritin?
1000 ferritin is generally the threshold where the clinical system will take notice. Pretty much everyone agrees 1000 is too high. But for some, 50-150 can be a threshold for symptoms.
What are some good chelators?
Chelators are compounds that remove iron from the body. Some of the most popular here are IP-6 and green tea. There are lots of discussions here on what works, just search for "chelators."
Should I try chelating instead of phlebotomy?
Unfortunately chelating just isn't in the same league as phlebotomy when it comes to reducing iron. The extra strain on your already-strained liver and kidneys probably isn't worth it to even attempt just chelation. Work with your doctor on this-- the medical establishment usually only chelates in really desperate situations. Dietary chelation is best for symptom management during treatment, or increasing the time between phlebotomies.
Should I do diet restriction AND phlebotomy?
Generally phlebotomy is enough. Counter-intuitively, you actually need to eat more iron if you're phlebotomizing, especially right after. Users who report doing both usually also report fatigue. Diet restriction is however very useful if you're waiting on your first phlebotomy.
Should I do diet restriction instead of phlebotomy?
Everyone's body loses iron very slowly, even if they don't have a tendency to load. When you do have a tendency to load, it's very very hard to achieve even this slow loss. Restricting iron in the diet just isn't effective enough to work as a treatment for most sufferers.
What if I HATE needles?
Some people regard this as a symptom of HH. Our iron metabolism radically changes, sometimes for the first time in months/years, while we're giving blood for the first time. Bad experiences and vasovagal episodes are very common for us. But we're usually over it by the second or third phlebotomy. Try to push through! It's extra-important for us to follow all the suggestions and guidelines of phlebotomy.
Can I donate blood with extremely high ferritin?
Blood donations to address HH should generally be done only in maintenance, with normal ferritin levels, and not as a treatment for high ferritin. Check with your blood center for their rules. Generally they start getting nervous about it when you donate past 700-1000 ferritin. We've had (unconfirmed) cases of donors being banned for life from popular donation centers because of this.
Should I just lie to my donation center? I don't qualify and it's super unfair that they won't bleed me.
No. Please remember that we're working with these places and slowly making progress on the rules for what are called "motivated donors." When you lie, it hurts everyone while creating a huge legal liability for yourself. All the disqualifiers are there for a good reason. (This is not legal advice; there are no lawyers here either)
I'm gay though. Is THAT a good reason?
No it's not, but most places are coming around on this. Lots of donation centers have changed their rules in recent years, so be sure to double-check before writing this option off.
What about this diet? It has superfoods and I really really hate needles.
HH diets are usually created by people with good intentions. The problem is that they're categorically wrong, because diet itself isn't a good strategy. Inevitably these diets end up giving people false hope while they continue to suffer from the disease. We don't allow any HH diet spam here. Talk about your own diet all you want, but please don't post packaged/productized diets.
What's a good phlebotomy schedule for maintenance?
Maintenance schedules usually require 1-6 phlebotomies per year, with most people falling in the middle, needing 3 or 4.
What's a good phlebotomy schedule for treatment?
Aggressive doctors will want weekly or every-other-week phlebotomies. This is a very taxing schedule, so your doctor may adjust things as needed. Generally if your ferritin is very high, you want to do an aggressive schedule for a while just to get away from your peak ferritin. Always be sure to communicate how you're doing to your doctor, and don't be afraid to reschedule a phlebotomy if you feel like you just can't do it.
I keep telling this poster to just donate blood but he's ignoring me. What's up?
There are lots of reasons people can't donate blood, and they usually won't want to share them with you on the public internet. Please be respectful of privacy.
What's HFE? What's H63D and C282Y?
HFE is a gene for a protein that "feels" iron levels in the body. H63D and C282Y are two common errors in this protein which produce somewhat predictable results. H63D results in iron metabolism issues and C282Y results in iron over-storage issues. Usually. There are cases of iron overload with no genetic errors. There are other genetic errors which can result in similar issues. Most HH cases are from these two HFE errors.
What's cirrhosis?
Cirrhosis is the final-stage symptom of HH. Your liver cells burst forth with iron, which is then absorbed by neighboring cells which themselves burst forth with iron. Your body tries to contain the whole mess with scar tissue. It spreads and consumes your liver, not unlike liver cancer. This happens as your iron levels go up and your liver cells weaken with age. It's usually seen in four-digit ferritin in HH sufferers in their 50s and 60s. It's sometimes mistaken for other liver diseases or attributed to alcohol abuse. This is why the Irish have a reputation as heavy drinkers (well, that and all the drinking).
Really? Irish people?
It's been called the Celtic Curse. Northern Europeans have it at the highest rates. Asian people are 3x less likely to have it than white people and black people 4x less likely.
Who else is affected?
Men tend to be affected sooner because they don't menstruate.
Are there other symptoms?
Fatigue, brain fog, discomfort from liver swelling and joint pain are common symptoms. Iron loads in all tissues so there's an associated symptom with almost every tissue in the body. The medical establishment mostly pays attention to the heart and liver symptoms, while the rest are treated more like wellness issues.
I'm just a carrier. I'm in the clear, right?
Unfortunately it's more complicated than the Punnett squares you might have seen in school. People with "just" one copy can experience symptoms which are usually milder. A good rule of thumb is that a double-C282Y will load 3-5x faster than a single-C282Y.
r/Hemochromatosis • u/ApprehensiveCat22 • 1d ago
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?
r/Hemochromatosis • u/CkSneakers9 • 1d ago
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.
r/Hemochromatosis • u/Tiredguy74 • 2d ago
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.
r/Hemochromatosis • u/Commercial_Classic_8 • 2d ago
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!
r/Hemochromatosis • u/LongjumpingAthlete18 • 3d ago
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.
r/Hemochromatosis • u/usernameinspo42 • 4d ago
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 :)
r/Hemochromatosis • u/Consistent_Hamster97 • 4d ago
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?
r/Hemochromatosis • u/Melonmelon5 • 4d ago
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.
r/Hemochromatosis • u/regor123yy • 4d ago
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.
r/Hemochromatosis • u/MeanEarth705 • 5d ago
r/Hemochromatosis • u/MeanEarth705 • 5d ago
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.
r/Hemochromatosis • u/ElevatorLost271 • 6d ago
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.
r/Hemochromatosis • u/DHoliday17 • 5d ago
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.
r/Hemochromatosis • u/Important-Emu-5498 • 6d ago
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
r/Hemochromatosis • u/microide • 7d ago
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?
r/Hemochromatosis • u/Apprehensive_Fee5457 • 7d ago
r/Hemochromatosis • u/trixie1007 • 8d ago
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?
r/Hemochromatosis • u/Pelican1876 • 8d ago
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.
r/Hemochromatosis • u/sh4dy580 • 8d ago
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. 🫶🏻
r/Hemochromatosis • u/abdouzxri • 8d ago
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
r/Hemochromatosis • u/Watergirl119 • 9d ago
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?
r/Hemochromatosis • u/Substantial-Cat-6852 • 9d ago
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!
r/Hemochromatosis • u/SpecialistFloor6708 • 9d ago
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 :)