What's the difference between hemochromtosis and haemochromotosis? I see it spelled differently all the time, but ppl are explaining the same disease. I'm just curious because I've recently had some suspect lab work done and my Dr. Is thinking I have this.

My tcbi is 180 mcg/dl. But my lab range shows as normal. How? My iron is 114. And saturation on my lab result shows 39% which if calculated 114/180 = 63%. Any suggestions whats could the results mean?

What did the endocrinologist find that led him to the hemachromatosis diagnosis? That’s what I wanna know.!!!??

42 only found out last week been in bits since i was 20 with it to parro and hard to go the doctors any advice on food?

I’m sorry you have this blood disorder. My dad was dx’d in 1985 & my siblings & I were tested and found out my brother also had it. That was when we found my mom was a carrier, her dad’s family had it. I’m a carrier but my children are all ok. I’ve lost my dad, brother, a paternal cousin & maternal aunt to liver disease from Hemochromatosis. (USA version) Thank you for making people aware of such a common yet under diagnosed disease.

I hope you always feel healthy Miss. Also, I found out by chance like you. I did a DNA ethnicity test and I found out I'm 20% Irish-Swedish. After that, I bought a hereditary diseases kit for my results and I learned I'm carrying heamochromatosis on gene HFE H63D. That disease is common for Irish and Swedish descendant peoples and that disease aka Celtic curse. Miss, you have blue eyes and maybe you have Swedish or Scandinavian origins. Maybe you have Swedish-Irish origins like me. Thank God the HFE H63D gene has less impact. The C282Y marker is the most impactful one and my gene does not carry heamochromatosis on that marker. Dear KZfaq community, if you have Swedish or Irish origins, I strongly suggest to go to the hospital for a check-up. Also, I strongly recommend doing a DNA test. I didn't know about my Swedish-Irish origin until the DNA ethnicity test results came.

IP6-inositol and curium will help prolong the phlebotomies. You'll be fine.

I always felt better giving blood that was the first sign i had higher iron levels

What was your ferritin level? I have the genetic variants and my ferritin is greater than 2000. 2000 was the max reading for the test. My iron is 208. My symptoms have been severe for about 10 years with mild symptoms before that. I'm almost 42. I figured out what i had after requesting an iron panel after 23and me DNA test showed i had the generic variants and i had all the symptoms.

Hey! I am 27, based in England and I was diagnosed a couple of weeks ago. I've had quite a few symptons unfortunately

You need cooked cabbage.

Congratulations on discovering and correcting it while you’re still so young. Fountain of youth. Your family is lucky too. 👍

I’m getting tested for this. I am the one pushing my dr because even though my rbc are high they say everything is normal I said no I want to check this. Dr mentioned this

I have this

My dad is super young too.. he found out about 2 years ago.

I have Compound variant, Heterrozygous. I have Atrial fibrillation and T2 Diabetes all apparently NOT caused by it 🤷🏼‍♀️

what level ferritin to you try and stay below and what's your TSAT%? Ideally if tsat% is above say 33% it's good to bleed when ferritin is 50 or above but if tsat% is below 33% you can let ferritin get up to around 80. Oxidative stress is said to begin when ferritin rises above 100 and the sweet spot of ferritin is around 60-80 providing your tsat% is healthy, under 33%.

Diagnosed yesterday but unsure because the symptom that put me on this path is severe “ muscle “ “aches” not pain but aches and fatigue …anyone else feel Ike they were beaten with a bat ?

Possibly another associated disease: Iron-Storage Protein Ferritin Is Upregulated in Endometriosis and Iron Overload Contributes to a Migratory Phenotype

Im 53 i got diagnosed with hireditry hemochromatosis last week i was misteriosly loosing weight now i no why iron overload as soon as i go back to my doctor i want to start donating my blood to get my iron levels down then maybe i can gain weight back

Im 53 i was diagnosed with hireditry hemochromatosis on Thursday after having my iron blood test my iron levels have always been low nowu no wht I've been loosing weight for no reason i have osteoarthritis in my neck also

I found out I have C282Y Haemochromatosis six years ago at 47 it took two years to rid my body of excess iron through weekly venesections! Its life changing but once you're iron is at a safe level, you can self medicate via periodic venesections. Your body will let you know when you're iron levels are increasing, you will start feeling very unwell, a quick blood tests will indicate how high your iron saturation (ferritin) level is, and give you an indication of how many venesections you need to drop your iron levels back down to a safe level. I hope this helps

Excellent. Good luck to You All 🍀🌞🍀

Fascinating

I had problems from Birth because of hemochroatosis. I had to have a liver transplant I have chronic kidney failure chronic pancreatitis and Rheumatoid arthritis. I just barely got diagnosed at 58. I also had to have a hysterectomy at 22. Both of my parents have it I had never heard of it before. Do all you can for yourself

I’m being tested for this medical condition as we speak as I have low ferritin and high iron with a lot of symptoms. I have a severe irrational fear of needles, to the point I pass out. I’ve become worried that if my only choice is to have regular needles put in me, I don’t think I can do it.

I have a question: if your serum ferritin is in the normal range and your TF is moderately high (60%), why would you have fatigue? What causes the fatigue?

Another great reason to donate blood, as in my case at least that works to keep the iron in check. More info on my journey on this channel in the comments on the "I found out I have haemochromatosis" shorts video if anyone is interested.

I started my journey(mid 50's) with knee arthritis that got very bad, then debilitating leg muscle cramps and crazy weird chest pains that felt like a needle was running through me. Pains in other joints began(arthritis I believe). Long story shorter: A ferritin test was an excellent pre-diagnosis, then the phlebotomy treatments brought my ferritin and iron down. The only symptom now is the arthritis, but in my case the knees got a bit better, but still not near as good as they were. My ferritin level went from 2100 down to levels it should be in just under a year.

Haemochromatosis, I am 13 I have Haemochromatosis my hands shake alot

I'm here because I really want to see if my father is anyone in insightful video or information please let me know I will pay

How you are dealing with it ?

what are the geneotypes at 12;25? how is that graph made?

Its so hard getting a doctor to refer you or atleast try and diagnose you with this disease in Australia Its like they dont want to know about it I had to see a dozen doctors before finding one that agreed to do full blood test for iron studdies etc A dozen!! Now one year later I finally got to see a haemotologist and a diagnosis But man.. why are Australian doctors so fkn useless? Telling its just the flu etc . Morons i could've died

I found out about 3 days ago .

I'm surprised HHAustralia is so ignorant of the facts. Phlebotomy goes back to the 2nd Century BC and you should look up a ''doctor'' named Eristratus. Bleeding an Amazon of blood does NOT repair a defective gene nor does it interfere with the process by which blood iron is transported via your blood to your body's organs. An excess of iron in your blood is TOXIC (and you should perhaps look up ''acute iron poisoning.'') The first thing it damages is your veins and arteries, and it gets worse from there. I have aneurysms in both legs and a two inch aortic aneurysm nobody in this backward town is going to do anything about it. I was called ''an idiot with a stomach ache'' and a ''lying hypochondriac by the Muslim woman who runs the casualty department at Wagga Base Hospital, after the chick doing the ultasound missed it. Calvary hospital found it within seconds of starting to look. I would not trust these worthless quacks to crack my chest at gunpoint. As soon as my mother's estate is released to me I'm off to Thailand (Bumrungrad International Hospital in fact) to have it repaired before it bursts and I DIE. Most people will not find out they have HH until their 40's or 50's, by which time they've suffered 4 or 5 decades of slow iron poisoning. Bleeding does absolutely nothing to repair this damage. I dare you, ask a doctor what Hepcidin is, what ferroportin is, what Deferoxamine is, what Iron Chelation Therapy is and you'll get resentment from an idiot who has no idea of what you're talking about. Australian doctors are DANGEROUSLY bereft of facts regarding HH. I've been using Iron Chelation Therapy for 13 years and have made it to 62. Most HH victims will die before this age. My sister, Rose, made it to 52. Bonny E., a friend of mine for 40 years, died in 2012 at age 52 (i went to school with Bonny). If I was an American, Canadian or maybe even European I'd be prescribed Deferoximine and I could opt for IV Chelation therapy. Talk to an Australian doctor about either and you'll get a blank look and resentment from an idiot who has no idea of what they're talking about. They'll simply tell you to go donate blood to a blood bank, which will NEVER get rid of the excess of iron, and it's THAT iron which will eventually kill you. My symptoms started in my mid-30's. Human skin, including my own, feels like snake skin and I find being touched by anyone to be seriously disturbing. It killed off my sex life and in no small way contributed to my wife's suicide. Chronic fatigue kicked in at the same time, something no clown doctor has ever addressed. Foggy thinking kicks in later, as does breathlessness. ALL of my joints ache and keep me awake, but no help from the idiots calling themselves doctors in this backward country. I was called ''a junkie looking for cheap drugs'' by one clown I would have physically assaulted if I were 30 years younger. My advice is to stop listening to the idiot doctors in this country and look up Canadian and/or American sources.

I’m 16 and I have if from genetics it’s really hard for me and idk what to do any thing to help and get me better?

I have a ferritin level of 1016 but my iron test came back ok. I did an iron test and I saw 2 doctors and blood specialist and they tell me I have normal iron levels. I did a liver ultra sound and results came back normal. I am 55 and never had high ferritin levels come back in any of my yearly blood work results. Any suggestions / advice?

Why not figure out the cause?

What would cause a 5 year old child to have high hemoglobin (15.4), high hemocrit (45.4), high platelets (477), high potassium (5.2), high calcium (10.6) and high iron saturation (46%), normal ferritin levels? FYI she is well hydrated.

I took alot of iron supplement, i was working fine, now whenever i take i gets vomit , abd yesterday i ate green vegies , iron food like spinach i started vomit.

Unfortunately, pharma controls medical university, doctors have less than 45 minutes in all the years of studying just because there are no pills for this, you just give blood. It took a long time to be diagnosed with hemochromatosis, its so clear on the blood analyst, when its in bold, it means there is either too much or not enough. But when its for iron, they just think you got enough iron. After years of trying to find my problems, i was diagnosed by gastrologue.......by luck, just because his brother in law had the disease, so he knew and the gen test, unfortunately came positive for the worse combination C282Y/C282Y with a total of 2402 of iron (instead of 250-300 for men) As for those pharma selling iron supplements should stop saying "feel tired?" you need more iron !!! so from the age of 21 to 40, i was taking iron supplements every single day. I am a French Canadian, originated from France in the mid-1600's.......from a region well known for the higher % of hemochromatosis. As for Australia, does anyone know what region in Europe it originated in ? I know its a Celtic disease.

GREETINGS...AT WHAT PERCENTAGE SHOULD THE .... """TRANSFERRIN LEVEL BE""... TO BE CONSIDERED OK..???????

I didn't realise it was such a big deal, after 15 odd years of knowing I've had it. "They" never told me how serious it is. Tell me what i need to know please??

Some of these people look quite young. I thought it was a condition that built up over time. My brother may have died of haemochromatosis aged 53. His health was fine until his late 40s. He went to the gym. The last year or two he was always very tired. He had a weird skin condition, which may or may not have been related. He refused to get medical attention. I thought it was alcoholism.

Allow me to quote an old encyclopaedia. ''Plethora, or an excess of blood, was believed by Eristratus (an early teacher in the Alexandrine School of Medicine) to cause many diseases. He actually diminished blood by dietary methods, but his colleagues used blood-letting (phlebotomy) widely and so began a practice lasting for many centuries.'' Bleeding a river of blood does not repair a defective gene, full stop. Nor does it have any effect on Hepcadin, the protein the gene tells to regulate how much iron is released into your blood stream. No doctor I have ever spoken to knows what that is. Even as they drain blood from you the process by which blood iron winds up as organ iron is not at all interfered with. They only take one pint out of the eight+ in your body - they leave behind 7 pints of the same overloaded blood and the process just continues with 7 pints of blood instead of 8. They say the new blood is ''normal'' and this is thought to save you from something, but it pumps into your veins drop by drop over two days, and goes straight back into 7 pints of toxic blood. They have diluted your gross oversupply of iron by one eighth - except that your gut is absorbing iron from your food and pumping it into your blood because the Hepcadin is not functioning the whole time. Six months of it later they take another pint and tell you it's now ''manageable'' when in fact bleeding has cured/treated you for absolutely nothing. I cannot get any idiot Australian doctor to treat any symptom arising from being poisoned by a gross oversupply of what the whole world's medical practices regard as a ''heavy metal'' even if it actually isn't in the lead/uranium class. I developed an aortic aneurysm - most HH victims will go out with heart failure of one kind or another, a quarter die from liver or pituitary failure. My sister died from an aortic aneurysm. She had HH too and only got to 52. So did my friend, Bonny Elliot, 12 years later. It was missed by the quacks at Wagga Base Hospital and I was called a ''lying hypochondriac'' and ''an idiot with a stomach ache.'' They found it within seconds of looking at Calvary Hospital the next day. Because I'm a public patient nobody will fix it BEFORE it bursts and I'm currently putting together a medical holiday to Thailand to get it fixed. No doctor can tell you what the two hallmark symptoms of HH are - Chronic fatigue and aching joints, and I have never managed to obtain treatment for either in 13 years of trying. Other symptoms might/probably will include tactile/sensory changes (human skin feels like snake skin to me and had a lot to do with the death of my marriage, and my wife). You may have random patches of pain appear anywhere on your body for no obvious reason. First time I got that one it felt like I'd been hit in the ribs with a baseball bat in the middle of the night. A 6 inch circle of serious pain I could draw an accurate tracing of where it was. Three weeks later it moved to my right hip joint, stayed a week and left. I get them routinely 18 months later. You may get needle-stick sensations which I get mostly in my legs, but have had elsewhere including my eyes. That's always interesting, especially while driving. You may live long enough to experience foggy thinking, your brain reacting to the rusting garbage in your head. You WILL experience chronic fatigue, something I started noticing as a 35 year old. I was 49 before I found out why, but have never received any help for it. You will probably be kept awake by any old injuries. I have a fractured spine and can feel every bit of damage on a 24/7 basis. I also now have a curvature I never had. No help there either. HH may produce restless leg syndrome, something that kicked in for me 15 years ago. I have spent hundreds of sleepless nights with wet towels draped over my lower legs with a fan on them to cool them down enough for me to get to sleep. Never any help there either. My sleep patterns are so bad I can reasonably truthfully claim to have seen pretty much every single sunrise this century so far. Your sex life will probably go down the toilet. In fact all the fun things you used to do after work or on the weekends are going to become a tedious chore, and you'll find you'll stop doing them one by one until your house is your world. And that's if you live long enough. The sound of your voice is probably going to change. I sound nothing like I did 5 years ago. You may undergo sudden, rapid weight loss for no obvious reason. I lost 21 kilos in a 12 month period without changing anything I did. I look like I just walked out of Auschwitz. Australian doctors, without exception that I can vouch for, believe HH victims suffer no organ damage at any stage and if one simply donates blood to a blood bank there are no symptoms, no ill effect, and that you will die at 95 in a nursing home with all the other people who don't have a gene defect. This is utter nonsense. One Canadian source, a university lecturer, has this to say: ''There is no such thing as a 70 year old with Hereditary Haemochromotosis, and there's almost no such thing as a 60 year old. We think the average age of death of most HH victims is about 55 - but most HH deaths will be put down to other causes like heart failure or liver cancer so the figures aren't exactly reliable.'' My sister died at 52 in 2005, my ex-school mate Bonny Elliot died in 2012, also aged 52. Both had heart failure, my sister also had a brain aneurysm which is what actually killed her. I have an aortic aneurysm I may have to get repaired in Thailand because I cannot seem to get it fixed here. The oldest living person I've ever found on the internet who has/had HH was a 62 year old American woman, now gone. I'm 62 and I wouldn't wish how I feel on a daily basis on anyone I like. I started asking for help 18 months ago and have yet to receive more than a box of blood pressure pills. The health services and support for HH victims is so bad in Wagga Wagga I sold my home and am moving interstate - to access some help, which I just can't get here in this backward town - or indeed in this whole backward country. If I was an American I'd be on a script for Defoximine, and I'd be getting IV Iron Chelation Therapy - something you can so yourself by using capsules and swallowing them rather than sticking a needle full of it up your own arm. Ask an Australian doctor about either of them and you'll get a blank look and nothing more. Seriously, talking to an Australian doctor about HH is like talking about your last trip to the beach. You get the same treatment. ''Go donate blood to a blood bank (and make yourself useful before you die).'' At no stage does bleeding reduce your blood iron levels to ''normal.''

I've had haemo since 1996 watch out for pain in your hands and especially your knees ...arthritis is unfortunately one of many side issues .

How have your symptoms behaved

It's almost kinda negligence or ignorance how he ignored the diet question. Of course it's super important! If a person is genetically programmed to absorb more iron than normal, it's just common sense that they would (and should) need to eat less than normal. I am homozygous c2, and it should be no surprise that if I eat a low iron diet I have no problems, if I eat a high iron diet tsat and ferritin start climbing. We simply evolved to need less iron than normal! Isn't it a simple idea to then just track and reduce iron intake if a person is having problems?!!