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HaemochromatosisAust
Australia
Registrace 23. 01. 2013
Haemochromatosis Australia is the support, advocacy and health promotion group for Australians affected by haemochromatosis (Inherited iron overload disorder).
Support Haemochromatosis Australia
As the national support and advocacy organisation for people with haemochromatosis we need your help to raise awareness of the condition, to support those affected by haemochromatosis and to provide evidence -based information and education for healthcare practitioners.
Please make a contribution today using the link below to help us prevent harm from too much iron.
www.ha.org.au INFO LINE 1300 019 028 (Australia only)
Support Haemochromatosis Australia
As the national support and advocacy organisation for people with haemochromatosis we need your help to raise awareness of the condition, to support those affected by haemochromatosis and to provide evidence -based information and education for healthcare practitioners.
Please make a contribution today using the link below to help us prevent harm from too much iron.
www.ha.org.au INFO LINE 1300 019 028 (Australia only)
How has haemochromatosis impacted your life?
Discovering you haemochromatosis at an early age, and taking appropriate action often means it will have very little impact on your life.
That's why we advocate for early diagnosis. If it comes later in life, it can have very serious health and lifestyle impacts.
Talk to your doctors about haemochromatosis.
That's why we advocate for early diagnosis. If it comes later in life, it can have very serious health and lifestyle impacts.
Talk to your doctors about haemochromatosis.
zhlédnutí: 551
Video
Haemochromatosis Animation 2022
zhlédnutí 851Před rokem
A brief video explaining the basics of haemochromatosis.
OVERLOAD Art Exhibition Chp
zhlédnutí 109Před 2 lety
Some great publicity from Ch9 TV for our OVERLOAD art exhibition held recently at Gold Coast University Hospital during World Haemochromatosis Week 2022.. The opening sentence is not quite accurate - haemochromatosis leads to an overabundance of iron in the body but always good to see haemochromatosis in the news
Arthritis & Haemochromatosis Webinar
zhlédnutí 3KPřed 2 lety
Sore joints and arthritis is one f the most commonly reported symptoms of iron overload resulting from haemochromatosis. It is the symptom reported to have the greatest impact on the daily lives of people with haemochromatosis. This video explains the basics of arthritis, ways to limit and cope with its impact and how haemochromatosis interacts with joints. This webinar is a collaboration betwe...
HI Webinar Series 2022 Update on Research 1 20 January
zhlédnutí 2,1KPřed 2 lety
This is an important video on research into the long-term impacts of hereditary haemochromatosis on health and disease from the University of Exeter Medical School using Over half a million records from the UK Biobank. . The research identifies increased risk, especially in me and highlights the need for early detection and treatment. Thanks to Haemochromatosis International (haemochromatosis-i...
Recent Developments in Haemochromatosis
zhlédnutí 19KPřed 3 lety
A webinar featuring Professor John Olynyk speaking on new developments in research and our understanding of hereditary haemochromatosis over the last four to five years. The video is a recording of a webinar presented by Haemochromatosis Australia to its members and the public on 3 June 2021. The video concludes with a question and answer session with questions submitted by viewers. Professor O...
Desma - help from Haemochromatosis Australia (Social Cut 02)
zhlédnutí 116Před 4 lety
Desma explains how Haemochromatosis Australia can help you understand your condition.
Jayne - the long path to diagnosis. Social Cut 02
zhlédnutí 379Před 4 lety
Jayne knew from her symptoms that something was wrong but her doctors could not identify it for a long time. The long path to eventual diagnosis.
Jayne - the My Iron Manager app (Social cut 02)
zhlédnutí 168Před 4 lety
Jayne talks about the My Iron Manager app and how the app and a healthy lifestyle help her lead a normal life with haemochromatosis
Desma - arthritis from iron overload (Social Cut 03)
zhlédnutí 1,4KPřed 4 lety
Desma tells us about how iron overload from haemochromatosis led to joint replacements as a result of arthritis.
Haemochromatosis (Community Service Announcement)
zhlédnutí 358Před 5 lety
Copy of CSA for use during 2019 'Iron out your health' campaign
HaemochromatosisJingle
zhlédnutí 931Před 5 lety
Some people might accuse us of making a big song and dance about haemochromatosis. Guilty. A fun, but important message about the most common genetic condition in Australia.
HA Understanding, treating and managing haemochromatosis - current research and the future
zhlédnutí 1,6KPřed 5 lety
HA Understanding, treating and managing haemochromatosis - current research and the future
HA Screening and testing for haemochromatosis
zhlédnutí 2,3KPřed 5 lety
HA Screening and testing for haemochromatosis
HA Learning more about haemochromatosis
zhlédnutí 407Před 5 lety
HA Learning more about haemochromatosis
Eating less red meat does help in the long run. Drinking Tea will also help you absorb less Iron. Vit. C will make you absore More Iron. This does Not fix the problems, but it can be a help.
I don't get it they told me i couldnt donate blood because of hemochromatosis.
My brother was recently diagnosed with hereditary hemochromatosis at levels over 600. I asked my doc to run a complete iron panel and she reluctantly ran this: iron binding capacity, UIBC, iron, iron saturation, Ferritin. I'm 54 (no uterus) and my FERRITIN was high, range of 15-150 per LABCORP and mine was 219. Also when it comes to lab ranges Quest shows for someone my age that normal is 16-232 so if that's the case and I'm at 219 am I really in range afterall or do I have to go by LABCORP ranges since that’s who did the test? My Doc said nothing to be worried about and that's that. Do I need to push for more tests? What is the exact genetic test that I need to ask for? She doesn't seem to know about it at all and I don't know if I should see a specialist or not? I also have Hashimoto's, active EBV, MTHFR c677T and feel like I struggle every single day with inflammation, fatigue, brain issues, weight gain, joint pain, etc. My a1c rose to 5.9 but I brought it down to 5.7 over a period of a year. I made her prescribe me a continuous glucose monitor which is super helpful but still trying to figure out why my glucose seems to run high (130) during the day and sometimes super low (55) at night. Especially when I don't eat carbs or processed foods & I try to intermittent fast most days. But I do like my wine with dinner which I'm trying to stop. I know that's a lot but I'm a bit of a mess. I wish I could find one doc or one naturopath that was really good at figuring this out without throwing meds and or 20 supplements at me. When I try to be my own advocate I get that glare. take care!
HI Kelly? Where are you located? I am not familiar with LABCORP. Are you in USA? This is an Australian channel and we may be using different measurement units. If it is 219 micrograms per litre, that would not be considered particularly high. Did the test also include 'transferrin saturation'? Regardless of current levels, in Australia, as you have a close relative diagnosed our medical system would recommend a test for the HFE gene. Women with haemochromatosis often begin to accumulate stored iron later in life than man because of natural iron depletion during child-bearing years so levels start to increase later in life.
It’s a win win situation
I started getting atrial fibrillation at 29 after feeling tired and stressed for a long time. I started taking a beta blocker and at 31 developed arthritic thumbs and index fingers. Wish that even one Doctor would have run an iron tibc test instead of me not finding out about it until now at 33. Lucky I found out now and not later in life after more damage has occurred. Hepcidin replacement is a potential cure for hemochromatosis. There needs to be more screening for this hereditary condition. It's somewhat common but I suspect a large part of the population is underdiagnosed due to the lack of awareness of proper testing
That one guy looks sick
Been going all year now for 1 unit per week of blood taken. I was at 1298 was tested few weeks ago i was at 180 find out today latest levels. Need to be at 50 before i can donate my blood. Good luck lass with your treatment.
May I ask you your levels? Mine are 190 iron serum, 390 Ferritin, 210 Transferrin. I am going to have the Hfe gene test soon.
Tiredness and fatigue is also a symptom of iron deficiency.
Fatigue is a symptom of just about every disease, being overworked and stressed, and/or living a poor lifestyle. Why would anybody jump to hemochromatosis diagnosis? I have it but it wasn't until I got some blood panels that I knew something was wrong. Then I had to pretty much go on the internet to find a probable cause and fight my doctor for a ferritin test. She was just blowing me off and writing my liver numbers off to me lying about how much I was really drinking. I wasn't a drunk and when I got the ferritin results of over 3600, I made her refer me to a hematologist then fired her. My new GP is much older and much wiser.
@@JoaninFlorida Yes, you can't have the correct diagnosis without a blood test. I also had to argue with doctors in the past when they refused to do tests. They just think about money and not about people's health.
@@Maia_BG Exactly! I think most of them are just trying to cruise through their day by doing as little as possible but still angling to keep you coming back. Curing people is not in their vocabulary anymore.
Thanks for all this information. It has been very informative. I was diagnosed with haemochromatosis 5 years ago. Just diagnosed with osteoarthritis in the spine and SI joints recently.
Thank you very interesting
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.
It is just American vs Australian/UK spelling. In USA and Canada they spell it hemochromatosis. No difference at all.
@@HaemochromatosisAust Thank you so much. It's funny how a simple difference in spelling can make an already difficult situation worse. Take care.
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.!!!??
My doctor sent me for a Ferritin test and it came back high.....
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 CZcams 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
Hi. What symptoms do you have? I became very unwell after binge drinking alcohol as it impacted my liver. So my liver was playing up. Initially they suspected it was the alcohol but iron studies showed my body is retaining too much iron and this is what made my liver more susceptible to alcohol. My symptoms are mostly liver related. Skin rashes Not producing enough bile Tiredness Poor wound healing Heart Palpitations
@@jacoblas1371my doctor told me I should stop drinking forever when I got diagnosed. You might want to do that too, along with giving blood to bring the iron down
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
Was your ferritin high? I’m also currently being tested for this, my ferritin is in the normal range but my iron is quite high. The only reason my dr said she’s looking into it is because I have blood relatives with hemochromatosis
@@leaht4982 my total iron is 151 and iron binding capacity is 309 my Dr said everything is normal range but I keep seeing my rbc as high but then I don’t know 🤷🏻♀️ much about what these numbers mean I hope you don’t have hemacromatosis
I’m also having sharp pains and muscle cramps I never had this and looking back at labs this high RBC has been (since I’ve seen ) at least from 2021 to now
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 🤷🏼♀️
@@buffys3477 Tgey say it’s not causing mine because my ferritin is not in the high hundreds and my organs not iron loaded 🤷🏼♀️ But surely it must affect them
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%.
Can't remember tsat, but I've been un maintenance for 5 years or so, I have to aim to keep it at 50. It crept up to 80 because I forgot to book a blood letting. 2 years ago it went as low as 20 and I felt run down and kept getting cold and flu 🤧 that was having it every three months. Now I need about 3 a year.
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 ?
Fatigue is one of the most common symptoms of iron overload from hereditary haemchromatosis, along with joint pains (not so much muscle cramps). But you can have the genetic risk and even iron overload without symptoms too. Also the muscle cramps may be due to some other cause but you could still have the genetic risk of HH.
@@HaemochromatosisAust not cramps but aches ,deep aches
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
If people can't do phlebotomy there's a drug called deferasirox
I'm really glad it's helping, thank you and best of luck
I tested positive for this sickness a few years ago it is hell on earth. My levels where at dangers levels I remember passing out several times because of It. I would strongly advise anyone who thinks they have this condition to seek medical advice or go to the blood bank every three months or two whatever. It takes. The first two years are the worst so anyone who has it be prepared for that timeline to suffer.. what I have found sense I tested positive for this. Is thatgreen tea helps it has been great benefit in this disease because it cleans the liver out. Also eating dark grapes 🍇 red wine also is a great binding agent have found. But would recommend it in moderate amounts. I Also found that eating olives hand fulls of them few days a week helps with the inflammation related with it. I would recommend eating meat twice a month once at the start then again at the end. God bless you and I wish you who ever reads this the best of recovery and just know you're not alone on your journey.
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
Very happy that you finally had a diagnosis, but it should not have taken that long. All the best. Thanks for helping spread the word.
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.
It seems odd that you would have low ferritin and high iron. What do you mean by high iron? Low ferritin would generally indicate you do not have excess stored iron so it seems unlikely you would need to have blood taken anyway. You need to check with your doctor but I don't think you need to worry about needles, except for occasional blood tests, for a while anyway.
@@mtonykaye sorry I may have been confused, he mentioned high iron and low ferritin, but he could of meant high iron saturation.
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
Is it due arthritis for iron overload?
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?
Give blood. I’m 19 and just got diagnosed. Once you give blood, your body regenerates blood faster than the iron can be replaced and so the excess iron stored in the ferritin is pulled out to even the iron ultimately lowering your iron. And as for needles, if you hate them??? Tough shit😂 I hate them too
He is right but I would see what your doctor recommends. I just found out I have it had a lot of leg and knee pain I was sweating like a pig at work at home even in 65degree room .I was irritable tired and less sharp . Well the doc sent me to Plabotemy and once it was done I felt a bit lighter but the next day I was happier more energetic my legs didn’t hurt I was blown away the difference but it’s been over a week now and I think it’s creeping back up I still feel better just seems to be creeping back up and can’t wait to go get that big ass needle again and never thought I would say that..
You don't imperatively need to give blood in order to lower iron because there are medicines to do that also. Of course those may also come with certain side effects
Is your Dr doing things to help with your hemochromatosis?
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?
Blood donation( whole blood) at least 3 times a year
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.