Haemochromatosis Explained

[@Racheyy666]

My dad had a stroke last July and as awful as it was, it a way it was lucky he did have it as it helped doctors realise he had Heamochromatosis. This year he has started to have a venesection weekly for 6 months then the doctors will re evaluate. It makes me fatigue, tired, pale, get mood swings and even itchy. It needs to be made more aware of.

[@LiamMcGrath100]

Very good video, thank you.

[@pureone26]

My ferritin was actually fine (well 50-100) for many years, as a young woman. But I became incredibly ill and finally the Indian GP (in Oz) found my iron saturation was high (ferritin still fine). By then I have near heart failure and many health problems. I was even vegetarian many years. Doctors in Australia need education! Full iron panel needed. Apparently copper can also induce this (which coexists with B12 deficiency). Aust soils are terrible for copper.

[@peterjohnson8469]

The US is worse is worse when it comes to iron overload. I’m very appreciative of this Australian channel.

[@michaelklander2496]

Yes, a full panel is needed , I think there is more to be fine tune with iron saturation levels also be aware of Iron Avidity where your body absorbs more iron because of too many venesection. Which can cause low feritin and high saturation. I now occasionally have high saturation and I'm still not clear why. There needs to be more data available to patients.

[@robertmoser8882]

I'm 58. Long illness. My ferratin was 4100..4 months ago. Now 2300 after 3 straight blood draws

[@myer2222]

Informative video, thank you. I’m starting my treatments soon and hope I start to feel better soon. Unfortunately though, throw all of my internet research and doctor’s visits- I can’t explain why I constantly feel as if I have the flu. Nothing in my limited researching suggests these chronic symptoms could be Hemochromatosis related. I am awaiting my extensive blood tests for liver and hopefully that will provide some explanation. Does any of this sound familiar?

[@loriematthews6418]

Your comment is a year old, but hopefully your maintenance therapy is going well...and your symptoms sound very VERY familiar to me! That flu like feeling is because you are toxic. To much iron IS toxic. I was diagnosed with hereditary hemachromatosis 2 years ago. It's been horrible. Doctor just doesn't care. But...the main thing is your phlebotomys! When they get it down appropriately you feel great. "Or normal" I hope you are doing well! I will be looking for a more compassionate doctor!

[@irishcountrygirl78]

My dad has it, his brothers and now my sister, but l am confronted with a pitbull nurse on the phone who said they'll check my ferritin level, but not any other tests, that they won't check for hemochromotosis. Typical Ireland. She (the nurse) feels "it's unlikely you have it dear". Even though l have symptoms now at 40.

[@irishcountrygirl78]

Perseverance13 I'll keep going until l know get an answer, request the doctor if the nurse keeps up this silly charade. It's ridiculous.

[@irishcountrygirl78]

Perseverance13 apparently if you were born in England and lived there before 1980 you can't donate here. They only sample your blood. I'll keep pushing though, thanks.

[@irishcountrygirl78]

Perseverance13 it is because the CJD virus has a long incubation period of 15 years or something like that and there is no diagnostic test to screen for it in the blood. That's fair enough l guess. A bit of an insult now as I've been a vegetarian since l was 12 years old, much to the dismay of my parents lol...

[@irishcountrygirl78]

Perseverance13 l was born in London and came "home" to Ireland in 83. So apparently that's me out..

[@irishcountrygirl78]

Perseverance13 l hate needles. I actually get close to passing out, so I'm hoping l don't have the celtic curse.

[@bd5863]

"" - Nobody "Yeah, this is the right tune" - Producer

[@HaemochromatosisAust]

Um yeah, no nominations for Best Musical Score yet.

[@creativeunicorn5551]

Have to agree the music is shocking, for a subject so serious, the music is both irritating and disrespectful. Surely this matter could have been given a more meaningful back track. It feels like a joke is being made of a serious life threatening condition.

[@marysteffens4310]

Anyone get a burning sensation across the lower back? Is it related to HH?

[@lordbelcheriv6115]

I assume that this could also be caused by taking too much iron (ie supplements), even if onr doesn't have this inherited iron disorder?

[@HaemochromatosisAust]

You would have to take an awful lot, especially if they were just over-the-counter pills. Even then your digestive system probably would not absorb the iron very well (if you don't have the gene mutations). Injected iron infusions might produce some similar symptoms but they are usually managed and monitored by a medical practitioner so an overdose less likely.

[@flaggism]

Easy to treat???every time i go to the doc my levels are still the same and they could take more but dont,,,i dont get it...and my background says im anglo saxon or something like that well its not on you tube.

[@flaggism]

Hell i have heart failure from this and died in hospital for 3 mins til they broke my ribs bringing me back then blamed it on sleep apnea that i dont have.

[@HaemochromatosisAust]

Have you had gene test confirming you have genetic haemochromatosis?

[@nihonforever668]

@@HaemochromatosisAust Not always the gene!!! I am former alcoholic and had high ferritin and all the terrible symptoms! Why you focusing on genes all the time?

[@lewiskeefe6562]

I carry a single variant of the C282Y gene, should this be of any concern to my own health and should I get tested? Thanks in advance!

[@HaemochromatosisAust]

Np action required for one gene mutation only. The 'normal' copy does the job of regulating iron absorption.

[@angelicaschlitz9933]

yes, get tested definitely

[@mercedezmunoz0128]

Hemocromatosis is no't a joke.. I have it an I learned to live with it ... But the Join pain is 😭

[@marknovak8471]

Look up 'iron chelation therapy' and forget these quacks.

[@howardmann8689]

My ferrati was 3800..just give blood

[@howardmann8689]

After 1 draw 2700

[@mercedezmunoz0128]

In 2009 I had to go in to have one pint of blood removed once a month for 2 years thank God I haven't had any issues since then every year I see my oncologies and all the oncologies that I have met they always said the same you need to worry about the iron but also have to look into the ferreting levels very important I also learned that hemochromatosis can damage your heart and lungs and eyes so I had my eyes check a year ago Because for this issue I didn't know that we can become blind. It's something that I have learned from my DR she says that in all text tests that I went through they never checked my eyes and heart. I am also developing arthritis already faithful. Himocromstosis is very very difficult and a rare condition for women's.

[@stevensilver6298]

What about high iron in your drinking water?

[@HaemochromatosisAust]

Not enough to be significant. I you have genetic haemochromatosis your body can get more than enough iron from the food you eat.

[@stevensilver6298]

@@HaemochromatosisAust If you have very high iron from your drinking water wouldn't that contribute to this problem of Haemochromatosis? Never hear about water contributing to this problem. Iron in water is suppose to be bad for anyone because of the size of the iron particles in the water. I think this has been over looked.

[@bekayezme]

Can hemochromatosis just sudden pop up? I am hypthryroid and in my 30s there were times when my iron level was so low I didn’t have any and had to take iron. I just had my ferritin check and it is high according the lab levels.

[@marknovak8471]

No. You are born with it and by the time most people find out in their 40's and 50's the damage that will eventually kill them has mostly already been done. A single high blood iron reading can be caused by a few other non fatal things.

[@awardy1472]

I only got diagnosed with haemochromatosis 6 months ago, I like to know is it normal to have stinging pain in the lower right side of my back? I'm still waiting on my doctor to take the blood out of me so that it will reduce my iron levels. He is probably forgetting over been so busy with the covid 19.

[@HaemochromatosisAust]

Hi Ward - that's not a typical symptom but everyone is a little different. Maybe you should follow up with your doctor.

[@peterjohnson8469]

I was just diagnosed. The reason I went to the Dr. was lower back pain that wouldn’t go away and it moved to my right side. It was dull pain right under my rib cage. Going today for them to start taking my blood weekly.

[@marknovak8471]

@@peterjohnson8469 There are alternatives to venasections. I had two and that was enough for me.

[@wmauibill]

I have that as well diagnosed yesterday. Love you.

[@wmauibill]

How are you feeling three years later?

[@euricadenette5922]

Today is Dec 10th, 2022 ... in December of 2015, I had vertical gastric sleeve. In my vitamin regimen I was prescribed to take chelated iron with vitamin C tablets. I've been taking them (along with other supplements) for the last 7 years. Is there any danger of vitamin overload? In the past, periodically I would have my blood work checked but I haven't did it within the last 3 years.

[@HaemochromatosisAust]

Hi Eurice. That’s not something we can provide information on, We only provide information relating to haemochromatosis generally, Your question would be dependant on yur personal health condition and other factors and would be best discussed with a medical practitioner with access to your records and current health information.

[@andreabraquet4869]

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.

[@energyhands]

Do any people suffer from not dreaming?

[@marknovak8471]

Yes. I never get as far as REM sleep. It contributes mightily to the fact that I'm exhausted 24/7.

[@howardmann8689]

My ferratin was 3800..now 2000 after two blood draws

[@kimberlygranger5205]

I’m just exhausted all the time.

[@jillianalden8040]

You still suffer long term fatigue/tiredness aches and pain for life with Hemochromitosis

[@amiosa35]

Such a positive attitude

[@BushyHairedStranger]

So fasting would help…

[@Zxenmusic]

I just got diagnosed. Who is the MORON who cut this video with the wacky music? Completely inappropriate. This should not have been published.

[@irishcountrygirl78]

Zxenmusic yeah sounds stupid alright...

[@cpnstbn1266]

Lmao

[@katherineswart1541]

Interesting video, please get rid odvthe irrelevent and incredibly annoying music, we're not at a country and western hoe down, we're trying to learn medical facts, thank you.

[@suzannel2414]

Lol

[@delicrux]

Am i the only person that doesnt agree with giving my blood away for free? Damn vampires.

[@peterjohnson8469]

Not if I’m full of poisonous iron. They can take it and do whatever they want with it.

[@loriematthews6418]

@@peterjohnson8469 I know your comment is a year old but...I totally agree! I have hereditary hemachromatosis, and when that iron builds up, you feel just like you've been poisoned. Because the iron is indeed TOXIC to patients with this disease... after I have a big bag of blood drained, I feel somewhat "normal" again.

[@All-Father-Odin-967]

definately need this infromation but this video, editing, music etc is awful. Music is mega shite. Sorry but it needs redoing.

[@HaemochromatosisAust]

This one was done a few years back. We are working on a series of new videos out in the next couple of months. Stay tuned.

[@OSHAWATRAMP]

lol you spelled it wrong................ he·mo·chro·ma·to·sis.

[@HaemochromatosisAust]

Only for North Americans. In Australia and UK we spell it 'haemochromatosis'

[@OSHAWATRAMP]

@@HaemochromatosisAust lmao you in the uk and aus. also spell mom /mum and you think yours is the right way lmao

[@OSHAWATRAMP]

do me a fav and split the word up like i did

[@marknovak8471]

@@OSHAWATRAMP It's in Latin, idiot. Go tell them how they should spell it.

[@nihonforever668]

@@OSHAWATRAMP Get lost.Hi from NZ.

[@modernman1240]

I am a North Indian. Why on earth do I have it??😏

[@lroyjohnston5560]

You are special lol

[@esvoosvaj5670]

This condition is known as the Celtic Curse, because Celts in Europe carried the gene for it, and as they migrated out of Europe, they spread this gene around to other people. You may have some Celtic blood in you. You can do a DNA ancestry test if you are curious!