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@BrandonStandefer
@BrandonStandefer 2 күн бұрын
Thank you for your video. I just received results and am homozygous (H63D). Does this mean I have Hemochromatosis?
@mtonykaye
@mtonykaye 2 күн бұрын
No. Homoxygous H63D should not cause iron overload or symptoms.
@angelarawlins3703
@angelarawlins3703 4 ай бұрын
Definitely more research but not just on C282Y’s but Compounds too. Just because my iron levels are not in the high hundreds I feel my health conditions are dismissed. Ok, so I don’t have iron in high hundreds but how does the GH compound affect my heart and diabetes diagnosis??
@angelarawlins3703
@angelarawlins3703 4 ай бұрын
I’d like to know if the GH didn’t cause my heart and diabetes what has?
@angelarawlins3703
@angelarawlins3703 4 ай бұрын
So I have GH Heterozygous (Compound) have Atrial Fibrillation and Type 2 Diabetes apparently not loading high iron, how do I find out WHAT is causing these conditions as I’m told not related to GH!
@angelarawlins3703
@angelarawlins3703 4 ай бұрын
Genetic Haemochromatosis causes iron overload,
@clarabell3023
@clarabell3023 4 ай бұрын
Almost all Breakfast cereals in Australia are high in added iron. Fed to millions of children every day without any regard to the high northern European ancestry of Australia.
@WoodsLuminaires
@WoodsLuminaires Ай бұрын
Same with USA!
@sw6118
@sw6118 5 ай бұрын
You only need one gene to be at risk.
@shetlandvikinginaustralia9134
@shetlandvikinginaustralia9134 5 ай бұрын
Very interesting, I have a friend that has been diagnosed with syncope, however has spent so much money trying to understand what is causing this without success. More recently after visiting a wholistic GP he has been diagnosed with haemochromatosis. Is it possible this syncope could be caused by build up of iron in the heart, and if so what should he be asking his specialist.
@HaemochromatosisAust
@HaemochromatosisAust 5 ай бұрын
Syncope is not a symptom normally associated with iron overload from haemochromatosis. However we can't give medial advice and we are not qualified to give an answer to your question. I suggest your friend should mention the fact he has been diagnosed to his specialist and take a copy of recent tests (iron studies and gene test for the HFE gene) with them.
@dr.stevenpennym.d.3241
@dr.stevenpennym.d.3241 7 ай бұрын
Easy Peezy process
@RPOLIVNICK
@RPOLIVNICK 8 ай бұрын
I have high iron. Infrared sauna every night. If I go for more then a week without the sauna I feel sore in the joints.
@angelarawlins3703
@angelarawlins3703 9 ай бұрын
I have Compound variant C282y & H63D. I have Supra ventricular tachycardia which is now Peripheral Atrial Fibrillation, then developed T2 diabetes in 2021. My fathers family have a serious history of strokes, mothers family aortic aneurysms. I’m 66 and have been fighting for 2 yrs to get a genetic test even though both brother and sister had been diagnosed. Today saw a dr who has said none of those health issues are connected to GH!! Fighting ignorance. All that was carried out were blood tests and was told highest score was 300 ferritin, I said that was for men. I was hoping for 1 -2 venesections to see if they would improve my PAF & T2D🤷🏼‍♀️ UK
@angelarawlins3703
@angelarawlins3703 9 ай бұрын
Mother had really bath arthritis. I’ve suffered hip, back pain for years. Had part replaced knee and arthritic big toe joints that are seemingly inherited. Now, degenerated neck 5&6 cervical spine.
@widowswatch6610
@widowswatch6610 11 ай бұрын
Can iron overload cause gastritis? I have both……the saturation is still a little high and ferritin is lower. My gastritis makes my stomach burn
@GeorgeMarin-ii8yz
@GeorgeMarin-ii8yz Жыл бұрын
I have high ferritin. One year ago, I donated blood at Canadian Blood Service, and they said that I could not donate anymore because, in the past, I was infected by hepatitis B. Unfortunately, my ferritin is high again. What have I to do? Do you know a clinic that can help me? Please send me an email.
@The_Resistance_1961
@The_Resistance_1961 Жыл бұрын
It seriously disappoints me that Australian videos utterly fail to address HH symptoms. It's like there are none, or if you have them you shouldn't worry about them. I've been experiencing progressively worse symptoms since I was a 35 year old and have zero treatment or help with any of them the whole time, including a current aortic aneurysm. Nor do Australians talk about alternative treatments to venasections, a procedure which has no provable effect.
@debravascukynas8491
@debravascukynas8491 Жыл бұрын
Can this happen with half gene of hemochromatosis? My ferritin level is 372 and I have extreme inflammation and joint pain.
@linlivingstonjnr1615
@linlivingstonjnr1615 11 ай бұрын
@debravascuknas8491 ; I AM FULL OF INFORMATION & JOINT PAIN... JUST CHECK MY FERRITIN & RESULT WAS 360... SAUNAS / ACTIVATED CHARCOAL WITH WHITE CANE RUM... IS A MUST THERAPHY TO RID THE BODY OF THIS POISONS..!!!
@organictarot1018
@organictarot1018 Жыл бұрын
If your gay and have a normal sex like you can’t donate blood . #discrimination
@The_Resistance_1961
@The_Resistance_1961 Жыл бұрын
Nor if you have Hep C antibodies.
@beepbeep1307
@beepbeep1307 Жыл бұрын
Where in Australia do you practice doctor? You sound very thorough and caring. Would love a GP like yourself 😊
@judithpoulin2351
@judithpoulin2351 Жыл бұрын
Significant mineral balancing in the body? Copper balancing?
@judithpoulin2351
@judithpoulin2351 Жыл бұрын
Wonder if oxalate deposition in joints, maybe binding to the iron there, could be a factor ?
@linlivingstonjnr1615
@linlivingstonjnr1615 11 ай бұрын
@JUDITHPOULIN ; YOUR SUGGESTION IS 💯 % SPOT ON... INTELLIGENT / CRITICAL THINKING ... THIS NEEDS TO BE RESEARCHED..!!!
@judithpoulin2351
@judithpoulin2351 11 ай бұрын
@@linlivingstonjnr1615 thanks for the compliment…I never see joint crystals actually analyzed (ouch) but I have huge oxalate issues. They seem to be referred to as another type of crystal than calcium oxalate. I’ve had a practitioner say Oxalates are due to tissue calcification…a mineral imbalance. Makes sense for sure…
@grahamehynard-bc1jm
@grahamehynard-bc1jm Жыл бұрын
I would like to thank you for your video and correspondence to lead me to Dr Malcolm Handle at St Vincent's Hospital Sydney, I had almost given up on everything but I now have some relief, more importantly someone who has some idea with what is going on with HH. I am indebted to you.
@AmericanPatriot1972
@AmericanPatriot1972 Жыл бұрын
My recent blood test showed a high level of Iron in my blood. My doctor put me on Folic Acid to lower my Iron levels. Is that common?
@girlsbasketballharvey2312
@girlsbasketballharvey2312 Жыл бұрын
High iron and high ferritin plus testing positive for the gene
@helenemontpetit4494
@helenemontpetit4494 Жыл бұрын
I wonder when do we start giving blood? My ferritin is up to 700. I am à 62 years old woman. Also diagnosed with sjogrens and rhumatoïd arthritis. Thank you very much for this interesting video.
@fulviabompani7783
@fulviabompani7783 Жыл бұрын
I have been supplementing N-Acetyl Cysteine for a year and my ferritin halved. Please share any info on this.
@nataliaetingen4254
@nataliaetingen4254 5 күн бұрын
Do you have hemochromatosis?
@skblack5050
@skblack5050 Жыл бұрын
Be aware that the aging water system has old iron pipes in the ground. It the fire hydrant is old, the water pipe is at least that old. .
@hicoteo
@hicoteo Жыл бұрын
My step dad developed iron overload as he aged. For other reasons he went on a keto diet for four months, lost 40 pounds, then continued to eat healthy. His iron problem went away.
@WoodsLuminaires
@WoodsLuminaires Ай бұрын
Did he have breathing issues? Did his breathing issues go away?
@jdknight-mark633
@jdknight-mark633 Жыл бұрын
At present…the unknown reasons for long haul Covid are identical. Where do we go from here!
@Tilr701
@Tilr701 Жыл бұрын
Hi How can I get in touch with Dr Martin. Please forward me an email
@HaemochromatosisAust
@HaemochromatosisAust Жыл бұрын
Hi Not sure if Prof Martin Delatycki has a clinical practice seeing patients. You may be able to contact him through the Murdoch Childrens Research Institute, Melbourne www.mcri.edu.au/researcher-details/martin-delatycki
@edvhollywood4544
@edvhollywood4544 Жыл бұрын
I have it for years. But I had hepatitis C so it was a big hassle. Now I have been cured of hep C so I will go to Red Cross. But I started to ignore the high blood count, and it was such a hassle in the states, the health system etc. but tonite I got a big scare. Bleeding excessivethru my leg , a small cut. I had to put pressure on it to stop it a lot of blood streaming out. No one is talking about bleeding. That is hematomchrissis right?
@The_Resistance_1961
@The_Resistance_1961 Жыл бұрын
Well, it might mean that but it might mean a lot of other things too. I have to admit though that if cut I tend to bleed for a long time, and then the cut will take forever to heal. I've had a smallish sore on my leg for two months and it still has a scab on it. That's fairly typical these days.
@jeffford181
@jeffford181 Жыл бұрын
I appreciate all good , informative video's.. Thank you
@g.jelli...
@g.jelli... Жыл бұрын
This video was very helpful. Thank you!
@Mickymouse-lx8eb
@Mickymouse-lx8eb Жыл бұрын
Very good explanation and plan speaking thanks👍
@Mickymouse-lx8eb
@Mickymouse-lx8eb Жыл бұрын
Very interesting,well said 👍👍
@sarar5230
@sarar5230 Жыл бұрын
Im researching this, due to a family member being diagnosed with this 5 years ago. There’s good info on the British Skin Foundation and a blog linked to skin and Hemochromatosis dealing with skin/pain conditions. Also Hemochromatosis help online
@seymau5974
@seymau5974 Жыл бұрын
no sound !
@amybrock9840
@amybrock9840 2 жыл бұрын
Thanks so much for your video. So many doctors are not aware of this problem with hereditary hemochromatosis. It is a very painful condition.
@DeverVision
@DeverVision 2 жыл бұрын
What about the heart. Does the iron levels drop. Or, does the iron and damage get pulled from the heart? And, what organ gets effected first? I have hemochromatosis and my body feels badly damaged. Any answers would be great. Thanks.
@amybrock9840
@amybrock9840 2 жыл бұрын
I don't know about damage . When you have a phlebotomy it causes the body to use the iron that is stored in tissues and organs . This is what my hemotologist told me .
@braddywarbucks
@braddywarbucks Жыл бұрын
He says in the video that it pulls the iron back out of organs. But not joints. I have read that life expectancy for well and early treated HH is almost that of a non HH person.
@mammamia200
@mammamia200 3 ай бұрын
Thank you so much for this video. I have severe arthritis in my hip along with arthritis everywhere. I have hereditary hemochromatosis and also Alpha-1. I am SZ. I suffer terribly but do the treadmill almost daily 15 minutes. I need to get back to using weights. I am desperately trying to avoid a hip replacement. I will subscribe for future videos. Thank you again!!
@Conny226
@Conny226 2 жыл бұрын
My daughter in law has to much iron in her blood she wanted to donate some blood at the Red Cross ,they did not take her blood .What now? Does she have to die she is only 27
@IronMatters
@IronMatters 2 жыл бұрын
It depends whether she has had the genetic test to confirm she has haemochromatosis and the reason the Red Cross did not allow her to donate. Our InfoLine 1300 019 028 is available during business hours for information.
@DickNasty480
@DickNasty480 2 жыл бұрын
Plenty of other places that will do therapeutic phlebotomy- many times the blood banks need a physician's order stating that a person has a medical condition such as hemochromatosis that requires more frequent blood donations. In my area, the blood bank only allows donations every 56 days but if you r doctor sends a release that you need more frequent blood draws, they will accommodate you .
@debbieingram1931
@debbieingram1931 2 жыл бұрын
I started with arthritis in my knee and hips and hands, now 3 years on I seem to have it in every joint from my jaw down to my feet, I am only 53 and was only diagnosed with HH 3 years ago. Sadly my doctor had never heard of it and has no interest in learning, where can I go to find treatment for my bones, as he is just saying it's probably osteoarthritis, I did have x-rays done of knee and hip and that's where he drew he diagnosis from, but when I returned with other boney issues he just put me on a waiting list for rheumatology, this list is at least 4 years long! I want answers now and treatment now!
@amybrock9840
@amybrock9840 2 жыл бұрын
I feel for you . I was diagnosed a little over 2 years ago. I too have lots of joint pain . I have tried deep blue cream and it helps with joint pain .
@debbieingram1931
@debbieingram1931 2 жыл бұрын
I have never heard of that? Is it prescribed or over the counter?
@amybrock9840
@amybrock9840 Жыл бұрын
It is over the counter .
@lauchlanguddy1004
@lauchlanguddy1004 Жыл бұрын
Ok dont quote me but..... My hands and knuckles , right hand were impacted but over the years have improved greatly. I recently developed "mild" arthritis in my right hip. long story short, I have been taking curcumin with pepper and glucosamine with chondrotin, one for three months and the Glucosamine for about a month and it "seems" to be moderating.... dont quote me but... My major concern is iron based dementia
@debbieingram1931
@debbieingram1931 Жыл бұрын
@@lauchlanguddy1004 ok that's a new one on me! What is iron based dementia?
@ddflowers1227
@ddflowers1227 2 жыл бұрын
I was diagnosed with Hereditary Hemochromatosis based on my iron panels in September 2021 at 57 years old I didn’t believe it. A genetic disorder just presenting itself this late in life.. no way! I paid for a genetic test to confirm. I couldn’t believe it was true. I told my 4 siblings and my daughter. So far... one sister has it but is asymptotic... one sister only has one gene... the other two haven’t been tested. My only child had the genetic test done and she has the exact same thing. Which means my husband is a carrier as well since I can only give her one defective gene... not two. Unfortunately my ferritin levels are very high and just finished my 4th therapeutic phlebotomy treatment.... I am just grateful that the rest of my family will always be okay because their doctors will now always be on the lookout if their iron levels and ferritin levels and iron saturation levels. start to go up. They will never have to go through what I am going through.....
@gen-X-trader
@gen-X-trader 2 жыл бұрын
As someone who has a very minor form of this. Single h63d, unknown s65c, but something was up because I had a 60% saturation and symptoms even with normal ferritin. In my case donating blood a couple of times a year has been wonderful for the brain fog, the metallic taste I would get in my mouth sometimes. The fatigue. I could only imagine how bad this would be for someone who had a pair of c282y. Wish I would have known how easy this was to treat when I was younger and began developing symptoms in my 30s.
@Thornlessrose39
@Thornlessrose39 2 жыл бұрын
Did I just read that you have H63D/S65C as in mild iron overloading? If so then thank you because I have S65C Homozygous as this S65C/S65C mutation diagnosed in June 2019 the highest my ferritin level got to was 451 in March 2020. It was suggested to my then doctor at the same clinic I still attend,that going by my elevated ferritin levels that I needed to be tested for Haemochromotosis. I was stunned with the results. I struggle with severe migraines and also Stroke like symptoms from them,diagnosed with having Hemiplegic migraines last year with white matter ischemia changes of the brain. Symptoms I have are numerous including a gastric illness as I also have chronic comorbidity conditions with scarring of the lungs,reproductive organs and now my liver. I am reminded every 3 months by my doctor under the recommendation of my Hematologist who I saw for 12 months for extensive testing,including two ultrasounds of my liver,to have iron panel and liver enzymes tested. Every 3 months they take blood for tests not for venesections which due to being susceptible in being anaemic I cannot have. I am 49 years old.
@sisamhlan33
@sisamhlan33 2 жыл бұрын
Are there any compensatory mechanisms in hemochromatosis the body may have?
@BenRoberts12
@BenRoberts12 2 жыл бұрын
crave more milky coffee and less steak
@lisamcmullan6484
@lisamcmullan6484 2 жыл бұрын
I agree
@pamila.adikari
@pamila.adikari 2 жыл бұрын
Great!
@robin-jewsbury
@robin-jewsbury 2 жыл бұрын
You correctly say it's a genetic condition but in discussing the diagnosis there is no mention of a DNA test. There is a paper from Exeter University that states only 10% of women and 20% of men with the mutations get clinical symptoms but this means this percentage have severe liver damage and/or heart disease when diagnosed, so it's not really a good idea to wait for clinical presentation. A better diagnosis is at biological penetrance when blood panel measurements indicate iron overload and this occurs for 80% of people with homozygous C282Y. It's perhaps the clinical penetrance which puts you off DNA tests but I think clinical penetrance is irrelevant if diagnosis can be done a biological penetrance (ie years earlier). In my case I discovered I had Hemochromatosis because of only a commercial DNA test (Ancestry) and it was then confirmed by my doctors with iron panel and MRI Ferriscan. I know its not the recommendation anywhere yet (for non family members) but I believe DNA tests should actually come first for everyone especially as millions of people are doing Family Tree type DNA tests anyway - so there is no incremental cost involved for something that could stop someone die-ing needlessly early.
@mcguv2
@mcguv2 3 жыл бұрын
Interesting thanks for your help
@minikensh
@minikensh 3 жыл бұрын
Very interesting Thank you I have hh
@myobs
@myobs 3 жыл бұрын
For someone with a needle phobia like me, saying things like 'cutting into a vein' and 'big juicy veins' is the last thing they want to hear!
@IronMatters
@IronMatters 3 жыл бұрын
Many share your feelings there and we didn't mean to put anyone off. This podcast series was originally designed for health professionals who would be a little more 'hardened' to concepts like that but has also proved popular with the general haemochromatosis audience.
@The_Resistance_1961
@The_Resistance_1961 Жыл бұрын
Look up a man named Eristratus and see what you think of venasections. Superstitious nonsense. There are no empirical studies whatsoever into the long term benefits of blood-letting.
@pureone26
@pureone26 3 жыл бұрын
I was admitted to australian hospital with severe tachycardia leading to seizures, they wouldn't consider my iron overload history, don't even think it was written down. GP also knows little. It's extremely under diagnosed, most are still stuck in the idea that most people need more iron (yet iron is being linked to so many bad things now).
@IronMatters
@IronMatters 3 жыл бұрын
Very true. We (Haemochromatosis Australia) are working hard to change that.
@mykindofcooking
@mykindofcooking Жыл бұрын
Hi how are you doing now. I am asking because I have my sister in the same situation. Any suggestions. Please and thank you
@jdknight-mark633
@jdknight-mark633 Жыл бұрын
My son was hospitalized with what he thought was a heart attack due to high feratin count. He was diagnosed by a holistic practitioner. The treatment is a process of letting blood, diet awareness… Paracardia was the term used. I am a big fan of Sanjay Gupta, a doctor at York Cardiology. His podcasts are excellent and easy to relate to.