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Thank you for promoting awareness of Haemochromatosis. I was pleased to be diagnosed at about 45, after years of being symptomatic and had high serum ferritin. In Australia there's no charge for HFE genetic testing if you have a family history. Also no cost if we donate blood through Redcross Lifeblood. Regular blood tests are also covered by Medicare. Mind you, it took too long for the GP's and 2 Rheumatologists to figure out why I was always grumbling about my joints. Best wishes

I’m waiting on a hematology referral.. I have both genetic markers and high ferratin. I can’t donate blood without a doctors approval due to my two platelet issues, also hereditary. My heavy periods from the platelet disorders were regulating me.. they stopped. My iron is going up. I don’t know how long the referral will take.. weeks, months…. Will they listen to me? I can only hope. Doctors need to be educated about this. So do patients. I’m so sorry for all you’ve gone through. Nobody should live this way.

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Why don’t you talk about Therapeutic Phlebotomy at all, also you think pain relieves works better than supplements? Story Dr the only things I like about this podcast was to keep the Ferritin level lower than 50. All those pain medicine have lots of side effects.

I am so sorry for what you have gone through, It should never have happened like this. I am from USA with British and Scottish parents. I have been ill with various symptoms over last 2 years and now I have signs of liver damage. They ran a test and now it shows high ferritin. I just had blood drawn for HFE Genetic testing. Waiting on results. I came across your video today. Day after blood drawn. My heart is breaking for you. One doctor told me to stop drinking when I told her I had enlarged liver. I absolutely never would drink alcohol. I was so upset with how the doctors dismiss so much. Finally, I have a doctor, who probably also considered my British heritage , who felt it was time to test the genes. I pray for your family and truly I am so sorry.

I’m 35 and found out last year after doing 23 and me that I have two copies of the C282y variant. Transferrin saturation is 61% last blood test but ferritin is lower obviously due to my age and gender. My cousins 14 year old son is now in the middle of being diagnosed due to alarming blood results.

I got dx with almost 10 years ago but no doctor has told me what to do.

Regarding diet, greatly diminishing the "nightshades" group of vegetables can yield benefits. These are high in the anti-nutrient s, glyco-Alkaloids and Lectins.

An indicator of risk not mentioned is arthritis in the ankles that was not triggered by an injury, especially at a younger age than is common for arthritis. Knuckles are another common problem area. I suffered from this, together with fatigue and depression, for about 10 years before anyone thought to test my iron levels. I had so many other blood tests during those 10 years! When I tell people about haemochromatosis, many of them say they know they haven't got it because they " had a blood test and it was fine". But when I ask what they had tested, they have no idea. Routine blood tests that show anaemia don't reveal iron overload, because they don't measure iron. They use haemoglobin. My first step was a blood test for ferritin. This was much too high, so the genetic test followed.

How many das drs are there at steppinghill hospital

Made in Scotland….from girders.

I was diagnosed in my early 50s. I now regularly donate blood as I am on the HAE register. This way my Fe rich O Rh +ve does some good instead of being destroyed as it was after venesection. Good luck to all fellow carriers!!

4 years now, my joints are really bad, and fatigue is server

If oxidative stress causes the expression of uric acid for its anti oxidant properties shouldn't people with gout who don't drink excessively be screened for HH and shouldn't people diagnosed with HH have uric acid levels tested and given med to lowered them to under 5, maybe 4 to prevent the joint damage and osteophytes that uric acid can cause.

I thought the penetrance of c282y was 50-90 not 10%. What do you think about the oxidative stress caused by HH causing the body to express uric acid as an anti oxidant and this increased uric acid being the primary cause of joint cartilage break down? when does stored tissue ferritin get released, does serum ferritin have to be brought down low, under 30 for the body to see an iron deficiency and then signal the release of stored ferritin. Does stored ferritin have to be depleted before hemosiderin is released? Should we be bled when ferritin rises to 50 or above to be bled so we drop to around 20 in order to keep forcing the release of stored tissue ferritin and hemosiderin? Is this release from storage want causes serum iron and SAT% to remain high even when ferritin bounces between 20-50 and this will keep happening until stored tissue ferritin and hemosiderin are depleted and which point it can no longer be released into the blood stream to raise them. At this point will serum iron and SAT% will be back in sync and have a proper relationship to serum ferritin again? In the early stages of treatment does and stored ferritin and hemosiderin get lowered with each phlebotomy or does it remain in place until the body sees an iron deficiency, like when it does when we hit maintenance before those iron reserves are ever released since the purpose of storage is for emergency use when food and or iron in food is scarce.

Planet Ayurveda's gout medicine has become my joint rescue. The herbal blend is gentle yet powerful, providing relief without any harsh side effects. Grateful to Planet Ayurveda for their exceptional product.

Its 2023 i just been diagnosed with iron overload and hireditry hemochromatosis it makes sense why i was loosing weight without trying im glad i had my iron test when i did now i can start treatment giving blood

My parents were both carriers. My brother has it, my older sister and I do not. Bro was diagnosed in his early 30s but chose to ignore the situation. He was mildly affected so he got away with it until he hit 70, then contacted me about the "diagnosis" he'd just been given and told me to get checked. Bro was shocked when I told him I'd been tested 40 years earlier when HE was first diagnosed. He had absolutely no memory of being diagnosed. He had just shrugged it off as not being worth remembering. Not a good idea. Now he's got real damage to deal with.

My Dr said I have high iron, but when I give blood the tests are always in the normal range. What's up with that?

Perhaps we need to mix more with people from other southern nations ? More immigration required to the Celtic regions obvs.

Can we have another vaccine or at least a lockdown ?

A couple of Oranges

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An inherent affliction from the Vikings. The population studies show a very interesting and distinct distribution pattern for the C282Y mutation across Europe. Regions in Northern Europe, that were established Viking homelands and settlements, have the highest frequencies (5.1-9.1%) of the C282Y mutation.

Wales, Scotland too. All Celtish orgins.

I have this aswell as my brothers and mom we have a venus for a pint of blood when iron levels are high

Guessing side effects from the evil jib

Stop the toxic fear mongering Turn the tv off Put your phone down Get out in the fresh air Live

It be helpful if iron supplements could make a mention of this. So many variables that can account for tiredness, not just knee jerk assumption of anemia...Blood letting was a practice wasnt it? Seems some Folklore medicine has wisdom afterall. 😊

Try Pentosan Polysulfate ipps Zilosul the company developing this drug is called Paradigm biopharmaceuticals watch this space next blockbuster drug

If the "worried well" is an issue, just go and donate blood as often as you can, and if your BP is too low, then start exercising and then donate. I didn't, and my iron overload was so bad at age 40 that I lost most of my hair and developed liver cirrhosis, arrhythmia, arthritis, etc.

I wonder how many people are diagnosed with Fibromyalgia but they have Haemochromatosis . Seems like quite a few similarities? Just a thought.

Thank you very much Dr Tim St Pierre . This video was very interesting, gave information on high but understandable level. I was already 60+ when I was diagnosed hereditary hemochromatosis and during a 12 weeks phlebotomy procedure I asked about this MRI but was told that this was not done on routine basis… so based on this video I immediately contacted FerriScan/SmartScan to get a list of (European) hospitals/universities that can provide this MRI scan… Waiting now…

NSAID, steroid and antacid drugs ruin your health. The best thing is phlebotomy and an anti inflammatory diet. Nontoxic Whole Foods

I am so sorry for your immense loss - I was diagnosed almost 18years ago and am one of the lucky ones. Covid was an awful time - particularly for those of us who needed venesections and were unable to avail of the service - we weren't a priority. Keep telling your story - Peter's name should live on 👏

Incredibly sad to watch this story. A story which shows why GPs need more education To monitor patients for this condition. I have it and was diagnosed at 52. I’m monitored and give blood regularly now but suffer extreme fatigue so can relate to this story. The symptoms are silent unless those we trust get us proper genetic testing to rule out this condition. Love to his wife and family and thank you for sharing 💕

So sorry for your loss x if my brother, who lives in Australia hadn't had a genetic blood test... I would still be suffering joint pain, fatigue and depression. I'm a different woman now. It should be part of routine blood tests in the UK and educate GPs

A very interesting and informative video - just watched it today 16th Aug. I would be very interested in being part of any associated research in the future. I have 2 copies of C282Y and problems with hip and feet. For exercise I mainly golf and cycle. Use Voltarol Gel and Paracetamol as pain killers plus turmeric oil!

Absolutely heartbreaking. I’ve been trying for nearly 2 years to get a genetic test even though my brother and sister had been tested. Eventually through tenacity and presenting the facts did I get a test, we’re Compound version, no luck there because I believe no body takes this variant seriously. My fathers family has a history of early death by strokes. I have developed SVT, and recently past 4 years PAF & T2 diabetes. I believe may various hip, spine and neck problems may well be part of it.

I am SO sorry for your loss and how brave you are making this film to inform people. ❤

Thank you so much I was just discovered with this.. Pray I don't get cancer

Thank you. Following a life of arthritis, osteo, serum pos. RA, being presented with two copies of C282Y and this information I have a greater understanding of my own progression over 40 years (now 67). See my haematologist later this week for results of Bone Marrow Biopsy, so kind of just hoping its 'just hereditary hemochromatosis', and not one of many other additional possibilities.

Humans Sensing magnetic fields, yes they can, I’m a healer and do sense peoples energy.

I had a coil at around 45 and no periods and went into menopause having had no periods since the coil. So if I were C282y could have loaded more iron. I’m Compound with PAF & T2D

I am a Complementary Therapist of 25 yrs and have used strong magnets for healing muscle and bone breaks.

My transferin high over limit testing now haemecremotosis

I am 72, have had Hemo for 8 years. Have every painful thing discussed plus extremely severe fatigue. Ferritin got up to 4700 shortly after diagnosis. Medical care has been less than adequate. Find a good doctor.

I had a very high Ferritin level of 4580 diagnosed five years ago. I am now down to below 50 after many venesections. I keep my hands moving by playing guitar. My hips and ankles moving by walking or bicycling. I basically have arthritis all over. I’m 62 years of age now. Non-Smoker. Non-drinker for 23 years. Hemochromatosis has given me fibrosis of the liver. I take milk thistle and choline for my liver. My ALT & AST numbers are good - in the 20’s.

Every interesting and informative