Recent Developments in Haemochromatosis
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- เผยแพร่เมื่อ 13 พ.ค. 2024
- 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 Olynyk, is a clinician and researcher based in Perth and one of the leading experts on haemochromatosis in Australia. John is Consultant Hepatologist, Fiona Stanley Hospital, Dean of Clinical Research, Edith Cowan University, Theme Lead, Health Research, Edith Cowan University.
Is there a possibility that Oxalates play a role here? I’ve heard that HH people often have kidney stones as another symptom…
So maybe there’s iron binding to oxalate crystals, depositing in joints?
I am a hemochromatosis lady with severe osteo arthritis in my left knee that lit up early this year due to a very low oxalates diet (called oxalates dumping). I wonder if that supercharged my arthritis...I had no pain before that...I am now using a walker and scheduled for knee replacement this August. I have one HFE gene, not two but still give blood because my numbers have indicated a phlebotomy every 6 mos or so...interesting hypothesis about oxalates...I think this topic is cutting edge - not many in the medical field have this line of thinking.
@@barbaradearman5438 it’s a brutal combination. I’ve looked into Hair Tissue Mineral Analysis to get my minerals balanced…and any toxic metals eliminated. Hard to not think minerals are at the root of all of this…
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?
Possibly another associated disease: Iron-Storage Protein Ferritin Is Upregulated in Endometriosis and Iron Overload Contributes to a Migratory Phenotype
🇬🇧36f. 2copies of cy28y I've had venesection so long the scar tissue is huge now. Am loosing hope, levels are dropping but the fatigue is unbearable at times so much that it's seriously affecting my mental health. I wish there was a cure for that part the physical pain is nothing compared to feeling exhausted 24/7.
I had two venasections and damn near decked the doctor who couldn't find a vein in FOUR ATTEMPTS! I did research, found ''iron chelation therapy'' using EDTA, and have lowered my blood iron reading from 1265 to 250, a figure I'll reduce yet. Watch Canadian HH videos - Australian doctors know just about zero of the topic.
@@marknovak8471 Hello Mark, are you still doing the edta protocol? What are the side effects?
@@tatianaferraz3496 Tatiana? Croatian name. Hello. You bet I still do EDTA. It's vastly more effective since it strips a certain amount of iron from your body's organs rather than just remove ONE EIGHTH of the available toxic blood supply. Not much but it's better than nothing and is, I believe, the reason I made in to 61.
Side effects? The worst is that it can kill you if you overdo it. EDTA strips ALL metals from your blood (and some from organs namely your colon). Some, like magnesium, are vital for proper muscle function and if you strip too much of that away then you'll start getting cramps - mine in my calves which can lock up like a vice if not caught in time (you pull your toes back as hard as you can and you do it fast). That's a serious warning - your heart is one muscle you don't want to have anything happening to through lack of magnesium. Continue use after the cramps appear and you're risking your life.
At that point I go off it for 4 or 5 days and eat lots of bananas - a miracle food which will replace those vital trace metals/elements which are vital to life in very small amounts. And eggs. The very best value from an egg comes from cracking it into your mouth and just swallowing it like a giant oyster if you can cope with it. Coffee also inhibits iron uptake and I drink a dozen cups a day. I also try to sweat like a horse as much as possible in summer (you have to wash your sweat off because the iron/lead/other metals contained within will reabsorb through your skin). If I were an American I might have IV EDTA therapy but again, it has dangers and is mostly used for emergency poisoning treatment. I might also have a script for deferoxamine which you should perhaps look up. Hepcidin is the name of the hormone the gene controls and you might look that up too.
There is no empirical data whatsoever to support the notion that venasections add so much as a second to your life. Look up ''hereditary haemochromotosis treatments.'' Third one to appear on list will be from people calling themselves 'Cochrane' who have a machine which strips iron from your blood and returns all other blood components back to your body. Read their conclusion. It's the first time any scientists have admitted there is no proof of the efficacy of venasections. Personally I thought it was the stupidest thing I'd ever heard in my whole life the moment I first heard it. God will not take pity on you because you are a virtuous blood donating person.
How did you figure out you had 2 copies of cy28y?
@@marknovak8471 always get the nurse....or go to blood bank...
Mam my transferrin saturation is 55% is really high than normal levels I have so many symptoms digestive issues metallic taste in mouth fatigue brain fog and I’m still 22 does donating blood help me get relief 🥲
Would you share an email to further questions ?
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?!!
Could you please share an email to further more questions ? Thank you so much for the presentation
Hello Heidi - We can't guarantee to answer all questions and we cannot provide medical advice, just general information. But you can send a question to feedback@ha.org.au and we will try to help.
What hospital you could be affiliated to consult specialist with hemochromatosis
Prince of wales Randwick Sydney?
I was diagnosed with a rare genotype mutation of Homozygous S65C Haemochromotosis in 2019,confirmed by a Hematologist in 2020,diagnosed with mild stage 1 liver disease with scarring and enlargement. Yet there is no mention of this mutation,is there a reason for it?
The s65C homozygous mutation is not generally associated with iron overload. By far most cases are associated with C282Y homozygous and sometimes with C282Y/H63D heterozygous. Suggest you discuss with haematologist whether the liver issues are associated with iron overload or may have some other cause.
@@HaemochromatosisAust Interesting that you say that and makes me feel like I don't have it yet both my sister and my son are carriers of the same genotype that I have. I saw a Hematologist for 12 months and was told because my ferritin was under 1000 no venesections could be preformed on me and also I am very susceptible to becoming anaemic. I have routine blood tests to check my iron,ferritin and liver enzymes every 3 months. You wouldn't think that this would be necessary if my doctor and Hematologist didn't believe that I have and carry it. In my opinion there needs to be more research done. Thank you for your reply.
ANY RESEARCH AND TREATMENT FOR Haemochromatosis and dementia...?
See this article and extract below: www.exeter.ac.uk/news/homepage/title_836881_en.html#:~:text=Haemochromatosis%20tends%20to%20be%20more,women%20with%20faulty%20haemochromatosis%20genes.
' Lead author Dr Janice Atkins, of the University of Exeter Medical School said: “We know that a build-up of iron in the brain is linked to dementia in people without haemochromatosis. Our study is the first to show that men with the mutations for haemochromatosis may have a substantially increased risk of dementia, although the numbers of people who develop dementia are still low. We now need more research to establish whether the genetic condition causes brain decline, particularly as haemochromatosis is easy to treat, and could be a route to preventing some dementia.” '
Important to note that it has not been established whether haemochromatosis actually causes dementia in a small number of cases or whether other factors may be at play..
@@HaemochromatosisAust many many thanks.
My thoughts are that the iron tends to lodge in the brain and may be somewhat difficult to remove..
Interesting comment regarding Transferrin saturation v serum Ferretin levels. I was diagnosed with HH in 2000 and have had regular venesections since then. My Ferretin levels have only ever gotten above 300 twice in that time. I've recorded my various blood markers and my saturation is always high (>80%). Despite my regular venesctions, I have developed Advanced OA (Stage 4) in my lower spine, hips and knees. I always thought that saturation should have been a key marker - well I now have validation of that belief!
I recommend HH and OA sufferers investigate the Root Cause Protocol (RCP) - increasing my Magnesium and taking other vitamins and minerals from natural sources (Nuts, seeds, grains, prunes, berries etc.) instead of synthetic supplements; and taking natural iron chelators (Black Tea with meals, Diatomaceous Earth, Rice Bran, Turmeric) has greatly improved my blood markers and reduced the joint pain immensely.
Tried Keto diet?
@@fionalyall7248 more natural chelators than this... IP6, curcumin extract with pepper, milk thistle, resveterol, quercetin, black seed oil and wheat sprouts are worth investigating as natural chelators or haemoglobin support. they seem to be strong anti oxidants as well.
@@lauchlanguddy1004 Care to share your insights?
@@fionalyall7248 have just found this out, myself!
I will go ahead with this question to give you doctors a laugh… but could a device be developed similar to a kidney dialysis machine that would allow blood to pass through a magnetic field that would sequester the iron from the blood ?
Not a silly question, They already have erythropheresis machines that take red blood cells from body, remove the iron and then give the red cells back to patient (not magnetic though). A similar process to the way Red Cross gets plasma from patients blood and give it back. But they are complex and expensive and only available in some hospitals. Normal venesection is cheaper, easier and just as effective.
I'm vegan and i got diagnosed with high iron today. I take supplements every other day and eat plant based milo and textured vegetable protein regularly. I am waiting to get a second test done to see if i have the genetic markers. Does anyone here have any advice for me? could i just have od'd on supplements?
Also, my dad has rheumatoid artheritis, but he says he had low iron last time he got tested?
Hi Twicken Very unlikely. If it is genetic, diet does not have a great deal of influence. The gene mutation affects the body's ability to regulate iron intake. You may be able to slow new uptake of iron (but not stop it altogether) through diet but you can't reduce stores of iron already in your body. Best to wait for test result and discuss with your doctor.
@@HaemochromatosisAust Thanks for the reply. I suspect I may have suffered this my whole life. I'm 27 now and have suffered from a number of symptoms, mainly chronic fatigue for as long as I can remember. I'm seeing my doctor again on Monday, because he didn't tell me exactly how high my iron was. If I don't have the genetic disorder, will I have to remove blood anyway? He said it could be up to a month to get tested under Medicare. (I'm in western Sydney)
@@TwickenStep If it is genetic, you were born with it but it does not normally begin to affect people until adulthood because children use large amounts of iron growing. If you do not have the genetic disorder, removing blood is unlikely to have any impact. For the purpose of haemochromatosis, the ferritin and transferrin saturation results on an 'iron studies' are the best markers of stored iron. The genetic test is the only way to know whether high ferritin is caused by genes or may have some other cause. High ferritin can be caused by many things. The genetic test should only take days. It is just a referral to a pathology service for a simple blood test. You need the genetic test for HFE gene. If you get all your results and are still not sure what is going on, give our Info Line 1300 019 028 a call.
Leting will bring your irin down .
You need to look at a corrective action program for each of your individual organs your brain your kidneys your heart .
Letting your blood will lower your iron levels it just takes longer for iron to get out your organs .
Dont drink alcohol.
No spinach etc .
Good luck 🙏
For patients with hemochromatosis presenting with low Hgb of 99 does this mean phlebotomy would not be indicated as management? If so oral chelation is started does this mean taking this forever?
The most important measure in determining treatment for someone with a proven C282Y mutation is ferritin. This can be an indirect measure of iron stored in your body. Haemocglobin relates to iron in your blood. Low haemocglobin can mean it may not be advisable to perform venesections at the time but this could change. AlsIf you have proven haemochromatosis, you should consult a doctor and have the appropriate tests. Chelation is very rarely used to treat haemochromatosis.
@@HaemochromatosisAust I had very high iron and low haemoglobin, just keep testing and pick your days. Also try and support Haemoglobin production. Reseach seems? to indicate borderline haemoglobin does not rule out taking blood, just be careful.?, must be a trade off between having a bad day ad removing iron ?I never had an issue on the day was always fine, but had two very strange reactions days or weeks after... twice.. just could not stand or walk simply out of nowhere like I had no oxygen, complete weakness. All GP and hospital tests said I was fine .
Who is the leading expert in the United States that is taking new patients? I can't find anyone who is an expert in the Metro Detroit, Michigan area
Jeff we are Australia based and don't have that sort of information. Perhaps some of US subscribers can help? As a general rule though, most doctors should be able to manage a routine case of haemochromatosis although knowledge on the subject does very a lot.
DR ADAMS IS KING
I have a question they want me to take iron pills but they say my liver produces to much blood
There is a lot wrong with that statement if iron pills are considered based on symptoms alone. It may be misinterpreted. Your liver store toxins, among them are excess iron. Your bone marrow produces blood cells. This process requires iron. There is a theory that your body may reduce stored iron by producing red blood cells. People who suffer from hemochromatosis will benefit from having secondary polycythemia because this allows them to have phlebotomy often. Being anemic means that you have to little blod. They give iron pills to people who are anemic. You are obviously not since you produce to much blood.You may have iron deficiency and still produce to much blood but that sounds like polycythemia vera. That is a rare hereditary condition. Based on the info above you should look into this. First you need to know if they want you on iron pills because of confirmed iron deficeincy. If that is the case you should investigate the cause of your high blood count. There are be other potential secondary causes for polycythemia.
GREETINGS...AT WHAT PERCENTAGE SHOULD THE .... """TRANSFERRIN LEVEL BE""... TO BE CONSIDERED OK..???????