Recent Developments in Haemochromatosis

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.

[accountabilityisadmirable]

🇬🇧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.

[judithpoulin]

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?

[Masspeace]

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 🥲

[KKing]

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.

[sw]

Possibly another associated disease: Iron-Storage Protein Ferritin Is Upregulated in Endometriosis and Iron Overload Contributes to a Migratory Phenotype

[ChristineThompson-jb]

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?

[fionalyall]

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!

[heiditovar]

Could you please share an email to further more questions ? Thank you so much for the presentation

[lauchlanguddy]

ANY RESEARCH AND TREATMENT FOR Haemochromatosis and dementia...?

[Thornlessrose]

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?

[heiditovar]

Would you share an email to further questions ?

[TwickenStep]

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?

[princessvelasco]

What hospital you could be affiliated to consult specialist with hemochromatosis

[justincase]

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 ?

[princessvelasco]

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?

[jeffw]

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

[tayloranderson]

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?!!

[beckylangley]

I have a question they want me to take iron pills but they say my liver produces to much blood

[albertagoforth]

C282y hetro normal alleles
Hemochromatosis
Carrier
Nonsense
Did you forget it and just go on with your life or
Should you be concerned

[linlivingstonjnr]

GREETINGS...AT WHAT PERCENTAGE SHOULD THE .... """TRANSFERRIN LEVEL BE""... TO BE CONSIDERED