Told Im a carrier just yesterday H63D, I’m pleased I managed to find out why I have these symptoms ,all my own research I might add. Let’s get some PROPER research done scientists please. 🙏🏻I have Pernicious aneamia and now GH. Thank you for your Video. Very helpful
I am a carrier of h63d, I have hemochromatosis and iron overload. My mother and my grandmother too. There are still doctors who tell me that it cannot be. 1200 ferritin and 50% saturation.
My Husband just got diagnosed today as a carrier. Very interesting. Thank you for posting this video. His Doctor said he wasn’t going to affected, looks like that isn’t entirely true.
Hello, I have also been told I am a carrier (I have inherited 1 faulty mutation of C282Y in the HFE gene) I am 52 yr old female. I was tested because my 79 yr old father was recently diagnosed with haemochromatosis with a ferritin level of 700. His liver function is normal and he is currently having blood removed on a fortnightly basis. My ferritin levels and all other blood tests are normal. However, as a precaution I will have my iron and ferritin levels checked once every 3 years. I did find information online that suggested 5% of carriers may develop symptoms of haemochromatosis if they also have a faulty mutation of H63D (in addition to one mutation of C282Y) Symptoms can be so general and linked to so many other conditions. My dads condition was discovered purely by chance. It is worth noting that some people with haemochromatosis never develop symptoms (or only mild ones) so try not to worry if you are a carrier. Best course of action is to request ferritin and iron level checks every 3 years or so (my GP says this is straightforward and won't be a problem)
isn’t entirely true , near 95% of true maybe. The cases that I know of have the peculiarity that the disease usually manifests itself as carriers when they already have ancestors who have manifested the disease.
Had a genetic test done. Im a carrier of the C282Y gene (only one). My Iron Saturation was only 16%. Blood iron levels were normal, and TIBC was high, and Ferritin was high. My numbers have normalized since then. I eat a lot of red meat and I do take an occasional iron supplement. I do feel better when I take iron. But I also feel better when I give blood. What your opinion?
When my daughter was 3 she was diagnosed with cystic fibrosis. Husband and I are carriers. We were told for years carriers don’t have symptoms but we knew that was wrong as hubby and I along with many other parents had symptoms all our lives. I now found out I am a carrier of a hemochromatosis gene and my ferritin level was high. If I am just a carrier why would my level be high? From what I learned about the genes in cystic fibrosis, I believe being a carrier in any disease you can present with symptoms. If you have a car that runs on 2 spark plugs but one is not working your car may start but it gonna have symptoms of sputtering, the timing seems off, etc. same with genes…that can’t work well if one isn’t working.
Scientists do not know how a heterozygous defect in genes can determine the expression of a disease, sometimes yes and sometimes not. For the same reason that there are homozygotes who do not develop the disease. We are in a very early phase of understanding genetic diseases.
I’m a carrier but have a history of anemia, low hemoglobin, and just had a bad episode after a blood donation (either a platelet or plasma donation, first time i had done that), where my BP dropped about 30 minutes after the end of the donation, and I had never had that happen before (regular donor). I am 54 and in menopause so no more periods to worry about. Is there another gene I should be looking into that might be a factor in iron issues affecting my blood pressure? I often have BP with systolic in the low 90s.
The blood is thrown away most of time if your ferritin level is high. But if you have achieved maintenance then you can donate you blood in the UK at least and they'll use it. They still throw away the blood, though in Venesections.
Hi I recently found out that I am a C287Y carrier and that I have a high ferritin count, however I would like to make contact with you to chat about genetics. I breed designer ball pythons and used combinations of genes to create new mutations, so through this I found several genes that are allelic that creates similar genetic outcomes in combination with other genes, there are also several examples of heterogeneous genes that would create markers of the visual homogeneous mutation. The relevance in the work you are doing could be to identify gene combinations that reduce / increase iron loading in the case of carriers or modeling the primary and secondary onset of iron loading due to a partial expression of the homogenous mutation linked with a secondary inflammation response.
Im a carrier of h63d gene. I have many symptoms including RA and recently type 2 diabetes, the fatigue and lower back muscle spasms impede my life greatly. My gp is insisting im only a carrier even though im also storing iron. This worries me greatly that no one listens to how im feeling and just going by outdated information. Am i to develop cancer as a result before they take note!.
you are double heterozygous more likely to develop the disease. My honest opinion is that scientists are only beginning to understand how the disease manifests itself. Some doctors will tell you that double heterozygotes do not develop the disease or only mildly, all based on statistical studies only.
Carriers can overload but with only a 1 to 2% chance. But the number of carriers is so much greater the number of overloading carriers is nearly as large as the number of homozygous suffers. 44% of overload sufferers are carriers.
I am a carrier, I have liver overload with damage and I know others like me. There are still doctors who diagnose you as hemochromatosis secondary to anything.
Told Im a carrier just yesterday H63D, I’m pleased I managed to find out why I have these symptoms ,all my own research I might add.
Let’s get some PROPER research done scientists please. 🙏🏻I have Pernicious aneamia and now GH.
Thank you for your Video. Very helpful
I am a carrier of h63d, I have hemochromatosis and iron overload. My mother and my grandmother too. There are still doctors who tell me that it cannot be. 1200 ferritin and 50% saturation.
In the three years since this was made I think they’ve now identified about 6 more genes that can create iron overload…
My Husband just got diagnosed today as a carrier. Very interesting. Thank you for posting this video. His Doctor said he wasn’t going to affected, looks like that isn’t entirely true.
He has nothing to worry about if he only has one gene fault.
Hello, I have also been told I am a carrier (I have inherited 1 faulty mutation of C282Y in the HFE gene) I am 52 yr old female. I was tested because my 79 yr old father was recently diagnosed with haemochromatosis with a ferritin level of 700. His liver function is normal and he is currently having blood removed on a fortnightly basis. My ferritin levels and all other blood tests are normal. However, as a precaution I will have my iron and ferritin levels checked once every 3 years. I did find information online that suggested 5% of carriers may develop symptoms of haemochromatosis if they also have a faulty mutation of H63D (in addition to one mutation of C282Y)
Symptoms can be so general and linked to so many other conditions. My dads condition was discovered purely by chance. It is worth noting that some people with haemochromatosis never develop symptoms (or only mild ones) so try not to worry if you are a carrier. Best course of action is to request ferritin and iron level checks every 3 years or so (my GP says this is straightforward and won't be a problem)
isn’t entirely true , near 95% of true maybe. The cases that I know of have the peculiarity that the disease usually manifests itself as carriers when they already have ancestors who have manifested the disease.
Had a genetic test done. Im a carrier of the C282Y gene (only one). My Iron Saturation was only 16%. Blood iron levels were normal, and TIBC was high, and Ferritin was high. My numbers have normalized since then. I eat a lot of red meat and I do take an occasional iron supplement. I do feel better when I take iron. But I also feel better when I give blood. What your opinion?
Following
When my daughter was 3 she was diagnosed with cystic fibrosis. Husband and I are carriers. We were told for years carriers don’t have symptoms but we knew that was wrong as hubby and I along with many other parents had symptoms all our lives. I now found out I am a carrier of a hemochromatosis gene and my ferritin level was high. If I am just a carrier why would my level be high? From what I learned about the genes in cystic fibrosis, I believe being a carrier in any disease you can present with symptoms. If you have a car that runs on 2 spark plugs but one is not working your car may start but it gonna have symptoms of sputtering, the timing seems off, etc. same with genes…that can’t work well if one isn’t working.
Scientists do not know how a heterozygous defect in genes can determine the expression of a disease, sometimes yes and sometimes not. For the same reason that there are homozygotes who do not develop the disease. We are in a very early phase of understanding genetic diseases.
Just diagnosed as a carrier too and getting iron overloading.
According to many doctors we do not exist
Carrier
Iron reading 90 only symptoms until I read about possible symptoms is my knuckles can be stiff and sore
I’m a carrier but have a history of anemia, low hemoglobin, and just had a bad episode after a blood donation (either a platelet or plasma donation, first time i had done that), where my BP dropped about 30 minutes after the end of the donation, and I had never had that happen before (regular donor). I am 54 and in menopause so no more periods to worry about. Is there another gene I should be looking into that might be a factor in iron issues affecting my blood pressure? I often have BP with systolic in the low 90s.
I have C287Y carrier the problem is here in Australia is I cannot give blood the blood I give thru venesection is thrown in the bin.
The blood is thrown away most of time if your ferritin level is high. But if you have achieved maintenance then you can donate you blood in the UK at least and they'll use it. They still throw away the blood, though in Venesections.
Hi I recently found out that I am a C287Y carrier and that I have a high ferritin count, however I would like to make contact with you to chat about genetics. I breed designer ball pythons and used combinations of genes to create new mutations, so through this I found several genes that are allelic that creates similar genetic outcomes in combination with other genes, there are also several examples of heterogeneous genes that would create markers of the visual homogeneous mutation. The relevance in the work you are doing could be to identify gene combinations that reduce / increase iron loading in the case of carriers or modeling the primary and secondary onset of iron loading due to a partial expression of the homogenous mutation linked with a secondary inflammation response.
Im a carrier of h63d gene. I have many symptoms including RA and recently type 2 diabetes, the fatigue and lower back muscle spasms impede my life greatly. My gp is insisting im only a carrier even though im also storing iron. This worries me greatly that no one listens to how im feeling and just going by outdated information. Am i to develop cancer as a result before they take note!.
What if you carry one mutation of 2 genes. Like c282y and h63d?
you are double heterozygous more likely to develop the disease. My honest opinion is that scientists are only beginning to understand how the disease manifests itself. Some doctors will tell you that double heterozygotes do not develop the disease or only mildly, all based on statistical studies only.
I was just diagnosed as a loading carrier
Carriers can overload but with only a 1 to 2% chance. But the number of carriers is so much greater the number of overloading carriers is nearly as large as the number of homozygous suffers. 44% of overload sufferers are carriers.
@@aginginflammationandironov6371 In my case grandmother, mother and me. With liver overload, only carriers and obviously inherited in a recessive way.
I’m a carrier and I’ve had iron overload many times
I am a carrier, I have liver overload with damage and I know others like me. There are still doctors who diagnose you as hemochromatosis secondary to anything.