Does both parents have to have Haemochromatosis
Posted , 5 users are following.
My mum has it and I have it but my dad doesnt . The doctor said thats ok but everything I read says both parents have to have it
1 like, 11 replies
Posted , 5 users are following.
My mum has it and I have it but my dad doesnt . The doctor said thats ok but everything I read says both parents have to have it
1 like, 11 replies
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stevetrov josie77
Posted
Someone is unlikely to know they are a carrier because they will have no sympotms and the only way you would know is if your father had the genetic test.
josie77 stevetrov
Posted
lynnsk1 josie77
Posted
Hi josie77, I'm told I have the 2 mutants, one from each parent. My dad has passed but we're waiting to get results from my mum. Nobody had ever been screened or not that we ever knew until I was diagnosed 2 months ago. My grown up children are being tested as we speak so awaiting their results. As we are my brothers. I understand that they could have it or be carriers but if my husband doesn't have it or is a carrier then they can be any of the above or void!! When I get results back I will try to make more absolutely sense of it
sheryl37154 lynnsk1
Posted
sheryl37154 josie77
Posted
There is ferroportin haemochromatosis which occurs with one gene but it requires a different genetic test.
Then as you found, some drs tell their patients they are fine when they are carriers (which they are) but that does not tell the genetic story. That is why it is important to ask for a copy of the genetic results.
josie77 sheryl37154
Posted
sheryl37154 josie77
Posted
It is better advice rather than a dr pretending to know about it and giving wrong advice. We have to educate ourselves in ensure we get appropriate treatment. Look for official reports - medical research, and your country's haemocromatosis association. Although some of them stick to some myths too.
lynnsk1 josie77
Posted
I still do not have either of my sons results due to Doctors saying all feritin levels, bloods have come back fine so what do you do except tell the doctors to apologise for their mistake and ask for a genetic screening to be done. I have had , like yourself to do all my own research as they seem to know very little, even the consultants need a rocket up their back side!!
sheryl37154 lynnsk1
Posted
Our haemochromatosis association in Australia provides a letter not only to pass on to relatives about haemochromatosis but instructions for drs to do a genetic test as first degree relatives are entitled to a rebateable genetic test.
Check with your country's association to see if they have similar, or even phone them for their advice on this.
I have no idea why they are "freezing the blood until such times they need to evaluate". I have never heard of that.
You have some serious health issues. Your genetic test results confirm that you have haemochromatosis. What was your ferritin and TS% results?
It is criminal when diagnosis is delayed and we end up with serious health issues. My gp took 9 years to diagnose despite my having serious symptoms (no google back then) as 'I did not look like I had it'. Not till my hips broke up from oesto-necrosis was it diagnosed. I ended up with so many problems I had to give up work early.
shirley60201 josie77
Posted
There is a difference between heredity hemochrotosis and being a carrier of hemochromatosis. So one could be a carrier,that they just end up with it later on in life men more then women.
Herederity is in the life line .
lynnsk1 josie77
Posted