Solo me pregunto qué tan rápido desaparecen los síntomas. Mi único síntoma es la fatiga, pero realmente está interfiriendo con mi vida. Tengo 3 hijos pequeños y estoy agotado. Los niveles están solo en 265, así que no puedo imaginar cómo debe sentirse alguien con niveles en los 1000. Desafortunadamente, estoy en la lista de espera del hospital.
The only symptoms that improves for me was my liver enzymes normalized for the first time in 20 years and my skin no longer was 'tan' year-round without sun exposure. My joint pain and energy levels have not been affected by all the phlebotomies I have had over the last three years.
Hi Gina
Personally I actually feel worse since starting phlebotomy,
I'm tired all the time, either lightheaded of really dizzy,
I am 66 but very active, I was going to the gym 4 times a week but
I have had to stop going not having the energy, I am going for my 6th
Phlebotomy tomorrow, then seeing the hemotologist 19.8.16 hopefully
I will have dropped by around 500,with just over 500 more to get to a
reasonable level, I am hoping I will be able to have fortnightly as opposed
To weekly, but it will take as long as it takes,it has to be done.
I hope you start your treatment soon and feel better
Cheers Philx
Gracias por tu respuesta, Phil. Espero que, como mis niveles no son demasiado altos, pueda mejorar mi cansancio. Nerviosa ante la idea, ya que nunca he donado sangre, así que no sé qué esperar, pero espero que me llamen pronto. Y yo también... no he podido hacer ejercicio, estoy tan cansada. Lo último que quiero hacer es salir a correr. Pero el aumento de peso me está volviendo loca. Asombroso cómo afecta las cosas. Gracias de nuevo, Phil.
Gina
Gracias por tu respuesta, Maureen. Realmente espero que ayude con el cansancio. Pronto voy a trabajar a tiempo parcial, así que espero que eso ayude. ¿Con qué frecuencia te haces flebotomías ahora?
Gina
Hi Gina
Please once you get your appointment for your first venesection
Don't worry you have had blood tests done before it's not much difference
To that,they find a suitable vein a sharp scratch, then you just lie
There for how ever long it takes,the more you worry it will push your
Blood pressure up ,and this may mean you have to have a needle in
The other arm to give you fluids,it was Terry's first time last week and
He was exactly like you very apprehensive, I told him to take some relaxing
Music with him,he cannot wait to go back for his next one.
You have to focus on the fact this is for the greater good,to catch it
Before it starts to damage organs ,when treatment would become more
Severe,so I would rather put up with less invasive treatment.
Best of luck
Cheers Philx(just preparing for number 6 at 10.30 am)
Gracias Phil
tienes razón y debe hacerse, así que no hay punto en preocuparse. Estaba leyendo el post de Terry y es bueno escuchar. ¡Mucha suerte Phil!
Gina
H
Hi irene
A woman of few words?????
Hi
Hola Phil
Solo una pregunta rápida que quizás sepas la respuesta. Como tengo hemocromatosis, ¿eso significa que uno de mis padres lo tiene o que son portadores? Mi padre ha sido examinado y es portador, pero mi madre aún no se ha hecho la prueba, ambos tienen alrededor de 60 años. Gracias Phil
Ginax
Hi Gina
The only way to find out is to have a genetic test,I am awaiting the
Results of my genetic test???but the are 99.9% certain mine is inherited
From either my parents (both now dead) or futher back in my family
My 2 sisters have had ferritin tests but they are the opposite anaemic
My other sister has not been tested.
Get this test done(but I think I read somewhere one off your tests have to be quite high before they will do the test)
,and advise immediate family to have a ferritin test
Of mike might be able to help more.or phone the hemochromatosis society.
Cheers philx
My father has he same H63d gene and our daughter inherited two H6ed genes from my husband and me. Both my paternal grandparents had both and I wonder if my great grandfather died of cardiomyopathy as a result. My huband's father was likely a carrier and his g-grandpa was likely a carrier. All of them were of Irish ancestry and Hemochromatosis is called 'the Celtic Curse."
Hola Maureen
Sí, el resultado de mi papá salió bien. Él es portador pero no lo tiene. Así que me pregunto si es de donde lo heredé o si debo hacer que mi mamá se haga la prueba de todos modos por si acaso. Todos somos 100% irlandeses también 😉 gracias por tu respuesta
Gina
Gracias Phil. Aprecio la información.
Gina
If you know you have two genes you got one from your dad and one from your mom.