Japan: I have been living in Japan and... - Haemochromatosis ...

Haemochromatosis Society UK

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Japan

Zantsuko profile image
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I have been living in Japan and found out that my mother is a carrier of the hemochromatosis gene and she told me that I should go get it checked out. Honestly, I got my blood checked and my ferritin levels were the high end of normal and my knees and body and hands are achy. I get black circles under my eyes almost instantly when I am tired and fed up with feeling this way so I stated donating blood and could almost instantly feel better. Since Japan has limits of when I can donate blood it makes it hard to do this regularly and since the doctors said my iron levels were fine eventhough they were much higher than normal, they won't look into the gentic test. Not sure where I could even go in Japan as every doctor says that it's very rare to even have hemochromatosis in Japan. I would love some help on this. Please let me know what you all think.

Thank you

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Zantsuko profile image
Zantsuko
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TaraRae profile image
TaraRae

Hi Zantsuko,

This is your Mother. I hope someone answers this. Your ferritin were way over the high end of normal, they were 3-4x's higher than the high end of normal. I love you. I hope someone knows some Dr in Japan or some test that will help you.

TaraRae profile image
TaraRae in reply to TaraRae

Zan, go back to my original post. The person that gave me info gave me a few links to different places. One is the hemochromatosis society. That's where the ONE DR IN TOKYO'S name will be found. I love you. Hope you got to donate this week. Call me. Xoxo love you my golden Son!

radd profile image
radd

Zantsuko,

Welcome to our forum.

In the U.K. a haemochromotosis diagnosis is confirmed only through genetic testing.

Phlebotomy would never be offered without a confirmed diagnosis because ferritin can be elevated for other reasons and it is possible to have high ferritin with iron deficiency.

Ferritin is a protein that stores iron, releasing it when your body needs iron and binding to transferrin, which transports iron to where new red blood cells are made.

To get a clearer picture of your iron levels you need a full iron panel that would include iron serum, total iron binding capacity (TIBC), transferrin saturation and ferritin.

Post results complete with ranges (numbers in brackets) for members to comment.

Further info maybe found in the link below

.

haemochromatosis.org.uk

Zantsuko profile image
Zantsuko in reply to radd

Thank you for all your advice. I have been taking it all into consideration while I have been donating and been staying away from high iron foods.

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