Genetic testing came up with Heredit... - Haemochromatosis ...

Haemochromatosis Society UK

554 members134 posts

Genetic testing came up with Hereditary Hemochromatosis (HFE‑Related)

Pascha1 profile image
2 Replies

I just had genetic testing done and I had two copies of the genetic variants discovered on Hereditary Hemochromatosis (HFE‑Related)

can anyone tell mewhat this means and what I should be aware of and look out for please ? or should i not worry about it?

Written by
Pascha1 profile image
Pascha1
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Madlegs1 profile image
Madlegs1

First- get a blood panel- including serum feritin. It should be around 75-100.

If its higher than 400- then give blood. If you are in good health - then no worries, but keep an eye on the ferritin. Test every year.

The consequences of high ferritin are potentially deadly.

However- it is quite possible you have no issues at all.

Good luck.

There is a good site- Iron Disorders Institute- which has good charts.

Pascha1 profile image
Pascha1 in reply to Madlegs1

Thank you Madlegs1

, My ferritin was low at 49 so do not think I have it , but will keep an eye on it yearly thanks for help :) x

You may also like...

Private genetic test for Haemochromatosis

wanted to find out any recommendations for private genetic testing for Haemochromatosis please? My...

Genetic test positive

retest in six month and do genetic testing but wasn’t concerned. My results just came in and it...

Possible HH and panicking a bit about damage to joints and other organs

HH and had blood taken today for genetic testing. My worry is that given how much pain I have had...

Diagnosed as Compound Haemochromatosis

some blood tests, some how the ferritin had gone down but still over 300. Nothing more was done or...

High level of Ferritin after Venesection?

the venesection. Has anyone else had this as I've never in 10yrs of venesection had a level of...