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Hemochromatosis
Ferritin levels


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#1 i-candi

Posted 17 February 2013 - 07:29 PM

DS has hemochromatosis and as he has recently been sick and needed a few blood tests I asked them to test his iron levels. When he was diagnosed as a young child I was told we don't have to worry or test until he is an adult.

I was surprised to find his ferritin levels at 250. The GP said we only need to worry at 300. DS is only 13 so I'm surprised it is high at his age.

Is this normal? what are your levels like? anyone here have kids with hemochromatosis?

Some values I've seen on the net have been much lower than 300 acceptable levels for a child. I've never really given too much thought to this disease as I thought he wouldn't be affected until he is an adult.

#2 ozsuikerbos

Posted 17 February 2013 - 07:54 PM

Hi!

I was diagnosed with it in my twenties. I then went to an awesome Haematologist in Perth when I fell pregnant to get some thorough testing done for amongst other things, the haemochromatosis. Genetic testing showed I was doubly heterzygous for the C282Y and H63D genes (basically I inherited one of these genes from each of my parents and they are two different types of the disorder).

My last test confirmed an abnormality with raised transferrin saturation level but the ferritin level was within normal range at 119. Because I don't have two of the same genes my iron is mostly manageable. As an adult it it went up to an abnormal level when I was on the birth control pill (because you bleed less) and that was when it got picked up.

I would recommend seeing a specialist because it will really give you a good understanding of the disorder and what you can expect. I found it fascinating actually! For me I know now to avoid certain foods which I never really gave a thought about, because they have heaps of added iron. Avoid multivitamins as well (I used to take these before I was diagnosed and MAN did I feel better after ditching them!). I get my blood checked every 6 - 8 months but have never has to take action of donating blood to lower it.

Hope that helps in some way!


#3 StopTheGoats

Posted 17 February 2013 - 08:10 PM

It runs in my family. The men give blood regularly and it keeps their levels in check.

#4 i-candi

Posted 17 February 2013 - 08:11 PM

Thanks for that, from memory DS has the C282Y - he has the more favourable mutation of the disease.

Just before DS was diagnosed (he was tested because DH was a carrier and they requested that we get DS tested) he was actually anaemic and he was put on iron supplements.

I now know that he can't have multivitamins and must be mindful of his diet.

The GP we just saw said to test again in 6 months.

#5 unicorn

Posted 17 February 2013 - 08:32 PM

I was diagnosed recently, currently my level, while still higher than normal, as within acceptable levels, so for now I only need to go in every 6 months for testing.
They suggested I get the children's father to test to see if he carries either of the genes, but said otherwise get them tested when they are adults.

#6 i-candi

Posted 17 February 2013 - 09:12 PM

QUOTE (Flibbertigibberty @ 17/02/2013, 09:32 PM) <{POST_SNAPBACK}>
I was diagnosed recently, currently my level, while still higher than normal, as within acceptable levels, so for now I only need to go in every 6 months for testing.
They suggested I get the children's father to test to see if he carries either of the genes, but said otherwise get them tested when they are adults.



Testing when adults is what worries me, this is what I thought as well but DS who is only 13 is already testing high and damage could be started early. When DS was an infant they told me not to test DD until she is older as she will get her period and let blood that way so no need to worry, they told me males are more of a worry.

My mum is having issues with her liver so I told her to get a DNA blood test for hemochromatosis but her GP refused  ohmy.gif   I told mum to find another GP but she didn't care. I told her that it runs in families but she again didn't care. grrrrrr If DH is a carrier I think there must be another carrier (me) so therefore it is possible it is in my mothers blood line. I must get a test to see what I have  cool.gif  DD doesn't have hemochromatosis.

#7 Isolabella

Posted 17 February 2013 - 09:18 PM

On the other end of the scale my grandfather had it. He died 3 days shy of his 90th birthday. Two of my uncles also have it.



#8 i-candi

Posted 17 February 2013 - 09:23 PM

QUOTE (lsolaBella @ 17/02/2013, 10:18 PM) <{POST_SNAPBACK}>
On the other end of the scale my grandfather had it. He died 3 days shy of his 90th birthday. Two of my uncles also have it.



As the GP said if you know you have it then all is good, it's the people who don't know that have it who have a lot of problems with their health. You have it, you let blood all is good. My issues is my DS seems too young to do this and the fact that he has the genetic disease that is more favourable. Thinking about it he really isn't a meat eating lover (DD loves her meat), maybe it's a survival thing not to like meat. He also had quite bad airborne grass allergies and he hates to go outside....

Edited by i-candi, 17 February 2013 - 09:23 PM.


#9 jodi

Posted 17 February 2013 - 09:26 PM

I was diagnosed in my late 30's, and only after my brother was diagnosed and told me to get tested... the anomaly with me is, my ferritin levels have always been low... low enough to require iron tablets (that make me sick, so I don't bother)  wacko.gif

I get tested every six months to keep an eye on it.




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