Confused mother of 11 year old girl with HH
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My daughter has one gene mutation for HH therefore should only be a carrier (that's what the doctors told me) however she is presenting all the symptoms and even though she has been receiving the monthly venesections her last blood tests showed her levels had raised from 114 to 184 in the space of 4 weeks when they have been coming down slowly but surely. We are waiting for more dna test results back as we have been referred to two professors in Cambridge but in the meantime has anybody been in this situation before?
3 likes, 24 replies
jmcg2014 Griffalo
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Griffalo jmcg2014
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aB22 jmcg2014
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Griffalo aB22
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sheryl37154 Griffalo
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I hope they find a treatable answer very soon.
Griffalo sheryl37154
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Thank you. It's not nice at all bless her. No not that I'm aware of. Does this sound symptomatic of Gilbert's syndrome? I can't say I've ever heard of it. (Typing it into Google as we speak)
sheryl37154 Griffalo
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Diet, as in the elimination of foods that make them worse, seems to be the only key for them.
But Juv HH is very serious, and I don't doubt that even one Juv HH gene can cause a lot of problems.
Let us know how the consultations and results go.
aB22 Griffalo
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Griffalo aB22
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Griffalo hemopatient123
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jmcg2014 Griffalo
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Griffalo jmcg2014
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sarah08070 Griffalo
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no cooking on or in cast iron cookware
eating a boiled egg at least once a day - a simple boiled egg can reduce iron absorption by 28%
cut out any vitamin supplements
cut out fruit juice
cut out anything that had extremely high iron content mussels, black pudding, marmite, cornflakes, pate, dark chocolate or anything fortified in iron
increased my calcium content
Hope this helps
eat only meat or fish once a day
2 blood donations
I am glad to say my levels have come down to 297 - it has been a long haul but I certainly can feel the difference
Griffalo sarah08070
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No it's not nice at all bless her. You say you only have one gene mutation. Apart from the raised ferretin levels, we're you getting any other symptoms?
She has a healthy diet anyway but we've cut out and added in the necessary items. I'll try the boiled egg though, thanks for the advice.
Her venesections were working great until her last test, I know it could be a one off but it's still worrying.
I know there is another gene mutation involved which hopefully will explain her symptoms it's just a waiting game.
aB22 Griffalo
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