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Hi,
I didn't start chelation until my ferritin was over 5000 although the doctor originally told me he would start treating at 2000.
I started Exjade but became very ill after a couple of weeks.
Since then I've become transfusion free and have had some venesections and together with a natural decrease, the level is just under 1000. Unfortunately my liver has been affected and the function isn't improving even with the lower ferritin.
Hope this helps.
Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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