Thanks Hopeful, I appreciate your kind words.
I saw the haematologist today and got some more answers. Apparently my bowel isn't capable of absorbing a lot of essential nutrients and therefore my liver can't produce the metal transport proteins that I need (also explains my bouts of severe hypoglycaemia)...hence the constant low metal levels and the metals I DO have can't be utilised properly. He mentioned exchanging the feeding tube for a trial of TPN for three months. Problem is the Surgeon, Physician, Neurologist and Haematologist all have to come together on this change in treatment.
I had to have another 2 units of blood today (disappointing) and my WCC was a total of 2.0 (still too low but a lot better), platelets were normal.
It's a slow process getting answers, let alone treatments but I think we are finally heading in the right direction.
Carol
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