Well, I made it to Guy's and St Thomas's on Monday for an MRI ferriscan to see what iron overload has done to my body. After 17 attempts by various people including the canulation team they were unable to get a canular into me so I eventually had an incomplete scan. I do not know the results yet.
I was lucky enough to be seen by Prof Claire Harrison at Guy's and she has asked for more genomic tests as well as other blood tests. At least they were able to take blood out through my portacath which was much more of a success than trying to get dye into me!! My lousy veins are why I had the porta cath in the first place but unfortunately they are not suitable for injecting dye.
She will pass on the results through my Consultant while copying me in. I'll let you know when I get them.
Best wishes to you all, Jan x