Cardiac T2

My daughter, Wei, is seven and just had her first heart ferriscan.  We were told she had a "surprising" amount of iron in her heart.  Which didn't surprise me because it is the same thing we were told when her Liver Iron Concentration was high.  Her T2 was 9.  I can not find much telling me what "normal" might be.  Anyone know?

When she was on ExJade her iron levels rose.  Sub Q Desferal took her iron liver number from 35.5 to 18.4 in 6 months. (yay!) it then dropped another 2 points in the next six months.  The doctors at Lurie in Chicago want her to increase her Desferal and start on Ferriprox.  I am so thankful for the Ferriscan and the chelation that is available.  Her MRIs and echos have always been good so I am thankful we have caught this before damage was done. 

Dr Thompson also said that they are having lots of success with Gene Therapy in France and there is hope that an adult study will begin in the US soon (relative term, I guess)

Lori, We's lucky mom

Hi Lori, glad you caught it sooner than later. I have a question...why did you stop Exjade? My daughter is almost 3 years old and has been on exjade for 6 months. Her initial count was 2600 and 6 months later is rose a bit to 2700. We were told this is normal and that you cant get a true reading for a year. Was this similar to your experiences? Thanks

Hi Lori,

T2 is best kept above 20 for thal majors for normalcy. Anything below 20 or 18 should require aggressive chelation.

Yes defriprone is very successful in removing heart iron but only if it could be adjusted. Bone pain is much common issue with it.

T2 for normal people is around 40+ and even 50 for some, but for TMs, 20 and above is a good limit.

Best,

-P.

If she can tolerate Ferriprox, the combination of desferal and Ferriprox is the best therapy for high iron load. Ferriprox is especially useful for lowering iron in the heart. A T2* score of 9 does require more aggressive chelation, as Dr Thompson is recommending.

Table 3. Threshold MRI T2* levels (ms)
Normal   Mild iron overload   Moderate iron overload   Severe iron overload
> 20                     14-20                8-14               < 8