Well, Chirley...I am glad you have access to specialists who can help explain what might be going on. I'm so glad you took such good notes. And yes, it was very informative.
The rationale given to you for doing a liver biopsy aligns with what family doctor/hematologist told us. Of course, if there was excess copper in the liver, that would suggest Wilson's.
On our side, we are still awaiting results from our visit to the MDS Specialist 3 weeks ago. Bruce called and talked to a supervisor there. The doctor's report is waiting signature.
Meanwhile as of bloodwork last Friday, Bruce's hgb was 9.7 and copper is now down in the low 50s.
Bruce's family doctor believes that ceruloplasmin numbers would improve if Bruce's liver was working better, suspects a wheat or gluten sensitivity, and wants Bruce to get off wheat/gluten for 6 months. I did read one article about the relationship between celiac disease and anemia/MDS mimicry.
If you have any more details on the trial for copper/iron, I would love to have it.
Hugs to you.