[Marlene]

I can't speak to the red cell aplasia but there are one two on the site who will probably see this who can. We all know how scary these bone marrow diseases are and it's critical to have a doctor who's familiar in treating them. It's good you have gone for a second opinion.

In the meantime, did you find out if you have hemochromatosis? High iron is linked to Syndrome X, a metabolic syndrome which includes diabetes as one of the conditions. High iron can and will impact how well your bone marrow produces blood. How high is your iron and have they discussed therapy to reduce it?

High iron will also create imbalances in copper and zinc so hopefully they checked those.

We found that the more iron John got rid of the better he felt and was able to heal. His iron overload was due to transfusion.

Regarding your red cell transfusions...a good rule of thumb is to set a red cell transfusion goal that is high enough that you're not passing out or having symptoms. John's HGB threshold was 8.3. At that level, they would transfuse two units which would bring his HGB up to around 10. If they are only giving you two units when your HGB is at 6, that is probably not high enough for you. When John was first diagnosed his HGB was at 5.5. They gave him 5 units of red cells to get him up to a decent level. From then on, he was transfused when ever his HGB got down to 8.

Something that pretty much every finds helpful is get copies of all your labs so you see the results for yourself and can track the trends. You would be surprised at how many time there are abnormal results that get missed or overlooked.

There key nutrients important to blood production. They are Vitamin D3, K2, C, B12, folate, B6, zinc, iron and copper. You should have been checked for all of those. A low-normal B12 is not OK and needs to be addressed.

Hope you find this useful.

Marlene