How low is too low? - Ferratin

I am taking Exjade and have reduced ferratin from 2400 down to 500.  My dosage has been lowered to 1000mg/day.

In speaking with my physician about a target level of ferratin, he said his goal is to bring my ferratin down to 20 and maintain at that level.  To me, this seems to be a bit extreme.  I do not transfuse.

Please share your thoughts on this issue.

Thanks,
Bill

A background whether you're a thal minor, major or other shall be great or how often you transfuse. 20 is too low I think, 500 for thal majors, at least is good enough.

Pratik:

I am Beta-Thal Intermediate.

I did realize after taking a several month break from chelation that my Ferritin level quickly rose.  I was disappointed, but I now understand I will have to chelate forever.

I am the only Beta-Thal w/hemochromatosis patient my physician has ever treated.  I have contemplated going to a research center (Oakland or Atlanta) for a more comprehensive care plan.

Thanks,
Bill

Bill,

It would be wise for you to be seen in Oakland as they have more information about iron overload and chelation than you will find anywhere else.  You want to keep your liver iron levels low in order to protect you from liver disease and possibly other organ problems due to iron overload.  I think that your doctor is wise in keeping your ifron levels low - perhaps Oakland can help you determine how low that level should be.  I personally think that 100 is a good level for an adult to aim for. 

Sharmin

Bill,

I concur with Sharmin. You have an unusual combination and you should be seen by the doctors that will know best how to handle your iron load. 20 seems very low, but in the context of iron overload due to hemochromatosis, there may be reason to aim this low. I would suggest that you verify this with Oakland.

Thank you for your kind replies and advice.

I was wondering your thoughts on Atlanta vs. Oakland.

I live in Arkansas, so Atlanta would be much closer, however, I am seeking the best possible treatment plan and education about my condition.

Your input will be highly appreciated.

Thank you,
Bill

No comparison. Oakland is the best by far.