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After Meryln informed me that it is worth checking my:
Serum Iron
Total Iron Binding Capacity

After these results i will work out my Iron Saturation % to see if i have an iron overload,as a result of CCSVI
- which would make me more confident travelling to Poland for CCSVI testing- as if i have iron overload i will know i have CCSVI?

But if i have the iron overload, what is the most efficient form of treatment?

is it just Plebotomy/bleeding?
If so, is there any rules/protocol on how much blood to drain & how often?

If i have the iron overload, what can i expect from Plebotomy/bleeding?
Do symptoms like mobility improve?

thank you
Adam

AdamT-I think the first step would be just to test your iron metabolism, see what the result is, then proceed... you have to realize this is not even on a doctor's radar yet, this is a discovery recently made by a bunch of us questioning iron metabolism. We do not know at this point what the relationship is between these results and CCSVI. It is just that so many of us are finding abnormal iron metabolism, we are trying to sort out what it all means. We do need some doctors to get on board here... hemochromatosis is usually treated through phlebotomy. But until you know if you have such condition, it is all speculation.

Merlyn wrote:AdamT-I think the first step would be just to test your iron metabolism, see what the result is, then proceed... you have to realize this is not even on a doctor's radar yet, this is a discovery recently made by a bunch of us questioning iron metabolism. We do not know at this point what the relationship is between these results and CCSVI. It is just that so many of us are finding abnormal iron metabolism, we are trying to sort out what it all means. We do need some doctors to get on board here... hemochromatosis is usually treated through phlebotomy. But until you know if you have such condition, it is all speculation.

Hi Merlyn

When you say Iron Matobolism would that just be:
Iron Serum
Total Iron Binding Capacity

If i have a Iron overload, would this be a possible indicator that i have CCSVI ? even if its a slight indication

Hi . Believe it might be more of an indication of Hereditary Hemochromatosis / iron overload for another reason possibly ?

AdamT-maybe I did not phrase that very well. Checking the iron metabolism will tell you if you have a double problem, you could have iron overload or anemia and CCSVI. I would think people would want to know if they have both.

AdamT-you did not mention ferritin, you need to test ferritin also:

ferritin
total iron
TIBC (total iron binding capacity)

let us know the results!

Count me as one with anemia and very high ferritin. Negative Hemachromatosis genes test.

Awaiting meeting with my hematologist to discuss next step.

Possibly Exjade.

Cause one health problem just can't be enough! Ugh!

Lucky125-ask the hematologist whether you could have something called "iron loading anemia". The problem is, I am not sure just how many doctors are aware of this condition... did anyone test your transferrin saturation? How is the hemoglobin? Everyone but everyone seems to have some form of iron metabolism problem...

http://www.ironoverload.org/facts.html


4. If TS is elevated, the individual should begin treatment. Some literature suggests treatment when ferritin alone is elevated. Giving blood does no harm, and instead is beneficial to health. About one-fourth of patients have iron-loading anemia (low hemoglobin). Treatment is the same unless the anemia is so severe that blood transfusions are required. Maintaining a hemoglobin of 10 or hematocrit of 30 percent makes the patient treatable with bloodletting. Severely anemic patients require iron removal by an iron chelator, Desferal. All anemic patients benefit with B complex supplements, including folic acid, B12 and B6.