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Tuesday, May 20, 2014

The Doctor Knows Best?

I have a blood disorder called Beta Thalassemia Minor.  There are 4 ‘versions’ of the disorder and in order of severity mine is 2nd to last.  Ready for a science lesson (in hopefully understandable terms)?

Hemoglobin’s job is to carry oxygen through your body.  Hemoglobin is found in your body’s red blood cells.  With Thalassemia my red blood cells die at a faster rate than “normal” people and my body does not produce as much of the “beta globin” (part of what makes up the hemoglobin) so my body has less red blood cells and less hemoglobin.  Because I have the “minor” version this really just translates into chronic anemia.  Literally my body is unable to be not-anemic because my red blood cells are slightly deformed and/or smaller than normal and cannot “grab” iron like they should.
Normal people have a hemoglobin level at 12+.  I usually have a hemoglobin level of 10.  When I’m pregnant I am at about 8.  I have once dropped to 6 and required a blood transfusion.
Because of the thalassemia my body just can’t use/move all the iron that my body needs to function “well” (translated to I’m anemic).  So the un-educated doctor would say “take iron supplements” without realizing that all that will do is put extra iron in my blood that the red blood cells can’t handle.  This extra iron gets jammed in “tissue” in my body and can shut down vital organs.
This may sound like I’m being overdramatic, but my parents got to experience the “iron overload” first hand when I was young and an un-educated doctor had me taking iron.  An Educated doctor found out and told them to stop them immediately – they were killing me.
So when my OB sent me an email today asking me to start taking iron pills I panicked.  YES it is possible to take the iron pills and not die – but the chance is still there.  The chance that the dose isn’t “just right” is there.  And that terrifies me.  My levels are at a 9…is getting to that 10 so important that I risk organ failure? Granted I’m sure we’d catch it before it got that bad.
When do I tell a doctor “NO”.  No I won’t take those pills…  It could be for the best.  It could make me feel better.  It could help my body get what it needs…but there’s that looming possibility it can do something so much worse.
So I emailed her back and asked what other options we have.  And let her know that I was super sick last week so I couldn’t eat an iron rich diet like normal and I threw up my prenatal vitamins which could have skewed my results from the blood test yesterday.
So let’s pray she’ll let me re-take the test in a week or so once I’ve gotten back to my normal food intake for a while OR offer a different solution than the supplements.
On the bright side...Thalassemia is thought to make you immune to I have that going for me!

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