Communicate, people!

Many years back I created a family medical history chart.  I sent a spreadsheet around to the family listing all known family illnesses, and asked each person to fill it in, adding additional illnesses as needed.  I filled it out for my grandparents.

As it turns out, this was a brilliant idea!  Everyone loved it!  They all filled it out right away.  I compiled everything, then split it, making one spreadsheet for my mother’s side of the family and a separate one for my father’s side of the family.  I sent the appropriate spreadsheet to the appropriate people, and suddenly we all had a comprehensive family medical history!  I still bring this with me to medical appointments.  I recommend that everyone do this.

The problem is that it’s very outdated.  I tried to update it years ago, and no one was interested.  Of course, this only works if people update it.

I guess it makes sense, then, that I didn’t know about my aunt’s hypothyroid.  I got tested for hypothyroid many, many times over many, many years.  Then they changed the “normal” standards, and suddenly the same test results that were considered “normal” were now considered hypothyroid!  I started taking meds, adjusting them a bunch of times over the years, and figured this was the least of my problems.  (I was very wrong about that, but that’s a subject for another post.)  Last year my doctor decided to test my thyroid antibodies for the first time.  It amazes me that no one thought to do that before.  I got diagnosed as having autoimmune illnesses years before the hypothyroid diagnosis.  Why didn’t anyone think to test that?  With the “normal” antibody range maxing out at 35, and my results coming in at over 300, it was clear that I had an autoimmune issue with my thyroid.  Shocking.

I spoke to my doctor’s office today, getting the latest results.  Suddenly it hit me that this has a genetic aspect to it, so I emailed my immediate family and my cousins.  And what happened?  A cousin wrote back that her mother, my aunt, was diagnosed with a hypothyroid years ago!  WTF?

Now, I’ll admit, I wasn’t fantastic about communicating my antibody issues, but at least that only happened several months ago.  With my aunt we’re talking years.  For something with a genetic component.  It took 10 years for my first autoimmune issue to be diagnosed.  Now, 9 years after that, I have 7 diagnoses.  So far.  Many relatives were diagnosed after me, and theirs were much easier because they had my history to reference (I’m just about the oldest in my generation, and mine started at a young age, even before my grandmother’s RA.)  Wouldn’t they think that this information may have helped me get diagnosed?  Wouldn’t they think that maybe, just maybe, this is information worth sharing?  What else don’t I know?

ARGH!!!!!!!!!!!

I try to be patient.  I really do.  But when family members don’t share basic information….?!?  Time to revive and update that chart.  And this time I’ll hound people until they get it done.  It’s too important to ignore.  We all need to talk about these things!

 

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