Live It: My Thyroid Journey Pt. 2

You can read Part 1 here.

My hair stopped falling out.  The weight gain did level off.  But I still felt no better.  My primary care doctor wanted me to just have my thyroid removed totally.  If that happened, I would be placed on synthetic thyroid hormone for the rest of my life.  That’s not a really horrible thing but I know that people on it still have a hard time at first getting their levels regulated and weight gain / inability to lose weight is always an issue.  The thyroid controls so much in your body that I could not imagine not having it even if it wasn’t behaving itself.

All along though I knew my primary and this endo were not on the right track.  You know your own body.  You know when it isn’t working correctly.  The one message I want to share and hope that it gets heard is “you are your own best advocate”.  You know when your body is not working at its maximum potential.  You have to be the one to get this across and try to get heard.

I wasn’t being heard.  It was time for a new doctor.  In August, I met with a new endo and within five minutes of talking to her, she said she did not think I really had Graves.  She took me down the hall and did an ultrasound on my thyroid.  She found nodules.  Nodules can make the body act just like Graves does.  This happened within 5 minutes.  If the first endo had done an ultrasound, I could still have all my hair and not have all of this weight gain to deal with.  This is the number one thing that frustrates me the most.  One test and five minutes could have prevented 8 months of overdosing on potentially harmful medication, hair loss, weight gain, wasted days filled with stress, anxiety and fatigue.

The options for treating these nodules would be to either have radioactive iodine ablation where all thyroid cells are killed off or surgery to remove the nodules or the thyroid.  If I did the ablation I would have to stay away from my daughter for 2-4 days.  And with surgery there are all the regular issues surgery brings.

She sent me for an iodine uptake test where basically you take one radioactive iodine pill and come back the next day for imaging scans.  That test showed that I had multiple nodules on my thyroid and one of them had "suspect cells" that they would need to remove and have pathology run on them.

It was time for me to decide how I wanted to be treated.

Stay tuned for Part 3 of My Thyroid Journey.