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My Thyroid Journey



Like many, my thyroid journey is complicated and very frustrating. For years I complained of pressure in my throat and would choke on food and even water.  Doctors would dilate my esophagus and send me on my way.  This never really fixed the issue, but they didn't suspect anything else being wrong.  I had a friend suggest that I get my thyroid checked out, but none of my doctors thought it was an issue and I was ignored.

In 2015 I moved to Florida and within one visit with my new rheumatologist, I was referred to an endocrinologist.  The endocrinologist felt my neck and said everything felt normal, but he would go ahead and do an ultrasound to make sure he wasn't missing anything.  During the ultrasound they found a 2mm growth on the backside of my thyroid. Because it was on the backside, I didn't physically show any sign of a growth, or issue. The doctor wanted to biopsy the growth to make sure it wasn't cancer.  They took 10 biopsies. That means that while I was awake, just lying there, they suck 10 different needles in my neck to collect a tissue sample.  It was not fun and quite gross. To everyone's surprise all 10 biopsies came back inconclusive, so the doctor wanted me to get my thyroid and the growth removed as soon as possible.  He referred me to an ENT, who is also a plastic surgeon, and we scheduled my surgery. 

My thyroid surgery went very smoothly, and I was sent home later that day.  Upon waking up, they had already biopsied the growth and informed me that it was not cancer. I was so relieved.  They sent me home with pain meds, but I actually didn't have any pain, so I didn't even take them.  This was the least painful surgery I've ever had.  The surgeon did an amazing job and you can't even see my scar.  He used glue on the outside and as soon as that pealed and the incision was healed, he had me put Mederma on during the day (with SPF in it) and vitamin e oil at night. it worked like a charm and even doctors struggle to find my scar.  

My endocrinologist made me wait until my neck was healed before starting me on thyroid medicine, so I quickly became a mess.  I gained 25 pounds in three months. I felt so sluggish and exhausted.  My TSH was 64. It's supposed to be between .5 and 1.5.  He put me on levothyroxine and said I would start feeling better soon.  My TSH did drop but I struggled with this for years. They eventually realized my body doesn't like the dye in the pills, so they have to keep me on the one that is white and adjust how many take to get the right amount in me.  

I bounce back and forth between hyperthyroidism (low TSH) and hypothyroidism (high TSH). The slightest change can throw it off unfortunately.  I feel better when I'm slightly low, but staying low for too long can damage your body.  The weight gain from being hypo is the most frustrating part for me.  You can do everything right and still gain weight.  I hate not having control over my weight and it's all over the place.  

I'd love to hear about other people's experiences with this and any suggestions you may have.  Please comment below and share!

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