When My Thyroid Betrayed Me

Three months after the birth of my third child, I didn't feel well. My neck was sore and I had a fever. My neck was really bothering me so I started feeling around. I became very scared when I felt lumps in the front of my neck. At the time, I had three young children (all under four years old) and hoped the lumps weren't cancer. I didn't want to leave my babies so young.

I went to my family doctor who did the blood tests to check my thyroid. Her diagnosis was Hashimoto's Thyroiditis, Hypothyroidism & Goiters. I had several nodules on my thyroid. She prescribed Synthroid and referred me to an Endocrinologist.

At the Endocrinologists, they biopsied my nodules and put me on the schedule for regular check-ups. The nodules were negative for cancer. They stabilized my medication dosage over the coming months. They said the goiter/nodules would go away once the medication was stabilized, but they never did. My hair stopped falling out but the holes in my memory continued. I couldn't lose weight. I was tired and just felt off. The Endocrinologist, going by my lab results, said everything was fine. I didn't feel fine. This went on for five years.

Then we moved. I went to my daughter's new ENT (ear, nose and throat doctor) who did an ultrasound and blood work. He said he could biopsy it again (at that point, it'd been about five years since my last biopsy), however, he didn't hold a lot of faith in the biopsy. He said out of the millions of cells in the area, the biopsy only grabs a small bit of those. It can get cells that aren't cancerous, but it doesn't mean that cancerous cells aren't present or that the nodules aren't cancerous. He didn't biopsy.

Because we moved, we had to find a new family doctor. My weight has continued to increase. She said she could manage my thyroid problems. Like the Endocrinologist, she manged it according to my lab work and didn't pay any attention to my continuing symptoms over the next two years. My most recent labs (from last week) are like this:

• My TSH: 3.70

Their lab is using the old recommendations for TSH. The old recommendations were 0.35 to 5.5 ulU/ML. The 2003 recommendations from the American Association of Clinical Endocrinologists is 0.3 to 3.04.

• My Thyroxine: 5.2

Recommended normal range is 4.9 to 10.9 UG/DL. I am at the low end of "normal".

• My T3, Free: 2.80

Recommended normal range is 2.3 - 4.2 PG/ML. I am at the low end of "normal".

The letter from my doctor that came with my lab results says my levels are great. I don't feel "great." I feel bad. I feel fat. I feel clueless when I can't remember what I planned to do 30 seconds ago because my memory is like swiss cheese.

The crowning moment from this last doctor visit is that my weight went up even more. I'm at 172 now. The only time in my life I've weighed this much was when I was pregnant. So when I received this letter talking about how great my levels were, I held back tears. I've held back tears for the last two days. I'm not asking to be a size 2/4 again. I'll take an 8! They now say they will refer me to an Endocrinologist (after they get their own ultrasound...not sure why they just can't let the Endocrinologist handle it). My referral is being held hostage until after I get the ultrasound (which is scheduled for Tuesday).

I just want to have some resemblance of who I used to be. I feel lost. I feel fat. I feel helpless. I feel like an airhead who would forget her head if it wasn't screwed on. I feel like I'm just a piece of paper showing my lab results and the rest of me doesn't matter. I want a doctor who will listen to me and treat ME, not just the lab results.

To read a little more of my past thyroid posts, they're here. I've created this blog you're reading now to be just about the thyroid and will post about it here from now on.