In 2000, I underwent radioactive iodine ablation (RAI) for Grave’s disease. I pushed my doctors to do it because I was allergic to the anti-thyroid medications (they shut down my white cells) and I really wanted a normalized thyroid so I could get pregnant and not have to deal with the Grave’s disease anymore.

At the time, I was wrapping up my bachelors and had started a dual masters program in public health and social work. Boy, did I think I knew it all. I figured if I just got rid of my thyroid, I would not have to go through all of the stuff my mom went through after she had my sister and me. I was completely and thoroughly convinced that I could just kill it off and take thyroid hormone replacement therapy forever and not have to deal with the abnormally high levels or my pesky thyroid again.

Dealing with an incompetent endocrinologist

In early 2000, I pushed my endocrinologist into the RAI against his better judgment because I wanted to get pregnant. After the RAI, he let me sit for six weeks without a TSH test. I finally started blacking out in the backyard while planting my garden. He was on vacation, remarkably upset I had phoned to complain, and promptly notified me that this was not a thyroid issue.  He proclaimed I was pregnant because I had refused birth control pills during the RAI process. I have to admit, a few weeks later, it was quite amusing to FIRE HIM after I received my lab results and my TSH was over 100.  Of course, not before I got out the door with a prescription for synthetic thyroid replacement hormones.

Grad School and T4-only

So I trudged on through grad school, losing my mind, battling between brain fog and limbs that were so cold that I was literally bundled up in class in the middle of the hot Florida summers. I couldn’t figure out what was wrong with me. I seriously thought I was going crazy. Finally, I got tired of the endos and their three-month waiting list and sought out a more holistic (aka cash pay) doctor.  She was the one who turned me on to Armour and taught me about T3. That was a turning point for me. I read everything I could on thyroid disease and replacement hormones, which at the time, in 2000, was not that much.

When it came time to develop my thesis, I took it as my duty to show people that being euthyroid via a TSH test did not mean you were physically or emotionally okay. My thesis studied individuals with a “normal” TSH and depression.  And guess what I found?  They were almost all depressed at the “normal” TSH lab values (which has since been adjusted). Of course, my professors chalked it up to demographics.

Pregnancy, a difficult birth and a return of antibodies (TSI)

In my last semesters of grad school, I got my T4 and TSH levels to normalize and became pregnant with my first son. It was a picture perfect pregnancy, complete with weekly yoga and a beautiful birth center overlooking the bay.  That was, until he came 5 weeks early and almost died. NO ONE, including my doctor who was overseeing my thyroid hormone prescriptions for the midwife, warned or tested me for Thyroid Stimulating Immunoglobulins (TSIs).

At 35 weeks, I was transported to the hospital.  They tried to stop the contractions, which left me in hard labor off and on for over 30 hours.  I wanted to die. Finally I gave in to Demerol and an epidural, which didn’t work. When they finally conceded and let me push him out, he was whisked away to the NICU. Test after test after test was done on his poor little body. He had an enlarged thymus, spleen, liver, and his tiny heart, which was being pushed on by enlarged organs, had holes in it. His platelets were so low we almost lost him, and had to sign a release for a transfusion. It was amazing he survived a vaginal birth. They didn’t know what was wrong with him. First they thought it was an infection, thenToxoplasmosis. Finally someone saw a note in my chart about Synthroid and it all came together.

His T3 and T4 levels were so high at birth, they were off the charts. My thyroid antibodies had silently attacked his poor little body in utero and wreaked havoc. After ten days, they finally released him on anti-thyroid drugs. For months, we drove an hour each way to the children’s hospital in St. Petersburg for blood tests, which involved me and the lab techs holding my tiny little son down on the table for blood draws. It was horrifying. After about three months his white cells started to shut down and with my foot down, they pulled him off the meds. Today, by the grace of God, he is mostly well. I’m grateful, because I’ve read many in his condition turn out to be stillbirths.

A second pregnancy and high antibodies

I became pregnant with my second son last year, who I almost lost at 17 weeks when I started bleeding profusely.  After a lab panel showed extremely high TSIs and estrogen dominance, I forced my doctor to prescribe a high dose progesterone cream and was able to sustain the pregnancy to 34 weeks. I refused the amnios and went with weekly sonograms after 30 weeks to make sure his thyroid was okay despite my high antibody levels of 300-500+.  Of course, he tilted his neck just right to not be able to see a thing. He spent a week in the NICU but had far fewer issues than my first son. Do I give the credit to the progesterone cream for lowering my antibodies and stopping the bleeding? You bet. My doctor, yeah, not so much.

The consequences of RAI and Graves

I’m sorry to ramble, but after 12 years of living with the consequences of RAI, I felt like it was time to speak out. Had I known what I know now about the potential causes of autoimmune Grave’s disease, I would have worked to cleanse my body and repair the damage of years of bad choices, as well as the burden of fluoride, chlorine, and bromine that all displace iodine in our systems. I would have stepped back to think twice about what it is to live each day on a pill, that if the world is thrown into chaos, I wouldn’t survive without. I would have done more digging to realize that RAI has actually been shown to increase thyroid antibodies and that there are receptors in other places in the body that might have been hit with the blast.  And most of all, I would have reached out more to others that were going through the same thing and said, you are not crazy…and you are not alone.

The Stop the Thyroid Madness website is something that I did not have available to me in 2000 when I made my choice for RAI.  I sincerely hope you will do your homework, question the medical establishment, and most of all, realize that your lab values do not dictate your wellness.

Robyn Thompson, MSW, MPH, is currently a stay-at-home mom to her 8 month old son. She has been a public health consultant for the Department of Defense as well as several large consulting firms.  Robyn was diagnosed with Grave’s disease in the late 90’s and has been fighting for better care every day since.