Thyroid Disease

My Diagnosis, Surgery, Subsequent Weight Struggle, and Every Other Experience With This Life-Changing Disease

Diagnosis

I was diagnosed with thyroid disease in 2008 (I was 23) mostly by accident. I went to my physical to get my immunization records for college and my doctor found a lump in my neck. So I was sent for an MRI and they found a large tumor on my thyroid gland. It was benign, and called a nodule. They’re made up mostly of thyroid tissue on a overactive thyroid. And MAN did I have an overactive thyroid (hyperthyroidism). My whole life I could eat whatever I wanted and never ever workout and I’d never gain any weight. What I didn’t know was that all those extra hormones fueling my super metabolism were starting to damage my internal organs. My heart could not keep up with my thyroid and I was at risk for going into cardiac arrest. They gave me 2 options – surgically remove the tumor and half my thyroid or kill it with multiple rounds of radiation. Either way I would no longer have a functioning thyroid gland and I’d have to take hormone replacement medication for the rest of my life.

Surgery

Definitely ended up choosing surgery over poisoning my body with radiation if I didn’t have to. So I was immediately scheduled for surgery in Boston. (I will always be immensely grateful that we are home to some of the best hospitals in the world). The surgery itself was a breeze. I mean, obviously I was super nervous about doctors literally slicing my throat open and removing one of my organs…but I think my heart is more important than my thyroid. I had minimal pain and a super fast recovery. They closed the wound with internal sutures and surgical glue and made sure to make their incision within one of the natural creases in my neck, so I swear to God almost no one can see my scar. I also used Mederma, which is this magical scar cream that basically erased any evidence from my skin. It’s a little pricy but you use very little at a time so the tube lasts awhile.

Life Without a Thyroid

After surgery I wasn’t referred to an endocrinologist and I truly didn’t know how much my life was going to change. I should have started hormone replacement meds immediately, but no one told me to. My PCP referred me to a surgeon and the surgeon didn’t refer me to anyone. I gained 100 pounds in 3 months, lost almost all my hair, and my digestive system basically shut down. I was in a really dark place then, and my body image and self esteem were completely destroyed. 6 months later I got into a car accident and got pretty bad whiplash and started seeing a chiropractor and homeopathic doctor. It was her that was like giiiiiiirl, you need thyroid meds. The next day I made an appointment with my endocrinologist.

It took me THREE YEARS to lose the 100 pounds I gained in the 3 months post surgery. Three long years of trying different meds and learning to function with almost a completely different body. Well, at least on the inside. I get my blood drawn every 6 months to check my levels and the doctors alter my meds accordingly. I’ll have to do this for life. (when people with thyroid disease are pregnant they are automatically high risk and have to get their blood drawn every 3 weeks for the entire 10 months). I had to drastically change my diet, not just to drop the weight I put on, but because my digestive system was irrevocably damaged. I’m permanently low carb (not full on keto) because I can’t digest super heavy or rich foods. I have to take zofran (prescription anti-nausea), Linzess (prescription for IBS-C), and Prilosec, every single day. My hair never grew back, and I don’t just have extensions, I have a full on weave. My nails are so brittle they bend and fold and flake and legit disintegrate, and I can’t open a can of seltzer unless I use my teeth. I get calcium build up on my joints in my hands that is similar to arthritis. I’m also fucking TIRED. Not a tired normal people feel, but an extra level of exhaustion that most people don’t understand. My caffeine tolerance is shocking and I can drink 2 Redbull’s back to back and almost not feel anything. And this is my normal. For life.

Frequently Asked Questions

How’d I lose the weight? – I live a low carb life and practice yoga along with HIIT workouts. I also practice intermittent fasting.

What meds do I take? – Brand name Synthroid. Some people, like me, have to take brand name over generic because the hormone levels are more precise.

Why don’t you take biotin for your hair/nails? – I actually don’t take any vitamins because OTC vitamins and supplements can block the body’s absorption of synthetic thyroid hormones.

That’s pretty much it! I can’t think of anything else to share but if you have any questions don’t hesitate to ask 😉