A Londoner’s Thyroidectomy Story – Hyperactive and Nodules

What was the reason for your thyroidectomy? – Hyperactive thyroid: thyroid nodule
What age were you when your thyroid was removed? – 34
What is your current age? – 36
What is your gender? – Female

Our London friend’s positive post thyroidectomy story!:

At the age of 17 I discovered a lump in my throat: a thyroid nodule. My thyroid was only a bit hyperactive, but doctors recommended an iodine treatment. What a hell my life was afterwards. I got severe hypo and gained massive weight while hardly eating anything. (That’s not great during puberty…) The swing in thyroid levels made me depressed and not knowing that the depression “wasn’t me but purely hormonal driven” was scary.

With thyroxine (thyroid-hormone) I got my life back on track. After 2-3 years doctors asked me to reduce my Thyroxine as my blood levels showed I was slightly hyper. I responded really badly to lowering my medication! For me personally, it’s a detox period of 3-8 weeks in which I was depressed, tired, cold and am gaining weight. This time I knew, though, it was the thyroid hormones playing tricks with me and I could deal with the feelings of being depressed. Still… wasn’t too thrilled about the weight gain. I was thrilled I was off the thyroid medication after a few months, though, and considered myself cured!

However, my nodule came back. The nodule kept growing and growing and doctors decided to put me on Carbimazole (to lower the thyroid hormone levels) to make sure I did not get hyper. They gave me a bit too much and 2 months before my wedding I gained 7 kilos and could all of a sudden not fit in my wedding dress anymore (the one they ordered in a bit too big as they would make it more fitted later). There were quite a lot of tears. Doctors were very sympathetic, changed meds and on my wedding day I had lost it all and looked radiant. (If only losing the weight that quickly would always be so easy!)

During my first pregnancy (no troubles falling pregnant whatsoever, which is fabulous having learned of other stories from thyroid patients!) I was monitored carefully. I seriously have great doctors. The Carbimazole was increased slowly during my pregnancy up to the highest level acceptable during a pregnancy. We agreed that before a second pregnancy, my thyroid had to be removed as by now I was taking too much Carbimazole for a pregnancy. So we did.

I had my complete thyroidectomy a month before I turned 35. I was scared, but the operation was quick and I recovered quickly. Of course, I gained a few kilos after: that’s part of the game playing with your thyroid. By then I was training with a personal trainer who also helped out with a diet (without being hungry) and without losing any weight, I looked the best I ever had.

4-5 Months after the thyroidectomy I fell pregnant (again without any problems). During my pregnancy I had to increase my Thyroxine to quite a high level, but the baby and I were doing great. Now, 8 months post delivery, we’re again slowly reducing my Thyroxine. I am in the middle of such a detox period, but I know I will get through.

Still: it’s a positive story! (My apologies if I am hiding that part a bit). I am glad the thyroid is out as having a thyroid with a complete life of its own and not listening to my body was so tiring also as doctors were less responsive with medication hoping my thyroid would start to pick up a normal rhythm. Now that I don’t have a thyroid, we know we “just” need to balance it with thyroxine. And I’m realistic: for me, increasing thyroid hormone levels is easy (although being hyper isn’t great), lowering thyroid hormone levels is hard for a few weeks (and being hypo even worse).

It’s a balancing game and you need to make sure you’ve got doctors listening to you (and not just looking at your blood-test-results) to help you. There are certain times in life where you need to find the right level of medication, which make you feel all kind of things you might not want to feel (like feeling a patient!). But most of the time, when set at the right levels, I am just me without an unreliable thyroid.

I don’t want to give any advice and am already happy if people enjoy reading my story, but if I am asked to share with you the one thing that made a true difference: After being a thyroid patient for close to 20 years, I have made myself quite knowledgeable about my specific situation, which has given me a sense of control (as much as possible) over my own body, realisation of what’s going on when feeling bad and made me a partner of the doctors when making decisions about my treatment. At the same time, I am trying to keep a good lifestyle with healthy eating and going to the gym to lower the frustration of weight gain when playing with my thyroid. Without all that, the thyroid (or the absence of it) would probably have controlled my life and how I feel too much, which should not be necessary.

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