What Does Living With Autoimmune Disease Look Like?

Raising awareness around living with Hashimoto’s Thyroiditis.

A butterfly shaped gland in the body — that’s what our thyroid looks like.

I quit taking biology after the 10th grade, so I never met this gland until I was 33 years.

Here’s my story.

I never had a weight issue as a child. I was an active child growing up with three brothers as we were always out in the backyard playing games.

After I reached the age of puberty, family and friends began to question what was happening to me as I began to put on weight at a rapid pace.

Then in the following year, they would notice how quickly the weight was dropping off.

This pattern of one year gaining weight, and the next year losing it all was basically attributed to growing up, and I never had visited a doctor as to why my weight issue was so dramatic.

Never once growing up, did anyone think to question my rapid gaining and losing of weight. They just figured it was part of my lifestyle and diet.

This pattern of rapid gaining of weight and then subsequent weight loss, stayed with me until I turned 22.

You can imagine the highs and lows I went through emotionally when dealing with my weight.

Then, at 23 my weight plateaued. I couldn’t lose weight as quickly as I wanted to, but then again I wasn’t gaining weight either.

This was frustrating but I learned to live with it, until I became pregnant at the age of 30.

When I was pregnant with my first child, the doctors did the usual tests but didn’t think to perform any special tests concerning the thyroid.

The weight didn’t come off after my first child, so when I became pregnant with my second child, my doctor warned me not to gain more than 5 kgs in this pregnancy.

With my second pregnancy, at first I was losing weight, but the doctor told me it wasn’t a concern, as I then began to gain the pregnancy weight.

My doctor was please with me that I was able to keep the gained weight to a minimum.

Throughout my second pregnancy, I didn’t have any issues with blood sugar or blood pressure, and the doctor would say that all look good. She did note however, that I would deliver early.

And as with my first child, I delivered my second child as soon as I entered my ninth month.

Six months after the birth of my second child, I began feeling severe numbness and tingling all over my body that began to worry me greatly.

My worry was diabetes as it was common in my family, so now I figured it was my turn.

I asked my husband to take me to the clinic with this concern and told them about the numbness all throughout my body.

The doctor at the clinic told me they would run a complete blood work of tests and let me know.

The next day, the nurse called and said the doctor wished to see me right away.

While on the phone with her, I asked if I had diabetes, she said that I didn’t, and that the issue was with my thyroid.

I took a hugh sigh of relief, and thought ok, well whatever it is, I’m sure I can fix it, just as long as it’s not diabetes.

The Diagnosis — Hashimoto’s Thyroiditis

When the doctor walked in to give me my diagnosis, he just looked at me and said, “your thyroid has been dead for many years”.

I didn’t understand what he meant, so he went on to explain that it wasn’t my thyroid that was causing problems — it was my immune system that had essentially destroyed my thyroid.

He went on to explain that in response to my immune system thinking the thyroid hormones were foreign and attacking them — that my thyroid was fighting back with more hormones, at first causing a type of hyperthyroid response — which causes weight loss.

But gradually the thyroid would lose the battle and the immune system would continue to attack what little thyroid horomones would come out, and so now I needed synthetic hormone replacement to continue to produce thyroid hormones.

The thyroid is what controls the metabolism and the rate at which food consumed is turned into the energy needed.

So getting the right dose of synthetic hormone to help my metabolism function properly was essential to maintaining a healthy weight but it was going to take time.

When you first start on the synthetic hormone pill doctors will tell you that it takes 4 weeks to see a change before they can diagnose the correct dosage.

The pill must be taken on an empty stomach and you must refrain from calcium or iron rich products as it can affect the body’s absorption of the pill.

My second child was born in 2009, and even in 2024 I’m still learning more about how to learn to live with Hashimoto’s thyroiditis.

Learning to Live with Hashimoto’s Thyroditis

In sharing my story I hope to raise some awareness around living with Hashimoto’s thyroditis and around autoimmune diseases in general.

I have spent the last 15 years doing research on Hashimoto’s thyroditis and have undergone even more tests to rule out other autoimmune diseases.

I’ve since learned that gluten and diary are to be avoid because of how closely proteins in their chemical compositons matches that of the thyroid hormone and therefore, can cause inflammation as the immune system will attack these hormones.

But I’m Canadian, and I’ve known poutines a lot longer than I’ve known about Hashimoto’s. Being that I’m also Lebanese, tabouli is not the same with quinoa!!

So as you can see, the struggle still exists.

But I keep hoping I’ll get stronger.

I underwent a colonoscopy in 2018 to rule out celiac disease. I ruled out a dairy allergy in 2016.

I am not a success story in overcoming the disease as I feel it’s easier said than done.

I’ve tried all the diets, and I’ve come to appreciate what I’ve learned from each one, even if at the end of the trial period, we had to part company for some reason or other.

I am confident in saying however that now, after 15 years, I see sugar as the evil genius it is, and I am not a fan of it anymore.

But I am still struggling with symptoms such as fatigue and weight.

And so in writing my story, I want to offer my emotional (non-medical) support to anyone else out there struggling with an autoimmune disease.

Let’s talk.

If you enjoyed this artice, come and join me on my other personal journeys with reading my articles below.