10 Years Running on Fumes: My Hashimoto’s Story of Dismissal and Self-Rescue

The Last Week of Spring: Good Energy, Bad Labs

I can’t believe it’s the last week of November already and the last week of spring. Time sure does fly by when you’re having fun and misplacing weeks.

This week, the pain has been minimal—yay! I’m grateful to report sustained energy that allowed me to deep clean the teenager's room while he was away with his dad and catch up on other things I’ve been so far behind on. I managed to clean the house, catching up on areas (like the bathrooms) that I like to clean fortnightly. I’ve been remembering to water my vegetables and strawberries, and one batch of my young chickens have now started laying eggs, so I finally have enough to keep up with demand.

However, the "good energy" was misleading, as a new health crisis emerged.

The HRT Domino Effect: Thyroid Crash

I had blood tests done just to check to see how my thyroid is going, and it’s a rather big shock, actually. I knew something was off given my hair was falling out a bit more than normal, and I’ve felt hyperactive and tired at the same time. Last weekend, I felt a bit breathless when doing my jobs, and my heart wasn’t playing ball. My blood pressure was also high.

The results confirm my fear: My TSH is high, indicating I need more T4, and my T3 has plummeted, which explains the persistent lack of appetite. I am still two weeks away from seeing the Doctor, so I will slightly increase my T4 myself just to bring my TSH down.

One thing I learned this week was starting HRT can affect the thyroid and increase the need for a higher dose of medication—something that the specialist failed to tell me. I should have known to do my research better to make sure, but the lesson is clear: managing one hormone affects everything else.

The Origin Story: My Hashimoto's Diagnosis at 26

I wanted to use this moment to touch base on my hypothyroidism and Hashimoto’s journey, as I’ve been in the weeds with this way longer than perimenopause.

I was first diagnosed with Hashimoto’s at the age of 26. My oldest son was one, my father was in and out of the hospital with kidney failure, and I was driving him two hours one way three times a week for dialysis. I had many doctor visits where I was told to go home and rest because I was a mum of two and just needed to sleep. When I was home, all I did was sleep, and my dad would look after my children.

The dismissal was constant: I once waited three hours for a doctor just to be sent home. On another trip to the hospital with vomiting and horrific stomach pain, they wanted to take my appendix out. I didn't agree and discharged myself. They weren’t too happy and told me I would be back. Happy to say I didn’t go back; it turned out it was a painful egg released as I got my period not long after.

I finally changed doctors, and my husband went with me to the new doctor right from the start to speak for me, as I had just had enough of not being listened to. The new doctor ran heaps of tests, and when I finally had a diagnosis, she gave me medication and simply told me to google what Hashimoto’s was.

I didn’t, and I spent the next 10 years running on fumes.

The Self-Rescue: Optimal is Not Normal

When my dad passed, it was a wake-up call, but it still took a while to figure it out. I found a Facebook group five years ago now, and they asked for my blood results. They saw my ferritin was one of the lowest numbers and told me straight away to get supplements and get it up. I learned through those groups that "normal" wasn't really optimal, and that I was almost at the bottom of the cliff with the ambulance waiting.

I started taking B12, iron (to raise ferritin), and Vitamin D and saw major improvements within six months, gaining enough strength and energy that I even managed to walk up Roy’s Peak in Wānaka during a two-week camping holiday I had done by myself just to reset my nervous system.

I had finally got my thyroid levels, ferritin, and B12 to levels that worked for my body, and things were going really well—until perimenopause kicked in.

Wrapping Up the Week

I finished my week off with a visit to the chiropractor to get realigned and then an afternoon of letting my body recover and relax.

I managed to stick to three coffees a day this week, and the withdrawals have finally passed—so it's time to reduce that amount even further. Given the complexity of all my other symptoms, going cold turkey and dealing with full-blown withdrawal is a risk I don't want to take.

The complexity of chronic illness never rests, but neither do I.

I've shared some of my story of being dismissed and my journey to self-advocacy. What were your most validating moments of self-discovery after being told to "just rest"? Share your story below!