Hashimoto’s like other autoimmune diseases don’t come on overnight. One thing I’ve learned over these past years since diagnosis is that everyone has a Hashimoto’s diagnosis story. It’s a slow and painful process and it often takes years, in my case decades, to get a diagnosis. And with that diagnosis comes so many emotions, relief, anger, overwhelm, fear, a bit more anger, and finally if you’re lucky, some acceptance.
But unlike some medical conditions, there is no cure, and there is no quick fix. So even after you have been diagnosed with Hashimoto’s you are likely to have years ahead of you trying to get the disease under some sort of control.
My Hashimoto’s is not under control. Not even close. In fact, I’m a mess. I’m tired all the time. Depression often hits me like a truck and anxiety makes me think the entire world hates me and I should just stay in bed where it’s warm and I feel safe. I find it hard to explain using my words how I’m feeling because the brain fog makes it hard to form coherent sentences. This normally results in me just crying as I’m also unable to control my emotions. So when you ask me what’s wrong and instead of answering you just get a babble of tearful nonsense, know it’s not really me, it’s the Hashimoto’s.
But at least now it has a name.
Before my Hashimoto’s diagnosis, I just had years and years of individual symptoms. I’m going to list all of the things I can remember being treated for over the past 25 years:
- Eating disorders
- Learning disorders
- Panic attacks
- High cholesterol
- Low blood pressure
- Hair Loss (including thin eyebrows)
- Irregular period
- Extremely heavy periods
- Adult acne
I could probably go on, this is just off the top of my head. My TSH was first tested when I was maybe 11 years old. I believe I first became symptomatic around the age of 9 or 10. Like many with a Hashimoto’s diagnosis, my first symptoms aligned more with being hyper. I was painfully thin. In my mid-twenties, this flipped and I piled on weight which I couldn’t lose no matter what I tried. I think this is when my hypothyroid issues began.
Since the first TSH test, I believe I was tested at least 4-5 times from the age of 11 to around 30. Always came back that my TSC levels were fine. Oh if only I knew back then what I know now and was able to advocate better for myself and demand a full thyroid panel. But anyway, no one ever did. They just continued to treat me for all of the separate medical issues I was having. I was on beta-blockers, antidepressants, anti-anxiety medication.
I have memories of using cannabis as a teenager to help with anxiety, especially before bed. And taking amphetamine for around a year so I was able to get out of bed in the mornings because I was so exhausted. I think I was maybe 18.
It must be gynecological right?
Anyway, around the age of 24, I started having some pretty bad gynecological issues. I was in the Royal Navy at the time and had to be removed from the ship, it was so bad. In the end, I paid to see a specialist privately who did a full internal examination while I was under general anesthetic. When they couldn’t find anything they inserted a hormonal IUD which stopped me from having periods all together for the best part of 15 years. I had my 3rd, and final, IUD removed last year after my diagnosis.
Just to add, I was also put on birth control at the age of 15 because of hormonal irregularities. The pill never sat right with me and always caused me to have unbearable side effects. But the doctors just keep giving me different pills. When I think about this, it makes me want to scream. I have no moral or ethical issue with birth control, but it was probably the worst thing they could have done for me when my hormones were already all over the place because of the Hashimoto’s.
Grateful, but pissed
As much as I’m now feeling grateful for having the Hashimoto’s diagnosis, I’m also so pissed that it took almost 30 years to get it. And now since I’ve had it it’s taken me 2 years to do much about it. I am currently not under medical guidance as I have no trust whatsoever for western medicine anymore.
So here I am, age 38. I’m a little overweight, depressed, anxious, my hair is so thin it’s embarrassing, my eyebrows are tattooed on, my skin is dry, my eyes no longer sparkle. But I’m also finally in a place where I’m ready to take action and finally take my life back. In all honesty, I’ve been ill for so long I have no idea what it’s actually like to feel ‘normal’.
I just finished listening to a great podcast on Everyday Wellness with Cynthia Thurlow who speaks to Elle Russ about her thyroid journey and when she talked about the need to test every 3 weeks because you get so far, that you don’t actually know what it feels like to feel 100%. So you need to do those tests and adjust your medication according to the number and how you are feeling. I know I need to do this, and I will.
2021 is going to be the year I finally take action and start helping myself back to wellness. It’s pretty clear that when you get a diagnosis like this the only person who can truly help you is yourself. It’s time to play investigator and figure out what works for me and what doesn’t.
So here’s to 2021 and the start of my Hashimoto’s healing journey.