One Year on NDT

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TW: Suicidal Thoughts

15th December 2015. That’s going to be a date that sticks in my mind forever. 

On this date, I began my journey with natural desiccated thyroid for my hypothyroidism.

A full length photo of Rachel facing away from the camera into the canals of Venice. In the background are boats and a wooden bridge lit up by the sun.

Unimpressed with standard T4-only medication Levothyroxine, after gaining more and more symptoms and just feeling worse as time went on, I decided to self-source NDT, a medication that has been used for over a hundred years and which sounded like it might work better for me than Levothyroxine.

I’d been researching about it and learning as much as I could for almost six months, before taking the dive. I’d asked a few different doctors at my GP practice to prescribe it for me, as well as an endocrinologist, but all of them point-blank refused. I didn’t want to self-source, it was scary and filled me with anxiety –  so it was never really my intention to do so.  

But in late November, I left another doctors appointment in tears; disheartened, fed up and angry.

I was heavily depressed, to the point of being suicidal. I couldn’t see past this horrible situation I was in – the zero quality of life, the pain and torment, the sheer deep, dark hole I was never going to climb out of. My life had unfairly been ripped away from me by hypothyroidism at 21-years-old, yet every doctor told me I was ‘normal’, ‘fine’ and ‘optimally medicated’ as they dished out more and more medications to mask increasing symptoms.

Everything I thought I was going to have in life and everything I knew was no longer in my grasp. I had no quality of life.

A selfie of Rachel looking very ill before NDT

So after leaving one more unfruitful doctors appointment, my other half took the reigns and ordered NDT online. He’d painstakingly taken hours looking at reputable sites, gathering sources of information and comparing. After many evenings of spending them entirely looking through the websites, he ordered the NDT and turned to me, saying “There. It’s done.” 

I filled with anxiety. But I also filled up with hope.

It sounds cliche I know, but it’s as if this darkness looming over me was starting to disintegrate ever so slightly, even at that moment. I wasn’t brave enough to make the leap to another, self-sourced thyroid medication myself, even though I really wanted to try it, but I’ll forever be thankful that my other half was. He knew what we needed to do to get me better.

Just three weeks later, it arrived. I hurriedly opened the parcel and once again, anxiety filled my stomach as I wasn’t sure if I really wanted to do it. I was holding the bottle in my left hand when I caught myself in the mirror in my bedroom.

Looking in the mirror, I hardly recognised myself.

A photo of Rachel looking tired whilst on Levothyroxine

Not just in appearance – sure, I had huge, deep, dark, bags under my eyes, dull, dry skin and a puffy face with thinned eyebrows – but I also looked incredibly vacant, sad and dead in the eyes. I had no life in me anymore. That’s when I decided I would start the NDT the following morning. I was going to do this.

(Please note: self-sourcing your own thyroid medication can be incredibly risky. I finally found a GP who supported me in this and handled my dosage and management of this medication. Doing this with a doctor’s guidance is incredibly important and what I always recommend.)

What Did I Have to Lose? 

My first day was.. interesting. I actually thought I was dying! I slept an awful lot that day. Day two, I did better. And as time went on, I only improved. It’s taken a while to tweak the dose so I feel good, mind.

Now, one year in to NDT (with guidance and support from my GP, who fully supports me and runs the tests I need in order to monitor my progress, and adjusts my dose with me), I’m a completely different person.

I live a life largely unaffected by my thyroid and I feel great. I still have slight fatigue here and there, usually when I overexert myself or have a late night, but on the whole I’m doing very, very well indeed. I don’t live with any other symptoms.

A selfie of Rachel holding a sign reading 'I am the face of Thyroid Disease'

I do still have adrenal dysfunction, in the form of high cortisol, and am planning on retesting this in the new year, as well as my sex hormone imbalance (oestrogen dominance/low progesterone) but the only ongoing symptom I have is the fatigue occasionally, but even then, it’s nothing like it used to be.

Mornings can still be difficult with the adrenal fatigue, but I’m much better at managing my health these days, being my own advocate and forever learning.

I wrote my first blog one year ago today, but my website itself went live at the end of March 2016. I wasn’t sure if I was ever going to share my blogs, as I manically typed out blog after blog of my thoughts and feelings as a thyroid patient.

In just nine months, I’ve written almost two-hundred blog posts, had visitors from one-hundred and eleven different countries and passed thirty-five thousand website views.

I am just an ordinary twenty-something who bought their first home this year, works a nine-to-five job and enjoys having fun with their friends. I’m also a thyroid patient, battling multiple endocrine issues and maintaining a blog about it, a Facebook support group aimed at supporting others going through the same condition/s and writing for other websites now.

In the one year since I became my own advocate, I’ve come a long, long way. I got on to the road of recovery on the 15th December 2015.

Thanks to my amazingly supportive other half and my forever understanding friends and work colleagues, I’m back to the old me. In fact, the improved me.

I’m determined and driven to make a change to the word, not just my own body. 

What could you achieve in just a year? 

You can click on the hyperlinks in the above post to learn more and see references to information given.

EDITED TO ADD: In the few years since writing this post, my NDT medication is now prescribed. I no longer self-source. See more information here.

Click here to see all of my NDT milestones.

Be Your Own Thyroid Advocate Book CoverSee also:

The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tiredwhich builds on this article in detail and reveals how Rachel went from having an incredibly poor quality of life with hypothyroidism, to thriving again.

If you found this article beneficial, please take a moment to share it so we can help others get better with hypothyroidism and Hashimoto's, whilst also raising awareness. "Be Your Own Thyroid Advocate."

Written by Rachel, The Invisible Hypothyroidism

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