Invisible Hypothyroidism Guest blog - How I needed a Different Thyroid Medication to Get My Life Back

Rachel Hill is a writer, blogger and thyroid patient advocate in the UK. She is also known as The Invisible Hypothyroidism when on line. 

This is Rachel's story in her own words. It somewhat similar to my own, certainly in terms of the mishandling by the medical profession and the withholding of the correct medication she needed to recover.

I first had symptoms of hypothyroidism at sixteen years old.

People labelled me ‘lazy’ due to a lack of energy and stamina and I was always cold. It wasn’t normal compared to my peers, who were active teenagers that often thought me weird for feeling so abnormally tired.

Before catching swine flu, that is.

At sixteen, in the December of 2009, I became very unwell with swine flu, but even after I had recovered from it, poor stamina, ongoing fatigue and lingering aches and pains in my legs pursued. Trips to the doctors came up fruitless as I was given the contraceptive pill to address my increasingly worsening periods (which were very heavy and painful) and I was told that the fatigue, longer hours sleeping and pains in my legs were all just part and parcel of being a teenager.

August 2011, only a year and a half later, and I was sent to intensive care in hospital following another bout of flu.

They say that people only have ‘real’ flu once in their lifetime, but here I was again. At eighteen years old, the doctors couldn’t figure out what was wrong with me as I laid in hospital, so I developed pneumonia and spent some time on life support, including my eighteenth birthday.

After leaving intensive care, I had to learn to walk again as my fitness plummeted. Physio sessions and a lot of time off college mark when my health started impacting my life quite a bit - socially, academically and more.

Most of my hair also fell out after leaving the hospital, and I was anaemic. I also started having recurring, strong bouts of depression and anxiety and I was on-off anaemic for a few years, never fully feeling well again. I was still tired and achy, yes, but I was also having other ‘random’ symptoms mount up, such as leg cramps, migraines, acne, horrendous constipation, irregular periods, dizziness, restless legs and more, but with no explanation from the doctors.

At twenty-one years old, now 2015, the doctors finally thought to test me for a thyroid condition after more complaints, and I was told I was ‘borderline‘ hypothyroid with Hashimoto’s antibodies off the charts.

Finally, some answers.

As I was ‘only borderline’, I was left with no thyroid medication for a while longer, which only led to me becoming more unwell, until I complained enough that I was begun on a low dose of Levothyroxine, at twenty-one years old. Five and a half years after initial signs and symptoms and five and a half years of complaining. I hear from others who go untested for decades and wonder how on Earth they manage but also how on Earth the doctors miss it.

It angered and frustrated me that doctors had missed my thyroid condition for so many years or hadn’t even thought to consider me to be at risk for it, when there was a suspected history of it in my family. Despite me complaining of key hypothyroidism symptoms; on-going fatigue, poor stamina, poor immune system, pains in my legs. All the signs were there but it was missed so many times.

Believe me when I say that I really wanted Levothyroxine to work and I was incredibly hopeful.

In fact, I had two great weeks on it where I did start to feel like my old self, but it wasn’t to be long term. I soon plummeted back to feeling worse than before. In fact, new symptoms were forever mounting!

Weeks and months passed where I felt worse and worse the longer I was on it.

My mental health was devastating. Anxiety and depression took complete control of my life. My work life, social life and ability to do simple tasks were affected, as I had over twenty symptoms affecting every aspect of my life. As a twenty-two year old, it was devastating. I watched my friends living their lives while I became bed-bound and living in a haze. There was also an aspect of dissociation where I felt as if I was watching myself and my life crumble from an outside view. It was incredibly surreal.

I was missing days of work every single week. My relationship, which I had been in since I was sixteen years old, was being strained. My personality was changing. My friendships were under strain. I was suicidal as I sat and thought “Is this all there is for me?”

Was this how my life was going to be? 

At such a young age, when I should be making plans for the future and enjoying my youth, I was instead debating whether I could really go on living this existence. I was surviving, not thriving. I was coming close to living a life of disability for a condition they say is ‘easy to treat’, at twenty-two years old.

The doctors told me that the Levothyroxine was fixing everything, that my TSH was now normal, so any lingering symptoms were “all in my head” and I needed “to let it go”. I’d never felt so insulted and angry. I was not an attention seeker nor making it up. Why on Earth would I?! I knew my own body and I knew something wasn’t right. I knew the medication they gave me was not working.

I started looking for other patients to discuss how they were doing on Levothyroxine, as well as reading online and buying a lot of books about thyroid disease. I read about another medicine, called NDT (Natural Desiccated Thyroid), which contained T3 and I wanted to try it. It sounded like the right fit for my body. I was so desperate to feel even a tiny bit better, that I felt I had nothing to lose. My life was in tatters but this gave me hope.

I started my self-sourced NDT and within a week or so, started feeling much better. My symptoms disappeared one by one over six weeks and thankfully, my mental health also improved hugely. People were shocked at how different I was. I was back in work without interruptions and I was living a regular twenty-something’s life. Yet, no GP at my surgery or the endocrinologist I saw would prescribe it for me. They wouldn’t even discuss T3 medication.

And so, I continue to self-source, which is of course hugely non-ideal and can be risky and dangerous. But what choice do I have? I hope to have it prescribed one day by a private doctor, but we all know how expensive that tends to be and I’m unfortunately not in the position to afford it yet. But this is what I need to live.

I don’t blame any patient who has to self-source or fight for their thyroid medication because I know it’s not a choice for many of us who just need to keep our jobs, a roof over our heads and address the mental health effects poor thyroid treatment has done to us.

Because for me, without the medication I need to feel well, I wouldn’t be able to work or function like any other human being and I wouldn’t still be on this Earth. I would have acted on those suicidal thoughts by now.

A study in 2018 demonstrated that Levothyroxine was actually associated with a lower quality of life in those with Hypothyroidism. Yet it’s the only medication routinely prescribed here in the UK and as a result, many people have to go private for another type of medication or even buy their own thyroid medication, to get their lives back. Like me.

I need to be able to get out of bed, to work and function like a regular adult. It’s not a choice. It’s a last resort when the medical system has hugely failed us and for many it’s not something they’re even comfortable doing, but do it just to keep themselves alive.

How is it OK that so many thyroid patients are denied the medication they need to function properly, so they take to self-sourcing it, in order to get better?

How is it OK that just as many thyroid patients aren’t comfortable self-sourcing the thyroid medication they need (which is completely understandable), so they remain very unwell without it?

It’s appalling that all over the world, incredibly unwell people get to the point where they feel that their only option to getting better and being able to function like other members of society, is to source the medication doctors refuse them.

Lives are shattered and devastated, jobs affected, divorces served and relationships damaged from the strains of this condition and people left very mentally and physically unwell from the lack of proper Hypothyroidism treatment and management. How is this OK?

This is where my own thyroid advocacy work comes in.

My plan is to help others by sharing what I learn as I go along on this eventful thyroid journey myself, whilst empowering others to be their own thyroid advocate too.

It also forms the basis of my first book: Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired, which was an Amazon Top 10 Bestseller and #1 New Release.

Included in my book:

● A relatable recounting of my personal journey back to good health with hypothyroidism and Hashimoto’s
● The most important information I’ve learnt along
● Including chapters on thyroid medication, blood tests, supplements, mental health
● A chapter speaking to our friends and family
● Motivational and uplifting passages to support you in your own journey
● Chapters on dealing with your diagnosis and remaining in work with hypothyroidism

You can find it on Amazon, or in my Facebook shop.

Whilst advocates, charities, thyroid experts and more work to change how thyroid disease is diagnosed, treated, managed and looked at, I also believe it’s important to educate and empower thyroid patients themselves, in order to get more people living well with hypothyroidism.

We have a long way to go in changing how we’re treated, so in the meantime the very least we can do is educate and empower ourselves. If I hadn’t have done that, I wouldn’t still be here.

Rachel Hill
Writer, Author and Thyroid Advocate
TheInvisibleHypothyroidism.com