Originally published on 1st June 2016 Last updated on 22nd April 2024
Being on Levothyroxine and my doctor only testing TSH were the two biggest things stopping me from recovering from hypothyroidism and Hashimoto’s.
My Experience With TSH
In the above photo, I was incredibly ill. I was hypothyroid with low iron stores and was refused medication for my thyroid. I was told I was ‘only borderline‘ based on my TSH level of 9 and so didn’t need thyroid medication. I was told that iron tablets would fix everything.
I waited a few more months and got no better. I actually felt a lot worse. I was then put on Levothyroxine and I was officially ‘mildly hypothyroid’ going by the TSH test (still a 9).
Does it look ‘mild’ to you?
My Experience With Levothyroxine
Levothyroxine, considered the ‘gold standard’ of medicine, made me feel even more unwell. Doctors told me that it was all I needed and I was just depressed. They told me my complaints of it not helping me were all in my head. They told me I was ‘fine’.
Do I look ‘fine’ in that photo? My under-eyes are purple-black, eyebrows thinning, my skin dry and tight, I look sick. I look hopeless. I look unwell.
But doctors gave me the medicine they said would fix it all and tested my TSH which is ‘all that’s needed to be done’. My TSH came back ‘fine‘. So I was ‘fine‘.
My Breaking Point
After hitting a point where I couldn’t bear to live any longer, in physical pain 24/7 in every inch of my body, where I couldn’t take being so unbelievably exhausted that every blink I took was a conscious effort to open that eyelid again, where the thought of work, socialising and keeping up appearances made me break down because I couldn’t pretend I was ‘fine’ any longer, where I was told I was a hypochondriac and I shouldn’t do my own research, I decided to take back my own health and be my own advocate.
I learned that doctors going by TSH alone are leaving many thousands of people undiagnosed and under-treated. I learned that T4-only medicine like Levothyroxine doesn’t work for everyone and according to Thyroid UK, resolves just 7% of hypothyroid symptoms in those surveyed. [1]
I learned that I could be well, happy and actually living my life again on a new medication, Natural Desiccated Thyroid. I no longer had to heart-achingly drag myself through painful, lonely and horrendous days anymore. I wasn’t doomed to a life of being suicidal or feeling close to ending it all. And most importantly, I learned that I deserved to feel well again. I deserved to be listened to. I deserved to receive a treatment that made me better. I deserved to be treated like the individual that I am. And so do many other people who are undiagnosed and inadequately treated from thyroid disease.
Most people don’t even know they have hypothyroidism. As many as 60% go undiagnosed according to the American Thyroid Association.
On Natural Desiccated Thyroid, my health had recovered hugely in just a few months. My physical and mental health hugely improved. I was almost fully back to the old me. My heart breaks when I think about the Rachel who couldn’t bear to live another day of being so unwell and so fed up. When I think back to how much physical and mental pain I was put through, because of this ‘gold standard’ medicine and TSH test, it makes me so, so angry.
Yes, TSH is an important part of thyroid testing but that’s just it – it’s part of the thyroid panel. It should be used alongside the other tests (Free T3, Free T4 etc.)
I will not stop spreading the word about this until people are treated like people. It’s an absolute scandal that medical professionals are leaving many, many people living a sub-standard quality of life, or like in my case, no quality of life at all. I was twenty-years-old and had to be aided up stairs. My brain was so starved of thyroid hormone, that brain fog and confusion impacted my ability to do my job. I was given the diagnosis of Chronic Fatigue Syndrome, because I couldn’t walk more than ten steps without needing to sit down or feeling as if I was going to collapse.
A study in 2018 showed that Levothyroxine was associated with a lower quality of life in those with Hypothyroidism. [2]
Yet it’s the only medication routinely prescribed here in the UK and as a result, many people have to fight on the NHS (jumping through hoops), go private for another type of medication or even buy their own thyroid medication from abroad, to get their lives back.
A paper titled Time for a reassessment of the treatment of hypothyroidism concluded:
“It appears that we are witnessing a consequential historic shift in the treatment of thyroid disease, driven by over-reliance on a single laboratory parameter TSH. The focus on biochemistry rather than patient symptom relief should be re-assessed. A joint consideration together with a more personalized approach may be required to address the recent surge in patient complaint rates.” [3]
Does that sound like the ‘gold standard’ of testing and treatment?
Gold standard definition: “A thing of superior quality which serves as a point of reference against which other things of its type may be compared.”
Read more about my personal experiences of finding the right thyroid medication for me, in my book: Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired.
You can click on the hyperlinks in the above post to learn more and see references to information given.
Please remember that if you’re a thyroid patient living with poor mental health or lingering physical symptoms, that you don’t have to live this way. To address why you may still be feeling unwell (often despite being on thyroid medication too), please see this article and go through each suggestion, putting your thyroid jigsaw back together.
References:
[1] http://www.thyroiduk.org.uk/tuk/campaigns/Patient-Expereince-Survey.html
[2] https://www.healio.com/endocrinology/thyroid/news/online/%7Beb193222-2795-4321-8761-607131d2f743%7D/levothyroxine-therapy-associated-with-lower-quality-of-life-in-hypothyroidism
[3] https://bmcendocrdisord.biomedcentral.com/articles/10.1186/s12902-019-0365-4
