Levothyroxine and TSH; ‘The Gold Standard’

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Originally published on 1st June 2016
Last updated on 11th February 2019

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

Rachel Very Ill From Levothyroxine

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 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 got worse. I was then put on Levothyroxine and I was officially ‘mildly hypothyroid’ going by the TSH test. 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 eyes are purple-black,  eyebrows thinning, my skin dry and tight, I look gaunt and generally very 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 learnt that doctors going by TSH alone are leaving many thousands of people undiagnosed and under-treated. I learnt that T4-only medicine like Levothyroxine is massively inadequate and according to Thyroid UK’s research last year, resolves just 7% of hypothyroid cases. [1]

I learnt 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 learnt 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.

Rachel Struggling With Mental Health Thyroid

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 even 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 go private for another type of medication or even buy their own thyroid medication, 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.”

Be Your Own Thyroid Advocate Book CoverRead 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

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5 thoughts on “Levothyroxine and TSH; ‘The Gold Standard’

  1. I’m in UK, took a visit to gynaecologist from Spain covering my usual gynaecologist she explained that although I was borderline I could be below the line most days but the test day above or on it. Speaking to my GP I was given Leo and had to Have blood tests every 6 weeks. Another GP said I’d need at least 6 months to see if it was working. Normal blood tests ensued. Fast forward 1 year after a hysterectomy as PMT, painful joints, fortnightly periods, I had water infections, open surgery wound, stinky puss but back in work 40 hours a week and instant menopause, after blood tests an urgent call to increase my levo to 100mg. 2 years later, stroke like symptoms rushed to hospital and diagnosed, Functional Neurological Disorder but needed MRI and blood tests. Everything came back normal. 9 months wait saw neurologist as having seizures. Referred to Movement Specialist, dealing with Parkinsons, MS & Epilepsy as FND mimics this.. I mimicked all. COVID hit so finally diagnosed with F.N.D December 31st 2020. I lost my job December 2021 as I’d been off sick for 2½years dismissal due to ill health. Housebound, can’t walk and wheelchair user IF/WHEN I can get someone to take me out. I had a carer so was going out once a week for hour or 2 but pushed my symptoms of daily pain, headaches, fatigue into seizure mode. Recently ambulance called poor treatment as Everything shows normal except im spasmodic and struggle with breathing. Still on same Levo. Mentally rock bottom. Noone listens, noone helps how I need it, under social services.. they seem to just ignore me now. I’m 53 in June, but suggested I consider sheltered housing. I have a mortgage. Benefits are in a mess as I had some money as a work payoff. Sorry to go on, but reading about Levo is this possibly an underlying issue for this FND that THE NHS have no knowledge of, nor resources to be trained in, here in Wales. Sorry if I have wasted your time and I am just looking for help, everywhere. I exist you see, for my dog and cat. I have a son but he had to move out for his own sanity. He does visit he stays and helps at times. However I’ve worked all my life. Mental Health services told me I’m not crazy sent some leaflets and said go back to GP if I feel lost again… the leaflets weren’t even relevant. THANK YOU.

  2. My husband has been prescribed these, he’s currently receiving treatment for mets liver cancer. He’s been really poorly, he shakes nearly all the time. When he explains this to the professionals they just say…it’s down to the treatment & perfectly ‘normal’. So ALL cancer patients shake all the time then? I’m not allowed to go with him when he has treatment so I phone them, it’s the same answer! Has anyone else had this side effect?

  3. At last thanks for highlighting this… I am experiencing this right now for over 10 years on 50mg levothyroxine. Never changed once in all that time. Now getting investigated for systemic sclerosis and also have type 2 diabetes on one tablet a day. Sometimes I wish I could just sleep away but my husband and lovely daughter keeps me here… I’m in uk and found no medical professional listens to me about feeling ill.

    1. It seems quite a few of us can’t convert the T4 to T3… which means that testing TSH and only testing T4 levels doesn’t give the full picture. I was told for years that I was ‘fine’, my numbers looked ‘great’ and therefore the NHS/ my GP couldn’t do anything else (apart from anti depressants and statins)… I now take NDT and finally feel human again. It only took 20 years… 😭

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