I am a 41 year old mother of two girls, and this is my story:

I was finally ‘tried’ on Levothyroxine in the early noughties when I was in my mid twenties. I believe I needed it since my early teens when the symptoms of hypothyroidism first appeared (constantly being tired – at 13 years old! – feeling cold, nails flaking, brain and concentration suboptimal/ brain fog, being in pain). Despite visiting my GP regularly as a teenager and blood tests being run, nothing was done because my tests always came back ‘within range’.

Finally, after years of excessive work hours and a flu virus I never quite recovered from, in my mid twenties I collapsed with ME/ CFS and Fibromyalgia. This was in 2003. Having done some internet research, and noting the similarities between these conditions and Hypothyroidism I asked my doctor if I could try T4 Levothyroxine.

I was prescribed 25mcg as a starting dose (probably just to humour me), which was soon raised to 50mcg as it seemed to be helping. Initially, my mind felt clearer and my chronic pain decreased ever so slightly. Eventually, over time this prescription rose to 100mcg, and even 150mcg during pregnancy as my blood tests finally showed my thyroid was struggling on a lower dose.

But the hypothyroid symptoms never really went away, and little by little got even worse: I have spent 2003 until today unable to work due to the severity of my health conditions. Although I’m now better than I was in 2003 (after all, it’s all relative!), even as recently as this year I have been mostly housebound and fairly brain-dead, unable to spend much time out of bed due to chronic pain in my joints and muscles, exhaustion, and because of debilitating brain fog.
I repeatedly visited my (very nice!) GP over this recent couple of years of hypothyroidism hell (2015-2017), feeling and knowing full well the issue was my thyroid. However, my GP told me that all my blood tests came back ‘within range’ – including my mineral and vitamin levels.

In June 2017 a friend sent me a Daily Mail article explaining that people were being taken off T3 meds due to the pharma company increasing the cost to the NHS. In this article, the stories of the women who for whom T4 hadn’t worked rang so many bells that I decided to research more about T3. In my many years of taking T4 Levothyroxine, nobody had every mentioned T3 to me, so I had never heard of it before.

The deeper I dug, the more T3 sounded like the medication for me. My  GP dismissed T3 as being ‘expensive’ and ‘inconclusive in its efficacy’ and refused to do more extensive thyroid blood tests (rather than just TSH), so I knew I was on my own. He did however run an updated test of my vitamin and mineral levels, which were all shown to be ‘within range’ again.

During my thyroid research in June 2017, every time I googled my own questions about T3 and hypothyroidism the Stop The Thyroid Madness website appeared. Thyroid UK forum on the Health Unlocked website also flashed up. So I read through STTM (so much incredible information!).   There, I learned which private blood tests to buy to make sure my thyroid levels would be correctly assessed, and a fortnight or so later uploaded my results.

I learned that T4 wasn’t working for me (surprise, surprise), and that T3 would help. I also learned that even if I had been taking the right amount of thyroid medications they wouldn’t have worked properly because my iron levels were so low (thyroid meds need iron to be effective). I was also deficient in other minerals/ vitamins.

Of course, my GP had read down the list of my extensive vitamin and mineral blood test results, even done these same tests more than once over the 24 months, and had mentioned none of these deficiencies to me as everything was ‘within range’. But once it was pointed out, it was absolutely obvious even to a novice such as myself that my iron levels (amongst others) were through the floor! So I dosed up on the essential supplements as advised by moderators, and also went about sourcing and ordering T3 from abroad

By the time the T3 was delivered, a few weeks had passed, and I was already feeling a little better from my vitamin and mineral levels having improved slightly. I knew with this healthier baseline I was ready to start the T3.

Within a week of taking T3, my 15+ years of chronic pain had almost gone. I was no longer in constant pain; I was warm and not absolutely freezing; my brain was sharper and I could leave the house AND stay awake for a longer periods of time (though I still needed my daily ME sleep(s)).

Three months after adding T3 to the T4, I’m generally pain free, and although my mind is sharper, the brainfog is still a huge issue: I believe my hypothyroidism has been badly managed and under-medicated for so long that my brain been damaged. I don’t think I’ve reached the point of metabolic dementia, but I am fairly sure my cognitive issues could have been avoided had I started on T3 and T4 when I was a teenager or in my twenties.

My life has improved immeasurably since starting T3 just a few months ago, and it saddens me to think that there are so many people like me with mismanaged hypothyroidism whose doctors – and even endocrinologists – are so ignorant about the correct treatment for their patients. I also find it terribly upsetting that those people who already know T3 works for them are being taken off the drug, and sent spiraling into disability like I was – and remain today – due to misleading TSH tests and ineffectual T4 treatment.

I suspect that had I not suffered from undiagnosed hypothyroidism from my teenage years, and had I not endured mismanagement of my hypothyroidism through my twenties and thirties, that I might have had a healthier foundation of which to recover sooner from ME/ CFS and Fibromyalgia.

However, for more than 20 years, I have lived with these invisible illnesses and been too ill to work, too sick to play with my children, and too disabled to leave the house. And although the symptoms of ME/ CFS and Fibromyalgia go hand in hand with those of Hypothyroidism, I do believe my diagnosis of these conditions is correct.

Correct monitoring and medication of my Hypothyroidism on the other hand, would have greatly helped in my recovery sooner. It would also perhaps have stopped my brain from being irreparably damaged (as I feel it has been), keeping my thinking joined-up, preventing my speech from slowing and slurring, and instead enabling me to finish my sentences.
Thankfully, I have discovered T3 at age 41, which should theoretically give me another thirty to forty-odd years to enjoy an (almost!) pain-free existence, a life outside the house, playtime with the kids before they turn into teens, health good enough to hold down a job, and a brighter future altogether!

Thanks to Stop The Thyroid Madness, Thyroid UK and its moderators, I turned 20 years of pain, depression and ill health around within a week. It’s now 4 months later and I’m a different woman. I imagine this time next year I’ll be next to normal.

So please NICE, consider making it mandatory for thyroid testing to include FT4, FT3, TT4, rT3 and vitamins and iron levels. Similarly, please allow for the prescription of T3 for those of us for whom T4 is clearly not working.
Thank you for stepping in where the medical profession has failed thyroid patients so shockingly: I owe you guys my life – literally!

I’m so grateful to have learned that there IS an effective treatment for Hypothyroidism and unsurprised that as suspected, it’s not T4 alone.
Yet more heartfelt thanks,
Abi.

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