Navigating Life with Hypothyroidism: Insights, Support and Advocacy.
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This week, I wanted to cover some fundamentals in thyroid disease. The two biggest reasons why so many of us still feel unwell despite being on thyroid meds. The two biggest reasons why my health was on the floor.
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Where we’re massively letting thyroid patients down.
Let me share two major things I had to uncover, understand and resolve before I could get better with thyroid disease.
TSH stands for Thyroid Stimulating Hormone. It is a pituitary hormone, not a thyroid hormone, and as such, gives an indication of your thyroid levels but that’s all. It doesn’t give the full picture.
And I was initially told that I was “only borderline” hypothyroid and didn’t need treatment for it (and that I was “fine”) because my TSH level was “only just” outside of the normal reference range.
The range went up to 4.5 and my level was 9 by the way…
And so anyway, I felt terrible.
But as my TSH wasn’t too bad, I was told to come back in a few months’ time for a review.
When I was eventually retested, my TSH was about the same, but with my FT4 and FT3 levels now tested (which I recommend should always be checked) they were very low. Going by TSH alone was giving my doctor the idea that it was mild. It wasn’t. And I certainly didn’t feel ‘only mildly unwell!’
When I was eventually started on thyroid medication, I was given Levothyroxine, which is the standard first treatment option. It brought my TSH back in to range, and this is where the same mistake was made again - the focus was on my TSH being normalised (not optimised) and there was no consideration for my FT3 and FT4 levels.
However, according to the doctor, since my TSH was now within the normal range, this was good enough, and therefore, any ongoing symptoms I had must be down to a ‘low mood problem’… so I was gaslit, given some antidepressants and told it was all in my head. Helpful!
Months passed and I continued to feel unwell, only getting worse.
Even though the doctor continued to tell me that levothyroxine was the gold standard of thyroid treatment and TSH was the gold standard of thyroid testing, I just didn’t seem to benefit from this. Turns out that my body couldn’t convert the T4-only meds to enough T3 (active thyroid hormone).
Maybe I’d been left hypothyroid with no treatment for too long by this point?
Anyway - staying on Levothyroxine and only testing TSH were the two biggest things stopping me from recovering from the devastating symptoms of autoimmune hypothyroidism.
T4-only meds such as Synthroid and Levothyroxine do not work for everyone. A lot of people, yes, but not everyone.
I learned that I could be well, happy and actually live life again on a different medication, Natural Desiccated Thyroid, which gives you direct T3.
I no longer had to heart-achingly drag myself through painful, lonely and horrendous days anymore.
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.
In February of this year, I made a promise to prioritise regulating my nervous system and creating a better relationship with food, as part of my 2026 goals. Almost 6 months on and I feel the difference is night and day.
I have better routines in place, my phone usage is under control, I no longer feel bloated and overwhelmed.
Just a reminder that you’ll never regret starting whatever it is you’re putting off.
🗡️ The Overlap Between Low Iron & Hypothyroidism
✍️ What My Thyroid flares feel like
🩸 Are You Making These Thyroid Blood Test Mistakes?
My most popular posts in the last week were…
MUSCLE pain and thyroid issues - This has become my first 1 MILLION view reel on Instagram!
Northern Ireland is consulting on restricting or stopping several medicines in primary care.
Liothyronine is not a “low‑priority” item. It’s essential for thyroid patients who don’t respond to Levothyroxine alone.
Grouping it with things like Bio‑Oil and probiotics is misleading and risks real harm.
If you’re in Northern Ireland and willing to help lead or coordinate a response from thyroid patients, please respond to the consultation before October.
Join the ITT group and ask to get involved here.
Many people diagnosed with a thyroid condition are over 50, so I wanted to include this important news. If you’re asked to complete a bowel cancer screen, don’t skip it.
You can read more about this here.
Our nails can perhaps surprisingly tell us quite a bit about our health (and thyroid health). Weak, brittle nails which break, split and peel easily can be a common sign and symptom of hypothyroidism and or Hashimoto’s.
As this newsletter is a free issue, next week’s newsletter will only be viewable to paying subscribers.
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Please Note: The information included in this publication is not meant to substitute the clinical guidance provided by a healthcare professional. Rachel Hill / The Invisible Hypothyroidism is not medically qualified and does not offer medical advice. I suggest consulting your doctor before making any changes to your lifestyle or health regimen. By consuming this newsletter, you agree to this disclaimer. This newsletter may contain affiliate links where I earn a small commission if you purchase through them. This does not change your user experience or the products I link to, but does support the ongoing publication of my work. None of the statements in this publication should be taken as an official endorsement of any particular product. Disclosure statement.
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