Hi Reader,

THE DAY I WAS TOLD IT WAS ALL IN MY HEAD

I was lying on a hospital trolley unable to move.

I'd come in by ambulance. I couldn't walk. I couldn't get up. The pain was unlike anything I had ever felt in my life. The kind that takes over everything.

They gave me morphine. IV paracetamol. Something in the diazepam family, I think. The kind of medication that is supposed to knock pain flat.

It wasn't touching it.

I was still sweating through the sheets. Still completely unable to shift position. Still unable to do anything except lie there and try to breathe through it.

And then a nurse looked at me and said the words I have never forgotten.

"Well, we've given you everything we can. So there must be something else going on. It must be in your head."

THEY TOLD ME TO GO HOME

I lost it.

Not because I was being difficult. Not because I was dramatic. Because I was in the worst pain of my life, I could not get off the bed, and the person supposed to help me had just decided the problem was my mind.

They told me to go home.

I asked how. I had arrived by ambulance. I could not walk. I could not stand.

They begrudgingly arranged another ambulance. Two paramedics had to carry me into my own house.

And the official medical position was that nothing was actually wrong with me.

THEN I GOT AN MRI

The technician came out to meet me, took one look at how I was moving, and didn't wait for the scan results to decide whether I was credible.

He just believed what he could see. He helped me find a position I could tolerate. He treated my pain as a fact, not a possibility. That small thing made more difference than I can properly explain.

When the results came back, they showed a badly extruded disc that had completely compressed the sciatic nerve. The report stated clearly that this was the cause of the pain. And from that moment, everything changed. Suddenly there was urgency and care and a proper plan.

The pain hadn't changed. The situation hadn't changed.

The only thing that changed was that now there was a piece of paper confirming what I had been telling them all along.

I have had a caesarean. I have had other surgeries. I have never experienced pain like that disc. And I was told, while drenched in sweat and unable to move, that it was in my head.

Because the drugs hadn't worked the way they expected, the next step wasn't to question the drugs, or the dose, or whether something more serious was happening.

The next step was to question me.

THIS IS BIGGER THAN MY STORY

I think about that day a lot now. Not because of the pain. But because of what it taught me about how medical systems work when they run out of easy answers.

When the evidence doesn't fit the expected outcome, it is often the patient who gets questioned. Not the treatment. Not the assumption. Not the guideline.

The patient.

And I see this happening constantly in the thyroid world.

Someone is on Levothyroxine and still feels terrible. Exhausted. Unable to think clearly. Struggling every single day. They go back to their doctor and say, I am still not well. Can we talk about T3?

And I want you to know what the official NHS guidance tells that doctor to do next.

WHAT THE THYROID GUIDELINES ACTUALLY SAY

Before anything else, before any conversation about whether the medication is working, the guidance tells the doctor to confirm that the patient is taking their medication properly.

Check their adherence. Establish how many doses they've missed. Make sure they're taking it an hour before food. Make sure they're not taking it near calcium or iron.

Not, could this treatment be failing this person.

First assumption: maybe they're just not doing it right.

AND THEN IT GETS WORSE

If the TSH comes back within the so-called normal range, that's often where the investigation ends. Never mind that TSH alone does not give a full picture of how someone's thyroid is actually functioning. Never mind that thousands of people with a perfectly normal TSH feel absolutely dreadful every single day.

The number is in range. So officially, you are fine.

And if you go back again and say you're still not fine, the same guidance allows a doctor to trigger what they call a retrospective review of the original diagnosis. To question formally whether you were ever genuinely hypothyroid in the first place.

If they decide there is no biochemical evidence, based on that single flawed TSH test, the recommendation is to withdraw all thyroid hormone preparations.

Read that again.

You are already on medication. You are still suffering. You go back asking for more help. And the system's response, written into official guidelines, is: according to a flawed test, maybe you were never really ill. Let's take away what little you have.

IT IS THE SAME LOGIC

We gave you the drugs. They should have worked. So the problem must be you.

You can read this guidance yourself. It is not hidden. It is published on the NHS England website.

​https://www.england.nhs.uk/long-read/liothyronine-advice-for-prescribers/​

Look under the New patients section.

YOU ARE NOT IMAGINING IT

I am not sharing this to make anyone feel hopeless. I am sharing it because you deserve to know what you are dealing with. Because when you understand the system, you can stop blaming yourself for not being believed.

You are not imagining it.

The system is just not built to look hard enough.

P.S. This is exactly the kind of thing we talk about openly in the Hypothyroid Recovery Hub. If you want to be in a space where your experience is taken seriously and you are never made to feel like it's all in your head, come and join us. Free trial, no obligation: www.skool.com/hypothyroid/about​

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