If you’re among the literally millions of women living with a Thyroid issue, there’s a good chance the phrase T3 treatment makes you very annoyed indeed. Apols if we’ve sent your blood pressure through the roof. If, though, your Thyroid has yet to make its presence known, allow us to welcome you to the topsy-turvy world of Thyroid Hormone Replacement. Or as it’s perhaps best known, Where’s the T3?
Thyroid hormones: A primer
Now, regular Hormonas are likely familiar with the vagaries of their Thyroids. This little bow-shaped gland, nestled at the base of your throat, is in command of most of your Endocrine system, and as such, controls pretty much every system in your body. Cardiac health? Check. Reproductive health? Check. Everything in between? Very much check.
And it does all of that by producing just two hormones, T4 and T3. The first, T4, sends messages and information to and from your cells, under orders from your Hypothalamus. It’s also the hormone your Thyroid produces the most of, by quite a large margin.
But it’s T3, the second of those hormones, that actually changes the way your body is working at a cellular level. It’s what medical types refer to as biologically active. So if your Thyroid gets the message that things are a bit sluggish, it can produce more T3 to speed you up, and vice-versa. Here’s where it gets interesting though. If you’re all out of T3, and don’t have a Thyroid issue, your T4 can transform itself into T3 to help get you where you need to be. And it’s this magical component of T4 that seems to have had a lasting impact on treatment.
Treatment: T3 or not T3?
Historically, once your Thyroid was removed, either due to disease or inactivity, or if it wasn’t working quite fast enough, treatment consisted of both T4 and T3. Admittedly, it was from the dried Thyroid gland of a pig, but it worked. Mostly. As Tara Riddle from Improve Thyroid Treatment explains, “With NDT – Natural Desiccated Thyroid – you didn’t know if you were going to get the exact dose you needed. It wasn’t consistent.”
Then, around the 1950s, synthetic versions of T3 and T4 hit the market, pushing the pig Thyroid out of favor. Which, if you happen to have any religious or dietary restrictions that mean you can’t take it, must have been a relief. Around 20 years later, though, Endocrinologists discovered the magical transformation quality of T4. And almost overnight, combination Thyroid replacement therapy became monotherapy. That is, one single daily dose of T4.
Why is T4 alone such a problem?
Well, for a good portion of people with Thyroid issues, it probably isn’t. And we say probably because, in the U.K. at least, there’s no data about how well Thyroid medications are working. We know. Anyhoops, there are lots of reasons why T4 might not be working for you, and you might not even know.
As Hormonas will know, everyone’s optimal hormone levels are different, so while some will thrive on a single T4 dose, others will feel off all the time and have no idea why. Still others will feel absolutely horrendous. And that’s when T3 should be offered to you. It’s a measurable hormone and the symptoms are clear. But in many cases, and for many years, it simply hasn’t been on the table. And the thing is, it works.
It can take a little finessing when it comes to the correct dose, admittedly, but adding T3 to T4 therapy can make a huge difference to the quality of your life.
And that’s something Improve Thyroid Treatment’s Tara Riddle knows all too well.
Tara’s T3 story
Tara is one of the leaders of ITT, a patient advocacy group that started on Facebook and now graces the Houses of Parliament on occasion. And one of the reasons she got so involved in U.K. health policy is simple — her own health.
“I had Graves’ disease in the 1980s, and had a couple of years on anti-Thyroid drugs, but it kept coming back.”
For childcare and logistical reasons — she’d just moved to a new area — Tara decided against surgical removal of her Thyroid, opting instead for a less invasive solution. “I had Radioactive Iodine. That knocked me completely underactive. I could barely crawl across the floor to the doctor’s surgery.”
That was a result, Tara’s doctor explained, of the slight overdose of Radioactive Iodine patients are generally given, to make absolutely sure their Thyroids stop working. That though, immediately puts them into extreme underactivity, just as surely as any surgery.
Step forward synthetic T4. It’s one of the world’s most prescribed drugs, and like most patients, Tara was given a single daily dose. “I was okay, to be fair, although my dose went up and up. I was on 175mcg by the end. “
To put that in perspective, the average dose in the U.K. is anywhere from 50-200mcg, while the maximum dose in the U.S. is 200mcg. Tara definitely wasn’t well.
“That was in 1990. In 2014, I knew there was something wrong. It’s hard to list all of the symptoms, but I was barely functioning. Looking back, I can see how ill I was for all that time, but it creeps up on you, day by day. I couldn’t stand up without holding on to things, I was so weak.”
T3 or not T3?
After a two-year fight, Tara finally got hold of some T3 from the U.K’s NHS, and the timing couldn’t have been better.
“By that point, I’d thought, if this doesn’t work, I don’t know what will, and I didn’t care if I was here or not. After a few weeks on T3, my life was completely back to normal.”
Unfortunately, that didn’t last. Not long after, T3 therapy was withdrawn from Tara and thousands of other patients. Having no idea what to do, she turned to one of the country’s Thyroid charities, using their patient forums as a resource. What she found there may have saved her life. “I learned on there that you can buy T3 abroad, so… I bought some! It was the only thing I could do. And that kept me going until 2020, when I got my NHS prescription.”
Why did Tara have to fight for a treatment that so clearly helped? In the U.K. at least, pricing issues meant that many patients simply stopped being able to access this crucial medication. The drug company concerned was fined for price fixing, having hiked the cost of T3 by some 6,000%. The cost has since dropped, even if prescribing rates remain the same.
And in a story that eerily mirrors Hormona’s, after sourcing her own T3 from overseas, Tara became joint leader of the Improve Thyroid Treatment group, as well as another local patient group in Norfolk, U.K. They’ve successfully campaigned for T3 reinstatement locally, and produced a series of heavyweight reports for both the British Government and the NHS about T3 and its necessity.
Hormona’s T3 inspiration
How does Tara’s story mirror ours? Well, our very own Karolina Lofqvuist, Hormona co-founder and T3 enthusiast, had a similar fight in her hands when her health went mysteriously downhill.
Splitting her time between England and Sweden, she started to notice that her health was failing: “I felt so bad for such a long time. I didn’t recognize myself.” After seeing doctors in London, though, Karolina felt that she wasn’t getting the whole picture when it came to her hormones. And she was right. In the U.K., Thyroid tests don’t generally include T3 levels. In Sweden, though, they very much do.
You’re probably ahead of us here, but Karolina got a full Thyroid function test in Sweden, and lo and behold, she had an issue. “The U.K. doctors had failed to notice my low T3, despite the fact that I put on 10kg and clearly was suffering.”
Combination is everything
But, as with Tara, getting a diagnosis didn’t mean Karolina got any better. Originally prescribed just T4, it was years before a Swedish doctor finally recommended combination synthetic T3 and T4 therapy. But this is where the two stories diverge slightly. As Karolina says, “That helped a little, but I still had all my symptoms.” Then, she had a revelation.
“I was reading a magazine article about a woman with hormone issues who had gone to a clinic in Holland, where they tested all her hormone levels, vitamin levels, everything that can cause these symptoms. And the woman eventually was prescribed desiccated pig thyroid as treatment.”
And that was it for Karolina. She immediately set about tracking down the doctor, the tests, and a pig thyroid prescription. What she discovered, though, was that just as in the UK, Sweden does not offer the treatment. But the Netherlands does. And they’re not alone.
“It’s very common in the U.S.,” Karolina explained. “One American doctor I spoke to about it said everyone they treat takes it.”
And it’s this struggle to get treatment for what are essentially hidden conditions that inspired Karolina to create Hormona. And the rest, as they say, is history.
The future of T3 treatment
Clearly, then, some Endocrinologists are coming back around to T3 treatment. In fact, both European and American Endocrinology societies already recommend T3 treatment in cases where T4 alone isn’t working. But it seems that doctors on the ground haven’t quite gotten the memo. How do we know? As Tara recounted, some physicians still believe that “some people just have to accept a lower quality of life,” rather prescribe T3. That’s unacceptable as far as we’re concerned.
Is it money? Yes, as we mentioned, T3 was the subject of a price-fixing controversy around 2016, when drug companies artificially inflated the price. Following large fines, the cost dropped considerably. So much so, that it’s no longer considered prohibitively expensive.
So what gives? As it stands, we’re not sure. Yes, there’s a chance the fact women make up the majority of Thyroid patients plays its part. As Karolina put it, “Millions of women want T3, but have no access to it.” But there has to be more to it than that. ITT, alongside other U.K.-based Thyroid patient groups, has been involved in policy discussion in for years, producing serious reports proving the necessity of T3 as a second-line treatment. Despite that, little has changed. And that’s with the consent of the NHS to prescribe T3 in Britain — but somehow each part of the country set its own T3 rules, and they mostly consist of saying no.
For Tara, that’s a little bizarre. “T3 is a normal medication that can be used. The phrase that we’re trying to get the NHS to use is “second-line treatment.” We never wanted it for first-line treatment. All we want is for doctors to say, “Okay, to start with, try T4. But if it doesn’t work, try this.” Doesn’t sound like much to ask for, does it?
T3 treatment: What now?
Stick with us, gang, because until the medical profession as a whole comes around, Hormona has big plans to redress this massive health injustice. In the meantime, keep an eye on your Thyroid health, because you never know when it’s going to start playing up.
And if T3 is what you need, groups like ITT can help, including providing advice if you’re unable to access the medication you need. For instance, did you know that private doctors in the U.K. can prescribe T3? We know. But it’s a start…
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Written by
Emma Matthews
