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About Rachel
Start Here!
- Symptoms of Hypothyroidism and Hashimoto’s
- Order Your Own Thyroid Tests
All Articles
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- About My Books
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Why Do I Feel Worse on Thyroid Medication?

Why Do I Feel Worse on Thyroid Medication?

I have conversations like this more often than you would believe: “Can I just stop taking…

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“Can I just stop taking my thyroid meds?” “

“Can I just stop taking my thyroid meds?”

“Why would you want to?”

“They’re not working anyway. I still have symptoms and I think I actually feel worse. So what’s the point?”

•••

My point is this: you were put on this medication presumably because your thyroid hormone levels were low.

Simply stopping them isn’t going to do anything positive for your hypothyroidism. You’re just likely to get in to an even worse state of health over time. If you stop taking your medication, you can expect your thyroid symptoms such as fatigue, muscle pain, brain fog and hair loss for example, to return and / or worsen.

Therefore, if you feel that your medication isn’t helping, it doesn’t make sense to stop them, but instead, we should be asking WHY they’re not helping you.

Possible reasons:

1️⃣ You’re not on the right medication type / Your current med isn’t working properly.

Not everyone responds well to T4-only meds such as levothyroxine. Some need T3/NDT for example.

2️⃣ You’re not optimised on your current meds.

Has your doctor told you that your lab results are ‘normal’, ‘fine’ or ‘within range’? It’s not the same as “optimal”. A lot of us feel best when levels are optimal and not just in the wide range.

To get to these optimal places within range, you may need a slight increase in your thyroid medication, it a change of medication.

3️⃣ Other things are at play.

• adrenal dysfunction
• low iron, Vit D, B12, selenium, zinc, magnesium
• poor gut health
• poor diet / food sensitivities not yet addressed
• poor sleep
• over exercising

There are many jigsaw puzzle pieces that often need looking at.

4️⃣ Misdiagnosis

Are There Some People Who Genuinely Don’t Need Thyroid Medication Anymore?

Misdiagnosis of hypothyroidism is of course a possibility, as is the possibility of thyroid conditions improving or reversing over time, though this isn’t the case for most diagnosed with hypothyroidism. And if this does apply to you, your doctor should guide you.

•••

📖 Comment “BOOK” for the link to my bestselling thyroid patient book about these puzzle pieces 🧩

- Rachel Hill, thyroid patient advocate 🦋💙

SHARE this video if it resonates with you. 👍

SHARE this video if it resonates with you.

👍 Flare days are much more common than you think, however, many online thyroid creators don’t share them with others because they’re scared about not portraying ‘perfect’ health.

•••

👍 But it’s a fact of life that when you live with any health condition, including hypothyroidism and Hashimoto’s, that they can be under control some days and not-so on other days!

🫶 Flare ups hopefully become few and far between as you get your thyroid condition under control and better managed, but they can still hit us out of the blue.

❓Sometimes we know what triggered them and sometimes we don’t.

❓I’ve had flares when my thyroid condition hasn’t been under control AND when it has. My Hashimoto’s is currently in remission and they can still pop up from time to time.

🧩 Common triggers include:

• overexerting self physically or mentally, as in the case of stress

• consuming a food you have issues with, such as alcohol or gluten or dairy which are common ones with thyroid patients

• catching a cold, virus or other illness.

• pregnancy can also be a cause due to hormonal fluctuations and this demands of your body.

🧩 Common symptoms of a flare:

• increased fatigue

• heaviness

• brain fog

• migraines

• muscle aches and pains

•••

✨Check out my highlight titled “flare ups” for more info on flares.

- Rachel Hill, Thyroid Patient Advocate 🦋💙

“Gluten-free” is a phrase we can’t escape in

“Gluten-free” is a phrase we can’t escape in the thyroid world.

•••

❓Did you know that you could be sensitive to gluten (have it still cause you symptoms) but not be Coeliac?

❓A lot of people with thyroid issues, such as Hashimoto’s, report this. Molecular mimicry is often given as the reason, as it a less processed diet or increased gut health.

🙋‍♀️ I avoided going gluten-free for ages, when I was at the beginning of my thyroid journey. I even started a GF diet and then gave up a few times, before committing to it for the longterm.

🙋‍♀️ But once I did commit to it, I saw so many improvements in my health and thyroid related symptoms, that I’ve not looked back since.

9️⃣ Symptoms that improved on a GF diet for me:
• Fatigue
• Brain fog
• Cystic acne
• Constipation & diarrhoea
• Itchy scalp
• Muscle Cramps
• Irregular periods & non-ovulation (infertility)
• Acid reflux
• Heart palps

🦋 So although I didn’t want it to be true, it really did help me. It also contributed to the Hashimoto’s going in to remission (antibodies coming down from >1300 to almost zero).

❗️There are benefits in screening for coeliac disease before removing gluten. E.g diagnostic tests for coeliac disease require you to be on a gluten-containing diet so that the test can detect any antibodies to gluten.

❗️If you are already on a GF diet when tested for coeliac disease, you will need to reintroduce gluten for several weeks before the blood test, in order to get accurate results.

❗️Having a formal diagnosis of coeliac disease, if you have it, is also important. If coeliac disease is confirmed, as well as a lifelong, strict GF diet, a longterm treatment plan will also need creating by your doctor and dietician to ensure you’re still getting the right nutrients from other foods.

❓ I was tested for coeliac twice, in a gluten-containing diet and both were negative.

•••

👇 What are your experiences with this? And as always, follow me for more thyroid info and please check out the resources linked in my bio for more support!

- Rachel Hill, Thyroid Patient Advocate 🦋💙

🍁 In September 2020, six months after giving bi

🍁 In September 2020, six months after giving birth to my first child, I received the news that my Hashimoto’s was no longer in remission.

Was I surprised? No.
Was I upset? Also no.

Let me tell you why…

•••

🎢 Living with a health condition is rarely a smooth journey in the way that there will be times that it is under better control and times when it flares up again.

🎢 This is especially true with a hormonal health condition, as there are so many factors that can affect it.

🧪 My antibodies had only risen slightly, just over the normal range, but they had still risen. And this signalled that the Hashimoto’s (autoimmune hypothyroidism) was no longer in remission. Inflammation. Attacks on my thyroid occurring again.

👌But that is OK.

👍 Life is forever changing.

👍 Everything about us is forever changing. My Hashimoto’s was never going to be in remission forever and I have said this soooo many times.

🦋 There are so many reasons why Hashimoto’s can flare back up again and antibodies rise. I expected pregnancy to do it, but it didn’t. I expected it to flare up after giving birth, yet it surprised me by staying in remission until, there I was, six months postpartum.

🧪 And after speaking to my functional medicine practitioner, I was reassured that this was not unusual at all.

🦋 Getting my antibodies low and in remission was never the endgame. Trying to keep them low is obviously the goal but life means that they will inevitably change. Multiple times. At many points in my life.

Sudden illness.
Pregnancy.
Giving birth.
Stress.
Grief.
Infection.

🎢 It was just another bump, another turn, another junction on my thyroid journey.

I thought: “Will they be in remission again at some point? Yes, I expect so.”

And that’s exactly what happened (with focus on those jigsaw puzzle pieces I always talk about!). I focused on my adrenal health, gut health, diet, sleep, exercise and more to get things back on track + in remission again.

🧩 We need to be honest about this. It’s fine. It’s frustrating but it’s what it means to have a chronic illness. It’s not static, it’s fluid!

•••

👇 What are your thoughts?💭

- Rachel Hill, Thyroid Patient Advocate 🦋💙

© Rachel Gask and The Invisible Hypothyroidism, 2015-2024. All Rights Reserved.

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