scared to take levothyroxine ,Patricia Scott - Thyroid UK

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scared to take levothyroxine ,Patricia Scott

Hagador profile image
18 Replies

hi I am in Australia and have just been prescribed Levothyroxine 50 micrograms ,I have only half of my thyroid. Have coped well for 40 years without it, I am frightened to take meds as it appears to cause anxiety and insomnia, would love to hear your thoughts and experiences. Thank you ☺️

Ps I am 72

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Hagador profile image
Hagador
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18 Replies
jimh111 profile image
jimh111

Anxiety and insomnia only occur if you take too much, so nothing to worry about.

DippyDame profile image
DippyDame

Levothyroxine is a bio identical replacement thyroid hormone not a drug.

Anxiety and insomnia are symptoms of low thyroid hormone level.

jimh111 profile image
jimh111 in reply to DippyDame

Usually signs of too much hormone.

DippyDame profile image
DippyDame in reply to jimh111

Other symptoms suggest hypo rather than hyper and she only has half her thyroid gland

We need numbers.

FallingInReverse profile image
FallingInReverse

Hi Hagador! Welcome to the forum! You have found the best resource for information and shared experiences for thyroid issues!

As noted above - Levothyroxine is NOT a drug. It is indeed a replacement hormone that - when you are hypothyroid - your body lacks. Also, many times, anxiety and insomnia are SYMPTOMS of low or high thyroid hormone levels… NOT side effects of the Levo.

The most important thing for us to know first is a little about your history, symptoms and blood test results.

Am I correct in assuming you are symptom-free and feel fine? Please tell us how you are feeling!

Can you also please share your recent blood test results - the ones that precipitated your doctor suggesting Levo?

Other than having had a half-thyroidectomy 40 years ago, any other issues?

Hagador profile image
Hagador in reply to FallingInReverse

Thank you for answering, my thyroid score has been creeping up , I don’t know the exact number must be 8 or over as doc wanted to wait until it was absolutely necessary. I am 72 female and am on cymbalta 30 mg for depression and 125 mg of olanzapine in the afternoon. I recently had an eye stroke lasting 20 seconds. Am on aspirin as blood thinner refused traditional treatment and have controlled my high cholesterol with diet to the satisfaction of doc not willing to take statins . Is it difficult to stop levothyroxine if the number returns to an acceptable level? I have 4 months supply as I said earlier I am scared to start. Thanks again 🤓

Smartypants1 profile image
Smartypants1 in reply to Hagador

Hagador, I never had any issues when I started and I’m scared to take ANYTHING! Honestly, it’s fine! x

greygoose profile image
greygoose in reply to Hagador

You have a lot of hypo symptoms there: anxiety, depression, high cholesterol...

I imagine that by 'my thyroid score' you mean TSH? A TSH of 8 is pretty hypo. A 'normal' (euthyroid) TSH would be around 1, so you can see that yours is high. And, if your TSH is high, your thyroid hormone levels are going to be pretty low. Your half thyroid obviously can no-longer cope. You do need to take the levo.

Is it difficult to stop levothyroxine if the number returns to an acceptable level?

That is not how it works. Once your thyroid has lost the capacity to make thyroid hormone to that extent, it will never recover. Thyroids cannot regenerate. Levo is not a cure for a failing thyroid, It doesn't make your thyroid work again. It just replaces the hormone your thyroid can no-longer make itself and which you cannot live without, so the number returns to an acceptable level because you are taking it. Stop taking it and the number (TSH?) with rise again. You will therefore have to take thyroid hormone replacement for life like thousands and thousands of other people do with no problems.

FallingInReverse profile image
FallingInReverse

A few things.

Depression is a common SYMPTOM of low thyroid hormones. Although bipolar/mania isn’t, we don’t know what your symptoms are related to that prescription, and depending on severity maybe that was prescribed for anxiety? Which is also a symptom of low thyroid hormones.

High cholesterol is also a symptom of low thyroid hormones.

I have (as many others here) have felt depression, anxiety, and had high cholesterol that have all gone away with Levo & thyroid replacement.

That’s not to say it’s the exact same for you. But your “thyroid score” I’m assuming is your TSH. Which at 8 most likely means you do need Levo.

TSH is Thyroid Stimulating Hormone. A high TSH (really anything over 2-3-4 of higher) means your pituitary is working really hard to ask the thyroid for more thyroid hormones, but isn’t getting enough… so it keeps sending out more and the TSH level keeps rising.

What you really need is to test your Free T3 and Free T4 to know how low they are. It is highly likely they are too low. And likely you do need Levo.

Have you ever had thyroid antibodies tested?

What country are you in?

And do you get cold often, is your hair thinning, do your joints ever hurt/ache, are you fatigued?

We do not know enough about you to know for sure, but many signs are pointing to Levo making sense. Let us know more.

Hagador profile image
Hagador in reply to FallingInReverse

I get cold feet and shins, olanzapine for irritation, never had antibodies test , I live in Australia

Hagador profile image
Hagador in reply to FallingInReverse

no aches or thinning hair

Hagador profile image
Hagador in reply to Hagador

No aches ,have a good head of hair and sleep well, no doubt because of olanzapine

RedApple profile image
RedAppleAdministrator

DD, You are correct. Anxiety and insomnia can also be symptoms of too little thyroid hormone. I know from experience!

DippyDame profile image
DippyDame in reply to RedApple

Thank you Red Apple.

Her other symptoms also suggest hypothyroidism!

FallingInReverse profile image
FallingInReverse

Well, 8 is way too high for a TSH result.

When people are at 8 they are usually full of complaints and symptoms, but it sounds like you are only moderately bothered : ) But yours are consistent with untreated hypothyroid.

Are you able to request antibodies - TGab and TPOab? Along with FREE T4 and FREE T3?

To answer your question, Levo is a long term, lifelong pill. It takes a very long time to ramp up and as it does, it will suppress any thyroid hormone your thyroid might be making. The Levo then fully replaces what your body needs (vs topping it up.)

But if your TSH is rising, as I’ve said, you can’t wish yourself out of taking it. Treatment would be hormone replacement, getting those other numbers tested before you start, and regularly blood testing as you titrate up to your optimal dose.

Sleepman profile image
Sleepman

+1 for falling in reverse postsI am pretty new to this.

My cholesterol dropped after starting on levo and my mood and sleep improved. I am a 50 odd year old bloke who was randomly in floods of tears.

If you are not getting enough thyroid hormone it is like having very low battery in a car and all parts behave a bit weird. Symptoms therefore vary a bit between different people.

It takes time for your body to repair and to get to correct dose.

Likely 8 weeks before they test your bloods so 10 weeks before dose is changed from starter dose.

My feet warmed up pretty quickly

and it is still bliss to have them back.

SilverAvocado profile image
SilverAvocado

As others are saying, if your TSH is 8, it is likely that your lack of thyroid hormone has been making you quite sick. A person with a healthy thyroid will have a TSH close to 1, and it rises as our bodies start to struggle without hormone. By the time it gets as high as 2 or 3 it signals that something is going wrong. If your result is 8, then that is a pretty large number.

The very good news here is that once you get set up on thyroid hormone you will likely get a lot of relief from symptoms and feel a lot better than you do now. A lot of the symptoms you've mentioned, such as high cholesterol, cold feet, anxiety, insomnia, and many more can be cause by low thyroid hormone, so there is a good chance you will get some improvement in a lot of areas.

The one caveat here is that you need to be on the correct dose to feel much better. You have been given 50 micrograms daily to start with. This is a common dose to start on. But these hormones needs to be dosed correctly for each person. It is a bit like shoe size, everyone is a bit different, and we need our own correct sized dose to feel comfortably. So it is possible you might not feel improvement straight away, sometimes it takes a few times of going back to the doctor, getting new blood tests, and having the dose adjusted. Best practice is to wait 6 weeks between dose changes to get settled on each dose. If you start on this 50 micro grams and don't feel your best, the important thing is to keep going back to the doctor and asking to be retested.

If you have any problems, please come back to the forum and ask another question here, in a brand new post. Members here are very knowledgeable and will know the best thing to try next. These replacement hormones are for life, so it is important to get things just right. The great side of this is that thyroid hormones are very powerful and can make us feel loads better. Hopefully in a few weeks (or months, as everything is slow with thyroid hormones) you will be all settled on them and will be getting a lot of improvement.

Hagador profile image
Hagador in reply to SilverAvocado

Thank you 🙏🏼

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