Never taken thyroid hormone what to expect?

[BeThoumyVision]

Hi my name is Tracey and I live in the US. I have been recently dealing with an increase of hypo/autoimmune symptoms and was told to start levothyroxine treatment. I have been on this roller coaster ride for many years starting with a physician telling me I had subclinical hypothyroidism many years ago. My TSH levels were checked when I had went to Emergency Department for sickness and the doctor noticed TSH levels were elevated. Since that time my levels have bounced around and have seemed to rise when under significant stress or when I am sick. I have had 3 thyroid ultrasounds in the past few years with the most recent being in January 2025. Ultrasound is consistent with damage to the thyroid showing a heterogeneous and hyper vascular thyroid. I went on February 4, 2025 for a 6 month follow up with endocrinologist and my free t4 that has been right at bottom of range is now lower therefore my doctor insisted on starting levothyroxine treatment. Thyroid disease seems to be prevalent on my mother’s side of the family. My mom who has passed had hyperthyroidism, one of her sisters who has also passed told me one time that she would “go back and forth” I am assuming she had autoimmune thyroid disease and my mom’s dad also had thyroid disease but I am unsure of his diagnosis and he has also passed.

I am supposed to start with 50mcg of levothyroxine but have never taken anything so was curious to what I should expect? I have times of anxiety and am wanting to feel better but not have to deal with palpitations and increased anxiety. I am also in the throes of perimenopause so there’s that.

[greygoose]

Hi BeThoumyVision, welcome to the forum.

My advice would be not to expect anything. It's different for everyone so how can you possible know in advance what it will be like for you.

And,, if you expect something, it very often happens. So many people expect 'side-effects' and they get them. If anything, expect to feel well.

[BeThoumyVision in reply to greygoose]

Thank you so much for responding. Yes, I can very much understand what you are saying and I do tend to be an over thinker.

[greygoose in reply to BeThoumyVision]

You're welcome.

[humanbean]

This thread might be helpful to you :

healthunlocked.com/thyroidu...

[BeThoumyVision in reply to humanbean]

Thank you.

[TheFlyingBaker]

To add to the helpful replies, I'm in the UK and started levothyroxine many years ago. I was very worried about taking it and my Doctor explained that of all the meds, levothyroxine is probably one of the safest ones to take as it is a supplement to what your body cannot make. Of course everyone is different so it's important to self-monitor possible reactions. I started on a low dose and after several months eventually settled on a 100 dose. I felt so much better and the fatigue mostly went, but I would say be kind to yourself, pace yourself and bear in mind (as an overthinker myself!) that it's tiring trying to manage all this. Eat good food and walk/move every day and rest when you can.

[BeThoumyVision in reply to TheFlyingBaker]

Thank you for your reply. I am doing my best to not have any gluten. Next would be to cut out dairy, which may prove to be more difficult. I have started walking some but definitely could do more.

[Smartypants1]

I’m a bit like you and am always anxious to take anything. I always say to my husband, ‘but what if it makes me feel worse?’ His response to me? ‘And what if it makes you feel better?’

[BeThoumyVision in reply to Smartypants1]

I feel a bit silly for being this way but it seems like I always have.

[Obsdian]

The first dose didn't feel like much at all for me, maybe more like taking the edge off my symptoms.

[BeThoumyVision in reply to Obsdian]

Thank you .

[tattybogle]

as greygoose says , best not to expect anything , just be observant of how you feel each week over the next 6 -8 wks until next blood test.

but just for interest .....when i started on 50mcg , i felt nothing much for about 10 ish days , then felt quite a bit better for about a week , then less good again (but not as bad as before i started) , after dose increase i again felt nothing much for about 10 days , then quite a bit better for a few weeks this time , then less good again . After a further dose increase the feeling better part lasted for several months .... it's a long game i'm afraid until you find the best dose for you . and also bear in mind , it takes the body a long time( many months) to repair itself from having low hormone levels. they didn't get that low overnight ,,, and replacing them doesn't fix everything overnight, so be patient .

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A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

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keep these up your sleeve , they will come in useful later on when you are discussing future test results with gp :

healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish

healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range

[BeThoumyVision in reply to tattybogle]

Thank you so much for your help.