coming off liothyronine temporary side effects - Thyroid UK

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coming off liothyronine temporary side effects

Abirose97 profile image
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still on levothyroxine, had been experiencing hyperthyroidism test results even though I am a hypo typically. been reducing liothyronine slowly for 3 months only to have results still show hyper. so we decided to stop it after decreasing it as much as we could to see what happens basically.

been experiencing some side effects and I'm just wondering what other people's experience has been if you've done something similar?

I was fine for about 4 days, actually great and then the side effects kicked in, I have good and bad side effects so far...

good:

sleeping better than I have in about 5-6months (getting about 8-9 hours a night, waking once or twice as opposed to waking 6-7 times as I was just 11 days ago prior to stopping lio)

anxiety lessened significantly

I feel more calm

heart rate is slightly lower and doesn't feel as frantic

not more motivated but I find it easier to be disciplined with work and studying

bad:

fatigue, despite the sleep improvements

the fatigue hits me hard around 3pm with a mild headache. I have clearer thought and less brain fog in the morning but towards the end of the day I feel dissociated, and like I'm moving through gravy

muscle weakness

my hypermobility pain is worse

I'm just wondering if I need to just wait it out? my TSH was very suppressed and my doctor said that it would take the 6 weeks for it to produce the right TSH levels to keep up with my body's needs again (if it will at all which is kinda what we are trying to find out)

so any general encouragement that it will get better or if you've experienced the same thing would be great.

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Abirose97
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Abirose97 profile image
Abirose97

oh and I've been RAVENOUS. eating about 30-40% more a day and just so hungry always

tattybogle profile image
tattybogle

ANY change in does of thyroid hormone .. even if it's just a relatively small increase / decrease of Levo like 12.5mcg ( which you wouldn't think would make much difference ) needs AT LEAST 6 weeks before you know how it will actually feel once the new levels of T4/T3 ad TSH have settled in.

You have made a relatively large change by removing all T3 (from 10mcg to 0) ...

so you can expect the body to be going "WTF?" for quite a few weeks while it figures out what just happened and alters your TSH and the Deiodinases alter your conversion of T4 to T3 in response to your new levels of T4/T3 .

So based on my experience of altering Levo doses , you need to make a note of how you feel each week, but other than that pretty much ignore any changes in symptoms until about week 5/6.. as things will be changing all the time over those first few weeks. so you wont be getting a true picture of how you will feel without any added T3 during that time.

I'm assuming they have left your Levo dose at 150mcg ?

i note you are now taking an amphetamine for ADHD.. i don't know how that may affect your thyroid related symptoms but presumably is has side effects of it's own on sleep and appetite to consider ... I do know someone with ADHD whose 'brain'( ability to communicate logically) was much improved when taking it .

I think most of us on here would have advised trying a reduced dose of 5mcg T3 rather than stopping it altogether (or perhaps keeping at where it was initially and reducing Levo instead ) ... as 'smaller changes' are nearly always a better idea than 'larger ones'.

But basically now you've 'picked your horse' , you do have to ride it for at least 6 weeks to see where it gets you . and when you are waiting for TSH to do its thing and respond ~ '6 weeks' is the bare minimum . if you really want to know how something will be once the whole body has adjusted itself i'd say 3 -6 months is more like it .

Abirose97 profile image
Abirose97 in reply to tattybogle

okay thank you SO much. I kinda figured that would be the answer but you are correct my boxy is like WTF so i was freaked out😂 I did ask about going down from 10 to 5 but we don't even have that pill size where I am in Canada, it's actually not even normal practice to prescribe lio here so for me to have gotten away with it for 3 years is wild lol. I'm not on my ADHD meds as my health insurance didn't end up covering them and they're expeeeeensive lol but yes I have noticed the ability to get into deep thinking is so much easier already.

Hi Abirose, I decreased my cytomel dose back in 2021, I only dropped 3,75 mcg but It took my body about 3,5 months to adjust (regardless the dose change my body has seemed to found it’s balance after 3,5 months) after that I know what I’m dealing with. Everybody is different, but for my body the cytomel reduction was a greater shock then levothyroxine reduction I experienced in the past. I expierenced muscle weakness, night sweats, earthquakes sensations, tinnitus and a bunch of other for me challenging symptoms. And felt anxious 24/7. I ended up getting a second opinion from a professor who works at a university but who also is a gp. He explained to me that ft3 needs to be dominant over ft4. I’m still not there as I’m not treated by this men. But did increased my dose of cytomel again. After 9 months im still not fully recovered, but suspect seasonal flues and perhaps COVID to play a roll in that to. In case it is helpfull my TSH levels are always slightly increased 6 weeks after a medication reduction, and after that it is always suppressed <0.02. Personally I always have mixed feelings with T3 it makes me feel better and gives me energy to do the basic primary daily things and rules out many allergies food intolerances for me, yet i do feel the fluctuations in my t3 levels and therefore take 6,75 mcg 3x a day, but even then I can feel it in my muscles that my t3 levels are going down 4 hrs after taking t3. Hope this information is a bit helpfull for you.

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