Hello everyone, I’m back for more much valued advice.
My last thyroid blood test (April 23) shows I need to reduce my Levothyroxine (I was on 137.5mcg Levothyroxine daily):
TSH 0.005
Free T3 5.8 (3.1-6.8)
Free thyroxine 31.4 (12-22)
The advice given on the forum at the time was to reduce my Levothyroxine but slowly. I tried reducing by 6.25mcg (131.25mcg in total daily) but I became so hypothyroid after 10 days I could barely function. I’ve never got on with T3 before but in desperation (as I knew I had to reduce my T4 levels) I had some T3 available from my last trial and I decided to try dropping the Levothyroxine to 125mcg whilst adding in 2.5mcg T3 for a few days. This had a really positive effect (for the first time ever) and gave me the confidence to up to 5mcg T3 daily (split into two doses). This made me feel much better for 2 weeks. However, I’m now strating to feel very hot all the time and a bit nauseous.
I felt nauseous pretty much all day every day on T4 only so my thinking is to try dropping the Levothyroxine down to 112.5 (this would be a 25mcg drop from my original dose of 137.5mcg). I would plan to stay on the 5mcg T3 daily until time for testing.
I’m keen to stay on a settled dose for 6-8 weeks and get another test but I’m feeling 125mcg T4 with 5mcg T3 is starting to feel like overload. I don’t feel hyper I’m just feeling ‘overloaded’ and groggy and my gut feel is the T4 levels still need to come down. If I could have persevered with dropping the T4 gradually on Levothyroxine only….I would have done this but it wasn’t possible to function and I’m flabbergasted that T3 now makes me feel better, not worst. The only thing I can think of that has changed is…..I stopped HRT 4 months ago so that could have been upsetting the uptake of the T3 perhaps…?
Thanks for any advice in advance!
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TiredMummy
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Why do you think you were overmedicated? Your FT3 was well in range. It´s often said here that you are only overmedicated if your FT3 goes over range.
Did you have any symptoms of being overmedicated on 137.5 mcg daily? How did you feel? I am curious as to why you added T3 instead of going back to your previous dose of levo.
Hi TiredThyroid, I wasn’t feel at all well on 137.5mcg T4 only, I was feeling really ill. Although I don’t feel as good as when I initially started the T3 I feel better than when I did on T4 only. I agree symptoms are important, that’s why I’m considering dropping my T4 again without testing. I’m working on the theory that the T3 is building up in my system now and I will now fair better on lowered T4. It’s only a theory and if I start to feel worse on lowered T4 I will soon know about it and will need to think again Its all trial and error and hopefully I will get ther one day through a combo of symptoms and testing 🙂
T3 cannot build up in your system. Excess T4 is converted to RT3 or reverse T3 which is inactive and a way for the body to get rid of T4 it does not need. But, as far as I know, you cannot get too much T3 from excessive T4 because of this built-in defence mechanism. And T3 has a relatively short half-life (about 24 h in blood and three days on cellular level), so does not really have time to build up in the body. If you take more T3 than you need you are making things worse by taking a new dose every day, but that is not because it is building up in the body but simply because you are constantly giving the body more than it needs. I am tagging greygoose which has explained this very well to others on the forum over the years, and hope she will chime in.
Thanks TiredThyroid50, yes hopefully Greygoose can help shed some light. Can I ask what you think you would have done/would have advised if you felt awful on 137.5mcg Levothyroxine only with those blood test results after finding a small drop in Levothyroxine only was untenable? I thought I was getting somewhere (as the T3 made me feel significantly better for the first time ever) but now I feel I’m confused and directionless again. Perhaps from what you say…..I should consider simply reducing the T3 back to 2.5mcg whilst staying on 125mcg T4? This makes sense to me thinking about it as something feels like it needs reducing as I’m now feeling hot all the time and waking up flushing etc. It’s just a guessing game of whether its T4 that needs reducing or T3 or both. You also mention reverse T3 which is interesting as I remember sharing a reverse T3 test on this forum and a few administrators seemed to advise it was low in meaningful understanding… Everyone is entitled to different views I suppose but it does get confusing with one person saying your results were fine and others saying your T4 levels are way too high. If I felt well on 137.5mcg T4 only, I certainly wouldn’t have changed a thing. Here’s hoping I get there someday soon, thank you for the tips and for tagging Greygoose 🙂
As far as I know, RT3 is not a problem in itself as it is inactive and only stays in the body for a few hours before being eliminated (broken down to T2, then T1, then T0). So it does not block FT3 as was once believed. Many sites still claim that is the case and that causes a lot of confusion.
What I meant was that if you were on too much levo for your needs, FT3 will not build up in your body. Instead, the body converts more of it to RT3. Neither FT3 nor RT3 can build up/pool. As far as I understand, RT3 in itself does not cause symptoms. Excessive FT3 does, but does not stay in the body long enough to build up.
What were your symptoms back when you were on 137.5 mcg of levo?
I also saw that you only decreased levo by 6.25 mcg if I understood you correctly. That is a tiny decrease and I am a bit surprised you felt it so strongly after 10 days. The usual advice is to decrease levo by 25 mcg (6.25 mcg sound more like the advice re T3).
Do you know for sure you need T3? I got the impression you have taken it before. How did you feel on T3? How much T3 and levo did you take? Why did you go back on levo only?
The poster is overmedicated because her ft4 is 31.4 in a range which stops at 22.There are additional risks when ft4 is high and over range when on levo only. Such as an increased risk of cancer.
Too low too high ft4 can cause symptoms on levo alone or on combo.I would be particularly concerned about the cancer risk of high ft4 which is currently a trend in the levels of thyroid mumas she posted similarly 3 months ago.
How do you know what is too low and too high? Especially since T4 levels tend to go low when you take T3. I am curious as I am trying to figure this out myself.
Too high is over range or above an optimum level when on combo.To low on combo is below an optimum level for the individual.
You only find out the optimum levels by trial and error, making small, methodical changes one thing at a time. This is how folks arrive at the doses and dosing regimes that suit and where they have fewest symptoms. It took me 2 years of trial and error until I arrived at the doses of levo and lio I wanted to stay on long term.
No one can tell you what your combo doses will be or quite what your thyroid hormone results should be. Some folks are symptom free with low ft4 as long as ft3 is high in range. Others need ft4 higher. For me my ft4 sits about 50% measured at its lowest and ft3 around 72% measured as an average level. I had it in my head, having read replies on this site, that I needed to get both around 60% to 70% through their ranges and I did try. But the more I tried to increase levo the worse I felt so I accepted that my body was saying that my levo dose and ft4 level was where it should be. That's when I decided to stop changing doses and give my body stability.
Thank you! I know there is no one size fits all when it comes to thyroid hormone replacement, and that everyone needs to find their optimum dose. How did you know that your symptoms were due to taking more levo than you needed, and not too much T3? That is the most difficult thing for me to decide on a T3/T4 combo, as I never know which hormone is causing which symptoms.
Because I only change 1 thing at a time so that I could tell what was having an effect. I settle on a dose for 12 weeks. Once bloods are done I consider how I feel and what my levels are. I consider from that what change I might like to try and go for it waiting 8 to 12 weeks then doing bloods.I started out on 100mcg levo only. Gradually reduced levo to 50mcg then slowly added 5mcg lio until I was on 20mcg. I felt awful. Ft4 was 0%and ft3 76%. I thought I'd try more levo. So I increased levo by 25mcg daily waited and did bloods. Ft4 was higher but ft3 was slightly over range and I had a slight tremor. So the next step was to reduce lio dose. So I went on until I felt I had had enough of changing either levo or lio doses and there wasn't much else I could do to improve things.
Hi Lalatoot, I’m committed to getting my T4 levels down but it was too much of struggle so I turned it T3 in desperation. Even if it means I just need to be on it temporarily it’s made it possible to tolerate 125mcg from 137mcg. As I said in my post though, that lasted for a while but now the old symptoms are creeping back (fatigue, headache, nausea) so I’m wondering if this is symptoms of over medication for me. I know it’s the T3 that initially made me feel better, it worked like a bit of a miracle to start with. My gut tells me I need to either reduce the T4 again (down to 112mcg) or reduce the T3 to 2.5mcg. It’s all trial and error like you say. I’ll see how I feel in the morning but the god awful symptoms are becoming strong again so I’ll have to try something
Problem is you are changing to much too quickly. You really need to change 1 thing at a time and be methodical about it then wait for the effects to ripple out before blood tests to consider next change The body likes stable doses particularly of lio t3. By changing doses every few days you will feel awful and things won't settle and the body will be in a constant state of change. And you don't know which of the changes randomly made are making you feel worse .
It sucks feeling awful when you have to try and keep going and have responsibilities. I was all but housebound for 2 years. Unfortunately there are no quick fixes.
I know I’m changing things too quickly but doing the best I can so I can hold down my job, this is imperative for me, I have little choice. Hardly slept last night, terrible insomnia plus boiling hot but kept at 125mcg T4 but haven’t taken any T3. I find having Hashimotos very difficult to manage as I have natural highs and lows on top of my T4 levels being too high. Do you have Hashimotos Lalatoot?
Just to add on, I decided to take your advice and despite the fact I feel hot and have chronic insomnia, I’ve taken 2.5mcg T3 but won’t take anymore. That way I’ve only changed one thing, I’ve reduced my T3 and will see how I go. I’m seeing a doctor today that specialises in hormones so I will see what they make of my bloods, my medication trials and tribulations etc. At least overall I’m reducing my T4 and have been doing that now for a few weeks and that’s what I need to do looking at my last couple of bloods I’m just not able to do this in a straight line without any T3 at the moment
my gut feeling is you made a mistake when you increased the T3 from 2.5 to 5, so i agree... go back to 2.5 and stay there.
i agree Levo clearly needed reducing a) because you didn't feel ok so doing 'something' was good idea.. and addressing the over range fT4 was the obvious place to start.
and b) because T4 was significantly over range , which is just not a good idea long term. due to recent research suggesting potential cancer implications of higher T4 levels .
Hidden it is definitely possible to feel a strong reaction to even a very small (12.5mcg) reduction on levo by about 10 days .. this always happens to me. i'll start to get symptoms of undermedication eg a bit of constipation, and am feeling generally slow and groggy within just a few days , and by day 10 i really feel it.
I think this is just the body reacting to the 'change' in levels and it does not necessarily mean the lower dose is going to be too low for me .. it seems like it's just the body noticing a change and reacting to it . (it feel's a bit like a pendulum swinging too far the other way before it settles in the middle, if you know what i mean)
sometimes this feeling of undermedication improves if i give the lower dose a few more weeks to settle in. In my case this takes about 4/5 weeks from when i reduced dose. So i have (now) learnt not to judge the effect of a levo dose reduction before at least 5 weeks have passed... i used to give it a couple of weeks and then be adamant that it was too low and insist on going back up , but experience of waiting longer has shown i was wrong to assess it that soon in the past.
for me it either starts to improve by about 4/5 weeks (if the reduction was actually needed) .. or it doesn't start to improve by then , and the symptoms of undermedication continue to worsen, (if the dose reduction was not needed).
25mcg 's is very often too big an adjustment for levo ... i reduced from 125 to 112.5mcg due to very high fT4 20.5 [7.9-14] 206% ~ even though i felt ok with no symptoms of overmedication ....and that felt very undermedicated for about 4/5 weeks, but then things improved a bit and i was functioning better again. However 3 months later my Doctor insisted i reduce further to 100mcg because fT4 was still very over range (in fact it had gone UP a bit to 22.7 (242% ). I was very reluctant as i'd only just started getting my act together again after the first reduction... anyway i did reduce to 100mcg a couple of months later,, and this time the constipation/ zombie effect just got worse and worse (to the point of not being able to cross the road safely , or even remember why i was crossing it, with chronic constipation), and as this hadn't improved by 6 weeks , at that point i did spit my dummy out and insist it was out back to 112.5mcg even though my fT4 was still over range at 19 [7.9-14] 181%.. the constipation/zombie effect then started to improve and i felt more or less ok again with a few weeks.
(6 mths later , my fT4 had fallen by itself to 16.6 (142%) despite me increasing levo back to 112.5mcg . i still have no idea what was causing my ft4 to be so high during that period)
so for me, 25mcg was clearly too big a reduction . For this reason i would now generally recommend adjusting Levo dose by 12.5mcg, not 25mcg (apart from in cases of very obvious symptoms of overmedication, when a faster reduction may be a good idea)
TiredMummy my understanding of this is basic , but estrogen level directly affects the amount of Thyroid Binding Globulins (TBG) produced in the liver.... TBG are what binds T4 .... the T4 that is not bound is the "FreeT4".
(Total T4 test measures both the Free T4 and the bound T4)
When people start taking HRT it can mean they need a higher dose of levo (i think because more of the T4 gets bound by higher levels of TBG, so less of it is 'free')
similarly when people stop taking HRT, it can mean they need a lower dose of levo , because less T4 is bound due to lower levels of TBG , and therefore more of it is 'free'.
So this may be part of the reason your fT4 was becoming high ?
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Re. whether high T4, when T3 is well within range, can possibly cause symptoms of overmedication ?
i can't be certain for myself (NHS don't test my T3 very often and i'm skint)..... but i do know that when i had nasty symptoms of overmedication (inc. weight loss and fine tremor) and felt really awful, at that time my fT4 was only a little over range at 119% ... and yet when my fT4 was 206% i had no symptoms of overmedication at all , in fact i felt pretty ok . Shame they didn't do fT3 on those occasions , as i'd love to know what it had been .
Without an fT3 test , the only real clue from bloods when i was actually overmedicated was that my TSH was a bit lower than my 'usual'.. it's often about 0.05 but it had fallen to 0.018.
but when my fT4 was 206% and i felt ok , my TSH was the same as my 'usual'
So sometimes, changes in TSH can be a useful clue.
First of all, regarding HRT, as far as I know, only oral estrogen will increase TBG levels and decrease FT4 levels (much like the pill does), but not topical estrogen.
Also, I dont understand this statement my fT4 was still over range at 19 [7.9-24] 181%.
It would seem your FT4 levels were well within range?
the HRT/estrogen effects are more likely to be significant with the older types of HRT that i think used higher amounts of estrogen / taken orally , and the research i've seen will most likely be referring to those .... i'm not very well informed on any TBG effects from newer/ different forms of HRT, as i've never used HRT..
Hi Tattybogle, feeling much better today (second day on 2.5mcg T3 after briefly upping to 5mcg). I also notice small drops or increases in thyroid medication pretty quickly and like you can feel pretty damn awful by day 10. My T4 has also gone up after decreasing my Levothyroxine…..The doctor I saw today agreed I should stick at 125mcg T4 & 2.5mcg T3 for two months before retesting but to go back if I start to really struggle, I’m hoping I’ll be able to manage it and don’t feel like I need to be in bed all day in 10 days time! Thanks again for your words of wisdom it really helps knowing I’m not the only odd ball not fitting the mould. Most people, very understandably, on this forum have reacted that I shouldn’t notice a difference in doses if they are small but I must be very sensitive to the changes as I’m always thinking how could I NOT notice as the symptoms are so amplified. We are all different and it’s great we can all learn from each other ☺️. Thank you for your kind and generous support x
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Its all trial and error and hopefully I will get ther one day through a combo of symptoms and testing 🙂
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