Did you find peaks and troughs becoming more obvious each day? As in, I feel as if maybe the levo acted as a baseline, and without it, before I’m due my next dose of T3 I feel like I really need it?
I’m just trying to work out if this is normal, and I just need to increase T3 a bit more, or if maybe it’ll turn out I do need the levo in there after all. I’m also intrigued by other postees observations of feeling odd if over medicated (ie dizziness and muscle weakness).
Sorry for the continued questions... if I don’t ask when it happens I’ll completely forget! No improvement in brain fog as yet either 🙈
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Murphysmum
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I recognise your experience Murphysmum. I think you can get more obvious peaks and troughs if t3 dose isn’t high enough ... and if you need T4 in there too. I also get dizziness, weakness and difficulty concentrating if over medicated. It’s all about finding our individual balance. Good luck.
It might be worth a look at Tania Smith’s story at thyroidpatients.ca/2019/08/... - she multi-doses several times a day. It seems to vary with the individual as some on here are happy with only one dose of T3 a day.
Short answer: no. I've never ever noticed what people refer to as peaks and troughs. I take all my T3 only in one go in the morning.
When I was on T4+T3 (I went via NDT to T3 only), the T4 made me feel bad and there wasn't enough T3 for my needs - I was on just 20 mcg T3, but even that was better than T4 only! So, I felt too ill to notice subtleties like peaks and troughs. Being on 62.5 mcg T3 only has got to be an improvement on that! But, even so, I haven't noticed Ps or Ts.
I recently felt the need to reduce my dose from 75 mcg, but there were just two clues for me: a) the tremor in my hands when I held them up in front of me - or when I tried to do anything fiddly. And, b) my finger nails lifting up from the nailbed. I didn't experience any dizziness or muscle weakness - those could also be hypo symptoms.
So, we come back to the fact that we're all different and all have different symptoms, and need different doses, and it's trial and error to find what's right for us as individuals.
Interestingly, that is the only possible “over” symptom I have, exactly the same trembling.
However, I had the same about 18 months ago when I was almost certainly under medicated on levo only... so who knows!
I figure I’m going to keep going up slowly and see what happens. If it stops, great. If it gets worse I’ll drop back down.
I felt much better without levo initially and all my aches n pains have gone including my frozen shoulder which has persisted for around two years. Very interesting. So I have no inclination to go back to levo but appreciate that it might turn out that I need it.
Well, of course, other things could cause trembling. I don't think it's a definitive symptom. Other things like fatigue, for example. But, coupled with the nail problem, I thought best to try a reduction. And I felt a lot better very quickly.
So I have no inclination to go back to levo but appreciate that it might turn out that I need it.
You read so much that T4 is not just a storage hormone, it has its own uses. So, twice in the last few years I've tried to add in some T4, starting with 25 mcg. The first time it was ok for six weeks, so I increased to 50, but didn't like that. Went down to 25 mcg for a few more weeks, but somehow just didn't feel right. Second time, I stayed on 25 mcg for several months, but it was such a relief when I finally decided it wasn't working and gave it up. My whole body gave out a great big ouf!
Now this is interesting too and something I never thought of before!
When we were away last summer, I had my nails done and had acrylics on. I used to wear them a lot years ago but this time I caught one of them. It hurt but got better and I thought nothing of it until the acrylic was removed and my nail had come off the nail bed quite badly. It had happened on my other hand too though not to the same extent.
I never thought of it as a thyroid thing.... maybe its still not but it never happened before when I abused my nails much more! It’s still not properly gone.
That's funny, I had that nail thing happen to me. I have only had my nails "done" once, just to be sociable with two friends. It took my nails almost a year to go back to normal, I will never do it again. So since I have only had it "once only" I cannot say thyroid abnormalities have an effect, but yes, it happened to me.
No, I'm afraid I can't. That's the problem, I can't put it into words. I just don't feel right. When I first started on T4 only, I went rapidly downhill. At the time I was diagnosed - by accident! - about the only symptom I had was rapid weight gain. Although, in the past, I'd had a lot of symptoms, although I didn't know they were symptoms of thyroid, because I didn't even know what a thyroid was! But, as soon as I started levo, a whole slew of symptoms crashed down on me and didn't go away.
From there, I went on to T4+T3, and that was better, but still not back to where I was before I started levo - and the weight had continued to pile on! I desperately wanted to try NDT. And, at first, on Armour, it was good! Although I was still getting fatter and fatter. Then they reformulated Armour, and that was the end of NDT, as far as I was concerned. I tried most brands, but just felt worse and worse.
Switching to T3 only, was like a light coming on. And, when I try to add in levo, the light goes out again. That's about all I can say. Sorry.
I fully understand, thanks for the reply. I've been through the NDT's as well, now trying Levo, feeling like crap, next step try to talk my doctor into adding T3, if that doesn't work then T3 alone....I just hope something will finally click for me.
Sus64 for me it has been aches and pains. As I mentioned, the frozen shoulder that would go after a T3 increase but then crept back, I had assumed was due to needing more T3. However, having dropped the levo it’s gone! Totally gone. Also I regularly had aching hips and knees. Again, gone.Also I just felt..... lighter. Not actually lighter, heaven knows that needs work after the festive season but I felt kind of cleansed. Free’r moving. I can’t describe it but like the treacle in my veins had been replaced with water. Crazy but that’s how it felt.
I now have to work out what’s cashing the symptoms I’m having now. Mild ones but still symptoms. Onwards though...
Yes, I thought that quite remarkable that your frozen shoulder disappeared after T3! I'm afraid my detective work hasn't been as successful at matching the symptom to hormone though. I had sore hips and knees before I started medicating, overmedicating, undermedicating, I just can't seem to put the pieces together! I'm having a major problem with anxiety and dizzyness at the moment. Onwards it is.
I guess the main problem is that “over” and “under” symptoms can be the same.
Before I became really unwell (don’t I wish I’d recognised it at the time) I had ridiculous anxiety. I am not an anxious person but I’d start having near-panic attacks just going to my local, friend, hairdresser! Amongst other things. Public transport was out... too anxiety inducing. Mental.
And the dizziness too. This has just started again with me so I’m certain it’s a low thing but low levo or low T3...?
Good luck. What I have learned is just to trial and error. I’m at the first real test of this for me as I’m really not sure what way to go! Previously it was like ‘increase levo to xxx and we’ll see what happens’. ‘Decrease levo and intro T3’. Now I’m a wee bit lost so having to run new things all over again!
I don't think "normal" covers anything relating to thyroid disease!
We all function differently.
Peaks and troughs can exist when titrating T3 - as the body adjusts to the change.
I feel close to my optimum dose now (based on symptoms, or their disappearance) but still experience a "lift" after an increase, when this wears off as the body adjusts I know I will need another increase...but always low and slow!
I was given T3 medication. (liothyronine) for a long time because I react badly to levo. I felt absolutely awful but kept getting told I was "in range".
Within two years I was fully symptomatic again until they eventually admitted my T4 levels had been reducing gradually over time but TSH and T3 remained in range.
It's led me to believe that it's the T3 that keeps your energy up but the T4 sort of balances you out during the day.
It didn't seem to matter how much they put my T3 up it just didn't seem to stop the T4 from dropping even though I was feeling over-replaced on the T3. Although I've never really recovered fully, the addition of T4 really has improved my stability across the day.
Snake_Oil, everyone's freeT4 will drop when taking T3-only. Even if you're taking some T4 with it, taking any T3 will cause freeT4 to drop.
Some unusual people feel that they need a decent level of freeT4 to feel well. For most people it won't matter at all though, all the need is as good freeT3 level.
You probably already know this, but just being somewhere inside the range isn't good enough at all. It needs to be at optimal levels for you to feel well. For most people this means freeT3 near the top of the range.
Ive never beeen on T3 only but I found a big difference between levo plus T3 and taking a NDT. When on the former I used to experience peaks and troughs -increasing the T3 dose did not help -I tried splitting into smaller frequent doses of T3 throughout the day....that helped. When I moved to NDT all that disappeared and I take my whole dose first thing. No idea why NDT made that difference but it does.
I used to call it T3 run out. I decided early on to take my t3 in one dose only in the morning rather than split it through the day. In the early days in the late afternoon/evening I'd get trembling & racing heart. It was one of those things i didn't notice had stopped happening until I was reminded about it. I've been T3 only for almost 5 years now and it rarely happens at all anymore.
This is essentially what is happening to me I think.
It could be that my dose is too high, but going on how I felt a year to 18 months ago, I believe mine are ‘low’ symptoms rather than high.
I can safely say I didn’t know what a heart palpitation felt like until I became unwell.
I used to get them about half an hour after I took my T3 when I first started on it, then they stopped. Now they’re back, along with dizziness and the trembling fingers. Plus my eyesight is terrible as the day goes on.
I’m sure these are because I need more T3 but time will tell. And whether I need that alongside a little levo now and again remains to be seen too.
Murphysmum, I'm not on T3-only, but have been on NDT most of the time. I have had troughs several times, in the sense of always feeling worse at a certain part of the day. I now split into 3 doses to deal with it, but as I adjust my dose I've had to juggle the three doses several times.
Sometimes I've been worse in the evening, I slowly realised that I tended to be in bed feeling rubbish after about 6pm, even when I'd felt quite bright and energetic earlier. Then another time I found I was very sluggish all morning, and would just be waiting to eat my lunch and then have my dose two hours later to really feel like I'd woken up and could get things done. Both times I juggled the timing and sizes of my split doses to even out my energy more across the day.
Something I've noticed about this that may be more relevant to your situation on T3-only is that my need for three split doses seems partly to be related to how high the dose is and how far from optimal I've been. At first I tried to get away with a single dose for convenience. That seemed to work fine while my dose was super low, but as it raised it seemed I needed to split.
That was years ago now, and I've continued raising my dose. I think I'm now at more reasonable levels closer to where my optimal will be, and I've felt like now I'm more comfortable I might manage fine with only two doses... It makes me think that maybe I or anyone might need the splits more while their dose is still a bit low.
Another unrelated point, how many splits do you do in a day? There's an argument, which I haven't looked into myself, that it can be okay to take T3 with food. As long as you remove that 3-hour fast to go with each dose (2hrs before dose and 1hr after), it makes it possible to split into 5 or even more across the day.
I currently split 2x - first dose when I wake up about 645-7(or later this week! 🙈) and the next at around 1430-3pm.
I did once try to take one dose first thing when I was on a lower dose but I felt really over. I would be game for trying it again though once I think I’m in a more stable place.
At the moment I waken up feeling fine but a couple of hours later I’m feeling trembly and dizzy. I generally feel better later in the day but I’ve always noticed the palpitations (or more thudding heart beats) tend to be more in the evening. This isn’t always the case, just more often than not.
I'd say you definitely have the option to split out into a third dose if you want. I think three doses makes the day quite tight, but is doable. When I added a late evening dose, weirdly I found it improved how I felt in the morning, as well.
These things are entirely trial and error I think. All you can do is just try different patterns of dose in the day and see how you feel. Trying either one big dose in the morning, or splitting off into an extra one would both be options to try if you like, depending on which sound appealing!
When I was on T3 only I really noticed the dips but the highs felt like I used to be. I remember falling asleep at work during a training session. Oops, pass the water and I’ll take another tablet and I’ll be ready to go in 10-15 minutes. Now I take extended release T3 I’m fine all day long.
Oh extended release t3 sounds good. Is it available in the U.K.? I shouldn’t admit my random t3 dosing in this thread really (I take it when my head pressure or foot pain tells me to!) but would love something that would give me a sustained dose.
There is a compounding pharmacy in Northumberland but they would have to import the raw materials from the USA, so my GP sees me once a year and sends an email to a pharmacy in Alabama and I pay them. I started on it in 2000 when I lived in the States and when I came back I said, 'I want to stay on it as it keeps me healthy and most of all, it won't come out of your budget!'
Hi i to usef to have the white noise or air noise in my head/ears..never been on t3 only just ndt isnt that a hypo symptom?if not im curious to what from..i noticed a few times more recently i hear thst white noise since ndt here isnt doing well like use to
As soon as I would excercise or read awhile or just randomly during the day would see half circle "snow" or "fuzzy' like when a tv/cable off air on a channel.
My stress level and heart rate would increase whenever I didn't feel well at these moments.
I've never had it before taking Cytomel.
I took myself off Cytomel and adjusted my T4 up to compensate for the loss of T3 (Cytomel- in Canada) My levels of free T4 and Free T3 and TSH are in the perfect ideal zone.
Iam retired from pharmacy so I do have some education, not just changing dose on a whim and my amazing doctor agrees with my decisions. Our fine tuning with bloodwork and dose changes accordingly to how I feel works great.
I'm glad I got rid of T3 dosing of Cytomel for MYSELF.
Within a day I felt so much better and my vision improved within 2 days. It had nothing to do with levels. I just couldn't take it.
Yes we are all different. I followed the levo first then adding T3 in before going to ndt. However some people need T3 only gecause they dont convert the levo so it backstacks in their system. And some people need mainly T3 with some levo added in. And then theres the effects of minerals and vitamins!! Its complex and the only way is to unpick it slowly, one change at a time.
Am really glad that levothyroxine worked for you....it was a question of finding a brand that you werent affected by the fillers....aonther problem that crops up. ...lol. Erfa was good then changed & lots of people had problems with it, including myself.
So those docs who say its simple you just take a tablet & youre sorted are well off the mark!! 🙄😛😤 I wish!!!
I had a partial thyroidectomy (right side). Was given Erfa Thyroid and yes worked well for years until Efra had shortages. They still say nothing changed but I believe that somewhere I read they changed manufacturing plant location so some say this may be it. Whatever the case, that was the time when we pin- pointed my symptoms of reaction to the new production of supply.
My main point is...what works well for one may not for another whatever the choice of meds for treating our thyroid problems.
What dose may work perfect one day, month, year may not work all of a sudden.
I do find it odd that one by one the ndts have changed become unreliable. Some say they think its the problems with sourcing the thyroid extract. Who knows why it is. So I wish the other options work for me but they dont.
My thyroid is totally dead so am entirely reliant on replacement so you could be right thst for me the T1/2 is important but then how does that work with these people on this thread who do well on T3 only with no other componant? so whys that? my dose only varies due to weather conditions (small tweaks) otherwise is consistent.
B12 injections has meant better thyroid hormone uptake for me so Ive had to reduce my dose a little first time in years. Whether now with the b12 I would cope with a different option I dont know but I may have to find out!!
Peaks and Troughs? Yes. I am on NDT and feel great most of the day but late afternoon my T3 runs out (for me the half life is 8 hours although it is often quoted as 24 hours - that would cause the same effect but I won''t go into that here). I rarely take an extra 1/4 pill, although that would get me through the evening because I don't do much in the evening anyway that requires a lot of energy. I just let it all wind down, have my dinner and go to bed about 9:30 - 10:00pm. Yes, splitting the dose or taking just a little bit extra late in the day would even out your energy (by boosting your T3 a little bit).
Now, you can also create a T3 deficiency and therefore a trough by using a lot of energy, for example riding your bike or walking around too long shopping. Exercise seems to use up your T3, so there is a possibility to experience a trough earlier than you might have expected.
So during the holidays I’ve done next to nothing! And I haven’t really noticed the troughs.
When we get back to normal this week though and I’m walking and exercising in the morning, I expect to begin to feel more tired around mid afternoon again. We’ll see.
I’ve upped my T3 to 65mcg yesterday and took 30, 20 and 15 at bedtime so I’ll repeat that for a few days.
I’m still getting the dizziness about an hour/hour and a half after taking my dose though so I suspect it’s too high a dose.
That seems a very high dose of T3 to me, do watch out for a rise in blood pressure. For me I have about 12 mcgs of T3 in my NDT and on the couple of occasions I have taken a bit extra to see me through an anticipated energetic day it made my blood pressure shoot up. Do monitor your BP when you are adjusting ;your T3 dose.
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