T3 Suppressing T4. How?

[FancyPants54]

I realise I don't understand this. It seems to be common knowledge that if you take a combo of T3 and T4 medications that T4 levels in the blood will go down somewhat. I am currently seeing this happen. But how? I still take the same amount of Levo, 125mcg. So if I'm putting the same in, where has it gone? I don't understand why it isn't showing in the blood.

[diogenes Remembering]

Probably because you now have more T3 directly given, the dose of T4 you take will now be partly diverted to make reverse T3, which is a way of making sure you aren't overdosed. The body if given the chance, makes much more use of T3 therapy than of T4. It's simply that with the T3 you take, there isn't room for all the T4 to be useful so it is got rid of.

[FancyPants54 in reply to diogenes]

How odd, I replied to your much shorter post but couldn't post it because you were editing it to add more I think. Here's what I asked.

OK. I'm stumbling around in my head over this. My FT4 isn't high and I'm trying to raise my FT3 over 50% at least. But I didn't feel any difference other than more tired and fed up since I increased my T3 from 20 to 25 a few weeks back. More sluggish and tired. So I tried increasing Levo by 25mcg a couple of weeks after the T3 as both results were in the 40% range and I felt worse. Could barely move and a load of hair fell out. So I dropped back in a week. It just wasn't right.

I'm wondering if I need to reduce my T4 now a bit, even though it's not a high result. If I did, would it give the T3 more room to move as it were?

I don't even know how to phrase what I'm trying to say. But I've never felt well on Levo after I moved from 50 - 75mcg a long time ago. That move up to 75 was evil. I was floored for most of the day and then around 5pm I'd spring into life and have to do a full day's work before I could go home for a late supper and bed. It felt as if I had to wait for the Levo to wear off. I eventually got used to feeling like that and as I moved up to 100 and then 125 trying to reduce my TSH and increase my T3 I lost the ability to rally and just felt rubbish all the time.

Now I know I have the Dio2 gene problem from one parent, I'm wondering if I'd do better to lower the T4. It feels as if it's blocking the T3 somehow.

[SlowDragon Administrator in reply to FancyPants54]

Which brand of levothyroxine are you currently taking

Have you ever tried liquid levothyroxine

Many people who find it difficult to tolerate levothyroxine tablets do better on liquid levothyroxine

But the fact you felt better in evening suggests adrenal issues

Have you ever done cortisol and DHEA test

[Lalatoot in reply to FancyPants54]

You don't need to take your levo in one dose. I couldn't tolerate it in one go and have always taken a morning and night dose.If you feel you need more T3 then alter the T3 dose. You may be someone who can tolerate low FT4. You only find out by trying.

I have stopped trying to get my FT4 and Ft3 to certain percentages through range as it was creating bigger imbalances as I tried to bring FT4 over to 50% - it seems to like being in the 40% somewhere!

[FancyPants54 in reply to Lalatoot]

I've had much higher FT4 in the past, pre-T3. But I never felt any better with it high. I did in fact drop 25mcg off my dose this morning. I was OK until about 5pm when I suddenly felt very tired and down for an hour or so. I don't know if it's the right thing to do or not though.

Experimenting is hard when trying to fit around Endo visits and his requirements for blood tests about 3 weeks in advance. Oddly my legs have been less painful today. But that could be coincidence.

[Yeswithasmile]

I just don’t understand a number of things. Why, if t4 is the inactive hormone does it make any difference at all when taking t3? I’ve been taking combo t3 for about 5 weeks and yes I feel less lethargy but am still napping so finally understand the difference! If you are a poor converter then why take t4 at all and why have I got such bad tinnitus for the last week. Confused. I’ll be interested to see my bloods in a few weeks. I seem to sound so much like you. The 75mcg was evil and then once that settled, I felt no different. 🤷‍♀️ It certainly isn’t straight forward. I do hope you work out what to do next 🤞🏻🤞🏻🤞🏻

[FancyPants54 in reply to Yeswithasmile]

It's very hard. And we get so little help. I didn't feel any benefit at all from my last increase in T3 up to 25mcg a day. So because my T4 is also low in range I tried increasing that a couple of weeks later. I felt horrible. Could barely walk. I stood it for 1 week only and then dropped back to 125mcg where I've been for over a year. A couple of days ago, in desperation for something to change for the better I reduced my Levo to 100mcg. I have a heart arrhythmia and high heart rate so I have to keep an eye on that. Yesterday just sat at my computer in the late morning my heart rate shot up to 146bpm for a while. That causes anxiety in and of itself, before I realise why. But it settled back down not too long after. I thought I'd best keep my eye on that. But I felt a lot better by evening and today I feel a bit better again. My legs don't hurt so much, the numbness in my toes was much better this morning but is picking up again a bit now. But I feel lighter in myself. So I'm going to keep my fingers crossed that dropping my dose helps the T3 to work and improves things. I'd be happy to drop my Levo right down if it worked and I could get enough T3.

[Yeswithasmile in reply to FancyPants54]

So you didn’t notice anything with a t3 increase? How much did you increase by? What t3 are you using? I assumed that any added t3 would be noticeable as it’s supposed to be so potent. Although I did think just how different you felt would depend on how low you were to start with.

You obviously wear a heart rate monitor of some description to know how much your bpm went up by and I bet that is scary. I have noticed that mine has increased by about 10bpm but mine has always been very low. I was thinking there would be a period of adjustment for that and it would likely be like an increase in levo. Probably all will settle down once appropriately dosed? I say that appreciating that it is so difficult to get it right and if you have arrhythmia it is even more tricky.

It is good to hear that you are experiencing some positives and I had thought, like you, I’d try to drop the levo and increase the t3 blood tests dependent and endo. But atm I really want to throw the towel in as the anxiety is tricky and I am on a short fuse too combine that with the tinnitus and no improvement to aches and pains .... but I know it’s early days and I’m so lucky to get this t3 that i need to human up and stop whinging and persevere. Just like you are and so many others on here.

Well today is a new day...... 😬

[FancyPants54 in reply to Yeswithasmile]

That's right, I noticed nothing with the last 2 T3 increases if I'm honest. I felt great for the first week of using 10mcg a day at the start. But my private endo asked me to titrate the doses in an odd way and it didn't work for me so in effect it made me worse and I had to get over that. I always feel as if something is blocking the hormone. There have been odd moments, on Levo too, when everything has suddenly worked well for a few hours and I feel like myself again, but it doesn't last. At least I know it's possible. I know what I'm aiming for.

My thoughts were "is Levo blocking the action of thyroid somehow as I've never felt better on it, only steadily worse" and "if I reduce the Levo will the T3 have more chance of getting to the cells". So that's why I am experimenting in this direction.

I use German Thybon Henning T3 on private prescription so I know it's good stuff. I'm currently taking 25mcg a day, 15 at 8am and 10 at 3pm. But it's a long old wait for 8am to come around again and if I need to increase further after my next blood test, I will be looking to put some in around bedtime.

This morning I woke up highly anxious and upset. With higher heart rate (I don't wear a monitor, I can feel it, and when I feel it I either use my blood pressure monitor or a phone app to check the rate). It wasn't good. But it's calmed now because I had the medication at 8am. I'm hoping my body will settle on this soon. See how it pans out at the next blood test. But I really don't need to wake up every day with high anxiety.

At my last reading, both my FT3 and FT4 were in the 40% through range area, one was slightly higher than the other. So on paper it makes no sense to drop the T4, other than how I felt.

[Yeswithasmile in reply to FancyPants54]

Oh I definitely understand your thinking about the levo blocking lio. Funnily enough I am going to do a quick monitor my health basic check this week. I’m early I know but I’m curious to see what is going on.

I sympathise with the anxiety. I don’t suffer normally but even went to bed after work this week as I just couldn’t bear it. It is really hard to put up with isn’t it? Especially when you feel your heart pounding too. Although I feel like mine is but according to my watch it is only slightly raised 🤷‍♀️

Your readings are very strange aren’t they?! Like I mentioned before I just don’t get why adding t4 to t3 makes some people feel better and some not. You would imagine the t3 is all you need and I will really be very interested to see if a reduction in levo helps how you feel.

I see on an earlier post that your levels just keep dipping which makes you think absorption issue? What about HRT? Have you considered an interaction or have you been on it a long time?

Personally I feel like the t3 must be speeding things up and using all the good stuff in my body and that’s why I have felt so crap. So I upped the vits a tad and today seems a better day. I also upped my exercise and it may be in my head but I think marginally improved and if nothing else distracted myself from the relentless ringing in my ears. I do still feel very bunged up and have actually put on a couple of pounds in a few days 🙄 plus a morning nap. I think I’ve just detailed hypo symptoms there??! 🤔 Be interesting to see what my bloods come back as. Perhaps I need more?

I wish you lots of luck with your ‘experimenting’ and am keeping everything crossed that your instincts are right. I am a believer in trusting instincts so feeling positive for you and please remember to update us. x.

[Murphysmum]

I completely agree with your theory. In fact, I’ve commented on a number of posts about this.

When I was initially given T3 I began to titration it as recommended on here... increase T3, reduce levo until you find the sweet spot.

I never really did! I immediately better but as time went on I got more aches than I had had. Ie, my frozen shoulder got worse, I had more pain in my hips and knees. What I thought was arthritis in some of my fingers.

Then I got to the point where I was taking so little levo, that I thought stuff it, and just dropped it entirely. Within ten days I felt much better - more energy (tho this had been better already), pains began to go. I’ve never looked back. I now take 60mcg T3 a day and that’s it. The only negative thing I find with this is the almost immediate impact of things that affect your thyroid levels, if this makes sense. As in, previously I enjoyed doing the 5:2 regime to lose weight. It worked really well for me. However as it impacts on your metabolism and therefore increases demand for thyroid hormone, if I try even one day I become really unwell. There just isn’t the “back up” in your system because T3 has such a short half life compared to levo.

So I’ve learned just to get on. Keep my T3 stable and enjoy life! But definitely levo impacted on T3 efficacy for me. I don’t really understand either, I always refer to it as the levo “blocking” the effect of T3 and I guess there’s probably a scientific explanation around receptor sites etc but who cares! It works and that’s all that matters!

[FancyPants54 in reply to Murphysmum]

Briliant Murphysmum . I remember you struggling with it in the early days. I'm so glad you have found what works for you.

I take 25mcg T3 a day now, I increased it 5 weeks ago. But it just wasn't making any difference. The second day on the reduced T4 (Good Friday) I felt much better. No wheezing and much reduced leg pain and weakness and my toes and balls of feet where nowhere near as numb and stinging as usual. Also (great benefit) I didn't feel I had to cling to banister rails as my ankles weren't giving way on steps. But yesterday I woke with high anxiety and couldn't wait to swallow my thyroid meds. The anxiety went as the meds took effect. But I was pretty low all day and didn't do anything. This morning I feel worn out and wheezy. Not sure what to do now. I feel like I should add more T3. I don't want to go back up to 125 Levo - I have never felt well on it. But I don't know where to put that extra T3 if I do. At the moment I'm doing twice a day. 15 at 7am and 10 at 3pm. I definitely feel as if it's gone by around midnight and I sleep like the dead and wake tired and (now) anxious. I know that's low hormones. Trouble is we eat late and go to bed late due to our working patterns. I'm having dinner when most people are already snoring so unless I take it as I get into bed, an empty stomach isn't possible and by then I will already be feeling the effects of low levels.

I never know what to do. Apart from this forum I've had so little help with all this. The private endo is lovely but I can't see him every few weeks so I have to go it alone in the meantime. I next see him mid-May. 25mcg seems like such a lot of T3 when I see people doing really well on 10mcg a day. This scares me about increasing it.

[Murphysmum in reply to FancyPants54]

Well... this is exactly how I felt. I remember when I made it to 10mcg a day and I felt great in comparison to before - I really couldn’t see that one day I’d need say, more than 25mcg.

You’re right. Your hormone is too low just now and that’s causing your symptoms. Also the T3 will push your T4 lower, making the whole thing worse. What I would say is don’t be scared of adding in more hormone.

If you’re feeling better without the extra levo I’d stick with it. Near in mind that it’ll take 6 weeks minimum to get out of your system so you’ve got a bit of a cushion if you like. What I did was to try to wait a week between T3 increases but sometimes you just can’t. But if you start flirting about between this much levo and that much levo you just won’t know where you are.

What are your bloods like? Or most recent. And how much levo did you take before you introduced T3? Ie, I went as high as 200mcg from a normal 150 before I realised it wasn’t working for me.

If I were you, I’d stick with the reduction in levo and if you’re finding you’re a bit low just now and it’s been 5 days add in another 5 and see how you go. You’ll know by the end of the week if it’s too much but I suspect not.

I needed up doing as recommended on here and continuing to increase in 5mcg increments every few weeks while decreasing levo and eventually got to T3 only! Now that I’m stable, I split mine twice a day - 35 at 645 am ish, and 25mcg at 6pm ish - and it’s all good. It usually ends up separate from mealtimes but sometimes not, and I’m fine. Don’t stress too much about it being away from food every day, just mostly seems to work for me. And that’s a max of 30 mins in the morning, not hours.

Happy to guide you through it as best I can, just shout. Once you find your dose you’ll be glad you stuck with it and worked it out 🙂

[FancyPants54 in reply to Murphysmum]

My last bloods were done on 25th February. Taking 125mcg Levo and 20mcg T3 a day. I've never been able to take more than 125mcg a day. It makes me feel more hypo to go over that. In fact, before I knew I had the Dio2 gene problem, I tried 150 a day and my own T3 production plummeted. I briefly tried going up to 150 again just a couple of weeks ago. Couldn't stand it for more than 1 week. Hence having a rest and deciding to try dropping some of it. It is the first time my TSH result has been under 2 in years.

Here are the Feb results on 20T3 and 125 Levo.

TSH - 1.76 (0.27 - 4.2)

FT4 - 16.3 (12 - 22) = 43%

FT3 - 4.63 (3.1 - 6.8) = 41.35%

Once I got these results back I increased to 25mcg T3 a day keeping the Levo at 125. That was 5 weeks ago. 3 weeks ago I tried 150 Levo for a week as I felt nothing from the increase in T3. Stuck it for 1 week and dropped it again because I felt worse. So it's OK time-wise to try another 5mcg of T3.

My fear is that it will make my heart race because my cardiologist tells me it will. But then I don't think he's up to much. I have atrial fibrillation. He is convinced T3 will kill me. Actually when I take T3 my heart rate drops to a more acceptable level. Since waking this morning feeling so much more hypo, my HR was higher. The Canadian thyroid web site talks about too little T3 being as bad as too much for atrial fibrillation, but the UK cardiologists haven't caught up yet. My big fear is that my private endo, who writes my scripts for Thybon Henning T3, is determined my TSH must be no lower than 0.5. And I don't think that's going to be enough judging by what others here end up with. He feels my AF should be OK in that perimeter but not below.

I can't stay like this until I see him in May, so I want to add another 5T3. Given that I am waking feeling hypo, would you add that extra 5mcg to the afternoon 3pm dose of 10mcg, or the morning 8am dose of 15mcg, or take it around 11pm at night? I know that naturally TSH rises at night so we must need more hormone over night?

I wish I wasn't such a coward with it. I've been sick on Levo only for years. I tried adding a little T3 on my own a few years ago but that cardiologist scared me off and as the 12.6 I was taking a day at the time had made no difference to me other than for the first few days of taking it, I stopped because of him. I now see I wasn't on nearly enough. I have this sneaking suspicion that I have AF because my T3 level is stuck too low.

[Murphysmum in reply to FancyPants54]

Ok so on the afib, cardio front - when I very first started on low doses of T3, about half a hour after taking it my heart would go nuts. I had those really crazy hard heartbeats and all the little ones in between that feel like several beats joined together! As I’ve increased though, they’ve stopped and actually, the only time I get them a bit is around my period when I’m not taking my progesterone cream - that’s a whole other issue!

Easy for me to say now but don’t be scared of it. I think you always have to bear in mind that it’s a very powerful hormone so treat with respect, but I suspect the Canadian cardiologist is right based on my own experience. I was fearful of increasing too, espresso once I got to around 25mcg because it seemed that’s what most other people had settled on (at least when I was trialling doses). However, I’d say I’d you’re finding you’re feeling no effect from taking more, then there’s room to take more! If you go over, you’ll know about it. Personally I feel quite weird, like constant butterflies in my tummy. It’s different from the anxiety of being low (that’s taken me a while to suss out) and it doesn’t necessarily affect my heart rate, I just feel like I’m worrying about a big interview or something 😂

You’ve got plenty movement in the bloods you’ve got there. My most recent showed I was actually over range slightly, at 7.something but I feel fine, in fact I feel fab, so I’m sticking with it. As for seeing your endo, I was terrified snout going back to see mine after the first year. I went private so just could afford to go every time I wanted a dose change. But I took regular bloods and I documented how I felt and what I did at each change. When I eventually saw her she just kind of said “I’ve read your essay, keep doing what you’re doing!” I was shocked. And after mentioning tsh when I first saw her, on that occasion she merely said we want to try to not suppress it, people don’t like that. I said that if anyone wanted to talk to me about osteoporosis and cardio issues I’d be happy to have that chat as quite frankly the new, energetic me is surely likely to have less issues now than the sofa bound old me. She just smiled and said yes quite, “but that’s a battle we don’t really want to have if we can avoid it”. Love that woman!

Not sure on your timings tbh.. you just need to trial things and see. Mine works perfectly spaced as it is just now but I know when my levels were lower I needed the second dose earlier. Have you tried splitting it more often? Most people seem to but it really didn’t work for me. I found that anything less than 20mcg at a time for me is like not bothering. I seem to need the large “wave” of meds that some people talk about. Worth a shot though if you think a late night dose might work. First thing still is my worst time, if I’m going to feel dodgy that’s when it’ll be. So now I try to take my doses roughly 12 hours apart... still not convinced it’s any better though. I can live with it as long as I feel energised the rest of the day!

I’d keep going on the same trajectory if I were you. Don’t fear it, try it, if you feel nothing increase again and decrease your levo again. Try to give it a week or two between changes to see how you find it. It does take ages to find your “sweet spot” but you will. There’s lot of info on here too about how to increase/decrease etc so use that, and message me all you want. It’s taken me three years to get here - admittedly I’ve made absolute clangers of mistakes and realised afterwards but it’s all learning.

[FancyPants54 in reply to Murphysmum]

Thank you. I'm literally glued to chairs this weekend so yes, I do need more.

I'm not convinced about small doses either. I'd like a full 20 tablet in the morning with a top up later really. But got to work up to enough to do that with first.

[FancyPants54 in reply to Murphysmum]

Also, if 5:2 doesn't work, what about the one where you only eat between a certain window each day. Can't remember what it's called. Another of Michael Moseley's methods.