Okay so I made a post last year about being unable tolerate t3 only but I’m actually wondering if I jumped onto t3 mono too quickly and gave up too fast? (Which many others pointed out but at the time I was so unwell I could barely think straight)
Prior to starting T3 only back then I was on a too high dose of levo only and having awful side effects.
Now I’m at a point where I’ve been off all thyroid meds for nearly 3 weeks and am feeling absolutely awful. It was suggested I stay off thyroid meds for 6 weeks and retest but tbh I really don’t think I can last that long as things are just getting worse and worse and I worry about all my vitamins tanking. (Iron is already rubbish) I’m having loads of symptoms of low stomach acid- acid reflux, poor digestion, constipation, no appetite.
My dr has been adamant that T3 mono is still likely the best option for me. They said most PCOS patients seem to do best on t3 mono or NDT and after trying so hard to get on with levo its negatives far outweigh any positives for me at any dose. It just sucks IMO!
Is it worth giving t3 only a PROPER try now I’m 3 weeks free of levo? I feel worried to do it but I have the meds and can’t bear the idea of not taking anything for another 3 weeks, I’m just struggling so much already.
Sorry for the anxiety filled ramble and thank you for reading. Interested to hear any thoughts!
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Hi there, your post really hit a chord with me because I am in a similar position. Having been on NDT for a few years, I am now unable to tolerate what I think is the T4 or T4/T3 ratio. (I am detoxing from heavy metals which is think is the cause - probably high RT3). I did some T3 only for a few days last weekend. I can't not take any thyroid hormones at all, because I don't have any thyroid tissue left so would be dead quite soon! I took it really slowly, dissolving 10mcg T3 in 10mls water and using that as four separate doses, with the help of a 2.5ml syringe. I took 3 x 2.25 mcg T3 for three days, starting the first one when I woke up and then only taking the second one when I could feel the T3 wearing off and so on. I crushed the half tablet with a spoon to get it as powdery as possible to enable easier dissolving in the water. On the fourth day, I felt that it was working. I had a bit more energy, better brain function and felt different. I retook some NDT a few days later and the horrible hyper symptoms returned.
Do you have to wait 6 weeks for all the T4 to go? It's unusual to hear a doctor recommending T3 as either NDT or monotherapy, so it might be worth pursuing it a bit longer. Was it the doctor who suggested the 6 week wait, and if so, could you go back to them and let them know what is happening and how bad you feel? If you have had Hashimoto's for a while (the auto-immune version of low thyroid hormones), you too might not have much thyroid tissue left either to convert T4 to T3, which will make you feel rough very quickly.
The last time I tried T3 only, a few years ago, I was advised by an Endo to take 10mcg twice a day, which of course, catapulted me into hyperland. I couldn't even tolerate 5mcg of T3 so assumed I wasn't able to tolerate it. However, now I have been taking these nano-doses, I realise that, actually, I don't need very much to feel OK. I don't know whether this is true or not, but I often wonder whether bigger people need more and smaller people need less. I am quite small so maybe don't need as much!
I'm not an expert on iron supplementation so someone else might have to help out there.
Low thyroid hormones cause anxiety as well, so it's no wonder you are struggling at the moment. It's not a rant either, makes perfect sense to me!
P.S. This is not medical advice, I am not a medical practitioner.
Thank you so much for your reply. It does seem more common than I was lead to believe that some just cannot tolerate t4 meds.
I’m glad t3 is helping you finally. I can only hope the same for me. I’m gonna try and speak to my dr next week about all this as my anxiety is always a big indicator that hypo symptoms are coming back. I literally feel like I’m going crazy.
I think the fact that I have PCOS really complicates things and the fact that I’m also taking a combined contraceptive pill which I have an impossible time getting off as my hypo symptoms get so much worse.
Just feels like a complete minefield and I’m feeling so fed up.
these are my latest on just 25mcg levo only cos that’s all I can bear. My t4 seems quick to jump up and has never been low so it looks like it’s just my t3 that is always a bit rubbish
So I re read your recent post from a couple months ago and Jaydee’s first response was:
The main thing is to pick a dose and stick with it. You are pretty early days in your hypo treatment only having been diagnosed this year and arriving at the correct and optimal dose for yourself takes a lot of patience and time.
Which I paste here because it’s exactly what I was going to write.
When I read that you are off T replacement for 3 weeks… I speak from no authority on that, but knowing that hormones need to ramp up and ramp down slowly, if you stopped everything cold turkey, after being on only 25-50 (I think) in the first place - you would have suppressed your own T4/T3 while in Levo, then gone off the exogenous you were taking. So I think it’s predictable you’d feel awful.
The 6-8 weeks of a titration period are volatile even if you are ultimately headed to your proper dose.
In fact - I’ve seen week 5 and 6 be the worst and then 7 -8 and beyond settles down.
I think you are about a year into diagnosis? Maybe a little more? I haven’t reread your other posts, but are you able to share (or put in your profile) what would be the discreet changes you made this past 12 months? How many dose changes have you done in the past 12 months?
It’s tricky for me because I seem to have constant side effects on levo no matter the dose. I’ve been on 25-87.5mcg l levo over the last year. 75mcg pushes my ft4 right to the top of the range and I feel awful with it there. Each dose was held for 6-8 weeks and it was always the same for me unfortunately
I am just over a year in but im 32 and can’t wait years to get this right as me and my partner wanna have a kid at some point soon too.
I can’t stick with a dose if it disables me to the point I can’t get out of bed and for me the higher the dose of levo the worse my side effects are. Adding t3 to levo only exacerbated my issues and left me unable to walk properly and just feeling so ill.
The reason why I’m leaning to wards considering t3 only or NDT is that my ft4 doesn’t seem to be the issue, it’s my t3 that randomly tanks. That way I don’t have to wait months for dose adjustments and feeling worse all the while like on levo.
Sounds like you have taken the time to isolate that T4 is the cause of the problem. And so yes - giving NDT or T3 mono a proper go means coming up with a plan, low enough and slow enough, and giving it a chance by sticking to it.
Whether it’s NDT or T3, in a previous post someone sent you links about pregnancy and T3 mono. They would have sent those because conventional medical info talks about maternal T4 as important. So I’m not sure which is right for you.
Although I take issue with the word “side effects” - those are actually “symptoms” as you are not taking drugs/pharmaceuticals, you are taking a hormone replacement.
I think the nuance matters, because when you are taking something with side effect, you stop taking it.
Hormones are part of a long chain reaction of things in your body. Just because you “can’t wait years” won’t change the biology of hormones. Being hasty ADDS months/years to the process , it doesn’t get you better faster. Or else we’d all be doing it.
So - if you know you are intolerant of Levo, get a plan for the right option, dose and duration and stick to it.
What was the advice you got from this forum on that when you first asked about your Levo intolerance?
Edit: also T3 might be shorter acting, and I know people here say they increase a bit in the winter, but it still takes time for your body to adjust, you still have to wait weeks on a dose change. I’ve been on the same T3 dose for 9 months. Had palpitations that started with the T3. And just finally a week or two ago think I’m finally adjusted.
Sorry yes side effects is the wrong word. It’s hard to be clear but I feel like when my t4 level is pushed up by levothyroxine it causes t4 that is too high for me so I get these weird debilitating symptoms caused by too much t4 sloshing round in my blood and not being used so it causes problems for me. So it’s not the drug itself it’s that even 25mcg pushes me to 18+ t4 and my body seems to hate that and not using it. I tried to explain not sure if that’s very clear!
There is an extra layer of complexity here as my Dr believes that PCOS often impedes conversion of t4 and also that me being on the combined contraceptive pill is interfering with treating my thyroid issue. We both believe it’s my t3 that is lacking regardless of my TSH or FT4 readings. It often drops much lower when I try to stop the combined contraceptive pill but Tsh and t4 don’t change. It’s complicated because stopping my contraception seems to make my thyroid issues a thousand times worse, like debilitating. My symptoms were so bad before I lost my job and often thought about not being alive anymore…
I think the plan is to quit the contraception and try introducing some t3 only and then once I’m stabilised look at where tp go next in terms of planning a pregnancy. Who knows perhaps when I’m off the contraception I’ll respond a bit better to t4.
It’s hard to from a plan when there are so many variables to consider and an extra hormone condition to take into consideration too but I’m doing my best. I’ve given levo over a year but it hasn’t helped my feel better at all and just makes me feel worse. I know of other who have it much less time and are doing better on NDT.
Ah that’s so strange because my dr advised that on t3 only the dose is mainly decided via symptoms and can be adjusted by 5mcg every two weeks until symptoms resolve.
Also I’m not sure if it even is levo intolerance. It just seems like my t4 levels are okay without meds but it’s my t3 that is poor and struggling. My ft4 levels are always around 16-17 without medication but I feel awful regardless.
Re t3 - my apologies for the wrong impression, I’m still Levo/Lio combo! Yes I’ve read too that T3 mono is dosed more on how you feel. Obv the brilliant T3 mono people on this forum know tons. Now Im curious… if I (combo) have to be slow with Lio changes, why wouldn’t a t3 mono need to be! I want to wean off Lio but thought it would be a huge big long deal. Hm.
I also remember the many different variables of your story. And I think it was on one of your posts maybe where I referenced an Eeyore/Tigger post that said since sex hormones and thyroid hormones impact eachother you can’t do them sequentially.
I’m struggling with what I think is an impending transition into menopause. And staying the course for a couple weeks as I am finishing out a 12.5 Levo increase period. But I’ll have some decisions in a couple weeks.
Re the T4 symptoms I’m pretty sure those would be hyper symptoms… assuming you e ruled out various Levo fillers are the culprit?
I’m ambivalent about this 6 weeks off Levo for you! But I do know that at the very least blood tests are unreliable before a full 6 weeks. So.. I don’t know but your body is probably on a roller coaster right now!
I do like the idea of you going off the pill… but logically are you now tracking your sex hormones too? Have you heard of others who gave such a hard time going off the pill? Are you feeling better cold turkey off Levo vs when you tried cold Turkey off the pill?
Ah no worries there’s a lot to remember isn’t there!
You’re right there are so many variables in my case and it makes me feel so hopeless.
May I ask why you are keen to drop your lio?
So the thing is I absolutely feel like ‘the pill’ is/has affected my thyroid function. I have wanted to quit the pill for the last 5 years but every time I stop I get these awful symptoms (what I now recognise as hypo symptoms) and when I restart the pill it kinda takes the edge off.
So I find cold turkey off levo hard and things decline but going cold turkey off the pill is even worse, like an absolute car crash- into the second week of stopping it I cannot function at all.
I know it’s unusual and I have many friends (some of which have PCOS too) that haven’t had the horrendous issues I have.
I did read that birth control of some kinds can essentially mask thyroid dysfunction which maybe explains why I feel a bit better taking than not.
I’m still on the pill now until I can discuss w my dr if we can form a plan but I know she wants to do regular testing of my sex hormones when I stop it.
It’s hard because I have to still be able to work whilst this is all going on, even if just part time. I lost my last job when I came off the pill before I knew my thyroid was going wonky and can’t go through that again and not have any money coming in. I think that’s why I’m not wanting to be completely debilitated for months because it had such a huge emotional and financial impact before.
Also yes just to say I figured the levo brand may be the problem so tried a few different ones but my problems persisted unfortunately I just don’t feel like my body wants more than 16-17 t4 - almost like it doesn’t know what to do with the extra?!
Disclaimer: sometimes I know what I’m talking about : ) sometimes I’m spitballing with just the powers of logic … here’s me doing the latter!
So.. here’s my opinion.
So, I agree with you ( you have researched more, but) I bet the pill was masking your early hypo situation. Did you make any conclusions on that with what you’ve learned?
I’m only conflicted bc you say getting off Levo was easier than the pill. But from my hypo life perspective, I think you won’t feel better in any case until you bring your T3 up.
So I would make a decision - NDT or T3.
I could place your bets on NDT vs T3. Layman’s opinion, I’d go to NDT because of my (maybe misperception) that you need T4 when pregnant. Check you r other posts someone sent you links on t3 and pregnancy.
Then get an appointment. And hopefully by then you’ll be closer to the 6 weeks mark while off Levo. I don’t like the idea of being off for so long, but also don’t like the whiplash a quick change would give you. But that’s balanced by my worry that your Ts must be tanking and I think you should get yourself a thyroid panel test and then get on your replacement of choice.
Give that 6-8 weeks to settle. Track along the way. And after a few titrations I would tackle getting off the pill - either weaning if that possible or possibly cold Turkey! But once you make a good decision re your next thyroid hormone replacement, you will set it and forget it for 6 solid weeks.
Again - what do I know : ) but one more opinion to consider.
Also want to drop Lio because my well intentioned but clueless doctor thought that was the solution to why I felt terrible after 9 months left of 50 mcgs of Levo.
Never had a chance to see if I could convert on my own. Never had t3 tested before t3 was added. Found the forum right after.
So went to 50 mcgs Levo + 10 Lio. I’m now up to 75 Levo/same 10 Lio.
One thing to add to your considerations - have you been on the pill for a long time? I think you need to leave a decent gap from coming off the pill to trying for a baby. This is my personal thought as I had issues when leaving it only a couple of months.
I’m not a doctor, as I say, it’s just my personal experience.
Yes I’ve been on it for over 10 years but I was told as I have PCOS my chances of conceiving will be better in the months after stopping as my hormones will be less out of whack.
I would just like to know for clarity, your GP prescribed you T3 without a shared agreement with an NHS/private endocrinologist? I didn’t think that was possible.
Hi! Ah no sorry- I gave up with the NHS pretty quickly tbh and have been seeing a private doctor for thyroid stuff as I can’t bear the stress of trying to explain things to an NHS GP- tbh o felt from the start they didn’t believe how debilitating my symptoms can be.
You do all right. There is a lot of information to get our head around and relay which is no easy task when so unwell. And, clarities help us all. Chat soon 🫶🏽
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