My last tests were t4 at 14% through the range and t3 at 27%. This was on 10mcg t3.
Now whilst I have only increased my dose for just over a week (I realise this is early days) I am now in such joint pain (my main symptom) (always has been).
Before t3 my levels were at 31%. My t4 was 57%. I still had joint pain but not like this. It feels like before I was diagnosed.
I don’t understand why I would feel this as my t3 levels are still around the same as before t3.
So my questions are:
Does anybody know it it’s due to a drop in t4 and that this is why some people get on better with both levels in the higher range? Is this just not strange as t3 is the active one?
Is this the difference between naturally converting and synthetic? Even though I can never seem to convert over 30%?
Is it low ferritin?
I am now on teva levo which I know doesn’t work well for me so I expect my t4 has dropped again.
Basically I feel like I’m not on any thyroid hormones apart from an improvement with constipation which is weird if it helps one thing why not more.
Anyway I don’t see the endo until 8th June and I just don’t see how I can carry on until then like this. I know it’s only a week or so but I’m concerned by next week I won’t be able to work. Thinking about going back on 100 mcg t4 but don’t want to be reckless with this trial of t3.
Any advice/thoughts would be much appreciated.
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I'm sorry you are having symptoms. I can only go by my own experience in that levo caused many symptoms but when T3 was added to a reduced T4 I felt so much better. However, on T3 alone all symptoms resolved.
Thanks for that link. It’s really interesting. I’m going to get my laptop out today and have a proper look round it. Reading on my phone is painful lol.
With regard to your symptoms resolving on t3, that is what you’d expect isn’t it? That’s why I find it strange that mine are coming back. However, ‘levo caused many symptoms’... do you mean that you had more hypothyroid symptoms or maybe an intolerance to actual levo?
My last tests were t4 at 14% through the range and t3 at 27%. This was on 10mcg t3.
So, did you go from 10 mcg T3 to 20 all in one go? Or did you increase by 5 mcg every two weeks, as is always advised?
Does anybody know it it’s due to a drop in t4 and that this is why some people get on better with both levels in the higher range? Is this just not strange as t3 is the active one?
It could very well be. Levels of both FT4 and FT3 are a very personel thing. Some people need both to be high even when taking T3. Others - like me - are better off with zero FT4. It's a matter of finding your own optimal.
This obsession of doctors for reducing levo when adding T3, no matter what the FT4 level, is difficult to understand. But, that is the protocol and they obviously aren't capable of thinking it through for themselves. Your levo really didn't need reducing, your FT4 wasn't very high. And taking T3 reduces the level, anyway. So, your endo was obviously just barging along without thinking of the possible consequences. So annoying. Do you have any spare levo you could try increasing the dose back to 100 to see if it helps?
Is this the difference between naturally converting and synthetic? Even though I can never seem to convert over 30%?
Not quite sure what you mean, here. Bother levo and T3 are synthetic. But I'm not sure there is any difference betweent the T3 you have converted in your body from T4, and T3 you have taken as a tablet. That shouldn't make any difference to symptoms.
Is it low ferritin?
Could be. Or, myself, I would think it's more likely to be low vit D or zinc. Or even some other nutrient. Have you had them all tested?
I am now on teva levo which I know doesn’t work well for me so I expect my t4 has dropped again.
Teva makes a lot of people ill, so it could be that, even without your T4 dropping again. It's the fillers in the tablet that affect people.
Basically I feel like I’m not on any thyroid hormones apart from an improvement with constipation which is weird if it helps one thing why not more.
Ah, well, that's because the hormone you're taking is not distributed equally amongst all the cells. Some could be getting too much, and some none at all. And, it's the supply of hormone to the different cells that affects symptoms. It could be that a decent amount is going to the cells that control stomach acid levels, thereby improving your constipation, but not enough to the cells in your joints and muscles.
Thinking about going back on 100 mcg t4 but don’t want to be reckless with this trial of t3.
I don't think that would be reckless. It's what I would do. You have to be very carefull what you say to your endo about the results of this 'trial' - which isn't even a fair trial, anyway! - because he's probably just looking for any excuse to stop your T3 again! They're sneaky so-and-sos!
I am afraid I did jump in with the extra 10 mcg. I had extreme heat from the initial 10mcg and was advised to split between 3 doses. Did this and that resolved itself within a few days. So I upped to 15 mcg for a couple of days then went in for the 20mcg. Back into 2 doses as well. Mainly because I can’t phaff around with levo, lio, vitamins, iron timings. Have been considering going back to taking morning levo and lio together too just to simplify it more.
I get that we are all different with what t4/3 levels suit us. May I ask how did you find that t3 only was for you? Did you just continually cut down on your t4 or you knew fairly quickly from the drop in your t4 once you started t3? (Does that makes sense?) I thought the reduction in t4 by the endo was just their tsh obsession, which he tells me is well documented 🙄.
You did understand what I meant on natural conversion and synthetic. Thank you. I too didn’t think it should make any difference. But maybe this is why some people do better on both? 🤷♀️
I have had my vit d tested. It was low. I loaded and now supplement along with b12, b complex, magnesium and selenium. I haven’t had zinc done though. I will find out where to get this done. 👍🏻
I had teva last year and noticed it just didn’t work for me. I did mention it to the endo but 2 nd prescription came through 75mcg again 🙄 and I can’t keep hassling the bloke so thought because of taking t3 i would just take it as almost exhausted my ‘spares’ the previous couple of months. I don’t think I react to the fillers just feel it’s really weak. Mind you saying that I am getting heartburn a lot.
So I need to wait to get the hormone equally distributed to all the cells? That’s what I find puzzling. With t3 levels pretty maintained and hopefully now increasing why the joint issues 🤔. Also last year I almost cut my thumb off with a butter knife. Very recklessly trying to get a stuck cork out of a bottle of fizz. Stupid. It healed but the nerves haven’t. I also recklessly did some yoga. Reckless because I’m hyper mobile. 1st Lockdown obviously locked down my brain cells too. Anyway have had a numb upper thigh ever since. Osteo and chiro have not helped. Now the thumb and thigh are worse. Cold and pins and needles feelings.
I just assumed that this would all improve on t3 not deteriorate. I can up my t4 but then I feel like I won’t know if t3 really is the answer I thought it would/should be. I would be really interested to know how you got to the t3 only stage. Whilst I realise some don’t but it seems logical that it is how it should be doesn’t it?
Oh and as for the trial. I realise I have to be careful. It’s on a need to know basis hence why I’m here and not asking him 🙏🏻 thank you for this forum.
May I ask how did you find that t3 only was for you?
Oh, that is a long, complicated story - and I'm sure it's very boring. It took years of messing around. But, I think I probably told the story on my profile.
I thought the reduction in t4 by the endo was just their tsh obsession, which he tells me is well documented 🙄.
Well, if it is their obsession with TSH then that is just further evidence of their ignorance and incompetence. Because adding T3 is going to lower the TSH anyway, and a little reduction in levo is not going to make the slightest difference! lol
Also last year I almost cut my thumb off with a butter knife.
Good lord! You must have very tough butter where you live! My butter knives wouldn't cut a soft boiled egg, let alone a thumb! lol
That must have been very painful. Sorry it's not healing well.
I just assumed that this would all improve on t3 not deteriorate.
Well, it probably will - when you're taking enough T3. But, at the moment, your FT3 level is probably still quite low. These things take time, even with T3. So, don't give up hope yet.
Yes! Of course! I have read your profile before. What a long journey you have suffered. I’m so sorry that doctors A to Z are so bl**dy crap. But your profile dose give a smidgen of hope.... and I appreciate the time you took to write it. Thank you.
The tsh ideas are strange. He asked me if I wanted more levo. I replied no (true to my doctor manipulating self) why that would only push my tsh down and do nothing to raise my t3. He asked me to spell out what I wanted. I said t3 and he said yes but he had to get me to ask. What??? I have to ask for something that will also lower my tsh but that’s ok?? I never said another word.
The butter knife incident was the level of force behind the knife! It wasn’t painful at the time weirdly. It isn’t now just uncomfortable but the leg/thumb thing are minor. Just yet another noticeable symptom from the med change and a lesson in engaging brain before, well basically before doing anything! Lol.
I note you have settled on 75mcg and realise that my dose is small. I won’t give up hope yet. Thanks for the encouragement and help/advice/support..... 😊
Oh gosh, what a dilemma! I’m on a T4/T3 trial with NHS and it has been such a rollercoaster. FT3 has been all over the place, 11% on levo only, to 41% then down to 23%, either because of antibiotics or increase in levo. Have just scored an increase in T3 but would have preferred to try another increase in T4 as that is still under 50%. It’s done a number on me psychologically, along with lockdown, one supposes, as I have just felt so bloody under medicated, to the point that I can’t apply for jobs because I’d be off sick. So, I’ve felt as if I am lacking any agency whatsoever in any area of my life and frankly wouldn’t survive another lockdown at this medication level.
Anyway, I’ve been open with the endo and followed his advice as I think it needs a bit of mutual trust. He’s saying that if this increase in T3 doesn’t work after 4 weeks, we will up T4 by which I understand that he’s not a TSH fanatic, thankfully. So, I think we will get there, maybe in another few weeks.... by which point I will have lost 5 months of my life to this! But I do think we are building up some trust and understanding, which is a huge relief. I feel like he genuinely wants to get me better... and now that I am assured of that I can ride out this dose. I don’t think it’s the one, again, but I totally understand why he wanted to try it.
But our situations are different. I don’t need to work until next year and additionally can’t go back to my old career if the T3 doesn’t work better than levo, so... waiting it out makes some sense in my case. But it’s really tough.
Can’t remember if your trial is private or NHS? If it is private, I would definitely be saying up the levo now and prescribe me something other than Teva. Hell, you’re paying, so I think the power balance is different. If it was NHS, I’d be more inclined to consider playing the game their way because your long game is the NHS prescription and the power is in their hands on that. But... so much easier said than done. I am not sure I would have started the T3 trial if I’d have known it would be like this. I would have grown a pair and figured out self-medication or asked to try a plain old increase in levo just to see. And I’ve had tearful days where I wanted to throw in the towel and looking back, it’s a miracle I haven’t. I cried all over my friend - loud sobbing and snot - over it all on Thursday to the point where he took me out walking yesterday as an act of kindness and worry, I think...
Even if it is NHS, you can ask for more levo now and see what they say, but in my experience (tried that!) the answer will be “wait it out”. Still, you lose nothing by asking. And it is transparent with the endo, so all good?!
Aw... Lotika.... I remembered you were on the trial too. I’m so sorry you have found it so mentally draining. Horrible to read you’ve been so upset and I am glad you have a good friend to sob and snot all over 😉.
I do totally understand how you feel. I have found it hard too as you know. Hence my regular posts. I try to think to leave it and post in another week but I am so obsessed with it that I can’t help myself and need to hear people’s experiences and opinions. If it were anything else I would just walk the dogs or try to keep busy but I feel fixated on it and that in itself doesn’t feel healthy.
So.... I am going to suck it up and give my aches another week. I owe the t3 another week at least. They get easier as I move and I realised I should have come on three days ago and haven’t so something is happening 👏🏻👏🏻 That’s a positive as my cycle is every three weeks generally and it’s a pain in the bum.
The trial I’m on is an nhs one. I did ask recommendation for private and said I wasn’t against self sourcing but obviously I’d prefer to have a legitimate supply. That’s when things changed and I got the nhs trail. To be honest though I asked this time for 100 Levo and 20 lio. I got the lio. I worked off the basis that I didn’t want 15 lio and expected that was all I’d get if I didn’t ask for more.
Let’s see how the next week goes. I’ll be glad to see an improvement in anything now..... although I have just noticed my big toe nails are finally growing. Sliders will be out this year 👏🏻👏🏻👏🏻👏🏻
You don’t mention what dose you’re on now? Have you noticed any improvements at all? I think maybe our preoccupation with it all isn’t helped by the mental symptoms attributed to being undermedicated x
I hear you - the whole thing is just really tough and I think, as you suggest, that we don’t - or I don’t anyway! - regulate emotion properly when under medicated, just to make it tougher still! I was on 100 mcg levo, which they cut to 50 to introduce 2 x 5 mcg lio, then I got an increase to 75 levo and now I’ve had another 5 mcg increase in T3 this week, so I take 10 mcg in the morning and 5 in the afternoon.
Today is the first time I’ve noticed some improvement and I can tell that my fT3 is definitely higher in range than it was because the body doesn’t hurt so much and the mood is improving again... but I think I might need more T4... I find the T3 quite unstable! Still, I guess it will take a little while to settle down and maybe that will help. I’m not convinced that this is the one yet... we shall see!
Do keep posting for support on riding out the dose change - or changing it, for that matter: I could never have guessed how difficult it would be, quite honestly and if I’d had a job I would have been signed off sick, I suspect, so I can’t imagine how people in work manage! I feel like it is some kind of purgatory that’s so hard to explain to anyone. You feel like rubbish because your dose is too low. You can’t be positive or see the light at the end of the tunnel because your dose is too low. You can’t advocate for yourself properly with the endo because the dose is so low you can’t think straight! And you can’t explain it to anyone because you can’t find the words! You couldn’t make it up.
I am definitely guilty of obsessing about the thyroid, ha ha! But given that it impacts us in absolutely every way imaginable and in several ways I had no idea of before starting T3, it’d be odd if we didn’t, I reckon! What keeps me keeping on is that there have been enough improvements that I know I need T3, so I have to figure out the dose at some point. And now that I’ve come this far, so I don’t want to “throw away” the suffering through the dose changes and hard work I’ve put in to get here. And the end game, which is that the NHS should be paying for my T3, so the hard yards now will save money and stress in the future. But seriously, I feel like we will have earned that long term prescription though some big sobs and snotty tears! And finally, for me, there is some light at the end of the tunnel, so I think it will be worth it. Whether it actually needed to be this difficult though... I mean they do all seem to insist on cutting T4 massively to screw us up as much as possible at the start, don’t they?! Bizarre.
Oh yes. We have definitely earned the obsessing and the tears!! And the end game... you’re are so right. Being able to get a legitimate source and saving money too. It has to be worth persevering rather than throwing the towel in early. I really feel for everybody that has to fight for it. It’s dismal. But I do feel that I have suffered for so many years that I shouldn’t feel guilty that some out there deserve it more than me. They do. I know it. I used to say I’m donating my body to medical science and then they’ll know what was wrong with me and I’ll look down and say ‘I told you so!!’
Back to you. Have you tried splitting into 3 doses? It was Radd, amongst others, that explained this to me and it worked!! Do you recall that extreme heat I kept whining about when I was on 2 x 5 mcg? That totally went. Now I take 10 mcg in the morning and 10mcg in the evening. No ill effects so far. 🤞🏻🤞🏻
And whilst I understand that you find t4 much easier to take than t3, surely when you convert poorly (didn’t you have 11% at one time?) is it worth going down the t4 route? Maybe the lack of stability is because you are simply undermedicated on it? Just a thought.
As for working, I’m part time for a company and then part time for myself so it’s not so bad. The hardest thing is that lockdown came and my boys moved back home. They are 20 somethings and I found the mess and food etc for a family after a couple year of just the two of us, hard work. Love ‘em!! Lol.
I hope you have a good day today. I’m off out for my first meal out in 🤷♀️ how long. No cooking today. Lucky old me 👏🏻👏🏻👏🏻.
Many people don't do well on Teva. I found it almost laughably different to all other brands. I dumped it and told local pharmacy in future to give me anything but Teva and they recorded that. Luckily I had a store to get me by. Docs won't specify the brand but pharmacies will help you out.
Yes agree that docs insistence on reducing Levo when adding lio is ridiculous. I like my Levo to be high for sleep. Then the lio hells pain and stiffness. That said, I might try next the large increase in T3 to get me off the Levo...
I know exactly what you mean. However because it was written 75mcg they wouldn’t change it to a 50mcg and a 25mcg. That was 3 that I tried. Said ask your endo or gp to alter it. Well that would have taken an age so the first time I used spares and told the endo. He forgot/didn’t absorb conversation and sent another one for 75 mcg 🙄. Why is nothing ever straight forward??!
Yes I’m with you on raising lio. I am going to stick with it for as long as possible and see if I can get another increase in t3 next. Good luck with it x
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On average, how long is it likely to take before I feel a decrease of 12.5mcg Levo?
Feel like giving up...constipation has come back :(
Feel rotten all the time
I’ve just read for the first time that TSH is involved in T4 conversion 
Feel like my old self has died
