Do you also think that I should take more of both?
TSH: 0.151 mU/l (Range 0.2 - 5) -1.02%
FT3: 3.89 pmol/l (Range 1.8 - 4.5) 77.41%
FT4: 14.8 pmol/l (Range 7 - 20) 60.00%
I need to take more levo or more lio, or less of one or the other but not more of both. Especially since my heart is beating faster. Without going into dosage details for now, what would you advise at first glance?
Thanks in advance for your informed opinion.
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Koola
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As you've not had any replies yet. By responding I've brought your post into today's feed so hopefully someone will make suggestions and offer you some guidance.
Are you taking any vitamin supplements? A fast heartbeat sounds as though you might be slightly overmedicated, but your FT3 and FT4 results look good. How are you feeling otherwise?
I once became overmedicated because I took B12 and D to correct lowish levels and lost some weight. I ended up having to take quite a bit less Levothyroxine, but that's another story. Improving vitamins really does make your thyroid hormones work better.
Hopefully one of the very knowledgeable people here will reply to your post soon.
Yes, I take B12 with methylcobalamin and D3 +K2 and at times iron (it solves some digestive issues).
And yes, my results are good, even very good according to many who now feel well with those numbers / ranges. I’ve been getting almost the same, good results for almost a year and – I’m getting worse all the time!
I’ve gained a lot of knowledge here compared to what I knew before, i.e. nothing :D, but at times very knowledgeable people have different and contradictory opinions, because we’re all individuals and there’s no “one size fits all”. So, I listen to advice and titrate etc. but no improvement, on the contrary. With this post I was hoping for 3 or 4 replies that I could narrow down to a consensus of sorts…
I didn’t know vitamins could affect levels. Are you on levo or lio or both? If you want to tell me more, you can also pm me; I’m interested, also because I think I need to up my Vit. intake.
From personal experience I would back off on the T3. I have tried pushing T3 higher and T4 lower (I aimed at T3 only but felt dire before I could get off the final 25mcg T4 so didn't do it). I haven't found nirvana yet, but for me it doesn't live up there with 70+% through range FT3.
Both FT3 and FT4 have been in the upper range for almost a year, bear one or two lab tests, with FT3 in the 70s for a while (too tired to be more precise right now but I can post results eventually), so obviously no nirvana there for me either. Between my heart beating faster and troubled sleep, after my first long period of higher T3 intake with lower levo, I also think I need to reduce T3.
For the past 10 days, more than just brain fog, I feel like there’s a metal circle around my head, my tinnitus is ringing like bells at Westminster Abbey, my legs are like empty wool stockings, when my knees don’t hurt, plus exhaustion etc.
I often wonder if I have a more serious health issue that this unresolved thyroid dosage one is covering up for? Have you, or anyone, since this is a public post, ever had these thoughts?
And if it were the case, where to begin examining which or what?
I think that always crosses our minds if we can't fix ourselves. But I don't think it likely in my case. My endo. has been very thorough to monitor my full blood count for around 3 years now. He explains every result on the full count list at every appointment so I'm confident that he's not missed anything there. He's also asked for various other rests to be carried out for me. Celiac, Cushing's, other adrenal issues, he got me a thyroid scan. He listens to my heart (with it's arrhythmia) every time and takes my blood pressure when I'm relaxed at the end of our appointments. I don't think there's anything else going on.
10 months ago you went back to trying levo only again, at about 88mcg , ( after many changes in levo /T3 dose, giving T4/T3 levels the looked good but didn't feel good)
How long did you stay on a stable dose of levo for ?
What prompted the decision to go back to adding T3 ?
You current symptoms and thumping heart sound like possible overmedication to me.
i've just read through you posts since you started on T4/T3 combination in June 2021 to try and get a picture of what you've tried with doses already .
and honestly koola ..even though my memory is pretty good and i can usually do a summary of peoples dose changes over time , i got totally lost with your constant changes.
I can't help thinking that if my brain was struggling to keep up , how the heck can your body be managing to keep up with having to adapt to all these changes in what it's getting ?
i know that it takes my body at least 3 or 4 months to start to feel better when i've made small changes in just Levo .. if i want to give a new dose a try, then i aim to give it a fair trial of at least that long ~and preferably longer .. 6 months .
So without going into doses ( because i got lost anyway ) i think perhaps you should try changing your way of looking at what you are doing to include "leave it alone for much longer"
You asked at the beginning of this post whether you should increase Levo or T3 because 'you know you need to take more' .
But I think the assumption that you need 'more' is probably not correct , i think you may actually need 'less' .
and i think you need to leave things alone for much longer than you have been doing before you can reasonably expect your body to feel better.
6 weeks is the absolute minimum , but often the body needs many months not a few weeks to accommodate itself to a change , and ONLY THEN can it start to work better again,
i got the general impression that you are giving something 6-8 weeks , finding it intolerable and changing it for 'something else' ( forgive me if i'm incorrect about that , but like i say , it was hard to keep up)
So perhaps try having " take less ,and wait longer" as your general philosophy for a year and see where that gets you .. it will be tough to stick with something that feels 'wrong' for 6 months , but perhaps it's worth a try ...... "changing often because this dose is awful" has given you a really rough 2 years.
i don't know what dose you need ...but i do know your body will be crying out for a bit of stability and consistency in what you give it to work with .
I’m glad I did labs again and posted because from being confused before, now I’m even more lost in the woods! Hopefully there’ll be some clarity if I explain my case. My confusion stems from all the contrary indications, advices and comments I’ve read in the past 3 years.
Pre combo was simple: 100 levo for years, then 88 for years then 88/94 i.e. 91. Not good on paper (though I knew nothing, pre Forum days) and though docs said all was in range and therefore fine. And not good for me because symptoms kept appearing and getting worse.
So I started the combo. I was told to add 6,25 to my 91 T4 and see how I felt and if okay after 3/ 4 weeks add another half. I stayed on 91/12,50 for many weeks, then reduced lio to 6.25.
Now to advices from knowledgeable people, as briefly as possible: up the levo to 100 and reduce lio to 6.25 and re test in 6 weeks. Tests good, patient worse. Well then take 75 levo and 12.50 lio. Retest in 6 weeks. Tests good, patient worse.
Since, I’ve been told that you have to take more levo with less lio or the opposite is all wrong, they don’t interact that way… Recently was told that one can change lio every 2 weeks because of its short life span (sorry, can never remember proper term). But I was also told to stick to one dose and not change one iota for 8 weeks. You say that 6 to 8 weeks should be 6 to 8 months.
There are the recommended “best ranges” for FT3 & FT4 (above 50% at least) which I attained, but others say it’s totally individual, and lower can be better. What I particularly don’t get is why I was feeling so much better - functioning, not housebound etc. - when my labs were all over the place, with TSH way up or way down and FT3 FT4 cowering under the stairway. Granted I was slowly going downhill, one symptom after the other popping up at a time. Anyway, whoever’s right or wrong, I for sure haven’t found the right way and dose.
You are totally right with “you are giving something 6-8 weeks , finding it intolerable and changing it for 'something else'”. Once in a long long while I have one good day, usually whenever I change something. I’ve hoped that if I had 2 good days in a row, then I would stay on that dose for much longer; a friend experiences the same and believes it’s due to the enzyme D3; some talk about D2 (deodya? – sorry can’t remember). Way out of my league and no lab here can test this.
I stopped the levo only after 10 days, as I did my last 12 day NDT trial. It’s not just feeling awful, more like about-to-die! For levo only maybe I should’ve reduced 12.50 T3 dose first? And now again, contrary opinions around T3: take it like T4, no food before or after for 1 hour (others say 2). T3 is much better with a little food. T3 should be taken every 5 hours; No, better all at once; it stays active only 24 hours. No, up to 3 days…. etc.
Whatever I’ve tried that hasn’t worked I’ve been told after that I was given wrong advice. Or that I should be dieting (gluten or lactose free) or taking more of this or the other vitamin. Sometimes it appears a bit like “victim blaming”: if I don’t improve when the theory is correct then I’m “wrong” because the theory isn’t to be put in question. Okay, rant over.
… Almost: often told that my doses are piddling / or that my changes are too big.
Back to now: I was on 75 levo and 15 lio. I thought and wrote that I needed to take more levo or more lio, or less of one or the other but not more of both.
I’ve never been on 15 lio for so long. Because many say my doses are so small, probably compared to mine, I wondered if I should take more levo. But you’re right about my faster heart beat, and it’s likely the lio.
Maybe I need to slowly reduce it and go back to 91 levo/6,25, then 3 lio and then stop lio entirely. Because we’re supposed to introduce changes very slowly, according to some (though others say it doesn’t matter etc.)
Your advice is Choose a dose and just stay on it for months on end, whatever the “real feel”.
I can try but if I get worse than now I won’t be able to function at all. Let alone write endless posts like this one! Have to add that I live alone and have no close friend around and no support group. No endos on the island and the ones I’ve seen or talked to on phone are helpless (you’re fine / it’s all in your head etc).
I’m not criticizing or complaining just to blame those who have generously taken time to help me, but sometimes I think those of us who are “over the hump” forget that words like just do or change this and come back in 6 weeks, seem like a dismissal and 6 weeks can be a very long time.
Last thought: maybe in the end the solution is entirely individual and theories must be disregarded?
I was once told kindly not to apologize for long posts. Yet, if you’re still here, thank you very much for bearing with me, Tattybogle.
1) 10 days after stopping all T3 and taking just levo .. (because felt like you were dying)
think about what is happening to your TSH level ,and the cells all over your body at that time, and it may help you understand why 10 days is too soon to change it again.
You remove all the 12.5mcg T3. which has been having a supressive effect on your TSH .
Due to the TSH being low and your fT4 level being relatively high ~ your conversion of T4 to T3 within your cells will have been 'not much' for quite a while.
( this is due to the de-iodinases D1, D2 and D3) adjusting how much T4 is converted to T3 , and how much T3 is 'recycled' to T2 ~ because they are affected by the fT4 / fT3 levels and the TSH)
until the TSH has had time to rise a bit, and until your new levels of fT4 / fT3 have settled ~ your conversion of T4 to T3 within your cells will stay as 'not much'.
During this time (while waiting for TSH to rise a bit and new fT4/ FT3 levels to settle), you probably won't have enough T3inside some cells .. and all the cells that had got used to being spoon fed 12.5mcg every day ,will suddenly be having 'not much T3 ' until their deiodinases figure out they need to start making their own T3 again from T4.....so you'll feel horrible .
The TSH may take at least 10 days to even BEGIN to rise.
and the same for the new levels of fT4 / fT3.
So however horrible if feels at day 10 .. that doesn't mean you wouldn't have started to feel a bit better again better by week 6-8 .
TSH can take at least 6 weeks to rise properly . and when it 's been very low for a while it can take months to get where it's going .
So the only way to know if levo alone would get you back to feeling better than combo does, is it to give it long enough to get past this period of the body going "WTF? just happened " and allow it to reset itself to having those new levels of fT4 and fT3 and to allow the TSH to settle in response to them ...however crap it feels while that process is going on.
hopefully you would be feeling 'a little better again' by week 6-8 if things were actually going to improve .. and if so, then that would encourage you to continue to see if improvements gradually continue over a few months .
( For myself i suppose i'd draw the line at " if i'm STILL getting actively worse, AFTER week 5/6 , (rather than feeling a 'little' better again ) .. the perhaps i'd jack it in at that point and consider adding a tiny a bit of T3 back in ie. approx 5mcg and stick at that for at least another 6-8 weeks .. without assuming the T3 dose would need to need to be increased at all )
2 ) As for why the advice often seems inconsistent / or contradictory :
have a look at the picture below .... the 'usual' fT4 / fT3 levels of 10 healthy people (who don't take any T4/ or T3 ).
see how some have both their usual fT4/fT3 levels high, towards 70% or even more
and some have them both low, at about 20% ,or even less.
about half have their usual fT3 a bit higher than fT4... and the other half have their usual fT3 a bit lower than fT4.
If we assume these are the levels these individual bodies 'prefer' to have, (since those are the levels their de-iodinases choose to give them) ..
then we can also assume that person 3 would probably not feel well, or function well, if you gave them the fT4 / fT3 levels of person 7.
So it's just not possible to have any advicea about fT4/fT3 levels that will work for everyone .
All any of us can do is gently feel our way ,one logical step at a time ,through "what feels better ,and what feels worse" until we (hopefully) get somewhere close to what our body prefers (which won't be anything like what anyone else's body prefers) ... and accept that for a lot of this time while we are searching .. we will be in the 'wrong' place for us , and feel rubbish.
Because lots of people who answer posts don't take the time to go back through previous posts to figure out what you've already done before , it helps to make sure new posts have a summary of what you've done already ( or a link to it ). that helps to avoid too many 'off the cuff' advices about what you 'should' be doing ... but with the best will in the world , and even when people have done the homework about 'you as an individual' ... everything on the forum is just an opinion about what helped them / or what they have found helped others .. there is no way for anyone to know for sure what will help an individual .
Everything has to be trial and error ... my opinion is that you need to 'trial' for longer than you have been doing , before deciding it's an 'error'
person 3 would probably feel rubbish if you gave the fT4/fT3 levels of person 7
Wow! Quite an instructive and revealing exposé... Many thanks! Had no idea that healthy people had such different levels. Will sleep over it and answer soon. Wishing you a very pleasant evening.
Well, you certainly gave me a master class, or rather a mistress class, on how it all works. I have begun to grasp what the dinosaurs, I mean the dio-dinases are. I'm picturing them and t3, t4 as little cartoon characters and it's starting to make sense. (I've got a simple mind, even pre brain fog 😅).Understanding what's happening is key - especially when pain is involved. Often I've wished that doctors and nurses had told me beforehand that what they were about to do was going to hurt, instead of, eg, yanking a tube out of your vein...
And I now also have an instruction manual on how to get back to t4 mono. And when in the throes of ill being, i can talk to the dinosaurs and T-rexes 3&4.
The combo hasn't helped but retuning to T4 only is also a question. (Not that I have much choice. I also briefly tried T3 only... )
However, I have read posts of two people saying that when they upped levo by 25, say, to 100,
they felt miserable but upping it to 112 was just fine... ? Considering your explanation I suppose it fit in with their original healthy individual levels.
I hope it applies to me because returning to 91 and not improving at all ...😩
I understand point 2. Nevertheless, I wish more people on forum, or doctors (and politicians! while I m at it) i.e. all people in a position of authority would be gracious enough to admit that they're not sure / don't know exactly what is going on / don't have a solution and have to give it a think. 'Nuff said.
But in the future I will post info about my case.
I plan to inch towards T4 mono therapy, reducing T3 very slowly.
Not sure if I should stay on 75T4 or up it to 81 , hold it a few weeks and then hit 91 and move in there for a long stay. Hope you can tell me what you think. And then I ll gallop off on my own and let you alone!🐎
"on the way to mono-levo therapy, from 75 T4 and 15 T3, I ‘ve been on 62, 50 T4 and 2,5/3 mcg T3 since 25 Feb. Actually I felt much better the first 4 days, 3 days so so, and now, 2nd week, getting worse by the minute. Just wondered if 62,50 T4 isn’t too little, considering I was on 12 and 15 T3 for over a year, As mentioned before, I always thought you have to take more levo when you take less lio, until someone said that’s not the way it works. Anyway, I’ve reduced both and that might be a bit much?" I’m thinking to raise intake to 69 T4 then 75 again with the 2,50 T3, before stopping T3. Just hoping for some sort of homeostasis to slowly take place. Hope you have a suggestion!"
....you were taking 75mcg levo + 15mcg T3.
but you now want to go back to trying just levo alone because overall you felt better on that that than you have sinc adding T3
" from 75 T4 and 15 T3, I ‘ve been on 62, 50 T4 and 2,5/3 mcg T3 since 25 Feb"
I don't understand why you lowered your levo dose to 62.5mcg ? ~ i would have kept it the same for now (or increased it a touch to compensate for removing some T3)... i wouldn't have lowered it at the same time as removing some T3.
Please can you clarify, does "2.5/3mcg T3" mean you are now taking "2.5mcg T3 ,3 times a day" ie daily total 7.5mcg ?
or does it mean "2.5 or 3 mcg (ish) daily, because cutting tablets accurately is tricky" ?
Actually I felt much better the first 4 days, 3 days so so, and now, 2nd week, getting worse by the minute. Just wondered if 62,50 T4 isn’t too little,
It seems reasonably common to feel good for 'just the first few days' when reducing ( I've no idea why or how , but it is) , so that doesn't tell you much .
But i can't understand why you reduced the Levo dose.
I always thought you have to take more levo when you take less lio, until someone said that’s not the way it works. Anyway, I’ve reduced both and that might be a bit much?"
Well that's true ~ people may not always need to take 'more' Levo when they reduce the T3,,, but i still don't understand why you decided to reduce it.
I’m thinking to raise intake to 69 T4 then 75 again with the 2,50 T3, before stopping T3. Just hoping for some sort of homeostasis to slowly take place. Hope you have a suggestion!"
I honestly can't advise you very well about how to go back from Levo + T3, to Levo only , as i've never done it ( and never taken T3).
But if you've lowered your Levo dose AND lowered T3 from 15mcg to 2.5mcg/ day all at once .. i don't think that was the right way to go about it.
I'll tag SlowDragon in case she can advise how to do it better than i can.
I want to go back to trying just levo. The last results were from 75mcg T4 / 15mcg T3. I then reduced to 62, 50 T4 and 2,5/3 mcg T3 since 25 Feb.
- And yes it meant "2.5 or 3 mcg (ish) daily, because cutting tablets accurately is tricky".
- As for feeling good the first few days, I always do for at least one day when reducing and often when changing brands or doses. This time it was longer and why I thought to stay on reduced T4 and T3 for a while to compensate for the overdosing, since you and someone else said that I was most probably overdosed.
Actually, when writing this last post, things cleared up in my mind and I thought I had reduced too much. And your answer confirms this. So, many thanks!
As you say it wasn’t the right way to go about it.
Now the question is by how much I should raise T4 and how long to stay on 75, before upping to 88. Some say it‘s okay to raise by 25mcg, others say smaller amounts, like 12, 50 or 6.25 and increase slowly. 25mcg has been difficult for me so I think I should go by how I feel. I’m starting to distinguish over and under dosage symptoms and taking my BP is a good indicator (goes sky high on over dosage).
Gleaning bits of personal and theoretical knowledge from many individuals is great at the start, especially since few doctors bother to explain anything (or misinform us...) Only by now I feel as if I had many pieces of a puzzle, but due to people’s varied experiences, it’s as if the puzzle pieces from two different boxes are mixed up. They might be from the Puzzle game of the Himalayas and the one of the Alps, so they’re very similar, snowy mountains and rocks, but they’ll never fit to make a whole picture.
So, a lot of patience and juggling between the “real feel” and theories is needed.
Hope this makes sense and can be of use to others struggling away.
Thanks again for your advice. Wishing you a pleasant weekend 🙂
my instinct is to go to 75mcg T4 now ,and stick with the 2.5mcg ish T3, so your body still has a little trickle feed of it .
Do that for 6 weeks ,note how you feel at the end of each week ,then get a test so you have proper baseline where to start from .. then report back here to discuss those results before changing anything .
i suspect that 75/ 2.5 may leave you a little undermedicated during this time, so i wouldn't expect you to feel great , but since you had tachycardia on 88 / 10 it's probably better to get it wrong by being a bit under for a while , than to get it wrong in the other direction ...
I'm a bit out of my depth ,as i said , but perhaps that is a workable plan ?
whatever dose you decide to go with , you need to stick with it long enough to get some reliable base line labs, otherwise everyone will get lost in the woods.
once you've got those base line labs after period of stability , you can then decide whether to drop the last tiny bit of T3 and/ or decide if the levo needs increasing .
Yes, I’ll do 75 T4 & 2,5 ish T3 as long as possible. If getting worse will raise T4 to 88 mcg keeping 2.5 T3. But I will wait to do labs till I feel halfway human again.
I realize that without lab results it’s difficult for anyone to make sense of anything – including myself! I still don’t understand why I was feeling incomparably better on T4 only , with “miserable” lab results like TSH way above range and FT4, FT3 way below? And my Vitamin D and B12 were lower in range.
Now they’re: Vit. B12 : 473 - range: 160/925 pg/mLR // Vit D3 : 53,7 – range : 30/100
It looks like I need to take more of both. What’s your opinion?
I’ll eventually do folacin and iron again, though folacin was always good and iron okay.
Thanks a lot for your long reply, Tattybogle.I hear you and I'll give it a think, But I already have a question and will post as soon as possible, later when energy rises a bit. 🤔
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Hopefully there’ll be some clarity if I explain my case. My confusion stems from all the contrary indications, advices and comments I’ve read in the past 3 years.
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