Hi, I've been stable for a while on 100mcg T4 +T3 12.5mcg then 10mcg (when it started to be prescribed we couldn't get 12.5mcg in uk)
I've been starting to go off for about 9months. I felt well with my T3 around 6.2(3.1-6.8) and it's gradually been declining to now at 5.58. My t3 dose was lowered slightly from 12.5 to 10 around 18 months ago so I was thinking it was this and planned to try an increase of 5mcg , aware I may then have to reduce my T4.
However I have read this morning that with a more supressed tsh the less you will convert. My TSH has been surpressed basically since I started T3. It was 0.251, 0.055, 0.012, 0.007, 0.009, 0.006. (0.27-4.2)
So now I'm wondering is it because my TSH is so supressed I'm now not converting my t4 as well as I was... So do I decrease t3 to try and raise my TSH to then convert better or do I increase T3 to compensate?
Before I started T3 I increased my T4 to 112mcg but it put my t4 over range at 25.6 (12-22) and t3 was 5.31 and I felt very unwell. I was tired, obese, my cholesterol was High. When I was feeling well I was dropping the weight and my cholesterol went back to normal. My periods became more regular though not perfect which I think is due to pcos. My hormones though still imbalanced were a much better ratio. I couldn't tolerate the pill and metformin or inositol had the opposite intended effect and made me gain weight and bloat and have migraines. My endo said there is nothing more he could offer from a pcos point of view. I'm looking into trying bioidentical hormones but it's expensive and I can't find many who have tried it to see if it worked.
Now I'm very fatigued again, struggling to lose weight and gaining weight eventhough and especially when I increase my exercise. DOMS is excessive. My dry skin and constipation is back. Basically everything that i had managed to improve. I haven't tested my cholesterol or hormones recently but my periods are becoming longer and further apart again :-<
I was planning to increase my T3 dose, but I'm worried that I'm doing the wrong thing and my TSH will become further suppressed and I'll convert less and end up back here needing a higher dose. Where does it end? On T3 only? Feel like can't win
Thank you
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Salphy
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I always associate constipation and cold hands & feet & low temps to T4 and sweating while not exercising and diarrhea with T3. In other words too much T4 or too much T3 causes the above. That's just me though, we are all different. Peace be with you.
Thank you I definitely dont get diarrhoea or sweating outside of exercise. So hopefully I'm far from overmedicated and will be ok to increase. Fingers crossed x
I would imagine that before you started T3, your TSH was higher than it is now, but you still weren't converting very well - which is why you started T3. So, why would you imagine that raising your TSH now by lowering your dose of T3, would improve things? You obviously need added T3, and taking T3 suppresses your TSH. I would think it would be the drop of 2.5 mcg T3 that has caused your FT3 to drop - but there could be other factors. Personally, I would just increase the T3 rather than mess around with reducing my dose in the uncertain hope that raising my TSH would improve my conversion. If you see what I mean.
Before I started t3 my TSH was only 0.352. But I was overmedicated on 112mcg Levo my t4 was 25.6 (12-22) and t3 was 5.31 but I felt really unwell.
Before that on 100mcg t4 only my TSH was 2.52, T4 14.7 and T3 3.78.
But my results have never looked as bad as I feel. I only felt better when I added the t3.
It's just frustrating and a little scary to be doing it alone as I'm getting little support from my endo at the moment understandably.
When I look at my results I dont see an alternative. I was unwell on the highest t4 I could take.
I'm just a bit scared there's something else going on that the T3 could be masking incase it isnt that also worrying because I've only been able to get hold of 25mcg tablets. So I cant replace the 2.5mcg I dropped.
My options are 3.125 if I can split it to 1/8 which will be hard or 6.25 if I quarter it and I think then I will probably have to drop T4. We'll see I think it's the only realistic option at the moment.
Before I started t3 my TSH was only 0.352. But I was overmedicated on 112mcg Levo my t4 was 25.6 (12-22) and t3 was 5.31 but I felt really unwell.
Your FT4 was over-range, but that doesn't make you over-medicated, because your FT3 wasn't much above mid-range. It's the FT3 the most important number. You are a pretty poor converter, and needed your FT4 well over-range to get mid-range FT3. Adding T3 was the best thing you could have done.
Before that on 100mcg t4 only my TSH was 2.52, T4 14.7 and T3 3.78.
You were obviously under-medicated: TSH too high and both Frees too low.
But my results have never looked as bad as I feel. I only felt better when I added the t3.
That's often the case.
It's just frustrating and a little scary to be doing it alone as I'm getting little support from my endo at the moment understandably.
Nothing to be scared about, you're doing fine. But, was your endo much support before the present lockdown situation? Not many of them are.
When I look at my results I dont see an alternative. I was unwell on the highest t4 I could take.
I doubt there was an alternative. But, why do you say you were on the highest T4 you could take? Just curious.
I'm just a bit scared there's something else going on that the T3 could be masking incase it isnt that
What sort of 'something else'? I don't see what else there could be that lowers your FT3.
also worrying because I've only been able to get hold of 25mcg tablets. So I cant replace the 2.5mcg I dropped. My options are 3.125 if I can split it to 1/8 which will be hard or 6.25 if I quarter it and I think then I will probably have to drop T4.
I think I'd go with the 1/4 tablet, if I were you. It's perfectly possible that you would have needed another increase in T3, anyway. Try that first, anyway, rather than messing around trying to cut the tablet into eighths. But, why do you think you'll have to drop the T4? You don't convert it, anyway, so what difference does it make?
Thank you. You always seem to know how to calm me down
I'm actually lucky he was quite supportive before lockdown. I went to him when I was on the 112mcg t4 which a private endo put me on. I told him I'd bought my own t3 from abroad but hadn't taken any yet and he encouraged me to try it.
He can't prescribe it for me but has written to my gp numerous times to help me to keep getting it prescribed by them as there has been times they've said the ccg has raised it with them and said no.
His back up plan if it ever does get stopped is to try me on NDT as he is able to prescribe that if he request individual funding.
But he is always very busy. I've often had emails or phone calls from him at 10pm and he only works for the NHS not private. And he's always atleast an hour behind appointment times. But not many of his patients seem to mind when we're say in the waiting room because he's so supportive.
But I emailed him asking if I could increase back in Feb and he said he was going to ring me on 3 different occasions. But then never did. Ive had a letter cancelling my may appt but says my dr will review my case and ring me. But it doesn't say when.
The 2 endo's said it was the highest T4 I could take because my FT4 was over range they couldn't or wouldn't want to increase it any further.
I'm not sure if there is anything that could show as low FT3 which is why I was worried theres something I'm missing that i dont know about. But also that my FT3 isnt that low. So are my symptoms coming from something else?
Ok thank you. I will go with the quarter. I thought I would need to reduce T4 as I expect that the additional 6.25mcg t3 will put me over range. When I was on 12.5mcg my t3 was 6.2. Now 5.5 on 10mcg. So I expect being on 16.25 may mean I need to reduce t4 to keep t3 in range x
The 2 endo's said it was the highest T4 I could take because my FT4 was over range they couldn't or wouldn't want to increase it any further.
Ah, OK. But, as we all know, endos tend to know little about thyroid. They don't understand the numbers. And the top of the range isn't a rigid, cast iron barrier, beyond which you cannot go. If they're not prepared to give you T3 then the only way to get your FT3 to a healthy level is to take the FT3 over the top of the range. They have absolutely no subtlety in their dosing.
I'm not sure if there is anything that could show as low FT3 which is why I was worried theres something I'm missing that i dont know about. But also that my FT3 isnt that low. So are my symptoms coming from something else?
I know a lot of people find it difficult to believe that such severe symptoms can come from just one little hormone being just slightly below what is 'normal' for them. But I assure you, then can. Your FT3 needs to be in exactly the right place for you - not too high and not too low - or all hell can let loose! So very many people have said the same thing on here: could it be something else causing the symptoms? But, 9 times out of 10, there isn't anything else. But, you have to try changing the dose to find out.
I thought I would need to reduce T4 as I expect that the additional 6.25mcg t3 will put me over range. When I was on 12.5mcg my t3 was 6.2. Now 5.5 on 10mcg. So I expect being on 16.25 may mean I need to reduce t4 to keep t3 in range
It isn't as simple as that. It's not a linear equation. You cannot say that because the result was x when the dose why y that if you change the dose to a, the result will be b. Because the odds are, it won't. It could very well be ghi! But, you have to try it to find out.
Your tsh is suppressed because you take t3. Presumably you take t3 because you are poor at converting. Cutting your t3 dose from 10mcg would not raise your tsh very much if at all.
Thank you I'm not sure I'm that bad at converting. I'm starting to suspect I'm just one of those who need their T3 high.
After all the normal range is an average so there's got to be some people who sit at the higher end. But then also worried I'm missing something else by thinking that.
I'm going to retest in the morning then start. Thank you x
You may need more hormone (L-T3) but I would try reducing your L-T4 first. The reason is that as you said TSH stimulates T4 to T3 conversion and a low TSH will reduce your conversion.
TSH stimulating conversion is important because when hormone levels are low type-2 deiodinase (D2) which converts T4 to T3 increases. D2 regulates local T3 levels as well as supplying circulating T3. So, D2 provides T3 in tissues (such as the brain) that need it and some of this T3 finds its way into the blood. This is not the same as taking some T3 to raise blood T3 levels, this T3 has not come from these relevant tissues.
Where the T3 comes from matters. So, if you can it is better to not let your TSH go low. If this is not possible it may be necessary to take more T3 so that serum T3 is above average or even elevated, so that sufficient T3 can enter tissues that prefer to take in T4 and convert to T3 locally. In this case it is likely that some tissues will get too much T3. This is undesirable but sometimes unavoidable.
That’s right. It will take TSH about a month to respond as it doesn’t change quickly. It’s worth giving this a try but my guess is that there’s less than a fifty percent chance it will work.
No, you need to leave your t4 dose alone and increase your t3. It has been pointed out you are a bad converter, the symptoms you are having are because of your decrease in t3. Put that back up to what it was a d give yourself time to adjust to the new dose. You weren't over medicated as your t3 was in range. Having hig t4 doesnt mean you are over medicated at all. Please try the increase in t3 first.
Presumably you split dose day before all blood tests?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Looking at Ft4 level you probably want to reduce levothyroxine dose a little. Perhaps just 12.5mcg per day ....or 100mcg per week. 75mcg and 100mcg alternate days perhaps
It’s easier to put levothyroxine dose back up, if need be, than try to reduce later .
Hi I take my levo and t3 together first thing when I wake up unless I'm doing a blood test which i do in the morning then i take it straight after the test. So at the moment I don't ever split my dose.
I used to when I started taking 12.5 I would take 6.25 in the morning and 6.25 in the afternoon.
Then when I went onto the 10mcg (half 20mcg tablet) I just took it all in the morning.
I get levo in 100mcg tablets. So it would be much easier to reduce one a week rather than be splitting into 3/4s every day as well as my 20mcg t3 into halfs and 25mcg t3 into quarters. I'll get confused which is which I think. Unless i just throw away the remaining quarters rather than saving them.
I'm about to do a test but I havent taken any t3 since yesterday morning should I wait and split my dose today then do it tomorrow so its 12 hours? I thought it was just a minimum of 12 hours before? Seems weird taking t3 before bed.
As others have said here I would first off try an increase in T3.
However, in my very limited experience balancing T3/T4 so far, one thing I have observed (that I only seem to share with one other person on here!) is that too much T4 (regardless of blood test) seems to inhibit the action of T3 for me.
To me I feel T4 is blocking the action of the T3 and it was only when I dropped my T4 significantly that the T3 suddenly worked better. My TSH has always been very low (previously on T4) and then suppressed on T3/T4 combo.
I just thought I’d mention it... the bulk of people on this forum using T3/T4 seem to do so with a little bit of T3 added to T4... I appear to require it the other way, even although initially the addition of T3 felt amazing.
Absolutely not. Taking T3 suppresses the TSH, as it is supposed to. The TSH gets its orders from the brain, pituitary gland, which tells it to make less TSH, which is Thyroid stimulating hormone, because the T3 is much stronger & quicker to take effect than T4. Please, listen only to doctors who show they have a heart and treat the patient (you) & not the symptoms. They are as rare as a two-dollar bill but if you look enough, & say a prayer, you will find one.
Hey Salphy, as others have said, I would increase t3 as well having t3 quite high. Personally, I need my t4 a bit lower (around 17) in order to be able to add t3, but everyone is different.
My experience has been that high ft4, even though inactive etc was giving my mixed hypo and hyper symptoms, I had to lower it from 150 to 112 and seem to be okay at that amount of t4 (now ft4 being just above midrange). So yes, contrary to belief, high ft4 gives weird symptoms, even with low or normal ft3 (high pulse, dizzy spells, overheating etc for me). My friend has the same experience. Best of luck with increasing t3! If you can split the pill 8 ways, that would be ideal, I split my 20 mcg thybon into 8s, i increase by 2.5 as these "little increases", make a big difference for me
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I definitely dont get diarrhoea or sweating outside of exercise. So hopefully I'm far from overmedicated and will be ok to increase. Fingers crossed x
also worrying because I've only been able to get hold of 25mcg tablets. So I cant replace the 2.5mcg I dropped. 
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