Low T4…., after 6 weeks of T3 only…& wondering if some cannot tolerate without a bit of T4/Levo? Or… if feel ok… then T4 results may be low

[beaubeau1121]

New on T3/ liothyronine only…after combo of 75mcg levo & 20mcg liothyronine

Wondering how much T3 only I should aim

for as slowly adding…& now at 40mcg liothyronine…

[Milagroscrs615]

I could not tolerate 75 mcg of Levo, in 2018, I am now on T4 50 - T3 - 35 Sustain Release compound, as I couldn’t tolerate 75 mcg of Levo . Then I switched to amour thyroid at 60 mcg but it gave me bad heart palpitations and they wanted to give me heart medications. I refused but did go to rule out cardiac issues and I was correct it wasn’t anxiety. Cardiologist told me my heart was perfect. I did need any blood pressure medication . He said my heart was in great shape. He said Amour thyroid speeds up your metabolism That’s when I switched to T4-T3 Sustain release compound. The T3 SR allows it to be rel ease slower than the Liothyronine. I still could not get an Optimal T3. My Dr -T3 compound mcg to 5 mcg of Liothyronine Then I am was walking 18,000, 20000. Steps day and started grow. My T3 was still too low 3.I So she added a another 10 mcgs of Liothyronine and now I have insomnia and my numbers where all very low. I have posted here to try to get some answers as I believe my dr is using me as Guinea pig. My numbers are in my profile for reference. See if your dr will give you T3 SR as it’s easier on your body if you can’t tolerate Straight up Liothyronine., I am going to take my previous doses until I can figure this out. I hope my situation gives you some help. Best of luck

week or two

[beaubeau1121 in reply to Milagroscrs615]

So thoughtful! I will ask my compoundingpharmacist…. as I am currently taking throughout the day! Thank you!

All my best to you!!!!

[Milagroscrs615 in reply to beaubeau1121]

I meant my hair/nails started to grow immediately so the difference of Made a difference . Sorry about that, I know straight up Liothyronine is hard I think maybe you will tolerate it better. You are very welcome

[greygoose]

This is a very individual thing. Some people are perfectly happy on T3 only - I know I am, I can't tolerate any T4. Others need varying amounts of T4, depending on their individual, personal needs. And, the only way to find what you need is by trial and error. But, of course, if you aren't taking any T4, and your thyroid isn't making any - which it probably isn't if your TSH is suppressed - then your FT4 will be very low. Mine is at zero. And, I feel so much better than I did taking any amount of levo.

As to how much T3 you will eventually need to be well, that also is a very individual thing. There is no one number you should be aiming at, you should be aiming at feeling well.

[Murphysmum in reply to greygoose]

GG apologies, I may have asked you this in the past sometime…

In what way did you find you couldn’t tolerate levo?

For me I dropped it as I felt that it was inhibiting the T3. I have wondered recently about adding some back in to steady the cyclical problems I’m having on T3 only but I sway between maybe trying levo again or going and having a coil fitted. Haven’t done either yet as I can’t decide!

[greygoose in reply to Murphysmum]

I'm not sure I can aswer the question 'in what way'. It made me ill, that's all. The entire process of how I found I felt better on T3 only is laid out on my profile.

[Murphysmum in reply to greygoose]

Fair enough, just thought I’d ask!

It didn’t make me ill, I just felt it wasn’t helping - more so, it was inhibiting.

Thanks though - I have read your profile in the past 😊

[greygoose in reply to Murphysmum]

I cannot imagine what it would feel like if the T4 was 'inhibiting' your T3. How did you come to that conclusion?

[Murphysmum in reply to greygoose]

I know, it sounds nuts and I have absolutely no evidence to back this up! (I have lots, but nothing that proves this!)

So, I was only levo - introduced and gradually increased T3/decreased levo - and despite feeling better, I still had symptoms that I would get when I was taking a high dose of levo but with no improvement, ie, frozen shoulder, really aches joints, that kind of thing. A long time back at the start of my “journey” I did and RT3 test (I know this is disputed) and it was high when I had these same symptoms.

I stopped levo totally and was on around 25/30mcg T3 by this point from memory, and the symptoms disappeared within days. I also felt much more full of energy. It was like I flicked a switch. And yet I had been taking the same dose for months at that point. Months later when I tried to reintroduce a bit of levo the same symptoms happened about 9/10 weeks in.

So not very scientific I know, and I’m not sure how I’d ever prove it. My private endo didn’t laugh at me when I explained it and said she agreed, it wasn’t scientific but it was ‘sort of possible’ that there was some kind of mechanism at work like that.

Some one much more clued up than me could maybe explain it but for now, I’ll stick to my “kind of inhibited it” sort of explanation! 😂

[greygoose in reply to Murphysmum]

Well, that sounds pretty much like what happened to me, except that my symptoms were not so defined as yours. It was just a general feeling of being unwell without anything specific. Also, when I was taking T4, I know for a fact that I was never taking enough T3. In the beginning I was taking 20, then 40 mcg T3 with 100/200 mcg T4 in a fixed ratio tablet. Went on to NDT, got up to six grains, which is 54 mcg T3, but when I went to T3 only, I got up to 225 mcg and still felt hypo. so 54 certainly wouldn't have been enough.

That has come down a lot since then and at the moment I'm taking only 50 mcg. But trying to introduce even small doses of T4 has always made me feel bad again. So, I've stopped trying.

I cannot imagine in what way T4 would 'inhibit' T3, given that T4 converts to T3. But I can't tell you why it didn't agree with me either. Nothing to do with fillers - I've tried different brands - nor poor conversion because my conversion was fine. My body just did not like exogenous T4.

[Murphysmum in reply to greygoose]

It’s odd isn’t it? I agree - there’s no sort of scientific reasoning to it but it’s just how it seemed to affect me.

Is a fixed ratio tablet one you had compounded? I don’t know what that is.

Anyway, 225 of T3 - wow! I think I’d explode 😂

I have gone from the initial 10+ levo to as high as 60mcg T3 only and felt fine…. Until recently when I felt over. Now I’ve dropped back and I’m definitely under so I’m kind of stuck with what to do next. It seems to be messed up each month by my hormone levels and I’m really unsure how to sort this now. Which is really annoying as I have been really well for long periods!

However, having this chat has made me decide I’m not going to try adding levo back in, I’ve reminded myself how rubbish it was! I’ll await my bloods this week and see where I go from here.. sigh!

[greygoose in reply to Murphysmum]

Is a fixed ratio tablet one you had compounded? I don’t know what that is.

No, it wasn't compounded, just bought in a pharmacy on prescription. Can't remember the name but it contained 100 mcg T4 and 20 mcg T3. Such tablets aren't available in the UK, I don't think, but I live in France.

Anyway, 225 of T3 - wow! I think I’d explode

I doubt you would. I used to take it all in one go, before going to bed, and slept like a log!

[Murphysmum in reply to greygoose]

I’ll bear that in mind…. 😜

[shaws Administrator]

If you take T3 only your T4 will be low or very low.

T4 is an inactive hormone and it is supposed to convert to T3 - T3 being the active thyroid hormone needed in our millions of T3 receptor cells. Our brain and heart have the most T3 receptor cells.

I take T3 alone and have done so for a few years now. I have recently reduced my dose - going my how my body feels.

If we do not take levothyroxine (which is T4 alone and supposed to convert to T3) our T3 will appear higher.

Always go by 'how you feel'. That's how adjustments can be made, i.e. sometimes we need a small increase or decrease to reach the dose that makes you well.

I have recently reduced T3 and I feel fine .

[beaubeau1121]

Thank you!