Feeling rubbish on T3: I went to see a private... - Thyroid UK

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Feeling rubbish on T3

abbymeg
abbymeg

I went to see a private endo and he suggested adding T3 to my T4. I've been taking it for a week now and I feel pretty rubbish.

I dropped my 125mig dose of Levo to 100 on instruction and added 1 25 mig T3 tablet, half in the morning and half early afternoon.

I do feel like I'm going backwards. My focus is slipping a bit again and I'm shattered.

I had dropped my Levo dose myself after feeling very unwell recently and was just starting to pick up. My TSH had risen slightly, but T4 and T3 had also improved a bit, so was possibly on the right path with this.

It feels pretty relentless.

I'm not sure what to do for the best, really - I would have thought I'd feel any improvement on T3 quite quickly.

32 Replies
oldestnewest

I think you should introduce T3 very slowly in low amounts. From personal experience I started off on 25mcg of T3 immediately and felt very ill. After guidance from this group I broke my tablet into quarters and took a quarter a day for two weeks then twice a day for a month 12.5 mcg in total. I have now increased to 25mcg a day taken twice a day. Altogether is taken me a year to get to that dose. We are all different but remember T3 is very strong and should be increased gradually .

Good luck

SlowDragon
SlowDragonAdministrator

Often the recommendation is 1/4 tablet (5mcg) in morning for few days, then add 1/4 tablet pm

Hold at that dose for 6-8 weeks and then retest.

Even at that dose you can feel better and worse in equal measure until get use to it.

Are your vitamin levels good?

abbymeg
abbymeg in reply to SlowDragon

Yes, all good at the moment - high or top of ranges and still supplementing.

Thanks for this - so would I take 125 of Levo and just add in the quarter for a few weeks? Rather than drop Levo to 100 as I have been doing?

SlowDragon
SlowDragonAdministrator in reply to abbymeg

Initially I dropped Levo from 125mcg to 125/100 alternate days for week and added 1/8 tablet twice per day. Then lowered Levo to 100mcg and added 1/4 tablet twice a day (which is what endo had suggested, but I was extra cautious)

More on my profile

The 25 mg T3 might be the equivalent to 75-125 mcg of T4 for you, so I am sure you know, and never would have added another 100 or so dose of T4 to your existing dose in one go. Normal swop would be drop to 100 levothyroxin and add only 6.5 mcg i.e.quarter ( even only an 1/8) of a pill to start with and get to tolerate change, then add more every few weeks to see what suits. There is a variety of preferences on this site about how you take the T3- again without food/drink etc like the T4 , but some take the whole T3 dose in one go, others split it up over the day eg quarter pill at 6am, noon, and evening. Some people get palpitations etc with dose in one go, others don't so it's up to you. Incidentally craft knife / scalpel might chop up the pill rather than pill cutter ( mine pulverised little pills) - but again have a try which works best.

Thanks - Dr said double, so 25mig is same as 50mig levo!! No wonder I feel floored today!

I can't understand when someone says T3 is the equivalent of whatever dose of T4? Surely T4 is a different hormone with a different job and works completely differently?

But T4 is not the active element needed in our cells , it is the T3 , whether from converted T4 , or perhaps adding T3 medication. So yes not the same but should go on to do the same job, and we are all different in how we respond to both T4 and T3. This forum demonstrates how we all have to have abit of trial and error fine tuning what appears to work best re dosing.

Yes I am fully aware that T4 is inactive but I still can't understand how we can make that presumptuous jump of equivalents.

It was really suggesting you don't make the assumption 100 mcg levothyroxin/T4 is the same as 100 mcg T3 ( or as -Abbymeg's doctor 25 mcg T4 is similar to 25 mcg T3). Many would find they felt that 25mcg of T3 , on top of their thyroxin dose, would feel something like the similar effect of taking between 75-125 mcg extra T4 in one go. Some obviously, when dealing with averages, might find greater or lesser affects. I personally having a T4 to T3 conversion rate problem would find too much T3, added too quickly, would be OTT.

I appreciate that you are attempting to assist someone to understand their meds levels of both T3 and T4. It is my experience that equivalents are almost impossible to determine for the reasons I have already given. I accept that comparisons of these hormone amounts will offer a guide. It really is a moot point but does highlights the lack of empirical research to indicate just how these hormones work at a cellular level. There really seems to be no rhyme or reason as to how people respond to varying levels. I introduced 25 mgs of T3 straight off to my Levo as this was my Endo recommendation. I incurred no side effects and certainly didn't feel it had a powerful effect three months ago and still don't. I accept others have a very different experience and require caution for that reason. Although I feel slightly better than when I was first diagnosed, my FT3 is lower now than when I was diagnosed and on no meds. Why then logically should I feel some improvement now? I am willing to guess and even suggest the frequently implicated placebo effect. I simply do not know. We should in this day and age have a much more transparent, tangible and comprehensive answer but we don't. Why do we not? I would ask who is conducting research on the effects of thyroid hormone, natural or synthetic also at varying levels on Hashi symptoms? This is a question of paramount importance and a focus of research long overdue. This is a question that yours and others highlight when you offer this advice.

greygoose
greygoose in reply to Baobabs

It may be of paramount importance to you and me, but it certainly isn't- to people who don't have it and aren't touched by it in any way. They believe that it is not such a problem as we hysterical women make out - you know what women are like! - and they just aren't interested. Research is being done by people like diogenese, but the majority of researchers aren't in the least interested - thyroid isn't sexy! And there are so very many things that nobody knows about it, even today. Research has to be paid for, so who's going to pay? It's usually the pharmaceutical companies that pay for research, but it really isn't in their interests to research thyroid. They like the situation exactly as it is!

But, I do agree with you. This assumption that T3 is 3 times 'stronger' than T4 - or 4 times or whatever - has bugged me for a long time. If you can't convert T4, it isn't equal to any T3 at all! However, I'm useless at maths, but seems to me that someone ought to be able to come up with some sort of formula using the T4:T3 ratio or something, to work out how many times T3 is stronger than T4 FOR YOU. Any mathematical genii out there can work that one out? Surely it's possible, no?

Baobabs
Baobabs in reply to greygoose

Alleluyah! I was beginning to lose faith in myself big time. So pleased someone understands what I’m on about. I’m not convinced a formula would help or be possible as we all seem to use T3 and 4 differently in our bodies. I seemed to convert ok but didn’t feel better on Levo but slightly better on T3. There seems to be no damn pattern. You know Greygoose, this is all healthy enquiry. All of us desperate folk looking for a way through the woods, offering what knowledge and experience we can to others. The Will to assist others simply has to be applauded.

greygoose
greygoose in reply to Baobabs

I think so too. ;)

My idea of a formula wouldn't be a definitive answer, I know, but it could act as a personal guide. Much better than arguing about x 3 or x4! It would just be the best we could do under far from ideal circumstances.

But, I was the same. According to my original lab tests, I converted just fine! But, levo monotherapy didn't work for me at all. NDT was even worse! It's only after quite a few years on T3 only that's I've finally been able to add in a little levo. And I have no idea why! My nutrients weren't catastrophic at that time, my adrenals were treated before I changed to NDT. So, what went wrong? There are so many unknowns. It's like makin your way through a thick forest in the dark. And, it's certainly not helped by doctors that say 'I've never known anybody not do well on levo!!!' and who don't give you the space to experiment with different treatments and different doses, etc. There is so much for us still to learn - especially endos! :)

greygoose
greygoose in reply to greygoose

helvella, you're good at maths. What do you think of my idea for a formula?

Baobabs
Baobabs in reply to greygoose

Just love it! Poor helvella dragged into the discussion. Well interesting to read of your experience greygoose ................... The plot only thickens. I'm off to the Endo here in Saudi on Saturday and can't wait for her telling me yet again 'Oh you're feeling better, good .......................... And in range'. She will yet again have missed me saying but not feeling good or great and I was in a much better position on the range before I began meds. She better not suggest I come off T3 meds as I've just moved mountains to secure a six month supply. It it all goes pear shaped perhaps I will just give in and ask for anti-depressants !!!!!!

greygoose
greygoose in reply to Baobabs

Oh, god, don't do that! That would doubtless make you doctor very happy. But it won't do much for you. It really is a world-wide problem.

Baobabs
Baobabs in reply to greygoose

Can't we see how sufferers get into that vicious circle.

greygoose
greygoose in reply to Baobabs

Absolutely!

Baobabs
Baobabs in reply to greygoose

Wolves in sheep's clothing, medics I mean. They appear to have every body's interests at heart but ours.

greygoose
greygoose in reply to Baobabs

Did you see that wonderful post by Marigold, proving that refusing T3 counts as negligence? Really worth a read.

healthunlocked.com/thyroidu...

Baobabs
Baobabs in reply to greygoose

Great stuff. Let's hope those many disadvantaged folk have access to this article and assert themselves accordingly.

helvella
helvellaAdministrator in reply to greygoose

greygoose,

I strongly agree with your point: If you can't convert T4, it isn't equal to any T3 at all!

Let's take a very simple and highly artificial case.

You take 100 T4 every day but have poor conversion. Say you end up with just 10 converted to T3.

You then take 100 T4 plus 10 T3 - ending up with what you could convert plus the direct supply - resulting in 20 T3. You end up with twice as much T3! That makes it look like 10:1.

Then take the "rule of thumb" commonly used when discussing general thyroid hormones. One third of T4 (33 micrograms if taking 100) gets converted to T3, one third to rT3, one third excreted. That makes it look like 3.3:1.

I don't believe there is any possibility to a formula that meaningfully shows a ratio. At least some of the work done by diogenes and his colleagues has used sophisticated computer models. And that is, in my view, the only possibility. Well, that or try it and see how you get on.

In my view, anyone who seriously says T3 is x times stronger than T4 is a fool.

When we talk about alcoholic drinks, we might colloquially say that wine (at 12.5%) is two and a half times stronger than beer (at 5%). But underlying that we recognise it is the actual alcohol content that matters.

If we accept the general view that T4 has to be converted to be active, then we could look at it like this:

A T4 molecule that gets converted to T3 gives an effective ratio of 1:1.

A T4 molecule that gets excreted or converted to rT3 gives an effective ratio of 1:0. (Inasmuch as that is meaningful.)

It is all in the statistics of how many molecules of T4 get converted.

(On top of everything else, 100 micrograms of T4 can't convert to 100 micrograms of T3! Each T3 molecule is only about 81% as heavy as a molecule of T4.)

greygoose
greygoose in reply to helvella

I don't believe there is any possibility to a formula that meaningfully shows a ratio.

Umm... no. That wasn't actually what I was suggesting. I'm terrible at maths, and I absolutely hate ratios! So, I would never suggest calculating one. lol But, I thought that if you used the T4:T3 ratio of any individual, to determine how well they convert, you could devise a formula to tell them how much T4 they should reduce by, when they add in 5 mcg T3. But, I see now that's a stupid idea. :( Seemed logical at the time, though.

helvella
helvellaAdministrator in reply to greygoose

It is not a stupid idea. It is a wonderful idea. :-)

greygoose
greygoose in reply to helvella

Awww thank you! So, can you do it?

I seem to have been 'the fool' that replied to the original post by Abbymeg who wondered why she felt like rubbish having been given a 25 mig dose of T3, when she had been recently taking 125 mig levothyroxin. Her story of increasing her T4 ( to 175) till she felt overdosed on T4, plus her fibromyalgia, is very similar to my own. She has not shown a conversion problem judging by posted blood results, whereas I do. I thought by using the 'equivalent' T4:T3 in this case would be an easily understood as someone who has changed doses of T4 by say 25 mig or more knows how this can feel. A number of other forum members have also suggested 1/4 tablet of 25 mig T3 might be a better starter dose - its only personal advice. At no point was I suggesting a fixed formula re T4/T3 equivalents, we are all so different in the way we react to such medications whether we absorb or convert well or not at all....

It was appreciated, thanks. Everyone seems to work in equivilents whether or not for the best. The consultant did. My husband, an analytical chemist who works with levo, does. He suddenly piped up yesterday that T3 is often assumed to be 4x stronger. That was really helpful after watching me take it for a week!! I don't have a conversion problem as far as I'm aware. Anyway, back to 125mig levo and no T3 today to try and get a handle on it, then will start a low dose, 1/4 of a pill. It appears it will be a lot of trial and error.

helvella
helvellaAdministrator in reply to abbymeg

I fully agree that it is often assumed to be 4x "stronger". (Although there are plenty of statements which make different assumptions from 2:1 to 10:1.) And all the issues are buried in that one word, assumed.

helvella
helvellaAdministrator in reply to Judithdalston

My point was really about doctors saying that they will reduce levothyroxine by 50 micrograms when adding 10 micrograms of liothyronine. And doing so without regard to the apparent ability to convert of the individual or anything else. And that the T3 is "stronger" - if T4 is inactive, it has a strength of zero. When converted, the resulting T3 has the same strength as any other T3.

You quite obviously appreciate the individuality and conversion issues I apologise if my post appeared to be directed at you. It absolutely wasn't.

Hi, in my opinion, you do not need reducing the levo, just add T3 (1/4 morning and aftern)..

That's a massive increase in meds. You should have started on 1/4 of a T3 tablet. If your free T4 was well in range and not near the top, I'd have added the 1/4 T3 to your existing levo. If near the top, drop by 25mcg and take 6.5mcg of T3. 25mcg T3 is about equal to 75mcg levo, so you've suddenly had a 50mcg rise in meds.

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