why does T3 make me feel worse?

[TiredMummy]

This is what I just googled in desperation after trialing 2.5mcg of T3 again after many months of T4 only due to T3 failed attempts. It’s not in my head, it’s a very specific feeling a few hours after taking it and that feeling is severely hypothyroid. I can hardly think or operate my brain. Google search led me to a video by Paul Robinson and I wonder if his theory may explain why it makes me feel worse…

I believe his theory is (and I’m struggling mentally post T3 dose so please bear with):

TSH regulates T3 conversion when on both T3 and T4. T3 reduces your TSH and your TSH helps to regulate T4 conversion. So you could feel worse on a low dose of T3 than on T4 only as you are converting less T3 overall. If you have a poor response to a low T3 dose (when on T4 & T3), you need to reduce your T4 and increase your T3.

The extremely wise and helpful responses I had to my bloods below on my previous post are still hugely valued and this was to keep my T4 the same and gradually introduce the T3 from 2.5mcg and work the T3 up to 10mcg over a few weeks. This is very sensible advice but I’m wondering if I need to consider reducing the T4 at the same time due to the strong negative reaction I’ve had today and several times in the past?

I wasn’t sure if I should add this info to my previous post or start a new one……so my blood test results are below for reference, taken fasting, before 9am, 24 hours after 87.5mcg Levothyroxine, no T3 for almost a year (due to this reoccurring bad reaction) and no vits for a week.

TSH 0.007 (0.27-4.2)

Free T3 4.1 (3.1-6.8)

Free thyroxine 23.1 (12-22)

I don’t want to rush things but struggling to work again already and only taken one 2.5mcg dose of T3 and wondering if this isn’t a surprising reaction and best to keep the T4 at 87.5mcg or reduce and add in more T3 to start with. I have no idea but all I do know is I feel crappy on T4 only but then it’s almost like I go into this horrible suspended animation when I add in T3. Head totally full of cotton wool, REALLY having to work hard to write this post for example.

[GlowCoach Administrator]

The B12 result you posted 2 days ago was terrible. An educated guess would be that your body can't use the T3 hormone well because your vitamin levels are so poor.

It might pay you to wait until you have a better B12 result in 3 or so months time, perhaps your GP might be able to offer injections if you can persuade them as your diet is not likely the cause if you eat a reasonable amount of red meat.

Your FT4 was over range, so dropping 25mcgs would have been recommended for a week before adding T3. You might try that next time around.

[TiredMummy in reply to GlowCoach]

Thanks Jaydee, I’ve had the same response years ago when my B12 levels were very good but I take your point. I’ll see how it goes over the next few days!

[GlowCoach Administrator in reply to TiredMummy]

If you didn't drop any Levo for a few days at least before adding T3 then that could be another reason.

[TiredMummy in reply to GlowCoach]

I’ve taken the plunge and I’ve reduced my Levo by 12.5mcg whilst introducing T3. I’ll see how I go. Thank you for the advice!

[Judithdalston]

I do still have brain fog, but I was not completely sure what you were doing from the opening paragraphs… are you trying to add T3 to levo to try a combo regime? I tried adding T3 in tiny amounts ( 1/8th of 25 mcg pill) to start off with 75 mcg levo ( down from the 100 mcg dose i was then taking), and very quickly felt it’s affect with heart beating and loosening up of stiff painful hips! And slowly added extra after 7-10 days to 15 mcg… when I tested bloods 8 weeks later my F t3 had risen a bit but Ft4 had gone down a lot, so 100 levo returned and continued with T3 additions to full 25 mcg pill. Six years later I take 100 levo and c17.5 T3 daily just getting the Frees into high 50s%…. Over the years I have tried different ways of using the T3 ( I was at one point t3 only 60 mcg following Dr Lowe’s protocol for fibromyalgia, but it sent my blood glucose high…not good for a diabetic): taking it in whole doses before bed, or split 3 times/day etc…unfortunately it’s a ‘suck it and see’ sort of experiment try slowly but also consistently and record exactly what you have done, when, and how you felt….

[TiredMummy in reply to Judithdalston]

Thank you for sharing your experience, that’s very helpful and interesting to note you reduced your Levo by 25mcg and then popped it back up by 25mcg after the blood test. Yes, I’m trying (again) to add in T3 in addition to my 87.5mcg Levothyroxine. I’ll see how tomorrow goes….

[SlowDragon Administrator]

I would start by getting vitamin levels optimal

Then start with 2.5mcg twice a day

2nd dose 8-10 hours after first dose

After a few days …..either add a third dose and space of the 3 doses at approximately 8 hour intervals

Or

Increase morning dose to 5mcg …..if ok….Wait another 5-7 days before increasing pm dose to 5mcg

Wait 6-8 weeks

Then retest

Don’t be surprised to swing initially to feeling worse and better several times a day

[jrbarnes]

It's not in your head! I have this same problem. You'd think adding some T3 to your Levo would make you feel better and not worse. Funny, I was reading the same blog post by Paul Robinson. If I add even 5mcg to my regular dose of Levo it's like I develop hypo symptoms but if I lower the Levo and try to replace with more T3 I never feel right. So all I can do is try to add the T3 back to my full dose of Levo again and try again until I get it right.

[TiredMummy in reply to jrbarnes]

Sorry you are also experiencing this! I think it might be very rocky I.e. I’m going to feel considerably worse on T3 until I get the levels right and then hopefully start to feel better. Paul Robinson mentions some people that do worse on say 75mcg T4 and 5mcg T3 May do better on much lower T4 and 20-40mcg T3. The problem is, how long do we suffer in between and how fast do we go so we don’t end up in a bigger mess. I’m going to try and take it steady over the next few days with the T3 dosing suggested by slow dragon and see how I go. Cautious is probably the most sensible approach for me! Good luck and hope you manage to also get somewhere with this nightmare too xx

[TiredMummy in reply to jrbarnes]

Hi jrbarnes, I’m just curious what symptoms you get when you try to introduce T3? It doesn’t increase my heart rate, it slows my whole body down, so the opposite affect. I remember when I first tried it years ago and posted on a different forum “is it supposed to make my body temperature drop so I’m reaching for jumpers and struggling to stay awake?” No was obviously the answer! My brain functionality also becomes more compromised and I float around in a dream wondering how to use the microwave….Interested how it affects you and what happens when you reduce or increase your T4 whilst trialling T3..

[jrbarnes in reply to TiredMummy]

I related so much to Paul Robinson's blog about this because it feels like my body starts dumping more T4 when I add T3. That's the only way I can describe it. It feels like the T4 is working less when I add T3. Lowering the T4 and adding T3 doesn't seem to work for me but increasing the T3 to my regular dose of a levothyroxine also doesn't make me feel better.

[TiredMummy in reply to jrbarnes]

I can also relate to that. I’m just hoping that when I add in more T3 that I’ll start to eventually feel better. It’s just very disheartening when it sends me backwards with no firm timeframe of when I’ll feel better….Always feels like a leap of faith when I try it but continue to keep trying as the alternative (T4 only) means living as a shadow of my former self in any case! I’m trying this time to be patient and keep everything crossed, again x

[jrbarnes in reply to TiredMummy]

I was 30 at the time I started Levo in 2010. I had half my thyroid removed at 27. I felt almost completely normal until they put me on levo. For the first six years it was okay but I had clear signs of hypo that I never had before Levo. After year six it was all downhill from there but didn't start experimenting with T3 and T4/T3 combos until 2020. One of the worst symptoms is the lack of restful sleep and how it makes my periods heavier and puts me into a state of borderline to full blown iron deficiency all the time. Also high amounts of Levo make me feel emotionally numb and zero appetite.

[arTistapple]

I have had almost exactly the same experience but in my case it’s heart symptoms which are brought on by the introduction of T3, which I have not been able to stand. I bought all Paul Robinsons books but somehow I have missed (or not understood the importance of) the quote you have found. I will go back and try to find it.

Like you I am not on a huge amount of Levo and have experienced lots of problems just trying to get that right (too near top of range same as you).

High T4 low T3. Apparently the worst combination.

I am messing about with a tiny increase in Levo but IMO not doing great, although the heart symptoms have mostly worn off, for which I am grateful. I would still like to be doing better. Frankly I am bored and frustrated by my condition. I am of an age way past working but even in retirement, you don’t want to be too fatigued all day to actually do anything. Life is about actually living, contributing etc.

Like you too I have also been doing this for what feels like a long time without ‘getting there’.

For me - so glad you posted this. I for one want to know how you get on.

[TiredMummy in reply to arTistapple]

Hi arTistapple, you might not find the Paul Robinson quote in his books, what I posted was a summary of what her said in a video interview I found on YouTube. If you have a heart rate reaction that’s terribly frustrating and yet another symptom you need to deal with! I’m so sorry to hear this and hope you manage to get more energy soon. You absolutely deserve better! No one should have to suffer this badly for so long and you should be able to enjoy your hard earned retirement more fully. Sending lots of healing and optimistic vibes your way xx

[arTistapple]

Yes I have just spent quite a bit of the day looking at the research my endo (NHS) has done or collaborated in, with whom I have an initial appointment with, in about a month. I think we get used to a more open minded attitude towards hypothyroidism on the forum. So much research founded on the ‘belief’ that TSH is the Holy Grail. Very little concern that it might be wrong! In my mind it makes all the research based around this without proper foundation. It’s like T3 has not been given any respect whatsoever and much research is only scraping the surface. Miles behind.

Anyway I will now look for the YouTube thingy for Paul Robinson and see if I can find the bit you discovered. Thank you. Here’s hoping we both get over this very annoying situation!

[TiredMummy in reply to arTistapple]

It was an interview with Dr Child’s in America if that helps. No idea if Dr Child’s is a doctor in the medical sense. The interview was around 45mins from memory.

[arTistapple in reply to TiredMummy]

Ah I have watched that but it was at the ‘beginning’ when I did not know very much. I can check it again now. Thank you for getting back to me on that TiredMummy!

[arTistapple in reply to TiredMummy]

OK TiredMummy I have listened to this interview again. I definitely ignored that ‘adjustment’ downwards for T4 in some cases. I had probably already got ‘tunnel vision’ re: levo. For a long time I thought it had helped me and I still believe that to some degree. I think I am much more likely to be a combo patient. However I will try to not become tunnel visioned even over that in future,

It makes sense. I was reminded of PaulRobinson confidence without arrogance. I have actually written to him. He said he is not really dealing with patients so much now. I don’t blame him. He might be wanting to retire now. Ooh just saying that makes me envious as my retirement (plus) has been Sh1t so far.

Thank you so much for highlighting this and reminding me very clearly that we are not all the same.

[Incoguto]

Your FT4 is real high, you're not converting, that would already give me symptoms. I wouldn't be able to add any T3 with such a high Ft4 reading. 2.5 T3 won't make a dent either. These are my two cents.

If you were to drop Levo, I'd do max 12.5 mcg less, your tsh is already supressed, you don't produce any t4 yourself, so go slow and add t3 in 2.5 increments max

[arTistapple in reply to Incoguto]

TiredMummy With my limited experience (but have not tried this specifically myself) this sounds like what I might try after I get this blood test and endo appointment out of the way. BUT Not too slow on the increments either. There is info on this aspect on the Forum. Too slow (but respectful to moving along) is an aspect I became aware of after the event. I was ‘making myself more hypo’ by moving tooo slowly with the T3 increments. Please check this out with SlowDragon .

[Incoguto in reply to arTistapple]

Completely agree, not too slow, I jeopardised myself like that before

[TiredMummy in reply to arTistapple]

Yes, good advice thank you. This fits with my plan at this stage which is 3 days on two doses of 2.5mcg, then introduce a third 2.5mcg dose, then after a week, up the morning dose by 2.5mcg and hold for 6-8 weeks (on 10mcg T3 in total). I will see how this goes. As I’ll be increasing T3 fairly swiftly, and I’ve already started my sublingual B12 (2 days ago), I’ve taken the plunge today and reduced my Levothyroxine by 12.5mcg. I’ll see how I go, only time will tell if I can cope on this!

[TiredMummy in reply to Incoguto]

I’ve taken your advice, you may have seen. I’ve reduced my Levo by 12.5mcg and will see how I go! Thank you x

[arTistapple]

Please keep us informed. Either on this post I guess or start a new one.