Any thoughts please t3

[Ganggywaller]

I went to see my endo today and he has told me to drop mt levothroxine to 50 mg each day and add 20 mg of t3 10 in morn and 20 in afternoon. Does this sound good or do you think t3 is high to start. At moment im on 100mg 5 days a wk and 75mg two days a week .

[TiggerMe Ambassador]

Seems to be the latest trend in some areas to make big drops in T4 and give large amounts of T3 😵

Take a read of this post...

healthunlocked.com/thyroidu...

[arTistapple in reply to TiggerMe]

This definitely seems to be doing the rounds. As there is so little research into this, what’s going on? A bit of research not full blown but agreed amongst endos themselves?? OR worse (cynically) set up to fail?

My last endo told me he would be reducing my Levo considerably by 25 to 50%. Did not say how much T3 he was going to give me, but weeks later I got a letter saying he would not be treating me. I know you know this TiggerMe but I wanted Ganggywaller to see my similar recent experience.

Something dodgy going on.

[TiggerMe Ambassador in reply to arTistapple]

Scotland seems to have some very strange guidelines... Excerpts from rightdecisions.scot.nhs.uk/...

"GUIDELINE

Considering T3 therapy in individual patients

1. There is no strong evidence that combination therapy with T4 and T3 has benefits over T4 monotherapy and no national guideline group recommends routine use.

2. Long term effects and side effects of combination T4 and T3 therapy are not known

3. Measurement of T3 is not considered helpful in the clinical decision whether to add T3 on an individual basis and should not be a routine part of monitoring of hypothyroid patients on T4.

4. Currently no genetic testing is recommended (or clinically available) to guide therapy

Indications

Where the patient has continuing symptoms not explained by another diagnosis (see Table 1 below) after full evaluation and, if necessary, a retrospective review of the original diagnosis of hypothyroidism, then a trial of T3 may be considered. This should be initiated by an endocrinology specialist.

T3 should only be used in combination with T4 and not as monotherapy."

They swing from this ⬆️to large doses of T3 no mention of titration ❗❗

Also an Endo in the SW who has a similar gung ho style 😲

"Dose and monitoring response

A reduction in T4 dose will be required when T3 is commenced and, ideally, this requires an individualised approach. Typically, for every 10 micrograms T3, the T4 dose should be reduced by 25-50 micrograms.

T3 has a short half-life and requires twice or three times daily dosing. A typically starting dose would be 10 micrograms twice daily (resulting in a reduction of T4 by 50-100 micrograms).

Biochemical monitoring is done by specialist 6-8 weeks after commencing treatment and/or dose changes.

TFT are best done prior to morning medication with a target TSH of 0.35-2.5 mU/L. Suppression of TSH to values below 0.1 mU/L is not recommended particularly in groups at greater risk of atrial fibrillation and/or osteoporosis.

Clinical response requires subjective evaluation by the patient and physician after at least 3 months of treatment with a stable combination regimen.

If continuing on maintenance therapy TFTs should be conducted annually. "

[arTistapple in reply to TiggerMe]

Frankly with those diverse and separate sets of instructions, no wonder medics don’t have a clue!

Although in saying that they are supposed to be bright.

The word guideline suggests input by (in this case) the medical practitioner. However we never see any input by the practitioner, just the application of these confused ‘guidelines’, without any real consideration on the part of the ‘expert’.

[Tina_Maria in reply to TiggerMe]

T3 has a short half-life and requires twice or three times daily dosing. A typically starting dose would be 10 micrograms twice daily (resulting in a reduction of T4 by 50-100 micrograms

I am not that familiar with T3, but even to me this sounds completely bonkers! And if someone is on 100 mcg levo for example, they could theoretically cut 75% of that out, leaving you with a measly 25 mcg, which will send your T4 rock bottom and give you the heebee jeebees with that high dose of T3??

Call me cynical, but that is definitely designed to let people fail, so they can say 'told you T3 therapy is not working'. 😡

[Wua13262348 in reply to TiggerMe]

Interesting. The Scottish guideline mentioned is for Greater Glasgow and Clyde Health Board , specifically. I haven't read it all yet, but it is pretty up to date as approved February 2024. Good find Tigger Me!

[TiggerMe Ambassador in reply to Wua13262348]

It was Sailing14 that gave me the heads up as it seems more and more people are being given this awful advice, so we are likely to have many more unwell folk who are introducing T3 under this guidance 😕

[Wua13262348 in reply to TiggerMe]

It says the thyroid secretes ~7%, T3. Don't know what the wavy line means, unless approximately??? I thought it was generally accepted to be 20%, T3????

[TiggerMe Ambassador in reply to Wua13262348]

~Approximation or similarity (thanks Google)

I thought in a healthy thyroid gland it can be up to 10% T3 which are bound to a protein carrier (so not free which we test for) and relies on conversion of T4 elsewhere in the body to provide what is needed but once your thyroid is damaged to the point of needing replacement hormone it could have been desperately putting out much more T3 🤷‍♀️

Makes even less sense of their dose ratio 😵

link.springer.com/chapter/1...

[tattybogle in reply to Wua13262348]

hi Wau.... and  TiggerMe , this page may interest you : thyroidpatients.ca/2020/05/... summary-t3-secretion-conversion/

data from 14 individuals used in the 1990 study by Pilo et al.

lowest one got 6.5% of T3 from thyroid /93.5% from peripheral conversion

. highest one had 42% from thyroid / 58% from peripheral conversion.

so it seems to be highly individual.

the commonly quoted "20/80" comes from the average of these 14 people ..... only one of them actually had 20/80

[TiggerMe Ambassador in reply to tattybogle]

Thanks Tatty

These 'guidance notes' we are trying to make sense of make no mention of current 'free' results do they?

I shall re-read once I've walked the dogs

[tattybogle in reply to TiggerMe]

have a nice walk tigger ....i'm sitting on my garden wall waiting for the thieving lying barsteward recycling crew who stole my antique Netto basket to show up.

Just finished chalking signs on old roof slates to place around the street " Old Tree ~NOT for recycling" " Ancient Gardeners ~NOT for recycling " " Old Wall ~NOT for recycling"

not that i'm bitter or anything

[TiggerMe Ambassador in reply to tattybogle]

😂 I’m trying to walk off the after effects of seeing my osteopath, elderly lady with remarkable strength! I feel like I’ve been battered

[TiggerMe Ambassador in reply to TiggerMe]

 tattybogle re-visited the "guidance notes" no mention of testing free levels just the usual... "with a target TSH of 0.35-2.5 mU/L. Suppression of TSH to values below 0.1 mU/L is not recommended"

Perhaps they have forgotten to mention the crystal ball needed?

[Wua13262348 in reply to tattybogle]

Ah! It just gets more and more complicated and confusing! Great find Tattybogle!

So they have chosen to quote~7% ,T3, based on "lowest one got 6.5% of T3 from thyroid/93.5% from peripheral conversion", then.

Disraeli is attributed to have said something to the effect of "There are 3 kinds of lies: lies, damned lies and statistics". The above seems to be a perfect example of this.

[tattybogle in reply to Wua13262348]

yep ..very true,.

i remember when my maths teacher told us that quote.

[Lottyplum in reply to tattybogle]

If only medics would recognise very few, if any of us are 'average' but 'unique' on every level?? If they dealt with us as unique (and listened) I doubt there would be such disastrous consequences experienced by members here on this forum alone!

[Regenallotment Ambassador]

It sounds like a bad idea to me. Ensure your FT4 is 65% or higher through range before adding T3.

Plus vits and minerals need to optimal for you to benefit.

High FT3 and low FT4 gives me palpitations, sweaty face, upset stomach and still aches and pains.

[tattybogle]

in my opinion/ experience , adding 20mcg T3 is asking for trouble . too much too soon.

also lowering levo by that much might cause problems.

i think it would be a better idea to lower levo only slightly ie . take maybe 75mcg every day , i wouldn't go lower than that for now ...... and to start with no more than 5mcg T3 a day., at least for a few wks till you know how you react to it.

i started adding T3 earlier this year , my ft4 was near top end of range and ft3 at bottom end , like yours are ......i lowered levo by 12.5mcg/day and added initially 6mcg T3 , then after a few wks increased to 9mcg T3.

this lowered my ft4 by a surprisingly large amount ~ it dropped from 91% to 56%. and i felt pretty bad...... it felt like not enough levo and too much T3

since then i have increased levo again and felt much better for it.

the last couple of weeks i've been taking 100mcg levo with just 4mcg T3,,, and i feel much more stable than i did on 87.5mcg levo and 9mcg T3.

i may add a bit more T3 back in once i see the full effect of 100mcg (once it's settled in for several wks) ..... we'll see , but sometimes 'less is more' .

[FallingInReverse]

Been there done that, would never do it again.

Dropped 50 to 25 and added 10 a day. Caused palpitations immediately that lasted 9 months, thought my heart would explode many days. That feeling was actually one of the biggest worries that led me to find this forum, which I give full credit for giving me back my quality of life, counteracting and correcting the misinformed direction I got from my doctor.

Agree with all replies here…. Blood test, careful consideration of whether Levo needs a drop at all (maybe, but not as much as your doctor recommended), and intro t3 slooowwww (2.5 for a while is conservative, 5 a day probably more common, jumping in with 10 or more a day at once is asking for turmoil!)

[SlowDragon Administrator]

previous post with results….high Ft4 and low Ft3

healthunlocked.com/thyroidu...

What vitamin supplements are you taking

What are most recent vitamin D, folate, B12 and ferritin levels

Important you have GOOD levels for good conversion of Ft4 to Ft3

agree with all other comments……only add T3 very very SLOWLY

2.5mcg twice a day ….or 5mcg once a day if you can’t cut tablets small enough for 2.5mcg

4-5 days BEFORE adding T3 ……reduce Levo by 12.5mcg BEFORE adding 5mcg T3

See how that is

After 1-4 weeks…..consider adding 2nd 5mcg dose T3

Wait 6 weeks …..then retest before considering increasing T3/reducing Levo further

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

[pennyannie]

Hey there again :

Please go very slowly as advised above -

You have been struggling for such a long time and must go slow introducing T3 -

as without a thyroid and having had RAI thyroid ablation - you may well need less T3 / T4 medication than those who still have their thyroid glands.

Just speaking from experience and as you know, I do not taking synthetic T3/T4 combination.

[SilverSavvy in reply to pennyannie]

Completely concur: slow and steady. And optimised vits. I started on T3 at 2.5mcg twice daily and worked up. And only to 7.5mcg daily. But it did affect the TSH in a way that made my GP's reduce my T4 from 100 to 75. If I'd started T3 on 10mcg daily I would have had bad heart palpitations and given up using it. Steady intro and keeping T4 up beyond 50% of range seems to work for me. And even then it is something that needs careful monitoring. I still would much rather have it than not as I am a bad converter and it helps a great deal with brain fog/mental clarity in a way that T4 alone did not.

[SovietSong]

That’s a 300mcg weekly drop in levo.Can only speak from my own experience but i barely had to touch my levo dose(going from 125mcg daily to 125 six days and 100 one day).Agree with everyone above about taking baby steps with the T3,it’s not easy tolerated and too much causes awful symptoms.I started with 6.5mcg first thing and then after a while added an eighth of a tablet around 2.30pm.This eighth made a massive difference,it helped me avoid the mid afternoon slump which many experience and also saw me through until next morning’s dose.

[SilverSavvy in reply to SovietSong]

Yes SovietSong, I used to take all mine with the T4 in the morning but am now starting doing exactly what you do to avoid that slump. Just a tiny bit around 2pm. Hoping it irons it all out.

[TiggerMe Ambassador in reply to SilverSavvy]

It's interesting how it differs for people, I have a slump if I split even if a higher dose than I do on a smaller single dose 🤷‍♀️

Afternoon slump is also tied in with adrenal fatigue and lower cortisol levels

[SilverSavvy in reply to TiggerMe]

Yes, I really have to do some research on adrenal fatigue...I'm sure that's implicated in my problems. Never gone there yet.

[FallingInReverse in reply to TiggerMe]

Maybe one of my next moves will be taking my 10 all at once in the morning.

When you switched how long before you knew is was “working” for you?

[TiggerMe Ambassador in reply to FallingInReverse]

Yep, give it a go, straight away I noticed I could cope with a whole day without the need for a nap, if you are sensitive to change then perhaps a 7.5/2.5mcg trial?

To my mind having more available in the morning is mimicking the natural rise in TSH and morning cortisol allowing more to make it to the cells 🤷‍♀️

[FallingInReverse in reply to TiggerMe]

Yes, and I’m my mind I had some idea that t3 works naturally with evening melatonin and all the repair our body does overnight.

🤷‍♀️

And then I did a mini deep dive Google on that and think I confirmed that that is not the case.

I’m going to go one more blood test round on dosing overall and then consider this.

Actually think I’m over replaced on t3 atm.

Not really sure !!!

[TiggerMe Ambassador in reply to FallingInReverse]

Seem to remember your last results showed fT3 a fair bit above fT4 and you were toying with the idea of a small increase in T4 which I thought was a good idea to balance things up

[FallingInReverse in reply to TiggerMe]

Correct! And I made no changes due to your excellent advice!

I spend many days talking other people off the ledge but isn’t it funny how easily we ignore our own best advice when it comes to our own decisions… you really can’t go low enough nor slow enough : )

[TiggerMe Ambassador in reply to FallingInReverse]

Actually, I agreed with the small T4 increase and got shouted down 😆

Perhaps if you think your T3 is a bit much see what 7.5mcg does for you first thing

[FallingInReverse in reply to TiggerMe]

Hahaaa! Yes I see that now… my symptoms are like night and day in the past 3 weeks. Fatigue, flushing, bad skin… Very interesting! Glad I didn’t change a thing or else it would be harder to isolate why, and I prob will reduce t3 next… and/or up my t4 (which is what I wanted to do.) can’t wait for my new bloods, gonna do next week I think.

[samaja]

Paul Robinson outlines the switch protocol from levo to combined T4 and T3 in his Thyroid Patient's Manual. Slow and low in general but a lot depends on other factors as well.

[Geegee777]

Hi, I take levo 125mcg and t3 15mcg split into 3 doses, my nhs endo going down tsh route, wants to reduce my levo too, (my tsh 0.008 ) had to tactfully say I'm feeling the best I've been for a long time...( I've self medicated from 75mcg to 125mcg, endo not very happy). She has referred me for a cardiologist appointment , I'm assuming to support her threats of stroke and or heart issues because of my low tsh.It's very worrying that they're not on same page. So glad this forum exists and good luck on your thyroid journey. As already mentioned, go low and slow, it certainly worked for me🌸🌸🌸🌸🌸