Starting T3 - advice please

[GW1000]

I am fortunate to have been allowed a trial of T3 through the NHS (in Scotland)

Can I ask for some advice / could anyone link to some helpful posts around starting T3?

I am currently on 100mcg Levo. This is being reduced to 50mcg with 5mcg of Liothyronine twice a day (12 hours apart - so 7:30am and pm?) being added. I currently take my Levo at night - should I continue the same with that? Does this sound OK? I have a feeling I’ve read before about adding it more slowly.

I’m happy with my Vit B, folate and ferritin, but am less sure about my Vit D - it’s 97nmol/L (50-250). Is that OK? I’m supplementing with 3 sprays of the Better You Vit D +K AND Vitabiotics 2000iu.

I’m both nervous and excited about the trial. A little worried as it’s been stressed to me that it’s only a 3 month trial so that feels a bit pressured! Would appreciate any advice on how to achieve the best from this.

Edit to add results:

FT3 4.2 (3.1 - 6.8)

FT4 21.1 (12 - 22)

TSH 0.287 (0.27 - 4.2)

Many thanks

[DippyDame]

As someone on high dose T3-only I would suggest a much slower approach, hurrying things has the potential to upset the system and have the trial deemed unsuccesful and the prescription withdrawn.

Too much exogenous hormone, too soon is like putting high octane racing fuel in an old Mini.....not comparing you to an old Mini!!!

In T3-terms, 3 months is hardly time to establish your therapeutic dose but do not be tempted to rush those increases! Been there and I guarantee it doesn't work!

T3 lowers both TSH and FT4 so initially there is little need to reduce Levo...but I'm not your endo in charge!

I suspect you will feel that reduction, so keep a close watch on your symptoms....use a diary or a spread sheet to record every stage of your journey

I would start by adding only 2.5mcg in the morning for the first week then add the next 2.5mcg ( 2nd dose of the day). Hold 2.5mcg twice a day for a week ( even 2) then increase morning dose to 5mcg...repeat until you reach 5mcg twice a day.

If you have enough levo I would stick with 100mcg for a few weeks

This gives the body time to adjust to the T3 which is quite potent

After 6 weeks on a steady dose test TSH, FT4 and FT3 ( that might be a problem with endo, so many of us test privately)

The labs will point to the way forward.

We take our hormones at times that suit us best.....at least an hour away from food and drinks

And ....when testing we leave a 24 hour gap between T4 dose and testing... and for T3, a 12 hr gap, and again at least an hour away from food and drinks, except water.

I'm trying to prepare you, not to frighten you, because you need to keep that prescription!

If you have been following this forum you will have gathered that medics are not all well clued up on matters thyroid so we need to educate ourselves...it's crazy but true!

This is based on my own lengthy experience ( over 20 years) of treating hypothyroidism

Sorry about the rant ( someone did suggest I change my name to RantyDame!!) but hope something resonates

Good luck....we're all here to help, just ask.

[arTistapple in reply to DippyDame]

I think that’s very good advice. I think it’s a great plan and I will definitely follow those instructions on my next attempt! Nice and clear. This way GW1000 will have some ‘spare’ for her future stash. Needs must and all that.

[GW1000 in reply to DippyDame]

Thank you. Not at all ranty and in any case I can be quite ranty myself too!

Many thanks. I will take things slowly.

[SlowDragon Administrator]

was test above done as recommended with last dose levothyroxine 24 hours before test?

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Do you always get same brand levothyroxine at each prescription

Suggest you initially only reduce dose levothyroxine to 75mcg

After 4-5 days add 5mcg T3 …..or if you have 5mcg tablets start on 2.5mcg waking ….and add 2nd 2.5mcg mid afternoon

After week or so ….add 2nd 5mcg dose T3

Unlikely to need to reduce levothyroxine to 50mcg

But if you don’t have enough levothyroxine to remain on 75mcg you will have to

Likely to see Ft4 drop too much on only 50mcg daily

[GW1000 in reply to SlowDragon]

Thank you. Yes, test done as recommended.

Unless they’ve changed supplier from when I started on levothyroxine I think the 50s will be the same as my 100s. I have had different brands before - the difference doesn’t seem to affect me - but it would be good to keep it consistent.

Reducing levothyroxine first…is that because it’s longer acting so it will avoid a ‘peak’ when the Liothyronine is added?

I presume I am getting 5mcg tablets as nothing was said about splitting 10s, so I will do as you suggest.

Many thanks

[SlowDragon Administrator in reply to GW1000]

Reducing levothyroxine first…is that because it’s longer acting so it will avoid a ‘peak’ when the Liothyronine is added?

Yes. Levothyroxine takes 5 days to get in your cells …..so yes reducing first before adding T3

[FallingInReverse]

When I started I went from 50 to 25 Levo and added 10 t3.In my personal experience - I would never do that again.

I’ve now spent a year getting my t4 into anything close to target range. And upon adding 10 t3 at once, palpitations started and lasted 9+ months (I know there are lots of different contributors to palpitations- but there was a clear and noticeable appearance of them right after starting t3.)

I think it’s written somewhere for doctors to reduce by 25 mcgs and add 10 t3 split into a morning and evening dose.

I have since read many posts here debating whether any Levo reduction is needed at all. Much less 25…. But definitely not the 50 your doctor is suggesting.

Again - personal experience and personal opinion - if I had to do it all over again I would not reduce my Levo by anything at all and probably would have cautiously added t3 in 2.5 increments and waited a week or two… or three between changes.

My best experiences have been waiting 8-9 weeks total for titrations to settle.

We are all different, I haven’t looked at any of your profile or posts.

Just adding my experience if helpful.

edit: just read your post a couple months ago that started with “Having been doing quite well”. For me that says - go as low and slow with these changes as you can. Many of us were nowhere near “doing quite well” when starting T3 (or most other times !) But if you said so - and with Free Ts like you have - if it was me I’d be extra careful, low and SLOW. Especially with a Levo decrease.

I just read the other replies here and it looks like we are all saying generally the same thing.

Let us know if you still need help nailing down a course of action : )

[GW1000 in reply to FallingInReverse]

Thank you - really helpful - and yes everyone pointing to going slow!

I’ve just replied to someone else…my doing well comments were very relative! B12 has improved a lot of things for me, but not my tiredness. It has had a dramatic effect on my mood (although mornings are still tricky). A better mental state makes so many things more manageable, but it hasn’t helped my tiredness. I am however happier and exhausted rather than thoroughly miserable and exhausted which admittedly is a better starting position than other may have!

[Andrew36]

Sorry I'm having an hard time understanding why they are giving you t3 while all your results seem fine and you feel generally well , I'm not been an arse it's just I'm wondering for my own treatment as I am struggling to get my tsh down to anywhere near yours

[GW1000 in reply to Andrew36]

Hi - my feeling well comments were on a Pernicious Anaemia post. I’ve had a long struggle with my B12 - regular injections have transformed my mood and helped my brain fog to some degree, but I still get extremely tired as I have done for well over 10 years, 5 of those on Levothyroxine. I had hoped that the B12 would resolve my tiredness too but it hasn’t. The improvement in my mood however really does make life a lot more manageable hence my positivity! But I’m still having to sleep most afternoons and sometimes just crash out at random times like my batteries have been taken out .

My T3 has always lagged way behind my T4 - T3 is 30% through the range, T4 is 90% so it’s looks likely to me that that could be the problem.

Good luck with your own health. This forum has been invaluable to me - you will get excellent help here.

[Andrew36]

Thanks for the reply and good luck on your journey I hope you can figure things out for the better