Reassurance needed on starting T3: I am in the... - Thyroid UK

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Reassurance needed on starting T3

FleetRose profile image
9 Replies

I am in the early stages of adding liothyronine to my levothyroxine regime of 20+ years. The Endo instructed me to change overnight from 75mcg levo to 25mcg plus 2x 5mcg liothyronine. Thanks to advice on this forum (SlowDragon) I learnt that I should proceed slowly and have so far dropped my levo to 50mcg and have added 5mcg liothyronine split am and pm. The next stage is to drop to 25mcg of levo but reading other posts I wonder if this is too low?

Before starting this process my results were

TSH 0.36 (0.27-4.2), T3 3.51 (3.1-6.8), T4 21 (12-22)

Folate 11.57, Vitamin B12 115, Vitamin D 101, Ferritin 116.

I am a very slight build (44kg) so maybe do not require much but would it be worth adding the second 5 mcg dose (bringing it to 10mcg per day) without reducing the levo any further?

I'd be grateful for your thoughts, thank you.

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FleetRose
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9 Replies
Lalatoot profile image
Lalatoot

Rose the endo guide to adding lio seems to state drop levo by 50mcg and add in lio, as quite a few are told to follow this protocol.

I found the 50mcg drop in levo too much and had to take time to increase it again later on.

I would follow your instinct and add in the other 5mcg lio and not reduce levo further.

However, how will the endo feel about this? If you are not compliant with their protocol will they remove your lio prescription? I felt I had to initially comply with the endo's doses for me so they would continue to prescribe. Once I'd been on their dose for 6 weeks bloods showed the need for and increase in levo. And so the fun began!! I was on 100mcg levo - the endo change it to 50mcg levo and 20 mcg lio - after years of gradual adjustments I have ended up on 100mcg levo and 7.5mcg lio. If only the endo had left my levo alone and just added a little lio it might have saved all the dose alterations and symptoms they caused.

SlowDragon profile image
SlowDragonAdministrator in reply to Lalatoot

Mine is a very similar tale

I was on 125mcg daily Ft4 at top of range….Ft3 at bottom

Endo recommended reducing levothyroxine to 100mcg and taking 20mcg T3 (this was done slowly over about 3 months)

4-5 years later…..after much experimentation, plus loosing 10kg ….now splitting levothyroxine as 2 doses … plus going dairy free last August (in addition to GF since 2016)

I have ended up on 125mcg 4 days and 112.5mcg 3 days

And T3 currently at 12.5mcg (as 5mcg, 5mcg and 2.5mcg)

I fully expect to be reducing T3 further after next test

SlowDragon profile image
SlowDragonAdministrator

Perhaps stay on current dose 6-8 weeks and retest thyroid and vitamin levels

Tell endocrinologist you are working slowly towards changing dose

JAmanda profile image
JAmanda

I was asked to drop the Levo but ended up right back where it started along with the new lio. Not sure where your levels were but I’d have not dropped the Levo at all and adddd in 5(which is a tiny amount) to see if it helped, then the other five. If you lower one and add in another you can’t tell what symptoms are due to either the lowering or the new drug!

Hashiboy profile image
Hashiboy

hi FleetRose just to echo everybody my experience was that it’s best to go slow. I initially got told to drop from 125 Levo to 25 and 40 T3 over a month…., it was too much change too quickly so thanks to advice from more experienced people here and a new endo I had to start all over and go slow and steady. You might do great on the proposed dose but you’ll have to give it at least 8 weeks for for it to settle. My big learning was that it took many months to get to a balance that suited me. Good luck and hope you feel improvement

BiscuitBaby profile image
BiscuitBaby

Hi FleetRoseMy experience is also very similar to the others' experiences. My t4 was dropped to 75 and 15. My current dose is 100 and 15. I also arrived at this dose with an element of trial and error! The doctors seem unbothered that the slightest dose changes can cause a big impact.

You'll maybe need to be careful about dosing without letting endocrinology know. Mine writes to gp every time I have a dose change of levo so my prescription gets changed immediately!

I would also say that I am 6 months into current dose. I was due a review in March but they were running late so I had another 3 months. I have continued to see improvements over the last three months. This shows in my bloods too. The body is a curious thing! I hope t3 makes you feel a bit better!

FleetRose profile image
FleetRose

Thank you for your helpful suggestions. I'm not sure how to reply to all so hope this works.

I will stay on my current doses for a few weeks and see how I go. I am already aware with the levo that I am very sensitive to tiny changes of dose, hence my reluctance to follow the endo's instructions which seemed a bit drastic. The difficulty will be persuading her that this is the best course of action for me.

Interestingly she also told me to stop taking selenium (at 200mcg) which she said should only be taken short term because of toxicity. I've not heard this before and have been taking it for a couple of years.

jgelliss profile image
jgelliss in reply to FleetRose

From my experiences over thee years after TT. I found when my T4 was lowered for the compensation of T3. It was a total failure. I found that I need enough T4 for my T3. With lower T4 and adding T3 I felt tired lethargic and unable to function.

I hope your Dr is a good listener and doses you the way You feel at your Best.

serenfach profile image
serenfach

Do it your way - its your body and the Endo and GP dont live in it. In my experience, you can tell them your dose done your way but they dont listen, wanting you to just obey, not how you feel. I now just nod and do it my way.

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