What to do best? : I have been prescribed T3 by... - Thyroid UK

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What to do best?

Sailing14 profile image
24 Replies

I have been prescribed T3 by private endocrinologist in combination with T4. The doctor has asked me to reduce T4 from 100 mcg to 50 mcg and change to nighttime dosing, and add in T3 5mcg at breakfast and 5mcg at Lunch. I am not sure he wants to increase this to three times a day eventually.

I haven’t been able to start this at the moment due to not finding the right T4 for me (I have been switching between brands and I know this isn’t right but I need to know what one suits before I trial T3).

I’m not sure dropping to 50 mcg will be too much but he said T3 is potent and T4 needs reducing by half.

Previously, my T4 has been over range with finger prick test, and a most recent private blood test that showed it still over range but not as high.

Thank you for any advice greygoose TiggerMe or anyone else who could possibly help.

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24 Replies
Buddy195 profile image
Buddy195Administrator

I personally would reduce Levo to 75mcg as a first step, as I found making increases/ decreases in larger steps had an adverse reaction. I also started with 5mcg Liothyronine and introduced a second dose once well tolerated. It is key to retest levels 6-8 weeks after making a change. Personally, I like to wait 8 weeks as it can take this long for me to ‘feel the difference’.

Sailing14 profile image
Sailing14 in reply toBuddy195

Thank you for your reply and advice. I feel this would be a good thing to do as I am sensitive to change and your situation sounds similar to mine.

joey82 profile image
joey82

Steer well clear of making big changes, as already advised drop to 75t4 and then add in some t3 and see how it goes. I would agree with you finding a T4 brand that suits you should a priority before combination T3/T4. Adding more unknown variables into the mix on combo therapy will only confuse the picture even more.

Sailing14 profile image
Sailing14 in reply tojoey82

Thank you for your reply and advice on the T3 and doing this gradually. I can very much understand what you are saying regarding confusing the picture with T4 also.

I think 50mcg sounds like a big drop, we have plenty of members on 100mcg of Levo and 10-15mcg of Lio. T3 suppresses FT4 levels anyway and we are always told not to drop Levo by more than 25mcg.

When I started I was on 200mcg Levo daily. I dropped Levo down gradually over a few days to 150mcg, started off on 6.25mcg Lio and then after 2 weeks added another 6.25mcg and I've stayed on the same dose. I did try adding a third dose in for experiments sake but found it too much.

My bloods are good and I feel this is about right for me. Endos always seem to want to drop Levo by too much when adding T3.

Sailing14 profile image
Sailing14 in reply toSparklingsunshine

Thank you for your helpful reply. I can understand what you mean about the big drop with Endocrinologists and I am nervous of dropping by 50 mcg in one go even if T3 is being added.

It’s good that you were able to work out what was suitable for you in the end and gives an insight into how to work this all out.

DippyDame profile image
DippyDame

What were those recent results?

I would not be prepared initially to drop my T4 dose!

T3 naturally lowers both TSH and FT4!

he said T3 is potent and T4 needs reducing by half.

T3 is more potent than T4 but dropping from 100mcg to 50mcg is likely to be a shock to the system....particularly if you are introducing T3 at the same time

Only change one thing at a time otherwise you have no idea what is affecting what

I don't think this private endo has much idea about T3...being private doesn't mean they are better educated. Maybe just more quickly accessible!

T3 needs to be added low and slow so I would start by adding 2.5mcg in the early morning....at least an hour away from food and drinks/breakfast

I don't agree with the endo's advice to take the hormone at breakfast and at lunch....food affects absorption!!

After a week I'd introduce 2.5mcg in the evening.

Wait another week and increase morning dose to 5mcg then after another week raise evening dose to 5mcg

There is no quick fix and rushing increases is a retrograde step!

Once you are on 5mcg twice a day see how you feel. I'd be inclined to test after 6 weeks on 100mcg T4 + the 10mcg T3. Only then would I consider reducing T4 if FT4 is still high.

From then on dose changes need to be slower.....T3 every 2 weeks and T4 every 6 weeks.

I would want to avoid more than 2 doses daily (morning and evening)....the body doesn't normally need multiple dosing. T3 stays in the serum for about 12 hours but once on a stable dose it remains in the cells ( and so available) once cellular level has built up.

T3 doesn’t stay stable for more than about12 hours in the blood….though it stays in cells, and is available, for a few days.

Too many changes confuses the system.

I base my comments on my own experience of using T3... from T4/T3 in various combos eventually to high dose T3-only.

Listen to your body, keep a diary noting all dose changes and any symptoms or improvement.

Expect to experience bumps along the way as the hormone level settles....it doesn't mean T3 isn't working, just that the dose still needs tweaking. That can take many months, so be patient!

Good luck!

Sparklingsunshine profile image
Sparklingsunshine in reply toDippyDame

And more likely to prescribe as its a nice little earner for them, or maybe that's just my cynical side talking 😆

DippyDame profile image
DippyDame in reply toSparklingsunshine

Fellow cynic here!!

Sailing14 profile image
Sailing14 in reply toDippyDame

Thank you very much. This is really helpful advice and I will take all your suggestions into consideration when I do commence on the T3 which I hope is very soon.

arTistapple profile image
arTistapple in reply toDippyDame

Dippy this is a nice clear guide. I have printed it out.

I am sure I have had this explained (and probably clearly) before but somehow it’s hitting the correct brain cells this time. I think!

I'm not exactly sure how much more potent T3 is in relation to Levo, I've seen anything from 2.5 times to 5.

If its around say 3 times then 5mcg only equivalent to 15mcg Levo. Obviously T3 is much more quick acting whereas Levo is just a storage hormone so they act very differently. I still think dropping to 50mcg is a mistake though.

DippyDame profile image
DippyDame in reply toSparklingsunshine

Yes, absolutely agree ....reducing too soon and by too much = problems!

It's what happens at cellular level that is crucial

TiggerMe profile image
TiggerMeAmbassador in reply toSparklingsunshine

I agree with everyone above! Low and slow changes, you might find you tolerate the T4 better once you have a better level of fT3 🤗

The strength of T3 compared to T4 is kinda irrelevant, you need what you need as we all have different absorption and cell uptake to take into consideration

Sailing14 profile image
Sailing14 in reply toTiggerMe

Yes we do I agree. Thank you for your helpful advice again.

Sailing14 profile image
Sailing14 in reply toSparklingsunshine

Yes I can see what you are saying there. As I tried to drop 25 mcg not long ago due to high T4 and I very much knew I had, so quickly increased again but it is taking weeks to recover from this trial.

I have forgotten how the endocrinologist compared the T3 to T4 in potency but I’m sure he said 5 mcg is equivalent to 20 mcg.

TiggerMe profile image
TiggerMeAmbassador in reply toSailing14

I'd be inclined to add the T3 first before altering your T4 dose and see where you are after the first results as it could significantly drop your fT4

Sailing14 profile image
Sailing14 in reply toTiggerMe

Thanks. I have a lot to consider and didn’t realise just how much but it is good to know how many others have been through this already, and have come through the other side.

tattybogle profile image
tattybogle

adding another voice in support of "don't drop your levo by that much" .

since mid july I've added 6 then 9mcg T3 , and because my fT4 had been 91% and sometimes much higher , i decided to lower levo from 87.5mcg to 75mcg at same time as adding T3 .....first blood test showed ft4 had reduced significantly from 91% to 56% ,,, i felt mostly hypo ,pretty wobbly and weak , with some hyper bits... well frankly 'a bit all over the place' ... i put levo back up to 87.5mcg 4 weeks ago and i now feel more solid/ stable .

I'm still playing around with timings of T3 doses , and i'm nowhere near sorted yet, but lowering levo by 12.5mcg really didn't feel like it was helping things, so i certainly wouldn't recommend anyone lower it by 50mcg .

.. also re. how much T3 / how fast....... 6 mcg T3 (3 +3) felt like 'more than enough' for several weeks ... i had initially tried 6mcg in one dose, but packed that in after a couple of weeks and split it to 2x 3mcg ...... then after another 3 wks went to 9mcg (3+3+3) but after 6 wks of that i realised the morning dose was making me feel naff and not up for doing anything , and i felt better if i missed an odd dose of T3 , so am now trying 4mcg mid afternoon and 4mcg bedtime., which seems to be suiting me better. i've actually got some jobs done this last week.

also a warning ... as you can tell from the above 'randomness' .....i usually find it easy to be patient/ methodical / calm and wait several weeks for any dose changes to settle in, but something about adding T3 has turned me into a headless chicken.... one day my mind says 'i must stop this at once' ... the next day , (or even the same day!) , it's saying 'this is great' .... i think i've been trying something for 'weeks' then look at the calendar and it's only a matter of days ... so i recommend keeping a calendar/ notepad handy and writing notes as you go.

Sailing14 profile image
Sailing14 in reply totattybogle

Thanks a lot for all this helpful information and sharing your journey on the trials and tribulations of combination therapy.

I wish it could all be made much more simple but I’m sure we all do.

Sparklingsunshine profile image
Sparklingsunshine in reply toSailing14

Combi therapy is much harder to get right than just taking Levo or NDT. And it will take time to hit your sweet spot. I think I've been quite fortunate that I havent had to fiddle about too much.

TiggerMe profile image
TiggerMeAmbassador in reply totattybogle

It is interesting when the T3 hits the brain cells that it throws up all kinds of random thoughts and actions! Like you say improvements do tend to bounce around for a good few months even without changes dosage as different things start to fire up 😆

pennyannie profile image
pennyannie in reply totattybogle

Your expertise at being able to chop T3 into either 3mcg or 4 mcg is commendable -

what are you using - I don't seem to be able to even chop a tablet into two even pieces !! ??

tattybogle profile image
tattybogle in reply topennyannie

25mcg tablets and craft knife (like scalpel) cut on upside down coaster with a cork base ...do it on on grannies old dinner tray to catch any bits that attempt to escape....

Tiromel ~with a score line... quarters , then eights , to get 3.125mcg (ish)... bit of a faff but do-able

or cut in half , cut each half into 3rds , gives 4.16mcg ( ish) .... easier

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