Starting T3: Hi all, I’ve been prescribed T... - Thyroid UK

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Starting T3

JoJoloveschocolate profile image

Hi all, I’ve been prescribed T3 starting at 2.5mcg three times a day with a view to increasing to 5mcg three times a day (building up to the three times a day by adding 2.5mcg at a time). The thyroid gp seems to think I may need more than that eventually. Feeling nervous about it.. Does this sound ok?

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Buddy195 profile image
Buddy195Administrator

I think that sounds like a good plan. I’m a huge fan of ‘low and slow’ adjustments, as this means you are less likely to miss your ‘sweet spot’ where you feel most well. Other members however report being fine starting with a higher dose. Whatever you choose remember to retest levels 6-8 weeks after being on a consistent dose.

Were you advised to slightly reduce your Levothyroxine before adding Liothyronine as a combination dose?

JoJoloveschocolate profile image
JoJoloveschocolate in reply toBuddy195

Thanks Buddy. The doctor said stay on same levo as I am just on 87.5mcg. Do you think that sounds ok?

She said to do 2.5 mcg three times a day but just for a week then go up slowly to 5 mcg three times a day eg: 5mcg, 2.5, 2.5 to start with but didn’t say how long to hold at that level. I said what if I’m ok on 2.5mcg x3 times a day? She said “oh, I think you’ll need more.

Buddy195 profile image
Buddy195Administrator in reply toJoJoloveschocolate

If your FT4 was not at the top of the range, 87.5mcg Levo may be ok. I would leave a few days before adjusting Liothyronine upwards and keep a close check on any symptoms you experience. Some members just add one dose of Lio per day, but I prefer taking 2 doses (as I found I can slump in an afternoon without a split dose).

JoJoloveschocolate profile image
JoJoloveschocolate in reply toBuddy195

My t4 was 17 (24 hours after levo dose) and then messed up timings on my blood test showed t4 level of 19.1 (8 hours after levo dose) (12-22). I thought she would say t3 twice a day, but she said three times a day. Is that unusual do you think? I literally am totally paranoid where doctors are concerned. Just spent the past 7 years lumbered with a CFS diagnosis where the “CFS symptoms” were just getting worse and worse! I have no faith in any doctors any more.

Buddy195 profile image
Buddy195Administrator in reply toJoJoloveschocolate

As 2.5mcg is a small dose, x 3 day should be fine, although I personally started lower than this (ie 5mcg per day)

Do keep us posted how you get on.

Although some members report a ‘eureka’ moment on combination treatment, for me it was a steady improvement over time.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toBuddy195

Thanks, Buddy! She said if not too many side effects increase the dose after a week so I thought if all goes well and not too many side effects I could try 5/2.5/2.5, but don’t know how long I would need to stay on that before increasing again.,.,I suppose it all depends on how I feel?

Buddy195 profile image
Buddy195Administrator in reply toJoJoloveschocolate

Yes, adjust by how you feel. I still go by what I’ve said before that ‘low and slow’ worked best for me.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toBuddy195

Yep, thanks - definitely agree with the “low and slow” way forward x

FancyPants54 profile image
FancyPants54 in reply toJoJoloveschocolate

I would say keep your Levo as it is. Taking T3 will lower your FT4 anyway and you don't want to end up as I did. I reduced and then the T3 lowered it further and I'm now having to add Levo back in to an NDT dose to try to get FT4 up. I don't feel well with too low a FT4.

Your doctor is being sensible. But I'd start off adding just 2.5mg a day for 3 or 4 days, then add in the second 2.5mg and hold that for a few days until you feel settled, then adding the third and hold that for at least a week, possibly two weeks if there is any feeling of unsettled. You want to feel perfectly normal, even if still hypo, before adding more. And T3 takes a while for your body to get used to.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toFancyPants54

Thanks for the advice FancyPants. I’ll keep the levo as it is (87.5) and build up the t3 - low and slow. I’m going to take my first dose later today - just one 2.5mcg tablet. Does sound like a good idea to go with that for a few days to start with. Thanks for sharing your experience - much appreciated. Just got the t3 delivered now and it says on the label “Build up to one tablet three times a day” so I think it’s a case of see how I feel with each small increase.

FancyPants54 profile image
FancyPants54 in reply toJoJoloveschocolate

You will not suffer from starting really low and slow. It will just take longer. But it's far easier that way than trying to unpick a problem caused by rushing things later on.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toFancyPants54

I don’t mind taking longer. I went low and slow with levo. I’m only on 87.5mcg but the thyroid gp said it showed good levels of t4. My t4 was going up, tsh plummeting but t3 rising slightly then falling again.

Elsabounre profile image
Elsabounre in reply toJoJoloveschocolate

Could not agree more..these Docs really only follow their school med training ..1 size for all..wish they would add on a year of holistic training and treat the patient and not just the symptoms..taking into consideration other meds or illnesses that the patient has..I must always check to see if what they prescribe is compatible with anything else I may be taking...they have your records..why don't they check first...

Enuffisenuf profile image
Enuffisenuf in reply toJoJoloveschocolate

3 times a day is to keep you at a consistent level

JoJoloveschocolate profile image
JoJoloveschocolate in reply toEnuffisenuf

Thanks. Enuffisenuf. Makes sense. I’ll build up to three times a day.

Hashiboy profile image
Hashiboy in reply toBuddy195

100% agree Buddy195 best advice I ever got was go low and slow. Had a rough time because I was given too much too quick. I was really ill on T4 only. Now very nearly my old self on 100T4 and 15T3 split into three doses across the day. Endo recommended allowing up to six to ten months for this final dose to settle and that turned out to be good advice. Only thing I’d add is that for me it wasn’t helpful to take out too much T4 or to try T3 only. Good luck JoJoloveschocolate Hope you really improve and I’m sure you’ll get lots of advice here.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toHashiboy

Thank you so much, Hashiboy! Great to hear you experience. I hope the t3 will help me. The t4 has had some good effects on my constant tinnitus, ibs, constipation, and I do have some good days now, but the crashing fatigue and lack of stamina are still a problem. I have no tolerance for exercise and often end up back in bed in the afternoons with the electric blanket on. Hopefully starting slow will fend off any unwanted side effects. The thyroid gp said it will take some time to get the dose right and then possibly take a few months to feel better. We’ll see. I just had a message to say the T3 is on its way! I’m imagining a man in one of those full lab suits, wearing thick gloves carrying a smouldering canister! 🤣🧪

Hashiboy profile image
Hashiboy in reply toJoJoloveschocolate

Hi JoJoloveschocolate I had very similar symptoms on T4 only. It took a while to get to the right dose combo of T4 and T3 but I’ve gone from being in a heap to hugely improved. I’ve just booked to go trekking in Asia. Good luck.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toHashiboy

Wow!!! You’ve given me hope! That trip sounds amazing. Thank you so much for sharing your experience with t3.

TiggerMe profile image
TiggerMeAmbassador in reply toHashiboy

Yay 👏👏👏😁

Dahliasanddaisies profile image
Dahliasanddaisies

Ooh that's exciting JoJo! I hope you get on okay, keep me posted 😊

JoJoloveschocolate profile image
JoJoloveschocolate in reply toDahliasanddaisies

I’m dreading it now DandD!! But gp reckons conversion is poor and t3 will help - basically same advice as people have said on here. I just dread any side effects.

Dahliasanddaisies profile image
Dahliasanddaisies in reply toJoJoloveschocolate

Well we have been through the mill with all the dose changes so I understand. Nothing ventured, nothing gained 🙏

JoJoloveschocolate profile image
JoJoloveschocolate in reply toDahliasanddaisies

That is soooo true. All the issues and side effects of increases makes me wary. Plus I am a bit frightened of t3. I’ll just have to give it a whirl and see how it goes won’t I.

greygoose profile image
greygoose in reply toJoJoloveschocolate

Why are you frightened of T3? It's far safer than a lot of the drugs doctors prescribe to 'treat' the hypo symptoms that are caused by low T3. And if you don't expect side-effects you probably won't get any. T3 is a hormone and hormones don't cause side-effects. It's usually the fillers in the pill that disagree with people, not the T3 itself. As long as your nutrients are optimal your body should be able to use the T3 very well and you should feel a lot better.

That said, I really wouldn't start on 7.5 daily. I would start on 5 mcg, split into 2, for at least a week. Your body has probably been without decent levels of T3 for a long time, so starting on too high a dose would come as quite a shock - possibly one of the reasons people complain of 'side-effects'. :)

JoJoloveschocolate profile image
JoJoloveschocolate in reply togreygoose

Thanks greygoose that makes me feel better. I think it’s because it’s so hard to get t3 on the nhs…makes it seem a bit scary. Yep, that sounds better to me -I’ll do 2.5mcg twice a day for at least week. My ferritin is on the low side and my vit d is around 80. The thyroid gp advised me to increase vit d. Everything else is ok.

greygoose profile image
greygoose in reply toJoJoloveschocolate

The main reason it's hard to get T3 on the NHS is due to the cost, not because it's dangerous. But it's true that doctors tend to be terrified of all hormones, especially T3, but that's down to ignorance. I take 75 mcg T3 a day, now. At one point I took 225 mcg, just before bed and slept like a log! I was fine. But I don't need that much now - thank goodness! Because it was costing me a fortune! 🤣

Did the thyroid gp also advise you to take vit K2-MK7 and magnesium with your vit D?

JoJoloveschocolate profile image
JoJoloveschocolate in reply togreygoose

225mcg! Blimey! I’m no longer worried about starting 2.5mcg twice a day. She didn’t mention the type of vit d, but I was taking the oral spray d2 and K so I’ll go back to that and increase the dose. I’ve got magnesium bisglycinate capsules but I’ve been reluctant to try them because the last time i tried magnesium it seemed to cause an irritable bladder….plus the capsules look very big and difficult to swallow! I’ll have to look for a smaller tablet

greygoose profile image
greygoose in reply toJoJoloveschocolate

It should be D3.

You could use a magnesium spray, too.

JoJoloveschocolate profile image
JoJoloveschocolate in reply togreygoose

Thank you greygoose I’ll check the vit d. Magnesium spray sounds great. Is that a skin spray?

JoJoloveschocolate profile image
JoJoloveschocolate in reply togreygoose

Checked the oral spray that I’ve ordered…yes, it is D3 greygoose also says “menaquinone-7 (Vitamin K2)”

SlowDragon profile image
SlowDragonAdministrator

suggest you initially start with 2.5mcg twice a day

assuming that’s ok

After a few days increase to 3 x per day

Which brand T3 have you got

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

Good idea! I like that approach, SD. I think “sigma”? is it…need to check

SlowDragon profile image
SlowDragonAdministrator in reply toJoJoloveschocolate

Probably

5mcg tablets

Sigma contain mannitol (I think)

Are you ok with Teva Levo - this contains mannitol

Alternatively Morningside make 5mcg tablets- contains lactose

Roma capsules are lactose free…..but you can’t easily split a 5mcg capsule

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

Yep, absolutely fine with Teva levo. No problems with lactose either

SilverSavvy profile image
SilverSavvy in reply toSlowDragon

Completely concur with 2.5mcg twice per day to begin with. I did that for quite a few weeks then added in the last 2.5mcg and am now up to 7.5mcg per day. Any more than that and my heart races and I don't sleep. Each incremental step to be taken carefully. It's a fabulous addition for those of us who don't convert T4 well but adding it made me a bit wobbly to begin with so yes, very low and very slow. And optimised vits seem to make just as much difference too, so I'd definitely take that advice and hopefully you won't need any more.

JoJoloveschocolate profile image
JoJoloveschocolate

Right…will start on 2.5mcg T3 twice a day for a week or so and then increase to 2.5mcg three times a day.

JoJoloveschocolate profile image
JoJoloveschocolate

Thanks Buddy195 SlowDragon Dahliasanddaisies greygoose xxx I’ve come down off the ceiling now. #queen of panic!

DippyDame profile image
DippyDame

Don't be afraid of T3 it's perfectly safe if used correctly.....I'm on a huge dose of T3-only taken in a single dose at bedtime....and fine at age 79!!

Medics make it sound like something from a witches cauldron.....don't let the naysayers worry you.

If your conversion is impaired you need T3....end off!

You may eventually want to reduce the number of doses you take in a day....if the system is happy with that it saves clock watching!

No need to reduce Levo at this stage .....T3 naturally reduces both T4 and TSH

You will experience a few bumps along the way as dose changes but you need to ride that out.

Be aware of any changing symptoms because they are as important as labs

I used to record it all in a diary

Your doctor should guide you initially but as you learn more you may find you want to alter your dose/ timing. It's all very personal because we are all different.

You can raise T3 every 2 weeks ( unlike levo) but don't go beyong 20mcg daily without testing....and leave a 12hr gap between last dose and testing

Just a few thoughts.....you'll be fine.

We're all here to help....just ask!

JoJoloveschocolate profile image
JoJoloveschocolate in reply toDippyDame

Thank you soooooo much DippyDame ! xx They do make it sound like it’s feom the cauldron!! “2.5mcg t3 three times a day…with and eye of newt…sixteen spider legs once a day…one toad…two snails at bed time.” I will keep a diary - good idea.

DippyDame profile image
DippyDame in reply toJoJoloveschocolate

They seem to forget it's a natural hormone produced by the body and essential to life!

JoJoloveschocolate profile image
JoJoloveschocolate

My t3 is being delivered later this afternoon. Erm. Daft question. Just wondering - should i start it today or tomorrow? If I start today I’ll only be able to get x1 2.5mcg tablet in. Or should I leave it today and start tomorrow when I’ll be able to take x1 2.5mcg tablet twice a day? tagging SlowDragon greygoose DippyDame Buddy195 . Not sure who is around at the moment. x

greygoose profile image
greygoose in reply toJoJoloveschocolate

Well, if it were me I'd want to start straight away. But I don't suppose it really matters very much. :)

JoJoloveschocolate profile image
JoJoloveschocolate in reply togreygoose

Thanks greygoose I’ll take one as soon as it arrives. And then start the two tablets a day tomorrow for a week or so.

greygoose profile image
greygoose in reply toJoJoloveschocolate

You're welcome. :)

TL19 profile image
TL19

the advice from your GP is spot on. Slow increases. You are very lucky to have a GP who seems to understand and willing to prescribe T3 to help your symptoms. I found the book “Recovering with T3” by Paul Robinson very informative and very reassuring. I am far better on a T4/T3 combo. Still haven’t reached my optimal dose but feeling much better. Good luck.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toTL19

Thank you TL19. Great to hear that you feel better on the combo. I saw a private gp (works both private and nhs). I’m hoping to bring my own gp into the loop some stage and then my own nhs gp might refer me to an nhs endo if i get on ok with the t3.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toTL19

I’ve got the thyroid patients manual by paul robinson. I’ll take a look at the other book you mentioned too. Thanks.

SilverSavvy profile image
SilverSavvy in reply toTL19

Yes TL19, a GP who knows and understands prescribes effectively - so good to hear about. And so rare!!! Good luck JoJo

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSilverSavvy

Thank you SilverSavvy . I took 2.5mcg and feel now like I felt when I first tried cbd! Lying on the sofa semi-snoozing!

JoJoloveschocolate profile image
JoJoloveschocolate

Got my T3. Bottle says: “5mcg tablets. Build up to one tablet three times a day”.

Q1)Thinking of starting with 2.5mcg of T3 once a day for a few days to start with. And Then going up to 2.5mcg twice a day for a week or so etc. Would this be ok   greygoose   SlowDragon   Buddy195 …?

Q2)And if I just start with one 2.5mcg per day…should I take it in the mirning with levo or a bit later in the day?

Really sorry for tagging you all again, just wondered about your thoughts on this. I don’t know what’s wrong with me…my head is all over the show, I feel tearful then elated, anxious, up and down, aches and pains, hot and cold. I feel like I’m losing the plot! Not been sleeping well either.

SlowDragon profile image
SlowDragonAdministrator in reply toJoJoloveschocolate

I would take in morning with Levo

Assuming this is going ok ……after 2-5 days add 2nd dose mid afternoon….around 4pm

Depending how you feel

Then probably wait for 2-3 weeks before adding 3rd 2.5mcg dose

Personally I would then hold at that dose 6 weeks before testing

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

Excellent! Thank you. I feel happier going slower. Thanks so much SlowDragon

Enuffisenuf profile image
Enuffisenuf in reply toJoJoloveschocolate

I'd take it as prescribed. I've been taking it for 25 ish years. You need T3 to allow your body to function, if you don't make your own you need to take it.

JoJoloveschocolate profile image
JoJoloveschocolate in reply toEnuffisenuf

Thanks. Yes. It’s prescribed as “build up to one (5mcg) tablet three times a day.” I’m just wary of going too fast because I tend to react quite quickly to medications in general. What dose do you take?

Enuffisenuf profile image
Enuffisenuf in reply toJoJoloveschocolate

You can feel it if you have too much T3, so it's easier to manage than T4.

JoJoloveschocolate profile image
JoJoloveschocolate

Thanks for the support everyone. I took my first 2.5mcg dose earlier this afternoon. Made me sleepy. Had a snooze. Feel ok. Head didn’t explode…which is always a good sign. Early days I know, but now over the first panic-hurdle of actually taking the first dose! x

Kimkat profile image
Kimkat

can I ask which T3 you are on? Mine only comes in 20mcg and I have to cut it into quarters

helvella profile image
helvellaAdministrator in reply toKimkat

In case you do not know, all UK licensed thyroid hormone medicines are details in my UK medicines document.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.

Also includes links for anti-thyroid medicines (but not product details).

📄 dropbox.com/s/bo2jzxucgp9hl...

JoJoloveschocolate profile image
JoJoloveschocolate in reply toKimkat

I've been prescribed Sigma 5mcg,

I’m cutting them in half at the moment so I can start slowly on a lower dose/doses of 2.5mcg.

Kimkat profile image
Kimkat in reply toJoJoloveschocolate

And do they come in 5mcg that you split or 10mcg?

JoJoloveschocolate profile image
JoJoloveschocolate in reply toKimkat

They are 5mcg tablets.

Regenallotment profile image
RegenallotmentAmbassador

looking forward to hearing how it goes! I ended up doing 2.5 once a day then twice and upping it very very slowly, the sweaty face was my ‘tell’. Seemed to take forever for my body to work out what to do with it. But feel the best I have in years now I’m stable. Hang in there 🌱

JoJoloveschocolate profile image
JoJoloveschocolate in reply toRegenallotment

Oh that’s great to hear that you feel so well now. I’m staying on 2.5mcg once a day for a few days before i go up to twice a day.Had some weird effects already but generally feel ok. So far so good!

Fizzwhizz profile image
Fizzwhizz in reply toJoJoloveschocolate

I’ve just been prescribed T3 in addition to my NDT to increase my T3 without increasing my T4. I’m reading the advice to you to split my 5mcg tablet in two. I’ve just been prescribed 5mcg daily on top of my NDT. I’m hoping this gets my thyroid to optimal. 🤞

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