Liothyroine advice : Have been prescribed... - Thyroid UK

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Liothyroine advice

Lilylui profile image

Have been prescribed liothyroine picking up tomorrow from chemist as I am older think specialist said I will start on low dose, but checking side effects it is so scary.

I already have palpitations when I take thyroxine, which I have had to stop for now. Then the palps stop.

Just wanting to know what others had when taken it? Only got a months trial but since having serious issues with thyroxine since sept21 I feel rather scared. My TSH is 108! So hoping it will bring it down.

Then after a week he says to start on low dose thyroxine

Any advice, experiences please

59 Replies

My TSH was nothing like yours, but when I started on T3, I started on half of the prescribed dose for a few days/week (can't recall exactly), the increased by half of the difference (so 75% of the prescribed dose) , then up to the prescribed amount.

I appreciate you only have a month's supply, when my initial trial was 6 months.

What dose have you been prescribed?

Lilylui profile image
Lilylui in reply to MMaud

Not sure yet he said low dose first

Lilylui profile image
Lilylui in reply to MMaud

I have been given 10 mg 1 a day shall I take that

Lilylui profile image
Lilylui in reply to MMaud

What dose did you start on?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lilylui

It's advised here to start on 5mcg daily, give it two weeks and if no adverse reaction then add in a second dose of 5mcg - 5mcg morning, 5mcg afternoon or evening.

A one month trial is very unlikely to be enough. Most trials are 3 or 6 months.

Lilylui profile image
Lilylui in reply to SeasideSusie

Should I take every other day then to get to 10 mcg? They are capsules so not sure how I could split them

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lilylui

No, you have to take the same dose each day with T3 as it has a short half life, unlike T4 which is a storage hormone.

I have no experience of capsules, only tablets, so can't help, unless you can open the capsule and split the powder but I don't know how you'd get an exact half.

Lilylui profile image
Lilylui in reply to SeasideSusie

Oh I read about short half life then read it takes 12.5 days after last dose to leave system? It’s all so confusing I might try splitting capsule tomo it says can be tipped in water so hopefully can get near half, would that be okay if it was only slightly out?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lilylui

Like I say, I have no experience of capsules, just know that we should take the same amount each day.

The half life of T3 is 24 hours so after 24 hours you only have half the previous day's dose left. With T4 the half life is 7 days so after a week you have half the dose left.

SlowDragon profile image
SlowDragonAdministrator in reply to Lilylui

What brand is the T3 ?

helvella profile image
helvellaAdministrator

Many of the listed side effects of liothyronine will be from having too much. Whether that is simply too much, or too much all in one go as you start.

Side effect lists can be long and concerning. But most of them do not occur in most people who take the medicine.

Lilylui profile image
Lilylui in reply to helvella

Thank you, I am concerned I must admit as even on a small dose of thyroxine 12mg after 3 days I had serious palpitations, chest pain and ended up in A&E So worried this could do the same. Being where I live it takes an hour to get to nearest A&e

helvella profile image
helvellaAdministrator in reply to Lilylui

Is it feasible for someone to take you somewhere near an A&E?

You could then take it with the expectation of help being very close by. But sitting in a car hoping you are not going to be unwell is not the nicest prospect.

Lilylui profile image
Lilylui in reply to helvella

I am actually away on Monday and within 20 mins of the A&e staying a few days but could they do anything if it happened?

helvella profile image
helvellaAdministrator in reply to Lilylui

Yes. I believe they could give you a beta blocker such as propranolol which should calm down the impact of thyroid hormone on your heart.

There could well be other things they could do. Even just doing an ECG might reveal something interesting.

Lilylui profile image
Lilylui in reply to helvella

They can’t give me beta blockers something to do with ashma I have it mild So I could make a choice go on it, or follow Dr peatfield as I have purchased the Metavive am sure my adrenals are low as well so got the adrenvive 1 1

But not sure which course to follow

How long after taking Lio would I get symptoms

helvella profile image
helvellaAdministrator in reply to Lilylui

I can't say how long but T3 has a relatively short half-life.

Blood T3 level probably peaks about two hours after taking the tablet. The highest impact is likely shortly after that - but could be early or later!

Lilylui profile image
Lilylui in reply to helvella

Is 10 mg ok?

helvella profile image
helvellaAdministrator in reply to Lilylui

Both liothyronine (T3) and levothyroxine (T4) are usually measured in micrograms (mcg) - not milligrams (mg). :-)

I have no personal experience of T3. For that reason, I suggest you take the suggestions from those with experience.

I was meaning to reassure you that the list of side effects for most medicines tend to occur at higher doses. And most people just get a few of the more common side effects.

Lilylui profile image
Lilylui in reply to helvella

I had an irregular heart rate this morn that lasted half an hour, feel okay now.Will carry on taking the 5 mcg

But it says they build up (the lio )what happens if they get worse and it’s in my system read it can take 12 days to go out.

But I need to try something.

helvella profile image
helvellaAdministrator in reply to Lilylui

I think you are going too far in thinking about 12 days.

The usual claim is that the half-life of liothyronine is around 2 days.

If you took 5 today, by 48 hours you would have at most 2.5, two days later, down to 1.25.

But even that is probably pessimistic - if you really need it, the liothyronine would probably get used up more quickly.

And to do any serious calculation, you really need to take into account all your T3 - the liothyronine dose plus whatever your body converts from T4.

You really don't need to calculate down to tiny fraction of a microgram.

Lilylui profile image
Lilylui in reply to helvella

Thank you so much I am over thinking it, a right panic pants, don’t want to end back in hospital, just so wish I could rewind to this time last year when I took levothyroxine and was fine on it.Also can I ask you as this is a thyroxine as well, can you have issues on levothyroxine but be okay on tio?

helvella profile image
helvellaAdministrator in reply to Lilylui

I am firmly convinced that every possible combination of being OK (or not) is possible.

How much have you been told to start on? It's always best to start on a low dose, whatever your age, and whatever the hormone - start low and increase slowly.

Palpitations can be a symptom of hypothyroidism. But starting thyroid hormone replacement can cause them if you have nutritional deficiencies - which is quite common when hypo. Have you had your vit D, vit B12, folate and ferritin tested? If not, it might be a good idea to get that done before starting the T3. :)

Lilylui profile image
Lilylui in reply to greygoose

B12 is high 900 so been told to stop for a few monthsOthers I think are okay D is ok

Can’t find folate on blood test or ferritin are they iron levels?

greygoose profile image
greygoose in reply to Lilylui

Folate is a B vitamin. Ferritin is iron stores. But, you shouldn't supplement either of them without testing first.

If you've been taking B12, have you also been taking a B complex with it?

Lilylui profile image
Lilylui in reply to greygoose

I have one but it has B 12 in so have not been taking it

Lilylui profile image
Lilylui in reply to greygoose

Found folate on my January blood test level was normal no action it said 16.2 B12 was abnormal 916

No ferritin test that I can see

greygoose profile image
greygoose in reply to Lilylui

OK, so your folate was good. Don't worry if the B12 is over-range, it doesn't matter when supplementing, because B12 is water-soluble and excess is excreted. The ranges aren't realistic, anyway. 916 isn't high for B12. But, it could drop pretty rapidly if you stop supplementing. If I were you, I'd just take a B complex as a maintenance dose for both B12 and folate. But, make sure you get one with methylfolate and methylcobalamin (B12). Thorne's Basic B is a good one.

They often don't test ferritin to save money. Do you know when you last had it tested?

Lilylui profile image
Lilylui in reply to greygoose

Is this it …Thorne Research - Basic B Complex - B Vitamins in Their Active Forms - 60 Capsules

greygoose profile image
greygoose in reply to Lilylui

That's right. :)

Lilylui profile image
Lilylui in reply to greygoose

What supplement would I take for folate and ferritin?

Lilylui profile image
Lilylui in reply to greygoose

10 mg it’s a capsule should I start on that?

greygoose profile image
greygoose in reply to Lilylui

What's important is not the weight of the capsule, but the weight of the individual componants: how much B12? How much folate? Etc.

Lilylui profile image
Lilylui in reply to greygoose

It’s the liothyroine I have just taken it fingers crossed I will be okay it just says that and then the shell capsule

greygoose profile image
greygoose in reply to Lilylui

Oh! OK! It's 10 mcg not mg.

Well, that's rather a high starting dose. I thought you said he was going to start you on a low dose? Starting T3 should always be 5 mcg. But, see how you go with it.

Lilylui profile image
Lilylui in reply to greygoose

So should I miss dose tomo ? Then split capsule on Sunday?

greygoose profile image
greygoose in reply to Lilylui

Now you've started it, best not to miss a day. Split the capsule on Sunday.

Lilylui profile image
Lilylui in reply to greygoose

Monday I mean To be honest I don’t think he could have cared less he wasn’t interested and when I said will it give me palpitations he said yes possibly, didn’t fill me with confidence

greygoose profile image
greygoose in reply to Lilylui

Typical! What they often do is set the patient up to fail by giving them too much T3, so that they can then say, well, T3 obviously didn't suit you. And then take you off it.

Lilylui profile image
Lilylui in reply to greygoose

That’s what I think, is there anything I can do I feel I should make a complaint about him not sure how to go about it

greygoose profile image
greygoose in reply to Lilylui

As much as I love the idea of complaining about unscrupulous and unprofessional doctors, it's not that easy. It usually fails. And, as you have no proof... One has to chose one's battles carefully - especially when one is hypo. :(

Stourie profile image
Stourie in reply to Lilylui

Hi please don’t worry about your 10mcg of liothyronine. Dr Skinner started me on 10 for the first week and if I was ok to up it to 20 the following week. I was fine.

Also I eventually upped my dose to 80 mcg which I used to take at bedtime but one morning took another dose by mistake of 80 and had no adverse reaction. I’m late with this reply so hope you’ve been ok. Jo xx

Lilylui profile image
Lilylui in reply to Stourie

Thank you it’s the palpitations I get worried about in case they start Do you take anything else?

Stourie profile image
Stourie in reply to Lilylui

Hi I now take 75 levo and 80 liothyronine and don’t get palpitations. Think I’m just lucky or happen to need that amount of both meds. I had bad palpitations when I was diagnosed with a tsh over 100. Didn’t feel great when I started on levo and it took a few months before I began to feel a bit better. I hope you make the right choice for you. You’ve had lots of great advice all the way through your post. Take care. Jo xx

SlowDragon profile image
SlowDragonAdministrator

Has endocrinologist retested iron, ferritin, folate, B12 and vitamin D

With such high TSH …Likely to have low vitamin levels if not supplementing

What vitamin supplements are you currently taking

Lilylui profile image
Lilylui in reply to SlowDragon

Vit D ect they said okay B12 gone to 900 so told to stop taking it for now will try to add blood test

SlowDragon profile image
SlowDragonAdministrator in reply to Lilylui

Always get actual results and ranges on results

Lilylui profile image
Lilylui in reply to SlowDragon

I don’t see them on blood tests and I had a job getting them to do antibodies test don’t think thry will do them

SlowDragon profile image
SlowDragonAdministrator in reply to Lilylui

What were vitamin D, folate and ferritin results….you’re legally entitled to copies of your test results

Lilylui profile image
Lilylui in reply to SlowDragon

I always get them you have to show proof who you are ! But I make sure I ask then question results

Lilylui profile image
Lilylui in reply to SlowDragon

I take vit D and ashwaganha (spelling)have B 12 supplement but been told not to take it anymore.

You might find this thread of interest, although the numbers may have changed slightly since I wrote it:

healthunlocked.com/thyroidu...

Hi Lilylui,

I was also prescribed 10mcg as a starting dose. I found I tolerated it better as a split dose of 2 lots of 5mcg throughout the day. I also have the capsules and it’s difficult to split - ask your dr to prescribe you the 5mcg capsules, you may be able to tolerate that better as a more sustained dose throughout the day rather that one big hit in one go

Good luck!

Lilylui profile image
Lilylui in reply to Confused22

Thank you for your reply When people say tolerate what do they mean? Less side effects? What should I look out for? Thankfully so far I have had them 3 hrs ago and nothing too bad yet

Confused22 profile image
Confused22 in reply to Lilylui

Sorry yes, less side effects - so with me going straight onto 10mcg once a day my skin broke out with bad hormonal acne and I had a headache that would last most of the day. The headache would start about 4 hours after taking the capsule and last 12-14 hours. The acne took about three days after starting the 10mcg to arrive, but definitely cleared up when I switched to two 5mcg a day. It was like my body couldn’t cope with 10mcg at once! Hope things are still going well for you

Wired123 profile image
Wired123 in reply to Confused22

Is sustained release T3 now a reality? What brand would this be?

Lilylui profile image
Lilylui in reply to Wired123

They have given me Roma capsules Have cut them down to 5mcg

Don’t overthink this Lily. If you have any adverse effects which frighten you, stop it and it will be out of your system quite quickly

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