Liothyroine advice

[Lilylui]

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

[MMaud]

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 in reply to MMaud]

Not sure yet he said low dose first

[Lilylui in reply to MMaud]

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

[Lilylui in reply to MMaud]

What dose did you start on?

[SeasideSusie Remembering 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 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 Remembering 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 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 Remembering 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 Administrator in reply to Lilylui]

What brand is the T3 ?

[helvella Administrator Thyroid UK]

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 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 Administrator Thyroid UK 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 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 Administrator Thyroid UK 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 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 Administrator Thyroid UK 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 in reply to helvella]

Is 10 mg ok?

[helvella Administrator Thyroid UK 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 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 Administrator Thyroid UK 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 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 Administrator Thyroid UK in reply to Lilylui]

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

[greygoose]

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 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 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 in reply to greygoose]

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

[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 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 in reply to greygoose]

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

[greygoose in reply to Lilylui]

That's right.

[Lilylui in reply to greygoose]

What supplement would I take for folate and ferritin?

[Lilylui in reply to greygoose]

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

[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 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 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 in reply to greygoose]

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

[greygoose in reply to Lilylui]

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

[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 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 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 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 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 in reply to Stourie]

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

[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 Administrator]

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 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 Administrator in reply to Lilylui]

Always get actual results and ranges on results

[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 Administrator in reply to Lilylui]

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

[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 in reply to SlowDragon]

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

[humanbean]

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

healthunlocked.com/thyroidu...

[Confused22]

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 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 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 in reply to Confused22]

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

[Lilylui in reply to Wired123]

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