Now adding Liothyronine to Levo... headaches! - Thyroid UK

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Now adding Liothyronine to Levo... headaches!

Quaver profile image
32 Replies

So following a second private consultation, it was recommended as ft3 still very low and ft4 high, I should try adding liothyronine to my levo, but bringing levo down to 100 mcg. I was advised to take 15mcg lio every other day for 2 weeks then go to daily. I have just gone daily and have the most severe headaches with stomach pain, nausea. Any one else had similar? Think I will stop the t3 for a few days then perhaps try it again? Is 15mcg too high for starters?

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Thanks all

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Quaver profile image
Quaver
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32 Replies
SlowDragon profile image
SlowDragonAdministrator

Extrodinary advice to start on alternate days....with T3 it's essential to take EXACTLY same dose everyday

Suggest you start slower on 5mcg dose when waking ......if no adverse reaction add second 5mcg mid afternoon

Hold at this for 3-4 weeks

If going very well, you could consider adding 3rd 5mcg dose mid evening.

Or Hold at 2 x 5mcg dose for 6-8 weeks and retest before considering adding third dose

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Are vitamin D, folate, B12 and ferritin at very good levels

Quaver profile image
Quaver in reply toSlowDragon

Hi Slowdragon

All vits and folate etc are good. I have stopped the Lio today- feel rubbish. I have emailed doctor to tell her how i feel. as I only have Lio capsules i can't split them, so will see if she can give me 5 mcgs and maybe try again - as you suggest much slower and see

Thanks for brill info

X

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

Liothyronine capsules???

You mean 20mcg tablets?

Quaver profile image
Quaver in reply toSlowDragon

No - 15mcg liothyronine sodium capsules, Made up as a customised prescription (don't know how to add a photo! )

helvella profile image
helvellaAdministrator in reply toQuaver

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Quaver profile image
Quaver in reply tohelvella

Thanks Helvella! Job done

helvella profile image
helvellaAdministrator in reply toQuaver

Odd instructions.

It is usual to dose T3 the same EVERY day. Its half-life is such that taking a dose one day but not the next causes a severe roller coaster effect.

Quaver profile image
Quaver in reply tohelvella

I think that's what happened then! Have divided the capsule into 3 and trying 5mcg a day for now....

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

Is this 15mcg Liothyronine as a private prescription ?

Or NHS?

Quaver profile image
Quaver in reply toSlowDragon

It's a private prescription- I gave up with my GP after 12 weeks off work and him telling me I'm fine. Looks like the private consultant is getting me on the right track as I'm now back at work after getting me on HRT and bringing my t4 down from 150 to 125 and now 100. Obviously need to get this t3 right now though! I have split the 15mcg t3 capsule into 3 and taken 5mcg this morning.. didn't fancy cold turkey! Hubby said I looked like I was chopping coke, lol !

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

Yes...cutting small 20mcg tablets into 1/4's with sharp craft scalpel referred to in our house as "cutting the crack"!

Ask endo if they can prescribe 5mcg Sigma Pharma T3 tablets

How much were 15mcg capsules?

Quaver profile image
Quaver in reply toSlowDragon

Ha ha.... .Yes I will see what the response to my request for 5mcg is..... the 15mcg were £138 for 90 x

loueldhen profile image
loueldhen in reply toQuaver

Cheap!

Quaver profile image
Quaver in reply toloueldhen

Is it?? Well, you have to add in the cost of the private consultations (£180) twice a year and blood tests (£80 a go) to get the prescription..... but until I know what I'm doing- I'm going with it!

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

So relatively cheap

UK standard T3

20mcg Mercury Pharma or Morningside Healthcare or Teva (lactose free) are £206 for 28

Thybon Henning 20mcg from Germany is 31 euro plus 8 euro P&p for 100 tablets- prescription only

Prescription should read

100 x 20mcg liothyronine

See Thyroid UK main website for how to order

Quaver profile image
Quaver in reply toSlowDragon

Blimey difference in UK and Germany! Same standard and safety tho?? I'll see what my consultant comes back with and prices. Until I know t3 suits me I won't worry about shopping around for best price, but if long term I will. Have asked my consultant to write to my GP about poor conversion etc, so when I'm feeling tip top, mentally and physically- I will go for a moan at my GP about why I'm forced to go private!!

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

Germany is probably the most expensive of EU T3. I haven't tried it, but many people say its fantastic. A few can't get on with it

French 25mcg T3 is similar price. Because it's 25mcg, if you have helpful pharmacy, you may be able to get in UK pharmacy if they are prepared to "work the system ". (No UK T3 comes in 25mcg size)

Greece is £2-3 per packet of 28.....but sadly no one offers prescription overseas service

Turkey even cheaper

UK T3 use to be cheap

mjauk.org/wp-content/upload...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

Recent debates in parliament

theyworkforyou.com/search/?...

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Indepth research into T3/NDT - very positive

ncbi.nlm.nih.gov/pmc/articl...

You can search your CCG area NHS prescription rate here

openprescribing.net/analyse...

Quaver profile image
Quaver in reply toSlowDragon

Thanks for that - 1 more question, you may not know but, when I reduced my t4 for a few weeks before adding in the t3, most of my original symptoms went away, yesterday they came back again.... would an 'overdose' of t3 give me the same symptoms as an 'overdose of t4?

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

Personally I found I need good levels of FT4 and FT3

My Levo was reduced by 25mcg (to 100mcg) when T3 was added

But after 4 months or so, FT4 had dropped to near bottom of range....symptoms started returning, despite very good FT3 levels

I cautiously put dose of Levothyroxine back up, initially by 12.5mcg....then back up to where it was before T3 was added

I had been on 125mcg Levothyroxine for extremely long time....over 20 years

More details on my profile

Quaver profile image
Quaver in reply toSlowDragon

Wow just read your profile ' what a horrible journey for you. One more question then I will leave you to get on with your day! When you say not splitting your t3 caused adrenal problems - how did that manifest? Also 're brands - I clearly have no idea what is in my t3 capsule- maybe I will try and find out! Thanks again x

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

When adrenals upset I always get very sharp intense needle like pain in top of kidneys.

I obviously need TSH suppressed and T4/T3 dose high enough and steady enough to stop adrenals trying to take up the slack if Thyroid hormones are too low

radd profile image
radd

Quaver,

Yes, 15mcg T3 is too high a starting dose and T3 should not be medicated only on alternate days as has only a very short half life. Your doctor doesn't sound as if he knows what he is doing.

A common protocol would be to reduce your T4 meds (if levels were top of range) and introduce T3 in 5mcg weekly increments, taken with Levo, and only increasing weekly if no ill effects were felt. A common eventual dose might end up at 20mcg T3 and 100mcg Levo reached after perhaps 4 weeks. Members and myself have reported experiencing inner heat and a headache which lifted after the first few days of introducing T3.

Many members split their T3 dose between two to three times a day, to reduce the rapidity of onset and prolong the duration of its action. This also helps with tolerance during the first weeks of introducing T3.

Quaver profile image
Quaver in reply toradd

Hi radd

Thanks for this info. I will have a break and try again with a much smaller dose. Noted re splitting over the day, I will see how practical this is with my poor menopause memory!!

Thanks

X

SlowDragon profile image
SlowDragonAdministrator in reply toQuaver

Standard Liothyronine prescription is 20mcg tablets, which we have to cut into 1/4's with craft knife

A pill dispenser helps with remembering to take pills

It is possible to be prescribed 5mcg T3

sigmapharm.com/products/lio...

Private prescription is about £126 for 90 x 5mcg tablets

virtualreality profile image
virtualreality

Hi, I'm no expert but am on a similar dose to you and that sounds like a high dose of T3 to be starting with to me too. I switched from 125mcg T4 to 100mcg T4 + 10mcg T3 last year, and started with 100+5 for a week (while T4 levels reduced a bit - T4 has a half life of about a week) and only then moved up to 100+10. Always took the same dose every day. It took me 3 months to move up to 100+15, although it might not have been completely necessary to wait that long - I felt like I needed an increase from 6-8 weeks in but followed my endo's instructions to go cautiously. It really depends on how you feel and how you respond to the T3, but 15mcg T3 every other day sounds like a rollercoaster to me! By the way, I was splitting a standard 20mcg tablet into quarters, if that makes it easier to get hold of a lower dose. Wish you the best of luck with it.

NWA6 profile image
NWA6 in reply tovirtualreality

And yet I made no changes to Levo and added 15mcg of T3 and lowered my Levo at the same time. No difficulties experienced what’s so ever. Just complete contentment from day 1. Just goes to show how we are all so very different and why there can never be a ‘one size fits all’

(The only change I experienced was my resting heartbeat rose from 33bpm to 66bpm)

Quaver profile image
Quaver in reply tovirtualreality

Thanks virtual.....did your gp refer you to an endo? (Mine won't) I think your cautious approach sounds good to building up.. I can't have any more time off from work.... so will tread carefully now and do similar to you. Can I ask - do you feel better now on the 100 + 15 combo??

Thanks

virtualreality profile image
virtualreality in reply toQuaver

No, sadly my GP at the time wouldn't even entertain the idea that T4-only might not be the optimal approach so I took myself off to a private endo armed with medichecks test results and he prescribed the T4+T3 combo based on those.

I do feel better on 100+15, but it took a little while to adjust and I'd say I'm still not 100%. On 100+10 I felt great for a few weeks and then started to slide back to the usual symptoms so it was clearly not enough. When I increased to 15 I had symptoms much like yours for a couple of weeks butthen they passed, and now I feel quite settled and comfortable on this dose. My vitamins/mineral levels still aren't quite where they need to be though, especially ferritin, so I'm concentrating on increasing that before considering whether the T3 needs to go up again.

Another factor that seems to be very individual is whether you split your daily T3 dose or take it all at once. Some people need to have it all in one go, whereas others split it across 2 or 3 (or more, depending on the dose!) doses each day. Personally I've found that 3 x 5mcg T3 suits me best at the moment - I was taking 10 + 5 at first but that felt kind of 'harsh', for want of a better word? So that could be a way to step up your dose from 5 to 10, and 10 to 15 that's more gentle than one larger dose, if you find the same thing.

Quaver profile image
Quaver in reply tovirtualreality

Great info thanks, I will see how i get on, would prefer one daily dose if I can...... this trial and error game is not much fun tho!!

virtualreality profile image
virtualreality in reply toQuaver

So true! It's an adventure! Once a day is definitely more convenient, especially for fitting around meals/caffeine (which I can't give up just yet!)/supplements, so I hope that works for you. But even if you do find it helps to start off with smaller split doses, you might be able to combine them further down the line once your body's used to T3. It really seems to be a very individual thing. Wishing you all the best with it!

Quaver profile image
Quaver in reply tovirtualreality

Good idea! I've cut the caffeine out - not the alcohol tho.... it's the only thing that keeps me going!!

virtualreality profile image
virtualreality in reply toQuaver

Ha! Well you're doing better than I am! Without caffeine I'm a zombie still!!

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