Just started T3 Liothyronine (Roma) - are these... - Thyroid UK

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Just started T3 Liothyronine (Roma) - are these side effects usual?!

Confused22 profile image

Hi all,

I have Hashimoto’s. I started Roma’s Liothyronine 10mcg a week ago (also reduced my thyroxine down from 100mcg to 75mcg). I take around 4.30am each day, both the T3 and T4 together at the same time. Since the first day I’ve woken up with a headache which has lasted until lunchtime, my chin has broken out with terrible whitehead acne and I’m waking in my sleep not quite grinding my teeth but they’re certainly clamped shut and tightly gritted (which could well be causing my headaches I guess)

Has anyone else experienced similar symptoms? Is it a case of my body getting used to the new T3 and I need to ride them out and they’ll improve? How long is that likely to take?!

Any advice/suggestions/help very welcomed!

29 Replies

That tooth grinding sounds familiar! I had that when I was briefly Hyperthyroid, but that doesn't mean it's the same for you.

One thing you could try: as far as I understand, the body doesn't hold onto T3 like it does T4, so doses are usually split. I take my T3 in the morning and evening. Could you split your T3 into two doses, see if that helps reduce any potential side effects?

Ah that’s interesting re the teeth grinding! I can’t say I have any other hyper symptoms just yet but perhaps something to look out for. Did the grinding pass once you came out of being hyper? Would that mean I’ve not dropped the levo enough? Or gone in too high with the T3 do you think?

Yes, good thinking re the split dosing, that’s something that may well help given the headaches are in the morning, could be too much of a boost in the am and better split, but unfortunately the Roma are hard capsules and frustratingly can’t be split. I wonder if I could ask the GP for two lots of 5 mcg instead?

Thank you so much for your help!

helvella profile image
helvellaAdministrator in reply to Confused22

Well, at least Roma do supply 5 micrograms hard capsules. So it appears a logical step - depends on the doctor(s) involved.

SlowDragon profile image
SlowDragonAdministrator

Starting on 10mcg is likely too much too quickly

Starting on T3 usually at 5mcg …….waiting week or so before adding 2nd 5mcg dose approx 10-12 hours after 1st dose

Retest in 6-8 weeks

Thanks SlowDragon, that seems to be my hunch too now that I went in too high too quick. My endo is AWFUL so it doesn’t surprise me he didn’t advise better practise of starting low and raising slowly. Thanks so much for your reply and suggestion, really appreciate your time

SlowDragon profile image
SlowDragonAdministrator in reply to Confused22

Is endocrinologist aware you have Roma brand (and it’s not splittable)

Cheaper prescription option is 20mcg tablets

Morningside, Teva or Advanz

Vast majority of members get prescribed 20mcg tablets that they then cut into 1/4’s

Common to initially need to split dose into 2 or 3 smaller doses spread through the day

Eventually (possibly) some people find they can take whole amount for day as a single dose, but many many people find they need to remain on split dose

No, endo not aware of brand as he said Gp would prescribe and manage, and GP know I can’t have any other brand as need to be lacto free and they said they wouldn’t split a 20 Teva so that only left Roma. But, endo didn’t recommend starting at 5 and building to 10 and the GP isn’t really up to speed with Liothyronine so went with hospital advice. It’s a bit of a mess! Thanks for your advice, I really appreciate it

SlowDragon profile image
SlowDragonAdministrator in reply to Confused22

Almost everyone on T3 in U.K. gets 20mcg and cuts into 1/4’s ………it’s soooo much cheaper

Price charge to NHS

20mcg x 28 tablets = £72

10mcg x 28 tablets = £148

5mcg x 28 tablets = £98

Private prescription enables access to Thybon Henning 20mcg tablets T3 (lactose free) at 50-60p per tablet.

thyroiduk.org/if-you-are-hy...

I agree! I was more than happy to have 20 Teva and cut myself (I have a pill cutter) or have them cut by the pharmacy but the GP blocked it as was worried it wouldn’t be accurate, even by the pharmacist. I actually requested Teva as have them for the Levothyroxine I take and have got on ok with it. I was horrified to see the costs of Roma!!

SlowDragon profile image
SlowDragonAdministrator in reply to Confused22

Request new prescription for 20mcg Teva T3

Say Roma doesn’t agree with you and it’s impossible to cut into 5mcg doses

That you will “take responsibility” for cutting Teva into 1/4’s

That thousands of U.K. patients have to cut 20mcg tablets into 1/4’s to get 5mcg dose

Many thanks, I shall try this

SlowDragon profile image
SlowDragonAdministrator in reply to Confused22

If GP or pharmacist are difficult point out it’s very much financially in their favour

SlowDragon profile image
SlowDragonAdministrator in reply to Confused22

Actually new prices today

Price charge to NHS

20mcg x 28 tablets = £63.08

10mcg x 28 tablets = £148

5mcg x 28 tablets = £99.47

Confused22,

A 10mcg dose is too much when introducing T3.

When I first added 5mcg T3 meds to my Levo I experienced a headache and general inner heat, both of which resolved after about 3 days.

If I were you I would reduce to 5mcg, and not raise for at least a week or longer if side effects haven't resolved in which case reduce further by splitting dose into two, so 2.5mcg taken am & pm.

Confused22 profile image
Confused22 in reply to radd

Hi radd, thanks for your reply and suggestions. How should I balance my levo with a 5mcg dose? IE currently on 75 levo 10 lio so should I raise my levo again for a while? Thanks in advance

Leave your Levo as it is. Are you taking it at 4:30am because you get up for the loo or because you get up that early? If you get up for a bathroom visit then I would take the levo then, but take the T3 when you get up. As people are suggesting it would be better to reduce the dose to 5mcg a day for a couple of weeks and then add in a second dose around 5-6 hours later. Let all that settle. See how you feel.

Yes for a bathroom trip rather than a wake up time. It just worked well taking the meds then as by the time I woke I could hit the coffee and breakfast straight away without getting hangry waiting an hour! But your advice is sound, thank you, I think I’ll have to investigate the split dosing

I don't avoid food and drink with T3. Some do, some don't. But Levo is definitely more important to do that with.

Ah ok, that’s good to know and definitely makes split dosing a lot easier, thank you!

radd profile image
radd in reply to Confused22

Confused,

I forgot to say welcome to our forum 😬,

How much you reduce your Levothyroxine is dependant upon how high in range it is.

As endo has prescribed you T3 hopefully you have had TSH, FT4 & FT3 recently tested? If you post these results, then members will comment.

Confused22 profile image
Confused22 in reply to radd

Thank you for the welcome radd! I’m so pleased and relieved to have found somewhere where the members are active, knowledgeable and generous with their time and advice.

Pre T3 prescription last week my results were:

TSH 0.9 [0.27-4.2] T4 18 [11-22]

Last time my T3 was tested was back on 2/11/21 and my numbers were:

TSH 1.2 [0.27-4.2] T4 17 [11-22] T3 4.5 [3.1-6.8]

(Tsh was high as I was experiencing a miscarriage and so had shot up in pregnancy, but T3 had been pretty stable around the 4.5 mark for the preceding 4 months)

Hopefully it was the right thing to reply to you here so others can comment, let me know if I need to repost and thanks for all of your help

radd profile image
radd in reply to Confused22

Confused22,

So presumably these results were taken when you were medicating 100mcg and refer to the 'frees' (not the 'totals')

TSH 1.2 [0.27-4.2]

T4 17 [11-22] - 54.54%

T3 4.5 [3.1-6.8] - 37.84%

These results are indicating you have good conversion and increasing Levo should have adequately raised both FT4 & FT3 levels.Why has endo prescribed T3?

If you previously experienced difficulties in increasing Levo have you ensured essential nutrients & iron are optimal? Deficiencies could be prohibitive in your trying to raise either thyroid hormone. Also inflammation (elevated thyroid antibodies) can be another cause of difficulties. Are you gluten-free? Are you supplementing selenium and fish oils? Are Vit D levels optimal? (These are all immune regulators)

Keep medicating 100mcg Levo as FT4 levels are only just over half way through range, and either ask for a raise of Levo, or if you want to pursue the T3 I would stick to a low 5mcg dose until testing again in 6 weeks as you don’t want FT3 levels to suddenly go too high. Levothyroxine is much easier to obtain on prescription and to medicate if the need for T3 is uncertain.

For other members opinions/experiences you are welcome to repost as your results may be missed tagged on the end of this post.

Sorry to hear about your miscarriage. In women with hypothyroidism the cause is frequently too high TSH/too low thyroid hormone 😞.

Confused22 profile image
Confused22 in reply to radd

Thank you so much for your time and reply, yes these are free values. T3 was prescribed because despite levels being ‘in range’ I still feel terrible - cold hands and feet, losing hair, depression, brain fog, heavy and irregular periods, bone tired fatigue.

Diet is fully gluten, dairy, egg and soy free. Three Brazil nuts a day. Supplementing with folic acid, vit D, magnesium, iron and calcium

Vitamin D is 79 nmol/L, ferritin 62 ug/L (hence now supplementing)

Thank you for your kind words, yes my TSH shot up when last pregnant. That was my 4th loss but first medicated with Levothyroxine, numbers in range and also supplementing with progesterone, so we had hoped for a better outcome.

Thank you for all of your help, I’m so very grateful!

radd profile image
radd in reply to Confused22

Confused22,

Progesterone is great but hypothyroidism commonly causes fertility issues & disruption with ovulation. You need TSH low & FT4 in upper levels of reference range to encourage conception & retention of pregnancy.

Baby will be using your supplies of thyroid hormone for the first 3 months so it is imperative to start with good levels that are then frequently topped up with further Levothyroxine dose raises, sometimes even weekly.

'Women with known thyroid dysfunction who are taking levothyroxine may need the dose increased by 30–50% from as early as 4–6 weeks gestation' [De Groot et al, 2012].

Many need FT4 levels higher than your half-way through range just for general well-being, and your symptoms are most likely because you are being kept under dosed. This is a common problem on the forum because many doctors/endos dose guided by only TSH levels.

TSH correlates in an inverse linear fashion with thyroid hormone but this mechanism is often skewed in thyroid illness/replacement meds, meaning TSH indicates adequate thyroid hormone when there isn’t. The ‘frees’ are considered irrelevant by many doctors who only test TSH levels.

Your FT3 levels are very good in comparison to the low FT4, and therefore I don’t think you need T3 meds but a raise in Levothyroxine that will encourage higher FT3 levels anyway. This will also make monitoring future pregnancies easier as not many endos are familiar with T3 medication intricacies, ie TSH commonly becomes suppressed and FT4 levels may drop very low (even under-range) in spite of still medicating thyroxine.

Your supplements are good but you also need Vit K2 taken with Vit D to help calcium work better (the better quality Vit D supplements are often combined with K2 anyway so check), and I wouldn’t take extra calcium unless you have actual deficiencies (calcium is easy to get from food).

Also switch to the methylated form of folic acid called folate which is in easier form for your body to utilise. And what about the other B’s, particular Vit B12?

Considering you have Hashi a helpful read is "Your Healthy Pregnancy With Thyroid Disease" by Dana Trentini and Mary Shomon.

.

NICE guidelines

cks.nice.org.uk/topics/hype...

.

Pregnant & Hypothyroid

tiredthyroid.com/blog/2013/...

Confused22 profile image
Confused22 in reply to radd

Hello radd,

Thank you for your very thorough and helpful reply, I have a lot there now to consider and work with going forwards, thank you so much.

Incidentally my B12 is very high, classed as abnormal at 915ng/l [197-771] but the gp wasn’t concerned by that at all and said I’m just getting too much in my food (without actually asking what I ate!)

Thank you again for your patience and guidance

Confused22 profile image
Confused22 in reply to radd

Also forgot to add I have one heck of a goiter which is so embarrassing and really knocking my self confidence

radd profile image
radd in reply to Confused22

☹️

I dont know if you are aware but grinding teeth can be related to sleep apnea.

Janexxx😎❤

Hi JaneChapple, thanks for your reply and information, I hadn’t realised that actually. I hope that’s not ANOTHER thing to have to feel with too!

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