Hi All,After a lot of trying other things (diet, supplements...) I was finally prescribed Liothyronine by a private GP with the backing of Endocrinology.
My new 5mcg pills arrived today, and the plan is I take 5mcg 3 times a day, total of 15mcg which is a small dose. I'm currently on 125 Levo with low TSH, normal T4 and low T3, hence the T3 medication being added in.
First tablet at 12 today I felt fine. Second at 6pm and 2 hours later I was not happy, anxious, clammy, heart rate slightly elevated and felt very odd. Now I'm wondering what to do! I've pinned my hopes on this being the answer- is it normal to get sidetracked effects like this initially? By 9:30 I was fine again.
Thank you for your time in reading this, any thoughts would be great x
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Tiggs11
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Initially only add 5mcg once a day ….or cut in half and take 2.5mcg waking and 2nd dose mid to late afternoon
Wait at least a week before considering adding 2nd dose mid afternoon
See how that goes
Possibly hold at just 2 x 5mcg and retest in 6-8 weeks before considering adding 3rd dose
What exactly were Ft4 and Ft3 results and ranges on your last test
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
What vitamin supplements are you taking and what are most recent vitamin D, folate, ferritin and B12 results
Thank you so much for your reply. I've worked hard on my ferritin and it's a bit better, B12, Vit D are good, I'm on B12 injections. Coeliac tests negative but thyroid antibodies suggest Hashimotos.
That test was mid afternoon, as it was the only time I could get this side of November with a phlebotomist.
No reduction of Levothyroxine at present, I did question that.
I am taking 2 forms of gentle iron, Spaton and another with a probiotic included that helps absorption. I don't tolerate iron well. I'm pretty much gluten free and very low dairy.
I'm thinking of trying just 2.5 mcg tomorrow first thing and then monitoring my response. But slightly scared now!
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I actually feel a little clearer than normal now, on the 2.5 - was hard to tell earlier as I felt a bit worried after last night, but nothing bad has happened 😊 I'll check brands and get back to you x
That test was mid afternoon, as it was the only time I could get this side of November with a phlebotomist.
No point testing late afternoon
Do your own test including both thyroid antibodies privately
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
List of private testing options and money off codes
Tiggs11, from experience I am now an advocate of ‘low and slow’ when it comes to adjusting thyroid medication. I only added 5mcg of Liothyronine at first, until well tolerated. I then added 2.5 mcg to this (using a pill cutter) and again waited until this was tolerated before considering more. I get high anxiety, palpitations, fast pulse and tremor if I adjust too quickly. I’ve ended up in A and E in the past with these symptoms, so this is why I’m now a tortoise not a hare when adjusting (either upwards or downwards).
When you have been on a consistent new dose for 6-8 weeks it is advisable to retest TSH, FT3 and FT4 and share with us.
Hi Buddy195,Thank you for your reply, I have to say I was scared last night - and gave my husband the pill box in case he had to call 999. I'm going to just try 2.5 first thing this morning, plus my normal levo, and then see. At least the symptoms passed after a couple of hours.
I'll just stick to that 1 dose for a few days/weeks and go from there, thank you again x
I actually reduced my Levo dosage slightly for a few days prior to commencing Liothyronine. Whatever you decide, I would only add Liothyronine in small amounts and monitor effects over several days before adding more.
That's helpful, did you have to wait long after reducing the levo, days/weeks? My endo said to stay on the 125 but I'm wondering whether to try 100? Cx
I reduced Levo in the week prior to starting Liothyronine, so yes a reduction of 25mcg might be worth trying prior to adding T3. It’s better to go slowly, as otherwise you might miss your ‘sweet spot’ of feeling better.
Great advice from above. I just wanted to add many of us when introducing T3 have only risen increments every two weeks.
Also sometimes we have to raise in 2.5mcg increments as opposed to 5mcg to prevent symptoms of over stimulation.
15mcg T3 isn’t a small dose as many only require 5mcg or 10mcg. We need what we need. Good luck, I hope it makes you feel better soon. I felt improvements very quickly.
Thank you, I'm beginning to feel less anxious that I might have just spent £200 on medication I can't use 😵💫 I seem to have tolerated the 2.5 this morning, wondering if I should just stick to that for a few days, the try a second 2.5 dose in the afternoon x
It was actually really scary, and I'm not prone to body anxiety. I kept going clammy and panicky and had to walk around to avoid starting to hyperventilate! My pulse was up but steady at 80bpm, I'm normally around 54, and BP was up for me but still normal, so I kept telling myself it would pass, but I was clinging to my phone in case I had to call 999 😔x
🤞🏻🤞🏻🤞🏻 Thank you for the support 🙏🏻 I'm feeling calmer today and the first dose yesterday did feel quite nice - although that might have been placebo? Or does it actually work that fast 🤔 x
When I was trying Levo / T3 at circa the same dose (75 mcg Levo with 20 mcg T3), there was no way I could cope with taking that as one dose. I had to split the T3.
Strange isn’t it? There’s certainly something very different in the way T3 in NDT is released /absorbed.
With having no gut problems Armour and T3 is too fast acting for me. I can now take 6.25 T3 but that's with starting on NDT again. Just to keep me alive until I get to 2.25 grains.
I am good when at the top of the range. I did have to drop from 2.5 to 2.25 some years ago but with the same results. Mine does depend on the BT results but also how I feel
When I first started I had to cut up my 25mcg pill into eights not easy because I couldn't take even 6.25 it was to much. After several weeks you will be able to increase your dose. The dose was 3.125.
Omgoodness, thankfully my pills are 5mcg, so only need to half them. I think I'd have been in A&E if I'd taken any more than the 2 yesterday. Going to go v slowly now 😊x
I started on extra T3 a couple of years ago and it took a while to work out what was best. I’ve had TSH of around 0.02 for over 20 years so looked like I wasn’t converting properly.
I was on 125 mcg T4 at the time so dropped down to 100 mcg with added 15 mcg T3. Felt good for a few day or two but the palpitations I had seemed to be so strong felt like my whole body was moving! Dropped to 10 and now 5mcg which I take split in two doses. I also add in an extra 25 mcg thyroxine once or twice a week. Things have settled down now and must say the difference is amazing. Not feeling cold all the time, no hair loss, more energy and lost that sort of bloated fluid weight you get round your middle and neck when hypo.
What dose Thyroxine were you on before?. As T3 is approximately equivalent to 4 x T4 you’re taking the equivalent of 170 mcg thyroxine which is quite a large dose for a woman. Sound like you added T3 but maybe didn’t drop your T4? But gradual introduction is definitely the way forward.
Goodness, we sound very similar - I'm on 125 levo and similar low to surpressed TSH, normal to high T4 but low T3, hence the addition of T3, but have had to do that privately. I've been SO cold l, tired, sore etc... over the last few years that I was feeling quite panicked going into this winter - I think dropping the Levo a bit sounds sensible. I split a 5mcg pill in 2 yesterday as suggested on here and took it in 2 doses, felt good and definitely clearer in my head, so we'll see how today goes 🙏🏻🤞🏻🙏🏻 Thank you for the support, hearing that others have been through and found a balance point is really helpful x
15 T3 ist NOT a small dose!!! You have to know that is it up to al least three times as potent as T4, so you are adding in 45µg of T4 in one go! Just don't. This is what happens when your doctor does not really know about T3. Start with 2,5 ONCE daily. Wait for 2 weeks, only then add another 2,5 µg. Give you body time to get used to that amount of T3.
With your labs, I would strongly advise AGAINST Adding T3 at this moment! You are overdosed on thyroxine as it is. T3 may be low BECAUSE of too much thyroxine, not IN SPITE, as you seem to think. I suggest reducing at least 12,5 thyroxine.
If you add T3 to what you are taking now, you might easily end up overdosed with racing heart.
Ooooo... I'm not sure about the tolerate bit - how would I tell? My T3 has been prescribed by a functional medicine GP with the backing of an endocrinologist x
Hi Tiggs, I agree with the others about starting slow and low. I take no Levothyroxine at all, only Liothyronine and my thyroid is doing nothing and yet my endocrinologist started me on a low dose and took about 3 - 4 years to build up to 40 mcg a day. Best of luck.
Hi Tiggs11 , thank you so much for writing this post, we sound like we’re in a very similar situation and it’s been really comforting and helpful to read. How are you feeling this week? I hope you’re ok? More than ok!
I’ve been on levo (same brand as you) since 2015 (currently on 100mcg but I’ve tried all sorts of different doses!) and I’m starting liothyronine (also same brand as you! I wonder if we’re working with the same FMP/endo/pharmacy!) tomorrow having tested positive for the DIO2 gene mutation. I have to do a private trial before asking the NHS to back it - they’ll obviously only do it if it works for me 🤞🏽
I’ve been prescribed 15mcg liothyronine (5mcg x3) but just before the end of my appointment, she casually suggested that I try one dose of 5mcg (on waking - with my levo) to begin with. I will definitely do that but I’m wondering if I should now take 2.5mcg to start with! Seems like it might be a good idea…
I’ve been battling since 2020 for this and have tried all sorts of other things to no avail so keeping everything crossed that this just might be the thing that makes me feel better at last but I also know not to get my hopes up too much!! 😫
Hi Underact15, We do sound very similar. I was diagnosed in 2012, and I think Levo kind of helped for a few years - but I was under a lot of pressure with life stuff so wondering now if I was actually just running on adrenaline and cortisol. Anyway, everything seemed to crash some years back, and I haven't felt well since.
I'm working with Dr. [ redacted doctor identity ] my T3 is from Roseway Labs.
My gene test was OK, but my conversion is pretty awful, despite having improved on a number of things over the past year.
I am now on 2.5mcg at 06:30, 11:30 and 16:30, and I'm feeling some changes. Not sure I'm up quite enough yet, and I seem to get symptoms about half an hour before my next dose is due - funny kind of headache... so I'm thinking I might increase a little this week - but after that experience of going hyper I'm doing it all very slowly.
Ah Tiggs11 I knew it! Same doctor, same pharmacy and probably same endo backing! How lovely to have found eachother!
Yes I was the same and thought levo was helping me but I was in a whirlwind of newborn/toddler/pregnancy (pregnancy seemed to have triggered it all for me) so who knows. I started to feel especially unwell with new symptoms in summer 2020 and I don’t think it was due to the juggle of homeschooling!
I’m the same re.conversion too - I’ve worked hard on diet and have tried so many different tests and supplements (I was working with a nutritionist for two years before moving to MM at the start of this year - it didn’t get me very far at all!).
It sounds like you’re managing to up the T3 well?! I’m so pleased that I read your post last night so knew to only start on 2.5mcg, I wouldn’t have enjoyed what you went through I don’t think! Which dose did you add in next after getting used to the wake up dose?
I took 2.5mcg T3 with my 100mcg levo about an hour ago. I don’t feel any different - I don’t think! It’s so hard to tell what’s causing what sometimes isn’t it.
Are you also on LDN?! I’m not sure if that’s helping much either but maybe! Again it’s hard to tell. Looking forward to seeing if it’s lowered my antibodies!
Weeding apart what is what with the symptoms feels like a bit of a minefield- I'm peri-menopausal, which doesn't help, as GP's like to attribute all my symptoms to that, but tbh I have had my Thyroid symptoms a lot longer so I feel I can tell the difference, but it can be difficult not to start second guessing. I think I felt a more definite response after about 3 days, and started to realise that my odd headache had kind of become part of me, and then I noticed it's almost gone 40 minutes after the T3 dose, then starts to creep back!
Hoping you start to notice a bit of a change quickly - it's so hard with family etc... to juggle xX
A Doctor - Dr John Lowe - scientist and researcher and was an Adviser to Thyroiduk before his early demise due to a bad fall that caused a bleed in his brain.
I take T3 only and am well, symptom-free and my dose is 30mcg daily. I follow Dr Lowe's method and that is one daily dose with water and wait an hour before I eat.
Before taking T3, I did not improve on the usual prescriptions. In fact levothyroxine was awful for me and gave me severe palpitations.
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