Hoping that some kind soul will give me some insight… My endo prescribed 5mg twice a day of liothyronine thybon henning which I am starting on Monday. He said there were no side effects but I’m always dubious. I am also taking 50mg of levo. My T3 levels were low (on the borderline) and having fatigue, low mood and aches and pains so we decided to try T3. Any advice would be gratefully received.
Thank you 🙏🏻
Tired_Cat
For some reason endos tend to start T3 at a higher dose than is suggested by experienced members here. T3 is a powerful hormone and should be started low and increase gradually.
Advised here is to start with 5mcg daily then wait 2 weeks. You can take it in the morning at the same time as your Levo.
If all is well add a second 5mcg and take it later in the day, maybe afternoon, some people take it in the evening and find they have better sleep, some people find it disturbs their sleep.
I tend to treat T3 the same as Levo, ie take on it's own with water, one hour before or two hours after food, away from other medication and supplements by 2 hours (but can be taken with Levo).
Have you been asked to reduce your Levo? Some endos automatically reduce this and it isn't always necessary.
Hi! Thank you for your reply. I will take your advice and start dosing once daily in the morning for 2 weeks. He didn’t mention changing my Levo dosage at all but I’ll ask him about that when I next see him in 8 weeks. Many thanks,
Cat x
Tired_Cat
He didn’t mention changing my Levo dosage at all but I’ll ask him about that when I next see him in 8 weeks.
To be honest, I'd not mention it, don't rock the boat. As I said, most endos reduce Levo and often it's not necessary. Don't issue an invitation for him to do it!
Do you have your test results upon which he based his decision to add T3? If so, can you post them along with their reference ranges so we can see where your FT4 and FT3 lies within their ranges.
If your FT4 was over range then yes, Levo is best reduced. But if it's lower than, say 75% through range, then leave it as it is. Taking T3 lowers FT4 anyway and if you also lower Levo you could end up with FT4 way too low and causing symptoms.
Hi Susie,
Ok, I’ll say nothing 🤐
my latest results were:
T4 17.5
T3 3.4
TSH 2.73
What do you think? Look ok?
Cat x
What are the reference ranges?
Sorry! (New to this..)
T4 17.5 (12-22)
T3 3.4 (3.1-6.8)
TSH 2.73 (0.2-4.2)
OK. Absolutely no need to lower your dose of Levo, your FT4 is only 55% through range.
To be honest I can't understand why your endo has added T3 at this stage. You are actually undermedicated with Levo and this should have been increased at this stage.
The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. So your Levo should have been increased until your TSH was below 1, that would give you the highest possible FT4, then you would see how well you convert T4 to T3. Then if FT4 was high in range and FT3 low in range the addition of T3 would be considered.
Hmmm, I see. Not sure what to do now. Should I ring him on Monday and see if he would increase my T4 and leave T3 for the moment?
Hi Susie!I had a very strange allergic reaction earlier about 2 hours after taking 5mcg T3 for the second day. I couldn’t stop sneezing, my nose felt like it was swollen and I couldn’t breathe through it, I had tingles in my fingers, lips, itchy eyes and throat. I took a strong antihistamine that I had and it calmed and went away. I wasn’t outside that morning or gardening or anything. Very strange. I do get hayfever but not that extreme and rarely when I’m inside. Was it the T3 I wonder??
Cat x
Check the patient information leaflet, look at the excipients, sometimes it's the excipients that cause problems not the active ingredient.
My Endo reduced mine and I became a zombie so it went back to what it had been and I felt much better. I spread my T3 through the day, I find taking it all at once my heart gets a little fast - a side effect. Good luck.
Do you have any thyroid blood tests to share Tired_Cat? 50mcg Levo is a very small amount, usually given asa ‘starter’ dose. I’m a fan of the slow & steady approach to adding medication; I only added 5mcg in the first instance, then increased to 10mcg when settled on this.
Hi!
Yes my latest ones were:
T4 17.5
T3 3.4
TSH 2.73
I’ll follow the slow and steady approach for sure!
Thank you 🙏🏻
If I were you, I think I’d try increasing Levo first. If this doesn’t raise T3 sufficiently, then I’d add the Liothyronine. I understand this may be difficult though if your endo has prescribed T3 already.
If 5mcg is giving you bad symptoms then change down to 2,5mcg of t3 that’s what I had to do as I was having really bad headaches, I still have to go low and slow. My endo prescribed 20mcg but I haven’t got to that yet, maybe never and that’s taking it slowly for nearly 3 years. As SeasideSusie said it is very powerful hormone.
There are no side effects as such other than you will be taking the equivalent of 30 mcg levothyroxine with 10 mcg liothyronine. I think 2 x 5 mcg is a good starting dose as it's just enough to notice a difference. Do you have some blood test results?
Just out of interest where are you getting your Thybon Henning (on prescription) from and how much is it costing? We used to be able to buy it from Germany where the price was more reasonable.
Hi Jim,
Here are most recent results:
T4 17.5
T3 3.4
TSH 2.73
I used the thyroid uk website and rang around the pharmacies there. The ones I tried all had thybon in stock.
Thank you for your advice,
Cat x
Really need the reference intervals to interpret the results but it does look like your fT3 is low.
What was the best price you got quoted?
Hi Jim,
T4 17.5 (12-22)
T3 3.4 (3.1-6.8)
TSH 2.73 (0.2-4.2)
It was £65 for 28 which seems very high? Just starting out so not sure what to expect really.
Catherine
Yes, when we could buy it from reputable German pharmacies it was £60 for 200 tablets but the EU no longer accepts UK prescriptions. £65 for 28 tablets is the sort of price I’ve seen.
It does look like you may benefit from liothyronine, possibly at higher doses. Perhaps stick with Thybon Henning for now and if you find you need it you can consider buying it without a prescription from the internet. In which case you can ask members to recommend a source by private message. Liothyronine costs around a penny or two a tablet in Turkey, 8p a tablet in France, so we are being ripped off big time.
I'm getting it for £1 a 20mcg tablet Jim. Roseway Labs. Private prescription.
I'm sure you can get it cheaper, I would private message some of the patients who have mentioned a lower price.
There was only one UK lower price in the thread that I noticed and when I asked about it, it turned out to be a mistake. Like me they are paying £1 a 20mcg tablet.
Hi can I please ask where you get your t3 for £1
I have a private prescription for it from a private endo that I consult with, and I send the prescription to Roseway Labs in London. You can look them up.
I am amazed that your endo has prescribed T3 , is he /she NHS ? Where are you located in the country , if you don't mind me asking. 
Im in Northern Ireland 😊 Is this bad that he prescribed T3??
If your Endo was near , he'd have a queue stretching from London to Ireland and even longer and people travelling from all over the country to have a consultation - in order to get T3 prescribed. He'd be extremely popular.
Many hypothyroid patients who're not improving on levothyroxine alone, would love the chance to trial a T4/T3 combination or NDTs (NDTs withdrawn without notice and leaving behind desperate and worried patients) and if that didn't relieve their clinical symptoms to have a trial of T3 only. T3 can now only be prescribed by an Endo and the majority will not prescribe.
The last of two doctors who were trained by using clinical symptoms alone i.e. Dr Peatfield and Dr Skinner were pursued as if they were criminals for prescribing towards the end of their lives what they thought would improve patients' health and I actually consulted with these two doctors who weren't in my area. You go anywhere and when we find a doctor who is sympathetic, and have a real concern to relieve patients' clinical symptoms we are more than fortunate. Best of all - their advice/prescriptions enable symptoms to resolve.
mirror.co.uk/news/uk-news/m...
I am sure there must be other people who are/were as desperate as Lorraine was before consulting with Dr Skinner.
Hi, just reading through this topic as i am on the verge of being prescribed Levo (just waiting for an appointment with an endo). Im a bit confused so apologies for sounding a bit dim, but i dont understand why T4 has to be prescribed if it is inactive? Why is that we cant just have T3? im guessing its to do with ratio's and maybe some people struggle to convert T4 into T3, is that right?
Hi Annieza. You may get more answers if you write a separate post with your question, but here's mine:
T4 has a long half-life, meaning that it stays in the body for a long time. As you said, it is converted into T3, which is the active hormone, and some people do have trouble converting T4 to T3. The good thing with T4 is that you can take it once daily and if you accidentally miss a dose, you probably won't feel much different.
T3 has a very short half-life, meaning that if you take T3 only, you would have to take it 3 times a day and you would feel the difference if you skipped a dose.
What tends to happen is that some people do well on T4 only and others don't. Some will need a combination of both in doses which will suit the individual person. Less often, one may not do well on T4 only or on the T4/T3 combination and may need to take T3 only in order to eliminate symptoms.
Some believe that T4 only is inadequate long-term and that the ideal is to take both T4 and T3 or Natural Dessicated Thyroid.
Hi Tired CatI’m also in Northern Ireland and am on T3 as well as thyroxine - I had to see endocrinologist privately as my own GP said T3 was unnecessary and they didn’t prescribe it - would love to hear which consultant prescribed it for you as maybe we attend the same person. If you don’t want to share this with all please feel free to private message me.
Yes, he is NHS but I saw him privately…
It's not bad at all, though as SeasideSusie says above you might have been able to improve your hormone levels by increasing levothyroxine on its own which is an easier way to get back to normal if it works for you.I only asked because it a devil of a job getting T3 prescribed on the NHS.
I dread to think how much it is costing you to get a private prescription filled.
I hope you're feeling better soon.
Mine has cost £100 for 100 20mg tablets through a private prescription. I figured out if only 10 mg a day is enough then that’ll get me through about 6 months which isn’t too bad? I wonder why the disparity of costs in private prescriptions?
Ps I have now edited my post - £100 for 100 tablets, not 200 tablets. That would have been something wouldn’t it? Sorry 😣
That’s a much better price… no idea why such a difference in price. I couldn’t find 10mg anywhere so had to get 20mg and quarter them (badly). I need a proper pill cutter or something more accurate as this is daft cutting them with a knife x
I’ve bought a pill cutter from Amazon. Not expensive and seems to do the job well.
Also did your Endo send the prescription off, or ask you to source it? Mine sent it off - comes from Germany via London. He was angry at the cost and kept muttering about ‘bloody Brexit’ and the ‘bloody NHS’…
Well I'm with your endo.! Bloody Brexit. It's hammered my business.
The cynical part of me says the price difference exists because someone somewhere is making a BIG profit from sick people.
Not sure if call that cynical…probably more realistic than cynical! Agree absolutely.
Hello Josephineinamachine Is that Thybon Henning you have? And you get it using a private prescription? Could you message me where you get it from please? It's cheaper than my current route, by half! 50p a tablet.
Hi Fancy Pants - sorry! See my edit - £100 for 100 tablets. Same as yours. My brain. Sorry!
Yes, I see that now. I hadn’t thought to raise that possibility with the endo. He literally zoned in on the T3 and that was him. Job done. I’ll stick to the 5mcg for 2 weeks and see how I fair. Have to stay hopeful xo
I would. And if you think you could improve move, go up to 10 in a couple of weeks time. Then wait for 6 weeks and retest. If, at 10mcg a day, you feel more tired again, drop back to 5mcg a day and wait 6 weeks and test. Taking T3 has really badly lowered my FT4 level and that makes me feel worse, so we have to be tightly tuned into how things are affecting us.
Please pay close attention to any side effects. I had a very bad experience taking T3.
Im sorry to hear that. What kind of side effects did you experience? X
You will be fine if you go 5mcg a day and increase in 5mcg pieces over time. The typical side effects are those of a revved up metabolism. So faster heart beat and raised blood pressure are the most likely. The faster heart beat can give you anxiety. But if it happens, drop the dose to a little less for a week or 2 and then try raising it up again. The effects are short lived with T3. Don't be scared of it. You have literally been given the holy grail without realising it. People get bed ridden here for want of it due to blinkered medics.
Ok, thank you for replying to me. All this advice is very welcomed. In April of this year I was unable to get out of bed or shower unaided but my GP kept telling me my thyroid was fine. I found a functional doctor to get me upright and since then have been using the internet to try to fix myself. It’s hard to know what to expect next. I just pray for healing ❤️🩹
Dizziness, heart palpitations, back pain, out of body feelings, nausea, jaw and arm pain, feeling extremely hot. I ended up in the ER because I thought I was having a heart attack or stroke. They said it is my thyroid I had negative T4 and negative Free T4. It was so scary.
Tired_Cat
You say 5mg and SeasideSusie says 5mcg. I’m presuming yours is a typing error
When I started t3 I did have a tense jaw and felt wired, I also felt tearful which if you look at the list of side effects is actually listed (which was strange). I had to titrate up very slowly after a couple of times of accidentally overdoing it. I did consider giving the effort up at one point because you have to be more disciplined and take meds at particular times, however overall I feel better (no more literally hypothermic mornings, palpitating heart or headaches). Better temperature and still sleep well. It is like walking a tightrope for me though, I swear to god my dose is weird, like 8 mcg of lio and 100 of Levo. Good luck,
Cricky! How do you cut up a tablet to get 8mcg?
With difficulty lol! Cut and nibble. End up with crumbs.
Wow !!! Your the first one that I read that had the same symptom as myself with jaw tightening when I raised my T3 or NDT. I wonder why this happens ? Is it that we need less T3 or NDT with a higher dose T4 ? I went very slow and never went past 7.5 mcg T3. Like yourself felt wired and tearful, tired. I even had muscle/joint discomforts too.
I'm wondering if some of us just need 2.5 mcg T3 with higher dose T4 to feel our *Optimal*? I'm not a good converter T4 to T3 and maybe the small dose is enough to help kick the T4 to convert to T3?
Yes my experience was very similar. I’m a poor converter and it’s like that little bit of t3 does the job.
Iv no idea but im always very low too so may Google and see what it actually is..
Everyone's different so I can only speak from my personal experience.
I was on 100 mcg levothyroxine and my endo added 20 mcg liothyronine without any reduction in my levothyroxine. The first few days were amazing! I'd gone from struggling to get out of bed to going on a bike ride with two cycle clubs on day 3. Within 2 weeks I had anxiety and my heart was racing ... I was overmedicated (it's happened three times now). I'd never felt well on levothyroxine anyway (the endo now agrees I can't take it) so cut it out and took 20 mcg liothyronine only. I'm now on 35mcg a day.
As everyone's different, just be extra careful about how you feel and either adjust the dose or go back and speak to your endo.
Hi, my endo started me on 20mcg split into 2 10s. I simply took the dose :0 Had a shocking headache every day for six weeks! I take my T3 & T4 at the same time in the morning and leave an hour before food or caffeine and do the same with my afternoon T3. I tried T3 at bedtime, but it stopped me sleeping. It took a long time for me to see positive results from T3 but my body temperature is mostly normal and my heart rate is up from 48 to normal for my age and finally after going gluten free, I have managed to lose some of the massive weight I gained before initial diagnosis all those years ago. So, I think it's worth seeing if you can manage with it and I hope you will feel real benefit - good luck
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