I am on a t3 trial. 75mcg levo and 2 x 5mcg liothyronine.
I’ve been on this for 6 weeks now.
My question is.... around 8 hours after taking t3 I am so hot I think I may spontaneously combust. This lasts off and on, mainly on until a couple of hours after my next dose. Has anyone had this? Or any opinion?
Having tried timing by changing when I take it has made little difference. I also get mild palpations (not many and they don’t register on my watch). I have only recently realised the regularity as to start with it seemed to be off and on all day. I have always suffered with night sweats so I didn’t think of the link. However they got particularly bad.
Have a blood test to do on Monday as I was thinking over medication? Although I don’t feel much different in all honesty apart from the heat. Maybe slightly more motivation. More in the beginning. Now I’m thinking it’s actually wearing off and maybe I should split between 3 doses?
Any thoughts would be much appreciated as I have a weekend to get through of sitting outside scantily clad which is not a good look 🤣
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Yeswithasmile
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Yes, definitely try splitting dose into three. It is a pain but if your total daily dose is correct you will hopefully only need to do this until your body is more tolerant of the T3.
Also are your nutrients and iron optimal? Have you got adequate cortisol levels? These are needed for meds to work well. If you have Hashi, are you gluten free?
I think I will split into 3. May I ask which you would think should be the larger dose? I doubt I can’t successfully split the tabs into 4 to try an equal the dose so I thought I’d do 5mcg before bed, the the next, morning and the last afternoon.
Vit D was shockingly bad so loaded. As recommended by endo but I haven’t had it tested as yet. B12 was over 467 ng/l and I am supplementing still. Ferritin is crap but I seem to have an issue with that and a couple of other things that the gastro wants to discuss next week. 🤞🏻🤞🏻
As it was only 6 weeks I just bought a monitor my health test as with Levo I know I’m not settled until 10 weeks so thought I’d do a more comprehensive one in another month. Just wanted some idea of whether it was over medication/under medication or a reaction to the actual pills. To be honest it has improved this week but I have found it tough. To the point I don’t want to take it but I realise how fortunate I am to get the trial so feel I just can’t waste it. Not this early on anyway.
May I ask ...? I notice you’re on NDT. Do you prefer it? Glad you made the swap?
I am glad I made the swop but NDT can be even more intolerant of nutrient/iron deficiencies, adrenal issues or elevated thyroid antibodies and I was in the fortunate position of having addressed all these over the year before when I medicated T4 & T3 before my local CCG withdrew it.
You are fortunate and I can't stress how important adequate nutrients, etc are in supporting your meds in working well. It takes many years for us to get into the state we do when finally diagnosed, and it can take a while to get out.
I used to take my T4 once a day but T3 split into three doses a day. I now take NDT split into two and probably always will have to as my adrenals don't seem to be able to withstand any larger doses (feel hot, and thumping heart beat). I take the larger dose upon waking and a smaller dose about 3-4pm. I also function best on low thyroid hormone levels which is unusual on this forum.
Ensure folate levels match VitB12 as they tend to use the same pathways. Are you supplementing methylcobalamin? Given your history and low ferritin, you might benefit from learning about MTHFR issues. Also, I found Vit C immensely helpful in aiding failing adrenals and still take upto 3g daily. Also salt.
You aren't on a high dose of thyroid hormone replacement (but admittedly I don't know your recent test results) but given that it is correct, splitting the dose should help. However, if you feel your meds are making you feel so ill you don't want to take them, then cut back. It is not generally advised to miss out doses but if it means your body can get an even more gradual initiation to T3 then it might be needed. T3 can not be rushed, and the T4 will continue to be working solidly in the background.
Interesting to read your experience and I’m grateful for that. Also functioning on lower thyroid levels but I suppose we are all different and I did wonder if that were me too (this is the best it’s going to be sort of thing) but I know it’s early days. I also think it came down the family line (didn’t bother with the gene test) and fee I need to try everything as I’m convinced one of my youngest is just like me. He refuses to have a blood test yet as he’s ‘fine’ 🙄. He’s 24 but moved back during lockdown and you sort of notice stuff.
I will look at your link. Appreciated.
As for vitamins, yes it’s methylcobalamine. Lozenges. I take magnesium and selenium too. A b complex as well. I do understand that everyone says about the vitamins so it is important. However 3g of vitamin c seems high. Obviously it helps but do you not get any side effects from it?
My cortisol was slightly high but dr and endo told me it meant nothing 🤪. No surprise there.
I cut down to 2.5mcg last night. Night sweats still but it was one dose de I will see. Be interesting to see what the level s come back as next week. Almost want to buy several tests and do them across a day/week. Purely as I’m intrigued. But I think that borders on obsessive lol.
Thank you again for you reply and your time x.
Edit: re dose. I was on 100mcg levo and my tsh went right down. I couldn’t have taken anymore without surpressing it. I think if you go by body weight I should be on a bit more but 🤷♀️ My pituitary said no.
Vit C is in mixed ascorbate form so no horrid side effects.
The best level of thyroid hormone is the one we function best on. For some it's higher, some lower. It doesn't matter and you have plenty of scope for improvements by addressing nutrient/iron levels, whether meds are adjusted or not.
Iron is particularly important in the whole thyroid physiology from being key to T4-T3 conversion to influencing TSH. Ferritin issues are worrying. Have you had a full iron panel? Have you been checked for iron deficiency anaemia?
Thanks for the link. I took a look and I will have to do some more reading into that 👍🏻
You are correct of course. We are all different. I just don’t feel I have tried for long enough yet at any of it to know for myself.
I’m not anaemic as I had an iron panel December last year. But my ferritin is poor although the rest were high and tibc above range. But now my platelets are raised again as are eosinophils and monocytes and ggt. Nothing major but my gastro booked an appt so I will see what he says and ask his advice too about the iron.
TIBC stands for 'Total Iron Binding Capacity' and is a measurement of the transferrin proteins available for binding free iron in the body.
Elevated TIBC usually indicates LOW iron levels evidenced by too many proteins in relation to the amount of iron in your body. This test works kind of the reverse to how you would expect it to read and eludes many GP’s (just as thyroid hormones tests seem to 😉).
Re elevated GGT, my own liver enzymes were massively elevated when first diagnosed with hypothyroidism but euthyroidism resulted in restoration of normal levels. Just google something like 'hypothyroidism and bile' for further info.
And finally elevated eosinophils and monocytes are common in endocrine disorders and auto immune disease. Have you has thyroid antibodies measured?
Yes I got that but my serum iron is also good. I did say to the endo that I felt my body just wasn’t working efficiently.
My ggt has upped for years and they continue to watch it. Platelets for a couple but the others are a new thing. I’m not concerned but iron seems to be such a complicated thing that I have supplemented but I’ve kept it low and thought I’d cover it with my next appt.
I had read about the auto immune link and yes my antibodies are both around the 400 mark. Actually I have read a paper on thyroidectomy recently and success in quality of lives in the participants. They had much higher levels than me but sometimes I do think just TAKE IT AWAY!! I wonder if that’s just my sheer bone idleness?! 🤪
I notice the you suffer from Haemochromotosis. So you must have a good understanding of iron. As soon as I clicked on your profile I realised I had read it before. Sometimes info stays in and sometimes it doesn’t 🙄. You obviously been through the mill and I am so sorry for all you have had to deal with. No wonder you have ‘read and read’. x.
Just wondering if you do split the dose in 3 do you need to take T3 on an empty stomach like thyroxine? If so that could be challenging (if greedy like me)!!
Well it does say that t3 is not as fussy as t4 but I am trying to be as empty as possible. I’m also greedy so it’s tricky lol. Let’s face it one is tricky!! And if you’re lazy...? Waking up early to take levo then waiting for breakfast!! 😱🤣
Totally sympathise with your symptoms. I was exactly same. Did you introduce slowly? I have to introduce so slowly and each time wait for my body to get used to the next dose and then I could introduce another 2.5mcg. It took 5-6 days between each raise. I started on 2.5mcg split in two doses. I had a blood test last week and it sent me hay wire again. So I’ve dropped from 15mcg down to 10mcg. Seem to be acclimatising back to that again and then I’ll go back up. But have to be so patient.
Ahhh thank you. It is reassuring to know it isn’t just me although I sort of wish it was as it isn’t pleasant!!
I went straight in on 2 x 5mcg as I not usually one for having issues with medications or things. I didn’t even think about it. Thought I’d be fine 🙄. Stupid really as it’s not like I’m tip top healthy.
I had read a previous post of yours but obviously didn’t feel experienced enough to comment but I understood you were trying to get your dose right. Has the few days in between made the difference before another increase? Just didn’t seem very long and I didn’t even really notice a thing for a couple of weeks and only then it was only more motivation.
You’re very welcome. Yes I felt a bit alone with it too because youre expecting it to make you feel wonderful and instead it’s very uncomfortable. Yeah I’m feeling better on 10 but not ready to increase just yet. I won’t attempt that until I’m feeling no symptoms from the 10. Thing is my pins and needles have come back with the drop in dose, so I clearly need the higher level but i need to just go with my body.
Expect I’ll be able to go up 2.5 mid week. That’s what happened last time. You just have to be super patient.
You mention not being tip top healthy, what are your current vitamin and iron levels? I know that can be an issue and whilst on T3 I worked on my iron a lot more and the levels have gone up which might be knock on impact improving how I tolerate the T3. A good circle!
Oh yes you do expect to feel great 🙄 like it’s going to be a bit of magic and when it’s not (which you half expect really anyway) the realisation again that it’s a long slow road is, quite frankly, effing frustrating lol.
At least you seem to be able to read the signs your bodies giving you and that has to help you decide when to increase and by how much. I suppose that’s just time and experience. I am definitely going to follow you there and be more guided by how I feel and go back to being patient. All good things come to those who wait and all that!
Yep still working on vits. Definitely a work in progress here. Tbh the other things I can deal with but the heat is taking some dealing with. When you’re used to moaning about being cold it’s surprising to be moaning about being hot lol.
Hope your pins and needles settle down soon. That’s a symptom I don’t really get and I admit I am pleased not to. It must be very unpleasant to deal with 😔. Hopefully you’ll manage to increase again before too long and they improve x.
Thanks hope you get on better too. Going to give you a follow if you don’t mind so I can see how you get on.
It’s pretty easy to read my body signs, they’re quite loud and clear “tight chest” “feel uncomfortable” “heart feels weird” ha ha ha it’s reassuring to know that I can increase the dose and be okay with it. When I first started I thought I never would be able to! I thought I was the odd one out. Definitely reassuring to know there’s others in same boat
I know your right about the vitamins it’s just that I got an appt with my endo and let’s face it that’s pretty amazing at the moment and as I didn’t know when I’d get one again I asked for t3. He agreed. I was bowled over and felt I couldn’t not start it.
I know I’m not there yet but I am keeping on keeping on but I do understand yours and others on the vitamins point.
I am going to split the dose from today and see if that helps 🤞🏻🤞🏻
I think it’s about absorption SmPea. If you have food intolerances you aren’t absorbing everything you need and also you are damaging yourself at the same time.
I did gluten free for quite some time when my kids were younger and it may have had an effect on me but I think I’m more dairy intolerant. I believe they can go hand in hand in many.
My endo insinuated that I may be coeliac. When I told him I’d had a negative biopsy he looked and said it was ages ago (5 years) and dismissed it. I was surprised by that. I thought it would be conclusive but obviously it isn’t.
I can say that I have thought about it more seriously than I have in a long time. Going gluten free. Also managing my weight. I am over weight now. It’s like I’ve had a little kick start.
Had endoscopy immediately after 2nd negative coeliac test
Endoscopy revealed damage exactly as if coeliac....gastroenterologist was astonished I am not coeliac. Had DNA coeliac test....said probably not coeliac
Either way ....it was irrelevant....absolutely strictly gluten free has been life changing
Couldn’t tolerate T3 until gluten free and all vitamins optimal (required significant and ongoing supplements to maintain optimal vitamin levels)
Well that is shocking.... I had heard of false negative blood tests but to be so obviously damaged from the endoscopy just goes to show that those false negatives aren’t dependent on how much damage is there 🤔.
Also interesting to read your experience of just how much it has helped you and tolerating the t3. Along with the vitamins. I really must stop using covid and both my grown up sons moving home who eat and eat, They were dragged up so between working and living in a house with too many self centred men 🤣 who cook once a week if I’m lucky (oh and the mess when they do?!!) combined with hypo stuff it’s like I can’t see the wood for the trees!! I need to change my attitude and really take onboard this gluten free idea again. Thanks Slowdragon.
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