I’m now taking my liothyronine 2.5mcg morning and 2.5mcg around 4 in the afternoon. I take my levo early in the morning as usual.
So since tolerating the 5mcg liothyronine I’ve felt sick on and off, still on edge feeling like I can’t relax and headache on and off, when I take it my head goes weird also like spaced out. I really don’t feel well and I think it’s got to be the liothyronine as nothing else has changed.
Can I stop the liothyronine and just go back to my old 175mcg of levo as I did not feel this ill then. How will stopping it effect me?
Advice please as I really don’t feel well, no consultant available still and I’m not sure what to do. I just feel the t3 is not making me any better.
Thank you.
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Cheekycharlie1981
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So you’re on a Liothyronine dose about equivalent to about 25mcg Levothyroxine. How much Levo are you taking with it, and how long ago did you reduce the Levo? These are questions that make a difference to the responses you will get. Do you have any test results? Are you sure of the quality of your T3. If you feel worse on Liothyronine then it makes sense to stop it but you may feel poorly until your Levo dose builds up your levels again, assuming your body can just switch back to how it worked before when you were just on Levo. The T3 will come out of your system quickly.
As per previous post I was 175mcg levo and reduced my levo to 150mcg nearly 3 weeks ago. I’ve been taking the 5mcg since Monday this week, before 2.5mcg of t3.
T3 is Sigma Pharma prescribed from nhs hospital so perfectly fine.
I was put on T3 Sigma 5mcg. Prior I was on private brand ThyBon Henning. I had no issues with ThyBon Henning, In fact I felt brilliant. On switching to NHS Sigma 5mcg felt very unwell. I even got skin burning and stabbing pains on my skin too. I switched back to ThyBon Henning and was much better again. I cut these into quarters as I get 20mcg size. I’ve requested a different NHS brand now. Next week I will collect Mercury Pharma 20mcg from the NHS and cut into quarters. This is fine with a pill cutter. Let your GP know you’ve had a problem with this brand and request another. Or just call the pharmacy where you collected them to swap for another brand. I don’t think there is another 5mcg brand out there with the NHS. You may have to go with 20mcg say Mercury Pharma and cut them.
Don’t abandon T3 if you need it. Are you a poor converter?
I can’t I reacted to mercury Pharma and I can’t have dairy. My alternative is teva. Thank you for letting me know. Surprised Sigma is made in smaller batches and less fillers.
when I do this kind of ! substitution I do the swap in 1-2days ,3weeks before T3 will have suffered depletion of T4 so you will have gone out of balance. Don't give up on T3 yet. you could try taking the previous t 4 dose and the T3 then gradually reduce T4 - It may also help if you take the T3 in smaller doses. I split my 5 mcg into quarters and take most of it during the night, it doesnt keep me awake !
I just feel sick on and off tired but can’t switch off, headaches. I just feel worried now as worst I’ve felt in years. That’s why I’m thinking of stopping t3 and increase dose levo back up. Just wanted some guidance.
I was on t3 along with synthroid for a ye@r and a half and I had unrelenting anxiety and impatience which is so much better. Now that I-n an equivalent dose of synthroid. Anx iety is a do cumented side effec t
you may need to give it some time, this could be anxiety or it could be something else. I got intense itching from T3 when I started taking it because I'm sensitive to the fillers they use to make it into tablets. I am now on NDT and feel great.
You can do whatever you like it's your body you don't need permission from anyone to try anything at all. I would give it another week before you abandon the T3.
I got skin burning and skin stabbing pains on Sigma. I also got a rash. At first I thought it was shingles. 3 Drs said it wasn’t. I’ve now changed back to my private T3 ThyBon Henning and I’m fine again.
It's amazing the difference a product can make i.e. either well or unwell. It seems to be a 'hit and miss' and we should be allowed to trial different thyroid hormones from different manufacturers.
Yes, definitely. I was so pleased when finally the NHS offered me T3. I needed 5mcg too and was pleased I didn’t have to cut my private 20mcg up anymore. However, Sigma 5mcg from the NHS proved to be very bad for me. I’ve requested another brand from the NHS. Next week I shall be trying Mercury Pharma 20mcg and see how that goes. ThyBon Henning has been brilliant but this is privately sourced.
Isn't it amazing that a change from one make to another can affect us differently, i.e. we feel worse or we feel better. It is just like a lottery but we're disbelieved by those we'd expect to know more than us.
After all we are dealing with hormones and ones that are essential to give us a nomal and healthy life.
McPammy There isn't a differentiation between NHS and private T3, you can have Thybon Henning dispensed to you against an NHS prescription, you're limited only by what your pharmacy can be bothered to source. I have my NHS prescription dispensed as Thybon Henning.
Can I ask which pharmacy provides ThyBon Henning on the NHS please. I’ve asked my local pharmacy to source ThyBon Henning via an NHS prescription and they said they couldn’t get it.
How did you go about it with the NHS. Are you on a named patient basis?
I was prescribed T3 for 10 years until it was suddenly withdrawn at the say so of someone from the CCG (with a complete disregard for the guidelines, but hey ho). I asked for an Endo referral and he agreed it should be reinstated but the CCG said no to my GP's letter (it was so pathetic a letter, that I would have said no, TBH!). I then tested homozygous-positive for one of the DIO2 variants, and also had Medichecks results showing my FT3 had bottomed without my Liothyronine, and the Endo again agreed I needed it. So the GP wrote another pathetic letter asking for it to be reinstated but that time it was agreed to. I can't remember if 'named patient basis' was implied or explicitly stated, but in essence that was the basis on which I got it back ie due to my specific circumstances.
Any pharmacy can access any drug that's being manufactured, if they want to. An example is that some patients are prescribed Armour, which is unlicensed in the UK and has to be sourced in the US. There's no reason why yours can't get it other than individual or corporate unwillingness. I withdrew my Liothyronine prescription from my local pharmacy that dispenses all my other meds, for that reason, and have it dispensed separately by Tollesbury Pharmacy in Essex, where the Pharmacist is excellent customer service personified. Details here thyroiduk.org.uk/tuk/treatm...
Your story sounds a bit similar to mine in terms of getting refused by the NHS. I too have a positive result on the DIO2 gene test by one parent. I’ve had issues for 11 years on Levothyroxine alone. After many hospital visits and finally going private I’ve found I needed T3 all along. Then the battle began with the NHS. 15 months of hell and losing my dream job they’ve now agreed I need T3. Only to be given Sigma which I went backwards on. Now I’m on ThyBon again and ok. Until the next change to another NHS brand next week. I’m glad to hear you’ve got ThyBon on the NHS. I’m going to try and push for this now I know you have it.
McPammy You don't have to 'push for it', just ensure your prescription is written as Liothyronine and not Liothyronine Sodium and anything can be dispensed with that active ingredient. I have my prescription sent electronically to Tollesbury in the same way that my others are sent to my local pharmacy, and within what seems like the blink of an eye, he has made up the tablets, put them in a bag, and they're with the courier winging their way to me in the Midlands. They get to my door with no effort from me, in the same time as my other meds are available for picking up locally.
Wow. That sounds interesting. I’ll definitely look into this next week. I’m due to collect Mercury Pharma from a local hospital pharmacy next week. I have loads of ThyBon in my cupboard.
Cheekycharlie1981 It is Liothyronine Hydrochloride rather than Liothyronine Sodium, but I've been unable to uncover why the manufacturers chose that Liothyronine salt over the other. It doesn't seem to make any obvious difference.
Do you mean no lactose? I've just end checked the PIL, and the excipients are listed as preagglutinated corn starch (maize), maize starch, microcrystalline cellulose, sodium carbonate, sodium thiosulfate 5H2O (Ph. Europe.), fine-particle silicon dioxide, hydrated castor oil.
I take T3 only once daily and it is more convenient for me as I don't have to worry about taking 'other doses' which would mean always ensuring stomach is empty and that nothing will interfere with the uptake of T3. The purpose of T3 is to saturate all of your T3 receptor cells and then its work begins and one dose can last between one to three days.
5mcg T3 is small, so there's no need to split as it's about equal to 25mcg of levothyroxine (in it's effect). Always take thyroid hormones with one glass of water on an empty stomach as food can interfere with the uptake.
Levothyroxine is T4 alone and inactive. It has to convert to T3 and it is T3 (Active) that's required in our millions of T3 receptor cells.
Do you have a conversion issue. If I only took T3 once a day, which I have, I’d find myself very unwell late afternoon, which I have also. A small amount of T3 ie 5mcg to take depends on how much T4 you need to take. Everyone is different with different requirements. I take 75mcg Levothyroxine and 5mcg T3 twice a day. If I take 10mcg of T3 in one dose I feel like I’ve been sent up in a rocket. Then crash 8 hours later. If I take 5mcg in morning and then 5mcg afternoon I feel lifted and stable all day.
I also struggle with the t3 it makes my head go strange like I’m getting a high and that’s with the tiny 2.5mcg. I dare not take 5mcg in one sitting I’d feel the effects worse so I’d imagine. By afternoon I feel a low like I need my lift so I take the t3 split.
My body aches all over and feels very tired another symptom of the change.
I just feel so on edge and tired and after all the stress to get t3 I feel I’m jumping ship and wanting my old plain t4.
Wish my body would love the t3 but feel I’m just killing my self trying I feel that off. I’ve had headache more or less none stop since taking.
I totally understand. I also can go too high on T3 if I take too much which makes me feel quite unwell.
I started T3 on a brand called ThyBon Henning. It is brilliant for me. The NHS Sigma made me very unwell. As soon as I stopped it and switched back to ThyBon Henning I was well again. Please consider changing T3 brands. You can call the pharmacy and ask for a brand more suited to you.you don’t have to continue on Sigma. I did think to myself a few backs when realising Sigma was no good for me ‘ imagine if I started on NHS Sigma I’d think T3 wasn’t my answer’. I’m glad I started on ThyBon Henning knowing how good it made me feel and symptom free after 15 months of being housebound from having a full time job.
I started T3 with Sigma. Whilst my side effects were different from yours, I really couldn’t tolerate it.
I stopped for around 5 days from memory, then restarted but on a quarter of a 5mcg tablets 2x per day.
It was a tiny amount but even then I had slight effects on the first day, but nothing thereafter. I stuck with each dose for 5 days before increasing by a quarter tablet and repeating.
T3 has definitely made a massive difference to me so I’d say stick with it. What has been clear is that it’s a very potent hormone compared to T4, so tiny changes can make a big difference, in some people.
I also split my tablet into quarters to start then built up to the whole 2.5 then 5mcg. I feel like I’m a space cadet when I take it very powerful especially in my head.
I am surprised that you are feeling worse on t3. I will say that it saved my life. (Or, gave me my life back.) I take the name brand Cytomel and that is all I take (no t4) and the Cytomel works well for me. .. However, when Cytomel was unavailable, I tried other, generic t3 and it was like taking nothing. ... It is sad that the manufacturers vary their formulas so much, yet call it the same thing. ... Unfortunately, all of us are different too and what works for one doesn't work for another. All I can recommend is to keep your Doc informed as to how you are being affected, and maybe try another version of t3. Many of us have had a period of trial and error before we hit on what works for us. I hope you find your answer soon.
Anyone take the teva t3? I’m just worried no one seems to use it on here and report they are well. I’m limited the sigma and the teva were the only dairy free options.
I was given Mercury Pharma and felt broken but that was 10mcg straight up, body went warm, felt faint, heart went up I called for an ambulance. Scary.
I’ve not had the best introduction to t3. Then my brand changed to sigma at a lower dose. And my levo lowered more.
Just want sickness to stop and my headaches. I’m even sweating a lot on and off and body aches.
I don’t know what to do, feel I’ve no help medically as specialist on holiday and typically it’s the weekend and alls closed.
When will my bloods level out, levo reduced now for 3 weeks nearly and t3 5mcg for this week only before it was lower dose.
My endo seems to think I’d be good on the 5 till November and then bloods and drug adjustments. To me that far to long away.
I started on 20mcg T3 about 3 months ago and it's Teva. For the first 6 weeks I had a headache every day but it eventually subsided. I was told to split my dose into 2 but can't seem to get used to adding in another dose, so take 20mcg in the morning with my T4. Overall, I feel a little less poisoned than I did on 150mcg T4 only but I can't say I feel much better on T3.
I was started on Mercury Pharma T3 only in March after a long journey not tolerating T4.
Initially I found I couldn’t tolerate MP T3 as it contains acacia powder. I switched to Teva T3 very quickly and was a bit worried, especially with reading people’s reactions to Teva brand.
I have to say Teva T3 has been the best thing I feel like I am getting my life back!
I was started on 10mg twice a day (unfortunately Teva tablets don’t cut very well so I have to crush and dissolve in 20ml of Water and take 10ml for 10mg dose - bit of a faff but worth it when I started to feel better)
Been on T3 19 weeks now and 2 weeks ago had a dose increase. I’m now taking 30mg (20mg / 10mg split) and 20mg (10mg / 10mg split) alternating days. Feeling a little wiped out but I think it’s my body adjusting to the dose change.
Personally, I’d say it’s worth sticking it out. You may need to change brands and just because a brand for other people is bad doesn’t mean it will be bad for you. Everyone is different. I also found I was better starting on a low dose and slowly increasing my dose.
Hope that helps. Let me know if you need anything else. Good luck!
Yes I have a pill cutter but Teva T3 just crumbles and if it does cut it’s not accurate more 2/3 and 1/3. Plus pharmacist and leaflet says for smaller doses crush and dissolve. It is a total faff but I’ll take the faff when I’m starting to feel like myself again! Long term I’m hoping to find my optimum dose and hope it’s taking the 20mg tablets.
I use the pill cutter for my hydrocortisone dose having to split 10mg into 2.5mg doses!
Think only T4 brand without acacia powder in is Wockhardt brand (and possibly liquid T4) but Didn’t get as far as trialing them as Endo thinks I was having T3 conversion issues alongside sensitivity to fillers in T4 (it was an allergy consultant who identified acacia powder as the issue)
I did read that about dissolving them in water more accurate since the dose is disbursed in the tablets, I know teva say to dissolve for accuracy.
I think I need more t3 I feel under medicated but I can’t do much at the minute and my bodies only just coping with the 5mcg split. Plus the Sigma I don’t know if this is causing symptoms. No one on here has said they do well on Sigma just bad things.
Speak to your pharmacy or GP about changing brands. That made a huge difference for me. I think your wise to stay on the lower dose and build up to a higher dose. Allow your body to get use to the dose. My Endo team told me not to do any dose changes before 4 weeks and always get levels checked before.
Give yourself time and rest. I know when I was in a bad way I couldn’t do that. I was desperate to feel better and was frustrated it wasn’t happening quick enough. Now I’m coming through the other side I wished I’d been kinder to myself and not got so stressed by everything. You will start to feel better. Take each day one day at a time.
I forgot to say that I have fairly regular short bouts of sweating and to begin with I had face and chest flushing. A couple of benefits I have noticed is my pulse has increased to fairly normal levels, rather than below 50 and although the weather has been hot so can't be completely sure, my toes feel a little warmer.
My pulse is around 48 in day can’t even find it at night, was not this low before. In morning I sweat a lot feel like I’ve a bug but I don’t think I do.
I’m on Thybon Henning, 20 mcg privately sourced in the UK, costs around £40 for 100 days. I changed recently from T3/T4 combo (Novothyral). Novothyral was around £30 for 90 days sourced in the UK and was a huge improvement compared to T4 only on the NHS for 12 months - the combo gave me my life back and I’ve recently lost loads of weight. I changed to T3 Thybon Henning about 6 weeks ago - made me feel dizzy and lightheaded with a headache first few days. I take it once a day at weekends and split into two doses during the week (forget to take second dose when not at work!) forgetting second dose makes me feel much more tired in the evenings. Change to T3 only was because I was converting the T4 to reverse T3.
Charlie I sympathise. I have switched to T3 from levo with high hopes and feel awful.... major stiffness in back and arms and neck, tired , listless and generally as you say ‘unwell’. Not sure how long you have to take the dose before checking if replacement is adequate but am worse on this than levo for sure. Hope you find an answer as took me years to get T3 prescribed.
I thought long and hard to get t3, so when in another post I had a terrifying response to t3 I felt close to tears.
Since having my daughter my thyroid gland is smaller after suffering swelling and a growth it’s just not doing the job at converting it once did.
The t3 is so powerful it’s an instant high of unease for me. It does go away quicker now but I’m very nervous of my own body right now and it would be easy to wimp out and go back to my levothyroxine. But I know if I do my conversion will just get worse and I’ll feel ill at some point in the future. It’s never going to heal itself.
I was told to take 10lio with my 75 levo but have not been able to get to that much without ear pressure and ache. So I’ve stuck to 5 lio and sometimes just 2.5 (dust and fragment). I’ll do bloods again once I’ve stuck at that for 6 weeks but I feel ok. I’m not going to rush back to trying 10 lio as I just can’t tolerate it but I believe not taking any is worse - as I am teary. So maybe just try to stick to a tiny amount for a good while?
I was put on Liothyronine 5mcg 1 tab twice a day plus Levothyroxine 0.100 mg Sunday - Friday only 3months ago and after a 3 month trial my tsh went very low so my endocrinologist cut my dosage in half. I now take 2.5mgc and the same dose of Levothyroxine. My tsh is within normal range. Finally getting normal tsh levels!
My TSH is very low, but T3 level has increased and T4 is top of range. If you have enough thyroid hormone your TSH will be negligible because your thyroid doesn’t need to be told to produce more hormone (which is basically the purpose of TSH). I see a private GP who fully understands the relationship between the different hormones. Actually my NHS GP does too, but I think that’s rare!!
It’s like saying “I don’t have hunger pangs” when you’ve just eaten a meal. If you don’t need food, your brain isn’t going to tell you it’s hungry! Over simplification, but it seems a good analogy!
With increased Levo I was producing reverse T3 instead of T3. Which is totally useless to your body but too much revT3 prevents real T3 from being used because it uses the T3 receptors in your cells which prevents the active T3 using them so you will still have symptoms.
Thanks that’s interesting, I hadn’t seen that research. The private GP tells me that high reverse T3 is indicative of oxidative stress which is not good and may also be indicative of mitochondrial dysfunction. My blood gets sent off to a US company for testing as it’s more comprehensive. I suspect there isn’t enough conclusive research yet either way. I do quite a bit of my own reading, but I’m happy with the very positive effect that seeing a private GP has had on my overall health and well being. I’m not too bothered why it works, but it jolly well does!!
Folks with a conversion problem will still have hypo symptoms despite their blood tests showing a good level for tsh (around 1) and a T4 level in the top half of the range. To confirm a conversion problem you need to have tsh, t4 and t3 tested at the same time. You then compare where your t4 is in the range compared with where your t3 is in its range. For example my t4 is 60% through its range but my t3 level is only 16% through its range. My tsh is below range. This suggests I am not converting the t4 efficiently. If you have want to explore your conversion you need to pot your levels and the ranges and we will comment.
Tested last week, early morning, empty stomach, 24 hours after levothyroxine. No supplements. Fingerprick test with Medichecks.
TSH 0.073 (0.27-4.2)
FT4 18.7 (12-22)
FT3 3.81 (3.1-6.8)
I am fairly OK, though still tired all the time. Pile weight on easily, especially round middle. Dry skin. Brittle, thinning hair. Hardly any eyebrows or lashes. Swollen, scalloped tongue. All joints ache.
It would be good if you posted your results as a new thread. That way other members will see it an respond. From those results you may have a conversion problem. I am sitting in bed at the mo but once I am on the go I can work out how far through the rNges you are. T3 should always be at least half way through range so 4.8 or higher for you. As I say start a new post an the experts will comment.
See my post above about reverse T3 too. Useful to have that tested too.
Hey there! So here is the thing. When I increase from 2.5 to 10 mcg t3 within 1 week, at first felt brilliant, then overdose and then dead. Increased too quickly. Some of us can only tolerate an increase of 2.5 mcg for 2-4 weeks! I would back down a bit and see how I feel after cutting it down to 2.5. My doc recommends increases of 2.5 every 2 weeks if no ill effects. Also, my most recent experience showed me that I need to reduce Levo in order to increase t3 even though my ft3 is over midrange, not high, for me I can take 7.5 t3 for 125 or 137 levo (on 125/7.5 feeling undermed, on 137/7.5 feeling more undermed and drugged up), if I try 10 t3 with 125 (tried twice now) I feel better in terms of energy, don't need to sleep at all and be ultra energetic, but after a while pulse goes up, anxiety and overdose starts. Also, I take all my meds in the morning, splitting doesn't help, makes me crash and dizzy and terrible. Hope this helps someone with an unusual situation like mine
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