I started T3 after my NHS endo actually gave me a 3 months trial, been on levo 12 years, my thyroid blood results were showing high or over range Ft4 not even mid range Ft3 and TSH never suppressed sometimes high even with a high ft4!!
I started T3 3 weeks ago mainly for depression anxiety my mental state of mind really, not physically... and have weened myself up to 10mcg, my endo told me to reduce my Levo from 100mcg to 75mch and add 10mcg of t3...
I'm suffering really bad with moods/anxiety/ headaches, I know i used to get these symptoms if I was undermedicated on levo alone,... I just don't what to do next to help me...
I was really hoping t3 was my saving grace...
I was fine for 10 years on levo until 3 years ago I had some kind of severe mental breakdown out of nowhere, and when I went to see a doctor a out it, they revealed my tsh was at 8! But ft4 was over range!?
So got referred to an endo and for 2 years iv fought for t3 and finally got it...
HELP!!
I really don't want to give up on t3 and have it taken away...
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ThyroidObsessed
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Start with your blood test results and have you had all your vitamins tested? If T4 is has always been too high? do you need to reduce that further while adding T3?
So your TSH is stil not suppressed. Your T3 still has wiggle room. The only thing I can liken it to is when I constantly tried to improve symptoms with T4. It worked initially and then I began experiencing Hyper symptoms for the first time in 10yrs. In was awful. First ever migraines, anxiety, not wanting to socialise/leave the house, jittery, need to move but soooooo tired. I slowly reduced my T4 and fell directly into Hypo symptoms no in between despite slow reduction over 7mths.
I do not know the correlation between high T4 and these symptoms. It’s supposed to be the inactive hormone. I just don’t know 🤷♀️
But if I were you I’d reduce the t4 and then introduce more T3. It’s not scientific. It’s just based on experience. This is all very personal to the individual and it’s up to you to find your sweet spot! Make sure those vitamins are optimal. My Vit D was terrible! A lot of the dizziness on standing and surrealism went when I increased Vit D. The headaches went with thyroid meds correct and happiness like I’d never felt before occurred when I started T3/4 combo.
You probably need another increase in your dose of T3. If your FT3 was as low as you indicate, 10 mcg probably isn't going to help very much. You need more.
So, you obviously have a conversion problem - although from what you said I was expecting an FT3 of about 3.2. Even so, 10 mcg T3 is not much of a dose, and you probably need an increase. When are you planning your next blood tests?
T4 not as inactive' as people suggest and high levels do seem to lead to hypothyroid like symptoms or other adverse effects. Too much over time or even in one dose can reduce the rate of T4 - T3 conversion in the cells where it is used. The body does seem to get hung up on it though even if it’s not the right dose so dropping suddenly 25 mcg Levothyroxine could shock the system and suddenly starting 10mcg of T3 or doubling from 5 to 10 mcg could also disrupt things uncomfortably
From years of experience monitoring my blood levels and physical symptoms along with adjustments to levothyroxine and liothyronine, the devil is in the detail, in quite small changes of both in relation to each other. I find the best approximation to normal healthy thyroid levels delivers the least symptomatic disturbances but it’s a bit of a tightrope.... nevertheless it does seem that the most likely normal healthy levels of 1-1.5 tsh and 15-17 t4 and 4.8-5.5 t3 are a good place to aim for and splitting both levothyroxine and liothyronine into 3 or even 4 doses through 24 hrs does wonders for smoothing out the whole process. A normal healthy thyroid gland would never dump 100 µg of T4 into your bodily fluids in the way that a standard level thyroxine dose can do. And as for T3, the dose response is even more profound.
So for me what works is 3x25 levothyroxine with 3x equal split of a 5mcg liothyronine tablet as a baseline or core dose during the night (11pm to 7 am) then I use another 10-20mcg of levothyroxine with up to 2.5 mcg of liothyronine according to need (how I feel) in one daytime dose which I don’t take between midday and 6pm because this is the tsh quiet period of our circadian rhythm. I try to keep these doses as consistent as possible but the body naturally adapts thyroid metabolism to meet other metabolic needs so consistency doesn’t always hit the optimum. Consequently there will be over/under periods and changes to the variable dose element of the regime can help offset these but can be difficult to judge, again it’s worth the fine tuning in my experience.
Yes it’s all a tedious fag to manage it like this but the alternative ‘easy’ simple dosing regimes feel so unphysiological and have so many side effects it’s worth making the effort to try and replicate natural thyroidal secretion and balance.
Also I’d be very wary of exceeding 10mcg liothyronine, it simply isn’t physiological or necessary unless you have a well founded and quite unusual degree of specific medical need, like highly retarded t4 - t3 conversion. In my experience with my retarded conversion enzyme, splitting levothyroxine does as much to help conversion as a small dose of t3 dose does to offset the lack of it! It takes 125mcg of levothyroxine and 22 free t4 in the blood to raise my ft3 to 4.7 whereas 90 mcg of levothyroxine giving 16 fT4 plus 5 mcg of liothyronine gives me 4.9 ft3 and 1.5 tsh. And even more significantly I feel really unwell on the higher levothyroxine only dose regime!
Hashihouseman, that was fascinating. Can I just check when you say you take 3x equal parts of a 5mcg liothyronine tablet and 3x 25mcg levo, do you take each 1/3 at three seperate times in the night?
How does that 3am dose suit you? Do you mind the broken sleep?
in reply to
I'm curious because I started a T3 trial in December. On 20 mcg T3 and 75 mcg levo as endo recommend. I felt like lead with fatigue and muscle pain but brain fog much better. On 112.5 levo and 5 to 10 T3 I feel much better. So as you sugget, I think a more physiological dose of T3 suits me better.
Ironically, the endocrinologists when they can be arsed to prescribe T3 always seem to prescribe too much and then when the outcomes are not so great I think it reinforces their scepticism. They need to start facing the logic of physiological replacement and helping patients get over the inconvenience and commit to it or better still getting the drug companies to produce a much better thyroid hormone replacement with physiological ratios of T4 and T3! If I had £1 million to hand I would produce and license it myself.
Hello there, hope you are doing well. yep my GP did two retests over the past month on the same dose to get a good average rather than a one off. I felt mentally ok but tired on 75 Levothyroxine and 20 t3 and my T4 was below range.. you and seasidesusie were really helpful with working out what to do next. I went up to 100 T4 and 10 t3 then had the two retests, felt my energy coming back and T4 back in bottom of range but still achy and crashing in afternoon. So between me and GP decided to test out upping Levothyroxine to 112.5 and sticking with 10 T3. Plan to retest in July. I’m beginning to learn I need T4 well in range and T3 at 65% or over.
Would have been clueless about any of this without this site
I see the locum endo in July but to be honest GP has more interest in working on dosing strategy and testing.
Thanks to all I’ve learned here my GP says he sees me as an expert in my condition and we have now got a very collaborative relationship.
I found similar. My endo reduced Levothyroxine from 125mcg to 100mcg. After 4 months my FT4 was bouncing along at bottom of range. I felt pretty grim. Like you I increased cautiously back up in two steps. Initially to 112mcg and retested after 8 weeks. FT4 had stopped dropping but hadn't gone up. I put Levothyroxine back to 125mcg. Symptoms slowly resolved
I tried reducing my T3 from 20mcg (3 split doses of 10mcg, 5mcg and 5mcg) .....(3 x 5mcg) but after 12 weeks my resting pulse dropped to 46-48....felt pretty weird
On 125mcg Levothyroxine plus 20mcg T3 my resting pulse is typically 54-56
Just trying experimenting with splitting Levothyroxine to see if I can improve very low TSH. Currently taking 100mcg at 11pm and 25mcg at 7am (alongside 2 of my 3 x T3 doses).
Hi Slowdragon, (sorry don’t know how to flag someone’s name) the posts from hashihouseman on splitting the levothyroxine as well as t3 sounded very interesting and made sense to me. Be good to know if you notice any improvement or changes to TSH from splitting.
I don't notice it now. It’s less disturbing than getting up for a pee. I used to set an alarm but that was a bit over the top and unnecessary because after a while my body knows when it needs it and wakes up and I kind of take it in my sleep without an alarm the routine seems to settle quickly to be almost autonomous. I think that if the dose was too high it could disturb sleep.
Thanks for that, I'm seeing a locum endo at the moment but while he's very nice and prescribes T3 he gave next to no dosing advice. Seadidesusie and slowdragon basically walked me through start up dosing for adding T3. My own GP is great and has been brilliant helping me explore dose changes based on symptoms and bloods while I wait for another endo review. It's weird how a specialist prescribes and expensive consultant only medication with only superficial guidance on use. I was reviewed in March when on 20mcg T3 and 75 levo and feeling suddenly like lead with fatigue, endo didn't even discuss dose and just said maybe I had chronic fatigue (I'm not sure a month counts as chronic). I followed dose advice from the administrators at thyroiduk and my GP put my T4 up and T3 down and was improving within 10 days.
You hit the nail when you said it’s weird consultants prescribe this ‘exceptional’ drug with such crude and careless supervision and support. My endocrinologist was the same! It’s a national scandal
Thank you for your lengthy knowledgeable reply.. although it does just go straight over my head sorry 😕...
I was fine on Levo for 10 years then something must have changed as I had some kind of severe mental breakdown, my gp revealed a top of range ft4 and TSH of 8!!?? Mid range ft3...
I'm very sensitive to any change in meds...
I feel a change in Levo dose within a week and my levels also change very quickly, I once stopped taking any thyoid meds altogether and after 11 days my tsh went from 2 to over 100 and unreadable on the labs...
I lowered my Levo to 75 and added 10mcg of t3 take 5 in the morning and 5 at evening... I feel undermedicated even though I have overactive symptoms such as anxiety and Palps...
I believe it's the lowering of Levo that's effecting me and I think I need to bring it back to 100!??
I weened myself onto t3 3 week ago whilst lowering the Levo.
I can't take any more t3 as my endo has gave me a trial for 3 months and only told me to take 10 a day if I take any more I will run out before I can see her and get another prescription , and that's if she keeps me on it! !
Oh, dear ThyroidObsessed, what a journey you've found yourself on. Paul Robinson, who wrote Recovering with T3, makes some very essential observations.
1. Everyone has unique physiologic needs. What works for person A might not work for person B ... etc., and any one particular scheme of dose spacing and quantity could or could not work for you.
2. The only way you will learn what works for you is to pay close attention to when you are taking and how much, and record it, along with observations of how it makes you feel.
T3 has a half life of 24 hours, more or less, so any change will be felt in a day or so. You don't have to wait six weeks to see what your blood results are if you make small changes and notice the effects.
Many clinical trials have been conducted and they were just like what you are being told to do. The problem is, as Greygoose pointed out, you've obviously got a conversion problem. The levothyroxine is the problem. That little bit of T3 is statistically not likely to do anything for you at all. It could be you need the 10 mcg all in one dose early in the morning in order for it to make any kind of a microscopic change in how you feel. It could be you need 15 mcg all at once to feel a bit better. Or perhaps you need 5 mcg every 8 hours.
After a long period of taking my dose all in one shot around dawn, I did a trial of 5 mcg every 8 hours. The blood test needs to be done at between six and eight hours after taking T3, in order to measure it's effect with some accuracy. After I had been taking this regimen for a week (15 mcg per day at 8-hour intervals), my FT3 was in the 43rd percentile and my TSH was a bit high. I wasn't feeling fabulous, but I was doing ok.
If you have tablets enough for a three month trial, you could try taking more T3 and less levothyroxine. Any amount of levothyroxine makes me feel ill after a few days.
Werner & Ingbar's Thyroid, a medical textbook, devotes chapter 8 to Genomic and Non Genomic Actions of the Thyroid Hormones, T3 and T4, (abbreviated TH). It explains how the nucleus of each cell contains TH receptors and most of our biologic effects at cellular level are mediated by these TH receptors. Further, TH acts at nongenomic sites, such as plasma membrane, cytoplasm, and within our mitochondria.
The thyroid produces both T3 and T4. According to Chapter 7, Intracellular Pathways of Iodothyronine Metabolism, about 20% of each day's supply of T3 is produced by the thyroid, with the other 80% is produced by deiodination of T4. In healthy people, the DIO2 pathway is believed to contribute more to plasma T3 than does DIO1 action.
The chapter explains that presence of T3 hormone stimulates DIO1 expression, while T4 levels modulate DIO2 gene expression through local deactivation or activation of ubiquitination/deubiquitination processes. In skeletal muscles, the brain, pituitary, and brown fat, high T4 causes ubiquitin to attach to the DIO2 protein, degrading it, and reducing DIO2 activity. The reverse process occurs with low T4, permitting tissues that contain D2 to modulate T3 concentrations at the local level.
This finding seems to suggest that having too much T4 for your individual needs (not simply being within a laboratory reference range, which can be a meaningless statistical norm) will degrade your physiologic processes. This is how treatment can undermine the objective we're seeking.
When you find the right amount of T3 for your brain, you will know with certainty. Keep careful notes, for that magical point could slip by unnoticed. Too much hormone will feel the same as too little.
ThyroidObsessed, you are only at week 3 in your new dose, so I wouldn't worry. In my experience almost anything can happen in the first few days and weeks of a new dose.
I can feel overmedicated, undermedicated, a symptom can worsen or an old one return, I can feel on top of the world or really terrible, etc, etc.
I find around 3-4 weeks in to be the craziest time, when I often feel very strange.
Unless I get to the point where something is completely unbearable my goal is always to stick it out for 6 weeks. By that time things are mostly stable, although things can continue to settle even after that, and symptoms still change months later.
With dosing it is unfortunately a slow process. Even if this dose doesn't suit you, the best thing to do is wait it out, get good notes about your symptoms, and then have a blood test and /or adjust your dose again. You'll only be able to carry on adjusting with full knowledge if you can wait it out and find out how you do on this one.
So many people struggle to get T3 on NHS. So well done there. I'm on 75mcg T4 and Greek T3 as can't get NHS script. I'm taking 25mcg per day split into 12.5mcg X2 using a tablet splitter. When I was on T3 from NHS I was on 20 mcg split into 10mcg half hour before getting up in morning and an hour away from any coffee and second half taken 8 hours later. So sounds to me, depending on your blood results that your dose is not high enough. So go back to endo. I was on 150mcg originally like you and the Professor at Royal Devon & Exeter I saw, cut the T4 to 75mcg and put me on 20 mcg T3. You don't say what your FT4 was. Anyway keep going and you will know within a few days if the endo increases your dose to 20mcg if you feel better.
I'm sorry I just can't keep up with all your responses!!
I'd like to just say that when on 100mcg of Levo alone my ft4 was top of the range but TSH sometimes went up to 8!? Even with a high ft4!?? and ft3 stayed mid range...
After being ok for 10 years on levo alone and then suddenly 2 years ago having some kind of mental breakdown, and then the doctor revealing a top of range ft4 and TSH at 8!? I knew it wasn't just me developing depression or an anxiety condition I shrugged depression pills and anxiety meds and beta blockers for 2 years because knew it run deaper than that and it was my thyroid condition causing It!!
So after finally been given t3 from the NHS I was ecstatic!!... to feel worse by taking it is heart breaking...
I'm not suffering physically just mentally, my head feels like it's gonna explode! Head pressure and headaches and panic attacks are exhausting!!....
No I shrugged them, meaning I wouldn't take any of the meds that the gp offered as I knew it was my thyroid levels not being stable that was causing symptoms...
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