Just asking really. Wondering how long it took other people to find the right balance on T4/T3 combination therapy… 7 months and not there yet, despite taking more meds than ever…
I did a test this morning, so I guess we will see what this looks like in frees, but randomly 100 mcg T4 + 10 mcg T3 feels significantly worse than 100 mcg T4 alone, if you can believe it, given that fT3 was only 11% through range on 100 mcg T4 only! My guess is that the T3 has banjaxed my fT4, but we shall see.
I’m seriously considering throwing in the towel on T3 and moving to 125 T4 only, to be honest, but I won’t make a decision until I see the numbers… I can’t see how the endo is likely to prescribe yet more meds as, at a guess, my TSH must be low enough to cause him conniptions by now… we shall see, I guess…
I am beginning to worry that I am going to have to accept some level of brain fog forever. I guess there’s NDT, although one way or another, I doubt it woukd be for me, but I guess we don’t know until we try…
Ah well. Any hope you can offer or good news story you have would be lovely today!
Lotika xx
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Lotika
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I’m certainly no expert and I’ve had hypothyroidism since 2001. Well diagnosed since then, I’ve had symptoms since 1980. I’m currently on 100mcg synthroid and I take half grain of Armour in afternoon and feel pretty well. I took thyroid-s from 2012-2018 and felt wonderful but after that it was difficult to find. It seems batches vary in potency of all the various thyroid hormone, synthetic or natural so I figure we will always be searching for that perfect dose and feeling well!
I’m am glad that you are somewhere near optimal, by the sounds of it! I am beginning to suspect it will be a bit as you say… a long search, ok for a while, something changes, rinse, repeat… Still, I guess we get to understand four bodies a bit better as the years go by, so hopefully it gets a little easier…
Aw, thank you for saying so! I just like a good witter sometimes Someone mentioned vitamin levels below and now that I think of it, I’ve been off the supplements for a couple of weeks - I meant to test last week but life got in the way - and had knocked back on the vitamin d a little, for, er, summer(!?) so that could have something to do with things… I got those tested too, luckily… It’s such a knot!
I can only tell you what it was like for me. I was put on levothyroxine 21 years ago, after being diagnosed with Hashimoto´s,It took me many years to achieve optimal results. No doctor ever seemed to understand how important vitamin and mineral levels are for the treatment to work. They either didn´t order tests or didn´t know how to interpret them. For instance, one vit D result came back at 31, and <30 means deficit, but the doctor said it was "normal" (it should be at least 50).
Over the years, I have corrected all vitamin and mineral deficiencies with the help of this and other forums. I have learned that I need to take vitamin D all year round, not just during the winter months. I also take vit C, K, all vits B, zinc, and magnesium daily. I used to have low ferritin and iron levels which I corrected.
Once all deficiencies were corrected, levothyroxine started to work for me. But that took more than ten years, because for too long I trusted doctors to know what they were doing.
My current doctor wants a low TSH (0.05-0.3) in Hashi patients and that suits me better as that means taking more T4 than my previous doctors have been willing to prescribe. I currently take 175 mcg daily and my latest FT3 levels were 70% through range which shows good conversion (FT3 used to be 30% through range when I was vitamin and mineral deficient).
So, for me, taking enough levo for MY needs (and not what doctors THINK I should need), plus correcting numerous mineral and vitamin deficiencies made my treatment optimal. I am personally pleased about that as it´s difficult to find doctors to prescribe T3.
My own experiences make me wonder if some patients who add T3 are simply on too low a dose of levo for their needs, and/or have vitamin and mineral deficiencies.
Sounds like my experience with doctors and Levo. Does 175mcg put your T4 levels over range? I can't get my TSH under 1 even with over range T4 levels and T3 70-80%! I don't have any TPO antibodies but high TG antibodies.
No, they are right at the top of range (21; ref 12-22 pmol/l). On 100 mcg of levo, which my doctor at the time claimed was the highest dose anyone should take, my FT4 came back at 13…he said remaining symptoms were not thyroid-related…
13- You must have felt terrible! That would have put me in a coma. My FTs were always optimal with t4 around 25 and T3 70-80% but I still had lingering symptoms like always being cold, hoarse voice, no appetite, mood problems and after I went on Levo my motivation and energy started to subtly go down over 10 years. I think some of my tissues are still hypo which is why my TSH remains elevated. Most likely the reason I got an adenoma on my thyroid in the first place. Maybe that has something to do with the high TG antibodies. The adenoma was a hurthle cell adenoma which is a benign form of a rare hurthle cell cancer so I'm definitely concerned about keeping that away.
Can that be compared to thyroid cancer? It seems thyca patients are supposed to have a very low or even suppressed TSH to minimise the risk of recurrence. How much levo do you currently take (sorry if you´ve mentioned this before)?
There's little known or much research on hurthle cell adenomas because they happen in less than 5% of cases but from what I've read the benign adenomas usually don't come back. I have to assume that's because people are put on levo afterwards. I think because of high TG antibodies my thyroid was pumping out more thyroid hormone to keep up until it couldn't and an adenoma developed or perhaps TG antibodies caused the thyroid to swell. In 11 years I haven't had any growths. I weigh 47kg so I took 88mcg but recently switched to a different brand and take 88mcg on 5 days and 100mcg on 2 days to make up for the potency difference. Apologies, I feel like I've hijacked this post but maybe others have the same issues and experiences. Also, I agree about the vitamins and minerals and glad to hear that getting your levels optimal helped the Levo to do its job. That gives me some hope.
No, you haven’t hijacked! I have a benign non-functioning macro adenoma on my pituitary, so it is very interesting to me from that perspective. It was diagnosed long before the autoimmune thyroiditis - an incidentaloma! - and in my case, the TSH does move with dose changes. It went from 0.35 to 1.91 with the change from 100 mcg levo to 50 mcg and 10mcg T3, so I don’t think it is impacting anything. I tend to have high TPOAb with TgAB sometimes within normal range… As the adenoma seems to mind his own business, he’s staying put.
How lucky you are that it's not causing any problems. An ex boyfriend of mine was secreting high amounts of testosterone and a pituitary adenoma was suspected but he refused to let them check. He also had hypo.
Hi, I did post a similar question on another thread but have had no feedback yet so apologise if I've got the wrong place. Where can I find a reference to what percentages T4 and T3 should be?
I’m not sure I fully understand the question! If you mean what is the equivalence, then some say 25 mcg T4 is the same as 5 mcg T3, but others say 15 mcg T4 is about 5 mcg T3. Personally, it seems to me from my own dosages, that it is around 12 mcg T4 to 5 mcg T3, if you are lowering one to add another. As for optimal levels of fT4 to fT3 in blood test results… I think we are all really different! Personally I would like to have fT4 at 70% and fT3 around at least 40%. Let me know I’d I haven’t answered the Q!
Hi Lotika, I think I should have explained better. I have a T4 thats 22% in range (and still feeling awful) but my Endo is having none of it. I was wondering if there was say like a paper on Thyroid UK/ other that backs up the patient experiences of feeling better when T4 is in 80% range?
Thank you for this- I certainly think there would have been some mileage in them trying 125 mcg levo only with me first as fT4 was only 70% through range, with fT3 11%. But I didn’t know that at the time and so I didn’t ask for it - I’ve learned rather a lot in 7 months! The irony is that I felt pretty good on the day they finally tested fT3 to get that result, so I think it was often below 11%. But if anyone had asked (they didn’t) I would have said please just stabilise me as I am today. I was in a lot of pain then, but I didn’t realise it was thyroid related - the T3 has taken the edge off that and I’m no longer sat having coffee with friends whilst jumping about to stretch my back, etc - so it’s perhaps good that they didn’t ask, or I would have continued thinking that was just me in middle age!
My ferritin was pretty dire and I’ve managed to get it up by eating liver and black pudding but I suspect it still won’t be optimal yet… I had forgotten about the role of vitamins completely when I posted - my brain fog is absolutely horrific at the moment - but I did order a test with vitamins, so I shall see if there is more work to be done there… another factor to take into account…
I've been at the T4/T3 combo for 1.5 years now and off work for almost a year. I definitely don't feel great and I've chucked it several times even tried T3 only which wasn't for me. I tried NDT but when I got to 2 grains I felt overworked, hot, and lightheaded. That ratio wasn't working for me. I've tried to lower the T4 to "mid range" but it makes me feel weak and unmotivated. I've been working to get my T4 levels back up and only sticking with 5mcg of T3. Taking the T3 far away from my Levo has helped, usually around 2pm right before my 3-5pm slump. It does seem like taking T3 lowers the amount of T4 available so maybe that's why taking the T3 away from the T4 helps. You're certainly not alone in this battle.
I might try that, taking the Levo away from T3. I could take it at bedtime. But god knows when I could fit iron in then! I feel like I have to wait for the Levo to wear off before I wake up for the day. I've increased my T3 to 25mcg with 125 Levo this week. Taking T3 tanked my FT4 level drastically and has made me feel more hypo. Desperate to find some sort of improvement after 8 years of slowly sliding further and further into a useless, miserable life.
I've been having the same issue with adding T3 and my T4 is already low for me to start so it's not helping matters. I noticed that when I split the T3 and took the first dose with my morning Levo around 6am and then several hours later the second dose of T3 that I felt terrible. One day I waited until 2pm to take all of the T3 and it didn't affect me negatively the way it did in the morning. I know Levo is a storage hormone but it makes me wonder if the Levo and T3 could be split into equal doses several hours apart. I don't seem to have an issue taking T3 with a smaller dose of Levo and was doing that when on NDT. I've been hesitant to add more T3 before I can get my T4 up a little higher. I never realized how much the Levo affected my life and slowly over a ten year period lost my real self. I'm also having a difficult time fitting in my vitamins, minerals and iron.
I recently tried dropping Levo to 100 with the 20T3 a day in case that helped, less of the Levo. But I was so tired and half my hair fell out.
Then I tried adding more Levo taking it up to 150 a day with the 20T3 and by the end of the first week I felt more hypo again and that continued for the life of the experiment. Like the T3 was having no effect.
So I came back to 125 Levo and am trying an increase of T3. I don't feel any better. There was one day when I took just T3. I wanted my Levo levels to come back down after the 150 experiment. I took 10 T3 in the morning and 10 in the afternoon as normal and felt a lot more like myself that day.
On 125Levo and 20T3 my FT4 dropped to something like 36% of range. It's never been below 50% before! I have no idea how to hit the sweet spot. I've read all the books. I've tried T3 only in the past too. The only time I felt well, and only for a short period, was on Armour. I had some energy then.
Perhaps it's just not enough T3. On 20 mcg a day with the 125 Levo my FT3 was 48% of range. But surely that means that 25 T3 should be taking it over 50% finally. And no improvement. I do seriously wish I'd never started Levo.
It's like a cycle. The more T3 you add the less T4 seems to do its job. Personally, I need a certain amount of Levo to feel stable but I need some T3 to help my mood and keep my voice from being hoarse and feeling cold. I currently see a functional nurse practitioner who also has hypo and feel like I hit the lottery. She revealed to me that most of her patients take a combo and many of them take NDT with Levo successfully. She only took 10mcg T3 with her Levo but went down to 5mcg when she switched to liquid Levo. I was shocked one day when she said "oh 15mcg T3 really isn't that high." She prefers the 5mcg pills over the 25mcg. Finding the right combo has been frustrating. The only time I felt good on NDT was the first week I started because I had high levels of T4 already from the Levo but when I started with 1 grain I was getting that small amount of T3 . I slept and felt so good but as the T4 depleted it didn't last long. Then I had another good week on NDT when I was on 2 grains and I was sweating and feeling lightheaded so I reduced down to 1.5 grain and felt amazing for a week but again as the T4 depleted I was back to feeling awful. I seem to do well with a lower amount of T3 around 9-13mcg and a good amount of T4 but trying to get back there is the hard part. I can relate to your struggle and often wonder about what my life would be like without this disease and what normal feels like.
I moved the T3 further from the levo this morning as per your suggestion, which unfortunately puts it closer to my coffee, but I figure I’ll feel better if I absorb less of it anyway… what am I like?!
I really feel for you… since I started on combination therapy, I’ve not managed to get either frees over 50% through range, so our struggles sound pretty similar! I hear you in the reading as well…
I hate to say it - and I suppose it refers back to my original post - I just sorry we are the unlucky ones or something! Still, there’s always more combos to try… !
We may be caught in the trap set up by NHS in recent decades. We've been scared into thinking T3 is dangerous and that anything above 10mcg a day will cause havoc in our bodies. Yet that's clearly not the case for a lot of people.
I so appreciate you detailing your issues with T4 and T3! I was considering asking my doctor for some cytomel to add to my synthroid. I may still but not sure it doesn’t sound like it’s easy to figure out when to take it! I’ve had so many troubles finding good medicine and getting doctors to prescribe enough. My T4 and T3 have been below the bottom number pretty much bottom of the barrel for a couple of years now and I’ve felt pretty horrible. I finally found a doc to prescribe me synthroid at 100 mcg and a little Armour so I think I’m slowly getting better!
Lotika - I have been diagnosed 3.5 years and have been prescribed T3 for 2 years, and still not too close to anything optimal. It is so frustrating for slowly everything moves when our thyroids are involved.
One thing I would ask is whether you have had a GOOD going over - physical examination, bloods etc? Not all brain for relates to hypothyroidism. That element could be something else? Just saying.
I’m pretty confident that the on going symptoms are hypo related - and potentially my test may reveal sub-optimal vitamins - but living in the UK, no proper physical examinations, no!
That’s because it’s not just about the thyroid numbers.
For those of us who were undiagnosed for many years there accumulates many issues, and until those are also resolved, thyroid hormone replacement risks never working optimally, even if optimally dosed.
Yes, it’s true that I am expecting another sub optimal ferritin result, although I’ve certainly been working on that one enough that the hair has stopped falling out!
Lotika, I feel for you…. And everyone! The journeys detailed here?! It’s exhausting!
I admit I thought it t3 was going to be a magic pill and I was going to post to ask people how they know they’re optimal the others day. When do you know when to stop and what you are always going to have to deal with?? So I understand just what you mean. I think it’s JAmanda that has posted here today about possibility of trialing NDT. She’s been trying different combinations for 3 years now.
For me, it doesn’t seem to matter how much levo only, I only get to 31% t3. Maybe 1% more if I raise a lot so I’m sticking to 75mcg. Working on the minimum effective dose theory. I am currently raising t3 and have a few more weeks to go before I can take tests but I had a particularly good day last week 🤣 and have today decided to run female hormone tests to see if they’re screwing me around. I always have more pain etc before my period. Sometimes it goes sometimes it stays till the next period 🙄.
I hope you manage to find the way forward and feel more positive soon. You must have learnt so much on your path to wellness that I am sure you will choose the right next step. Thinking of you. x.
That is interesting - I think I would struggle to get to 31% T3 on a massive dose of levo too! We are all different, I guess, but I think 31% might be adequate for me at least as far as exercise is concerned… although joint pain is better closer to 43%. My other thought is that if the endo prescribes 125 T4 only, I can still experiment with T3 whilst pretending I’m behaving myself. Or even with NDT in the place of T3, randomly. I don’t know why that appeals but it does…
I had completely forgotten about vitamins when I posted yesterday - the brain fog is insanely bad at the moment - so I suspect that the test results for those might shed some light on things.
It’s weird but I do feel more positive since I posted… I know I’m not alone, for a start… and I’ve decided that I’m not going to throw in the towel until I’ve posted the results here, even if they look very towel-ditchy to me. Just to think it through with people who understand, really. And someone might have some ideas, even if I don’t! You’re right, I feel like I could write a blasted book with what I’ve learned over the last 6 months… just probably wouldn’t be terribly good or remotely interesting, largely because it would read as a big whinge with some science thrown in, ha ha!
Oh that made me chuckle. The book comments! I’m sure I put people to sleep when I start 🤣. They say something like ‘I’m so tired’ or ‘my skin is so dry’ and I’m off 😂😂😂. Obviously I’m only trying to help!!
I honestly think there is a danger of over thinking it all though. But since accepting my endo’s line of 75/20 but ‘carry on yourself, I have been buying from various sources so that I know I always have a reliable source I am so much more relaxed about it and I’m taking the more pragmatic approach currently. I still know I’m under medicated. I know my levo limit. I’ve raised my t3 to 30mcg and am waiting to see how I feel. My tsh is surpressed anyway. I’m thinking I may need 35mcg but only bloods will tell. I’m testing my hormones to see if there’s something there that maybe hindering things. I know I am improved. I am doing more but when feeling upbeat, I want to feel even better. I want to know if we can feel great (and what that actually feels like!) I don’t want even a whiff of being symptomatic anymore!! 🙏🏻🙏🏻🙏🏻
I had considered trying NDT but I’m only 5 months or so in and I’d really rather have synthetic. I don’t want the extra guilt from trying natural! But that’s just me.
It’s so great to know you’re not alone and that people know what you’re going through, been there and improved their health. I am really wishing your results give you something that spurs you on even if you’re not feeling it and im looking forward to seeing what they are!!
😞 not good. I can only talk from my experience. Levo only for 10yrs. Sometimes we’ll sometimes not. This was the rise and fall of Hashimotos. But too many years of not being well. When I finally realised that I needed to add T3, my history of results showed that my T3 was usually around 0% through range. I got my prescription and immediately took 10mcg, then in the being I took 5mcg. The effect for me was instantaneous. My mental health was ecstatic and the next day my elevated mood and physical well being was like nothing I’d felt before. After 6wks I increased to 20mcg because a couple of symptoms remained.
I had been asked to reduce my Levo and after a few months I upped it again by 25mcg. So overall, I reduced my Levo from 150 - 125mcg (I had tried up to 200mcg before T3 but no help, my FT3 just wouldn’t rise and the high Levo left me feeling hyper which I know is weird as my FT3 only rose to around 5/10% through range) and added 20mcg T3, not slowly, I flooded my system. I had instant energy, dreamt all night (I never went into dream sleep, only ever zombie sleep) and my life finally began. It’s been over 2yrs now and life is good 🤗
I know everyone worries about flooding the system but I’m really only sure we know enough to say that it’s better to take it slow.
For you I’d say add another 10mcg and see how it goes. Unless you have serious health concerns what’s the worst that can happen?
Thank you for sharing this NWA6 - you’ve bottled some hope and sent it my way! I agree, I don’t think there is any reason why I couldn’t conceivably try a higher dose of T3… except the more T3 I add, the lower fT4 goes… Do you take the 20 all at once in the morning or split it through the day? When you think on it, though, the people on NDT only have low fT4, so maybe if I ever had enough T3, the lower fT4 wouldn’t matter…
Your FT4 reducing is going to happen as you add T3, that’s not something you should be basing your dosage on. I keep my FT4 balanced at around 60/70% through range but some have it lower than that. Whilst I don’t know conclusively why I feel better with that range of FT4, I do know that I feel better with added Levo rather than more T3.
I have experimented over the last 2yrs and 25mcg of T3 and lower FT4 makes me feel sweaty and anxious. I need Levo to stave off feelings of being highly strung.
I take 10mcg morning and 10mcg Evening. I take my Levo with the T3 in the evening.
I tried spilitting 3 ways, it doesn’t make a difference. I could actually take my T3 all at once, it doesn’t change how I feel. I only ‘feel’ T3 if I take too much, otherwise I just feel like I don’t have Hashi’s.
Thank you! I’m clinging to the idea that I need fT4 at around 70%, based on the fact that I had more energy with it at that level than I have at any time since it has been under that level, no matter where fT3 is. For me, the main benefit of T3 is a reduction in joint and muscle pain. The least joint pain I had was with fT3 at around 43%, so I find myself wanting fT4 at 70% and fT3 around 40% based on those two experiences. If only I could wave a wand and try the magic combination which would give that! But I hear your point that we shouldn’t be too fixed with our ideas / rule out higher fT3. I’ve never had it over 50% and maybe having it at 70% or something would be amazing!
Interesting train of thought. I think you might need to rethink. You’re replacing thyroid hormones so your body is naturally going to make less, so it need to rely on what you supplement. It will be the conversion to FT3 that’ll help joints (aswell as optimal Vits and minerals). Yes, I too need Levo for some unknown reason, otherwise I’d bin it off but, just increase your T3, you can play with your Levo after that.
I was on increasing doses (up to 250mcg/day) of T4 only for the first 7 years after finally getting a diagnosis of Hashimoto’s and felt dreadful!
Then, my old endo, sadly now retired, decided to give me a trial of T3. He suggested I drop my T4 down to 50mcg and introduce 10mcg 3x daily ( a total of 30mcg/day). It was as though my brain had been switched back on and I could suddenly function again. He continued to monitor and work with me while I played around with the dosages until I felt optimal on just 25mcg T4 and 45mcg T3 (still in 3 doses) daily. I even managed to complete a 2:1 BA (Hons) degree in History and Creative Writing at university and had a blast for 3 years!
Since he retired I have had minimal contact with the endos who came after him only to ensure I get my yearly prescription renewed for the T3. My DEXA scans are fine and I monitor my ecg on my Apple watch daily and it has never shown - nor have I ever felt- any signs of atrial fibrillation.
I monitor my own blood tests with Medichecks and, having now finally settled on 37.5mcg T4 plus 25mcg T3 twice daily (total 50mcg) I FEEL fine! Thankfully, my GP has acknowledged I probably know more about my condition than she does ( thanks mainly to this forum which I joined in 2004!)and is quite happy to continue prescribing the T3 for me. It’s taken time and lots of tweaking but I’m in a place now where I am totally in control of my life again and it feels good!
Thank you for the good news! Am I right in thinking that your frees would like a bit like those for someone on NDT? It sounds like quite an NDT style combination of T4 and T 3 when I think about it?
My frees give my endo and GP the collywobbles… My TSH is unreadable (low) my FT4 was 5.1 (range 12-22) but my FT3 is right up there just over range at 7.1 (range 3.1-6.8)which is where I need it to be to feel optimal.
I still have issues that could be better, but they would be much worse if I fell into the advice some of the subsequent endos have tried to get me to follow…
Everyone is an individual and none of us fit in an exact box… the best thing to do is play around with the doses until YOU feel happy. Remember that each tweak needs around 6 weeks to take effect and you would need to test to monitor it.
This tells me to be brave. Here am I worrying that on 125mcg Levo and 25 (just increased this week) T3 I'm close to max T3 dosing. Obviously I'm not. I feel no better than without the T3 at this stage. I'm stiff as a board, joints hurt and my moods are low. No drive.
Sadly I already live with permanent atrial fibrillation, in one way it makes it easier as they can't threaten me with it. But I do have a high heart rate from it and so increasing T3 can make me feel uncomfortable. And it freaks doctors out. I just tried increasing Levo to 150 again and again I can't cope with it. It just makes me feel more hypo than ever. I've never been able to cope with it over 125.
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Someone mentioned vitamin levels below and now that I think of it, I’ve been off the supplements for a couple of weeks - I meant to test last week but life got in the way - and had knocked back on the vitamin d a little, for, er, summer(!?) so that could have something to do with things… I got those tested too, luckily… It’s such a knot! 
When does it get better?
Does anyone else get this feeling?
Does medication need to be reduced due to age?
Does anyone adjust their own hypothyroid medication?
