I haven’t written on here for a while as I’ve been feeling quite well so hope you don’t mind me coming back to you now.
Although I feel good on my current dose of thyroxine and definitely don’t feel I’m taking too much, my endocrinologist wants to lower my thyroxine as my TSH is suppressed again.
I couldn’t care about my TSH as my free T4 levels are always around the middle of the normal range and this time they didn’t even test my free T3 (which is usually the lower end of the normal range). So I emailed him to tell him this and asked that if my thyroxine is lowered, could I try T3 medication.
After years of asking and being told no, he’s told me I can have a trial of Liothyronine. I think I’m in shock! Maybe the threat of purchasing my own T3 and self-medicating worked!
So my question really is for those of you who have changed, how long did it take you to get the dose right and how much different do you feel on it? What difference can you feel between being on thyroxine and being on Liothyronine?
My endo has warned me that if I do switch to Liothyronine that my TSH must be kept within the normal range and that I may feel unwell in this case. So I’m a bit nervous now but feel like I want to try something different after all these years.
My latest blood test results are as follows:
TSH <0.01 (0.27-4.20)
Free T4 17.7 (11-25 pmol/l)
My results last summer were:
TSH 0.01 (0.27-4.20)
free T4 18.8 (11-25 pmol/l)
Free T3 3.9 (3.1-6.8 pmol/l)
My cortisol levels and vitamins are all within normal range. I do take a good multivitamin however, together with magnesium and vitamin D. My iron is usually on the low side so I take ferrous fumarate which I get on prescription.
Ideally I would like my TSH to not be suppressed (mainly to get doctors off my back!) whilst having a good level of T4 and T3. I’m worried that if I stay on thyroxine and lower my dose to raise my TSH, my T3 will fall too low. So I’m hoping that Liothyronine could help with this but if anyone has any advice or any information I would be really grateful.
thanks in advance
Cath
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Cathrd
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But your TSH is suppressed anyway! What difference does it make why it's suppressed. And, if it can be suppressed with those results I cannot imagine that it will not be suppressed when taking T3.
Besides, if it's been suppressed for a long time, it may never rise again. The HPT axis will have become downgraded. And your pituitary has decided that you don't need it.
The man is a charlatan, and just making excuses in advance for taking it away from you, once given, or not giving you enough to make you well. Beware. This is an endo-trap!
Hi GreyGoose, thank you for your reply which is very much appreciated. Yes my TSH has been suppressed for years - apparently due to me taking too much thyroxine! The only time it hasn’t been suppressed was last year when it was 0.01 but my T3 was really low.
I feel like I can’t function unless I take the dose I’m on now (150mg). I’ve lived with hypothyroidism for so long that I know my body and when I take too much or too little. So I’m not bothered by my TSH result, I’m just fed up of doctors only looking at that result and nothing else and then telling me I need to lower my dose.
I wasn’t aware until today that T3 medication can lower TSH even more than thyroxine so that’s interesting and I’m now thinking twice about switching and will probably stay on my current dose of thyroxine. I’m an ideal world I would like my TSH to be low but not suppressed and my T3 to be higher. I guess I won’t get that though.
But it really doesn't matter if your TSH is suppressed. It's suppressed because you don't need it anymore, not because your dose is too high. It might be too high, but that's a different story, and the TSH cannot tell you.
In and ideal world, all our thyroids and pituitaries would work perfectly (and there'd be no need for endos! lol). But the way we were built, or evolved, the TSH was designed to keep people euthyroid (normal) meaning it would be around 1, with the Frees around 50% through the range. But when your thyroid or your pituitary goes haywire, everything changes, the way our bodies work changes and euthyroid is no-longer good enough for us. We need our Frees higher than that - probably around 75% through the range, but can be higher. Therefore the TSH goes lower until the pituitary decides to stop making it because we don't need it anymore, we have enough thyroid hormone in the blood. The pituitary doesn't know you're hypo, so its opinion really doesn't count.
TSH only has two jobs:
a) it stimulates the thyroid to make more hormone
b) it stimulates the deiodinase - the proteins that remove one atom to iodine from a molecule of thyroid hormone, what we call conversion - to go into action. Although some people manage to convert without any TSH.
That's all it does. It has no connection to bones or hearts. So, if you're taking T4 and T3 at sufficient levels to keep you well, what do you need TSH for? You thyroid isn't working, anyway.
Unfortunately, doctors don't learn any of that in med school. All that information is out there, for anyone to access, but if a doctor doesn't learn it in med school, it doesn't exist.
Which brand of multi-vit ? Not routinely suggested here and certainly not by greygoose !! Low levels of Iron - Folate - VitD - B12 - could well be affecting poor conversion of T4 into T3 🌻
I do take a good multivitamin however, together with magnesium and vitamin D.
OK, so Cathrd there's no such thing as a 'good multivitamin'. They all fail in some way or other. Most of them fail in most ways, no matter how much you pay for them. But, without knowing which one it is, I cannot comment on its shortcomings. But, basically, it's just money down the drain.
Are you taking vit K2 with your vit D?
Levels just being 'in-range' is no guarantee that they aren't suboptimal. The ranges are too wide.
Thank you both for your reply and questions on this! The multivitamin I take is a Boots own branch for hair, skin and nails. It may not sound that great but when I look at what’s in the tablets and the levels, in comparison to other brands I find them superior. My hair went so thin a few years ago and these have helped which is why I mainly take them.
Vitamin D - I take the vitabiotics extra strength 2000IU but I’ve just checked and it doesn’t look like there’s k2 in them so that’s something I’ll check out - thank you.
My latest B12 result was 813 ng/L (180-900 ng/L)
Folate was 13.7 ug/L (>3.000ug/L)
Serum Ferritin was 69 ug/L (15-300)
So my iron is on the low side and it’s interesting you say that low iron can be a cause of poor T4 to T3 conversion as I didn’t realise this! Definitely something I need to look into.
So thank you again for your replies, you’ve been a great help!
It contains iron so that will block absorption of the vitamins. Iron should be taken at least two hours away from everything - four hours away from thyroid hormones - except vit C, which is essential for absorption.
And it contains iodine which you should abolutely not be taking - unless you have been tested and found to be deficient. It contains 150 mcg, plus you'll be getting approximately 100 mcg from your daily levo, plus what you get from your food. So you are already grossly over-dosed on iodine. The RDV is 150 mcg. And over-dosing on iodine is really not a good idea.
There are other things wrong with this multi, but I'll stop there - it's already bad enough.
The majority of people once adding T3 will have a lowish / below range TSH. even if they reduce Levo dose significantly, because T3 has a relatively larger lowering effect on TSH than T4 does.
As with any rule there are exceptions ... there is one person on here who manages to keep TSH in range (just) while taking T3 and levo. McPammy and she feels very well. She finely tunes doses of levo/ T3 to keep TSH in range ... however it must be noted that before adding T3 she had a relatively higher TSH (compared to the rest of us) while on decent doses of levo.
So that probably explains why she manages to keep TSH in range while taking T3. (if you click on her name it will take you to her profile page so you can read her posts and previous replies)
There are some studies that were done using T3 where they managed to keep the TSH in range as part of the study . but we don't know how well those patients felt , or how many of them felt horribly under dosed.
So ,it is possible for some people to fine tune a dose of levo + T3 to find doses that allow them to feel well and keep TSH level just in range .... but that probably won't apply to most of us .
and since your TSH is already that low with moderate T4 levels and lowish T3 levels ... it is pretty unlikely that you will be able to keep your TSH in range once you add any T3 unless you reduce doses of levo / T3 to levels that leave you feeling hypo.
which isn't to say don't accept the offer of a trial if you want to, just don't expect your TSH to rise., so you'll probably still be having the low TSH argument with every doctor you come across... more so in fact , because most of them are frightened by the idea of T3 .
Thank you so much for your reply, I really appreciate it. I had no idea until reading this that T3 has a larger lowering effect on TSH than T4, so that changes a lot in my mind. I’m grateful for you taking the time to explain this to me.
In an ideal world I’d like my TSH to be within range but my T4 and T3 levels to be on the higher side of the ‘normal range’ but I guess this isn’t going to happen and T3 medication isn’t the answer.
My endocrinologist has already said I’d need to increase my TSH if I try the Liothyronine and I really don’t want my hypo symptoms to be any worse than they are now. I still suffer with fatigue, find it impossible to lose weight, have brain fog, deep ridges in my nails etc but I feel much better in my current dose than I used to. I only need to nap a few times a week now instead of every day.
I think I am going to fight to try and stay on my current dose of thyroxine rather than mess about with changing medication. I’ve always had it in my head that T3 would be better for me but if I’d still have the same arguments regarding my TSH then maybe it’s better the devil you know.
Thank you again, I really do appreciate your reply!
info in these two posts may be useful in your decision making. and in discussions with endo:
This one has the info about how T3 has a greater lowering effect than T4 does, see the first reply to the post (and note it continues much further down the list of replies) which will be useful if you decide you want to try T3.
and this next one has info showing that on levo alone, TSH between 0.04 and 0.4 had no greater risks that TSH 'in range' does . which may come in useful if you want to argue to stay on current dose of levo
I feel that I can keep my TSH in range, just, and importantly feel very well due to my T4 converting very poorly at only 8% so t3 starts from a low point whereas others start from a higher point. My T3 is now 83% with 5mcg twice a day. That’s with taking a dose before a blood draw. I keep my T4 low at around 25% but that is prior to a dose. After a dose it jumps to 45%. My TSH was high but in range on T4 levo only. But if I’d had an increase in dose it would suppress. I like to reflect a healthy persons blood results and have managed to do so. My latest TSH was 1.09 (0.35-5.50) a couple of weeks ago. I have no issues with t3 being prescribed as the Drs are very happy I’m in range. More importantly I’m fully energised and happy.
My endo has warned me that if I do switch to Liothyronine that my TSH must be kept within the normal range and that I may feel unwell in this case.
He’s setting you up to fail. He wants to “prove” liothyronine won’t work for you because keeping TSH in normal range on liothyronine isn’t a realistic aim. In fact, it’s likely that having a TSH in “normal” range will mean that you’re actually undermedicated. And therefore, you’ll feel unwell.
Your TSH is already suppressed and your endo making ‘in range’ TSH a condition of your being able to have T3 prescribed is playing a very dirty game! Your TSH has already been suppressed for some time and adding T3 into the mix will not raise it under any circumstances, but it could make you feel a whole lot better and who wouldn’t want that?
You have nothing to lose by accepting his offer of a trial and everything to gain. My life was turned around by an endo willing to let me try Liothyronine 13 years ago and, in spite of having an undetectable TSH and a very low FT4 (I only take 25mcg/day) but an FT3 at the top of the range, I feel fine and am able to function properly. Liothyronine gave me my life back after 7 years of failing miserably on ever increasing doses of levothyroxine and I would recommend you at least try it.
And even if he does take it away because of your TSH refusing to budge, if it works and you do feel better then at least you’ll know to go the self-sourcing route and take control of your own health.
My endo just agreed to a 6 month trial of adding in 5mcg daily of T3. I've only been taking it 2 weeks so I know it's very early days, but already I've noticed changes. I now have stamina, something I've lacked for the last 3 years. I'm not needing to stop or slow down as much through the day. I got on the treadmill and went for 10 minutes without any leg pains, nor needing to stop, hardly getting out of breath. I was stunned. Exercise has been such a struggle. My digestion is now not so sluggish as well. Im hoping things continue in this direction!
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