I saw the NHS endo this week, they said that if I hadn't seen any impact from taking T3 by now it probably isn't going to do anything towards relieving my symptoms (I have been on a trial of Thybon Henning T3 since January, initially 5mcg daily but since March 10 mcg daily). Are they right? I literally haven't noticed any difference since starting it, except for when my private endo dropped my dose of levo (previously 100mcg, since March 75mcg) I felt a little less stable for a bit.
I had blood tests done in May and the private endo said that as my results were 'in range' they would not further alter my dose, I asked if I could expect to see any change in symptoms if I did not alter my dose further but they did not reply (despite me asking several times).
The NHS endo did say that for someone of my height/weight/whatever I am underdosed, and should be on around 137mcg levo according to the standard ratio. I have never been on more than 100mcg, in fact one GP I saw wanted to drop it because (surprise) my TSH was suppressed. Obviously I argued very strongly against and they did not pursue it.
The NHs endo has suggested I stop the trial of T3 but raise my dose of T4 to initially 125mcg but potentially 150mcg if needed. I am happy to go along with this I think, as I would have preferred to try this before trying T3 but it was never available to me previously.
Can I ask what you think - I don't know enough to know whether the NHS endo is right about the trial of T3? Would I have seen some impact even if I was underdosed on T3?
My latest test results:
1/8/22
TSH 0.45 (0.27-4.2)
FT4 12.1 (12-22)
FT3 4.9 (3.1-6.😎
19/5/22
TSH 0.31
FT4 13.2
FT3 5.24
23/3/22 (T3 dose increased/levo decreased following these results)
TSH 0.06
FT4 15.7
FT3 5
And as I started T3 (Jan) they were
TSH 0.81
FT4 18
FT3 4.5
Many thanks in advance, as always, for your advice, generosity and care
M x
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malohant
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You look to be under-medicated. Your FT3 is still too low, so not surprising you don't feel any benefit. You need another increase in T3. Plus your FT4 is very low, and that might not suit you, so good job your endo has increase that again - he shouldn't have decreased it in the first place! There is, of course, a chance that just by increasing the levo you might increase the FT3 a little depends how much conversion you are capable of.
looks to me like they reduced your levo unnecessarily , your fT4 is now far too low. a T3 trial isn't going to make you feel any improvements if they deliberately mess up your fT4 level in the process of trying T3.
That's not a fair 'trial' of T3 at all ... it's a fit up.
They don't really want people on it, it's expensive and controversial, but the guidelines say they have to give you a trial if you qualify ....so they do ... but if they can get you to agree the trial didn't work and come of it voluntarily then they will be very pleased with themselves .and they never have to offer it to you again.
Rather than stop the T3 trial it would make much more sense to increase the levo dose a bit while still taking the T3 wouldn't it ? we can all see this from looking at your low fT4 result.
If they are not suggesting this when it's so blatantly obvious that your abysmally low fT4 level is quite likely to be the problem , rather than 'T3 not working for you' .... then you really have to ask yourself what their motivation is.
Do they genuinely think you'll be better on Levo only , or are they being a bit too keen to tick the box saying 'T3 trail ~ failed' .
The reason they reduced Levo dose is they are trying desperately to keep your TSH in range, but that is not always possible , fT4 and fT3 levels are equally important (more so, in fact )... totally ignoring your very low fT4 level and suggesting that no more improvement possible on your trial of T3 shows one of two things@
either a) ....... they don't know what they are doing and they really do believe TSH is the most important result ... or b)...... they do know exactly what they are doing which is to 'encourage' you back to levo only without giving T3 a fair trial.
1/8/22
TSH 0.45 (0.27-4.2)
FT4 12.1 (12-22)
FT3 4.9 (3.1-6.8
19/5/22
TSH 0.31
FT4 13.2
FT3 5.24
And as for the NHS guy saying 'oh you can have 125mcg or 150mcg Levo if needed' ... what EXACTLY does 'if needed' mean to him ?
Does it really mean 'you can have it if you feel better on it' ... or does it mean 'you can have it as long as your TSH stays in range, but if it goes below range you don't need it and you can't have it ?
If it were me i'd not be keen to let go of a hard won T3 prescription this easily.
Tattybogle I always have great respect for all that you contribute. This is yet another potentially scary prospect you outline. I was only looking at this scenario for myself this morning and laughing my head off at helvella’s explanation of how to get that balance of T4 and T3 and pennyannies replies. I am thinking of the level of ignorance of the medics but this idea that they are very happy to scupper trials of T3 is truly - - - - scary.
That shows just as much knowledge on the GP's part as the endo's who told me that T3 has no function. And to think that those are the people we are supposed to put our trust in. Very disturbing. Thank goodness for places like this to share knowledge with those who seek it. So glad I found it.
Just to clarify: I started T3 in January through a private endocrinologist, who was initially supportive but now feels like they're keeping me at arms length, only responding to my questions as and when they want to (and usually not answering the questions I really want answers to). They have suggested they would like to transfer responsibility for my care to the NHS endocrinologist. I am getting frustrated at being told by the private endo that he won't change anything about my treatment as my results are 'where he'd like them to be' but I have all the same symptoms as before - it feels very much like where I was with the GP before seeing the private endo. I have been considering trying to find a new private endocrinologist.
I asked for the NHS endo appointment 6 months (in fact a year, but was refused initially) before seeing the private endo. The NHS endo I saw is apparently well known for being anti T3, but I didn't get that impression from him - my local endocrinology dept has a reputation for giving out up to 10mcg T3, but no more. The endo said that they would have potentially given me a trial of 10 mcg T3 but as I was already on that and seeing no benefit they would recommend stopping it. (The real joke here is that they recommend non-medical treatment such as physical activity, and when I asked for more information about that they said that as I work for a football club I probably know more than them.)
It sounds like I need to see my private endo again and push for progress, and if not find a new private endo. What I perhaps ought to do in the meantime is probably to keep taking the 10mcg T3 and increase to 100 then 125 levo over a few months - am I being stupid if I do that without being told to by either endo?
I totally agree with greygoose and tattybogle . I think your private Endo has taken umbrage because you’re also seeing an NHS Endo who also seems miffed because you went private first. Neither of these two are doing you any favours. If it was me, I would continue with your T3 dose and increase your Levo back up to 100 mcg, test in 6/8 weeks on that dose with MMH to see how that goes (and how you feel). Your current FT4 and FT3 are too low. No wonder you don’t feel well.
only responding to my questions as and when they want to (and usually not answering the questions I really want answers to
I don't suppose they have the answers. None of them know much about thyroid or the treatment of hypo. They are totally out of their depth with T3, they know it, and they try to avoid it by any means possible. And that's why they ignore your questions. Believe me, if they knew what they were doing they'd be only to eager to show off their knowledge to show what clever boys and girls they are!
I am getting frustrated at being told by the private endo that he won't change anything about my treatment as my results are 'where he'd like them to be'
Well, I very much doubt that's where he'd like them to be if they were his results! You cannot learn how to treat hypo from a text book. You have to learn by experience and by listening to the patient. The patient is the real expert, because he's living with it all day, every day. Just going to med school can never give you that sort of expertise.
I take 0ne daily dose of 20 mcg T3. I have no clinical symptoms and feel well. I used to take 25mcg once daily but 20mcg gives the same effect as in UK they only do 20mcg.
Since your FT4 has drifted down almost to the bottom of range, it appears your levo is under-dosed. But your FT3 is well within range. Have you considered what your levo dose should be, based on your weight? The "full replacement" dose of levo is approximately 1.5-1.7mcg/kg body weight. Multiply 1.7 times your weight in kg and increase your dose if you are below the full replacement dose. I wouldn't change your T3 dose, unless you increase levo and start feeling jittery within 5 weeks after increase.
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