hey there - my endo started me on T3 on the 6th march off the back of my December bloods:
TSH 3.48
Free T4 17.8
T3 3.5
In the interim I got my February bloods back after I started taking the T3:
TSH: 0.87 (0.35 - 4.94 mIU/L
T4: 16.5 (9.0 - 19.1 pmol/L
T3: 3.8 ( 2.4 - 6.0 pmol/L
After him advising me start on 10mcg in the morning..I have cut that down to 2.5mcg morning and afternoon. I’m waiting to hear back from him in next steps.
Last night and today I’ve felt a bit sick out and had a fluttering heart a tiny bit..but I’m a bit work stressed so hard to tell if it’s just that.
My naturopath has just worried me and said that perhaps I should t have started the T3 as my TSH was low and could end up dangerously suppressing it, by which point she said that T3 meds won’t be an option?
I’m now worrying slightly and would love some insight if I’m ok still medicating with T3 as I clearly still have conversion issues. I’m about to go away with work and I’m worried I may get worse. I’ve been ok, apart from yesterday and today and a bit of lethargy but that could be stress. ???
many insight would be welcome
Written by
Needlehaystax
To view profiles and participate in discussions please or .
Thanks. I’ve been taking 2.5mcg am and pm since the 10th March. I know lowering of TSH is normal but is it possible to go hyper if I started at a TSH of 0.87? Should he have started me in t3 if my labs were that low? My worry is he was going off older bloods from December and in the mean time my Feb bloods came back with much lower TSH but still had bad conversion ratios.
I don’t think I have ever taken in the ‘low iron/ferritin lowers TSH’ info….can you point me to any research/ paper? I find it increasingly difficult to get ferritin out of 50s level despite years of black pudding , ferrous fumarate now heme etc etc and have TSH in 0.02 range that frightens all medics despite frees in 50%!
My naturopath has just worried me and said that perhaps I should t have started the T3 as my TSH was low and could end up dangerously suppressing it, by which point she said that T3 meds won’t be an option?
The problem we all have is that doctors think that people with a low or suppressed TSH must have extremely high levels of thyroid hormones, no matter whether they are hypothyroid or hyperthyroid.
People who are hyperthyroid have thyroids that are capable of producing lots of thyroid hormones. But people who are hypothyroid do not.
So, if someone is hyperthyroid and has a TSH of 0.001 their levels of Free T4 and Free T3 could well be astronomically high.
But if someone is hypothyroid and has a TSH of 0.001 their levels of Free T4 and Free T3 might be high in range or only very slightly over-range.
This is why nobody should be using TSH to monitor the thyroid . The active thyroid hormone is Free T3, not TSH. And TSH is not from the thyroid anyway - it is produced by the pituitary.
TSH is useful when a patient has never been treated for a thyroid disease and in that scenario TSH is useful for initial diagnosis. But after that, it isn't very useful to anyone.
Please bear in mind that I'm not a doctor, I'm a hypothyroid patient.
How can a hyperthyroid patient have a TSH of 0.001?
They could have Graves Disease, they could have nodules in the thyroid that produce thyroid hormone, they could be being treated with too low a level of thyroid hormone suppressing drugs, or they were born with a large thyroid.
How can a hypothyroid patient have a TSH of 0.001?
They could have Hashimoto's Thyroiditis/Autoimmune Thyroid Disease that is temporarily running rampant, they could be over-treated with Levo and/or T3 and/or NDT, or they might have a pituitary that is incapable of producing sufficient TSH for the patient's needs so the thyroid is not adequately stimulated, or they were born with a small thyroid.
I'm sure my lists of reasons for a TSH of 0.001 are missing some possibilities.
Is that safe and acceptable to have a TSH at 0.001? I’ve had endo’s wince at me being 0.13 before but I understand that perhaps not all endo’s understand?
It's safe but not acceptable to the medical community. We patients couldn't care less!
The TSH has only two jobs;
- it stimulates the thyroid to make more hormone when levels are low
- it stimulates the deiodinase that convert T4 to T3.
If you are on thyroid hormone replacement, you do not need it for the first. And whilst you might become a poor converter with a low TSH, it's a choice between two evils: be under-medicated on T4 and low T3. Or, have low T4 and low T3. If you're taking T3 as well as levo, you don't need the TSH for conversion, either..
When the pituitary senses that you don't need TSH any more - or sometimes even if you do - it will stop producing it. Why waste energy producing something you do not need? I think we can therefore conclude that TSH has nothing to do with hearts or bones. If you still needed it for those reasons, the pituitary would carry on making it.
By the way, it's not a low TSH that makes you hyper. The TSH just follows the thyroid hormone levels, and the problem - one of them - with TSH is that you can't get a reading below zero.
Being hyper is having a very, very high FT3, well over-range, long term. And very, very high FT4, well over-range, long term. And if both of those are very, very high, the TSH is obviously going to be suppressed. And I just don't know why doctors can't get their heads around that. It's not rocket science!
Beautifully stated as usual Greygoose! One GP told me in true telling off style that the TSH IS what they are taught to go by and he doesn't care what my Ft3 & Ft4 levels are if the TSH is suppressed I am over replaced. I was told not to speak but listen. I did as told. He told me until your TSH is back in range we will not prescribe you any thyroid medications but once it is we will do shared care (am under nhs endo who didnt sgree with said GP). Still wasnt allowed to speak. Sometimes it's best just to walk away.... I was listening. He wasn't prepared to do so.
What an awful man! He needs reminding that your care should be a joint decision. He's not there to dictate to you, he's there to advise you, and there's no law that says you have to take his advice!
I didn't take his "advice" Greygoose never fear. I figured the top endo in the country, that my local nhs endo dept referred me to, knows better than his 8yrs as a GP.
The matter has now become academic in any case since my local ICB didn't listen to the said endos application for reinstatement of my funding either and turned it down. Am back to the wild west which seems infinitely safer these days then the nhs.
I just dont see why we should be paying GPs handsome salaries when they behave so badly and are sooo ignorant. I resent my tax money being spent on them. It's a waste of money. Are you listening Wez?
Never fear he's black listed on my local GP surgery of gps I won't see.
I'm probably also black listed by the GP surgery as a trouble maker etc....but am beyond caring ....cos I won't tolerate an appalling attitude like that or poor treatment.
I've been tempted to de register tbh....cut off their funds as they're paid per patient. No.patients no funds no gp surgery. But that's probably like cutting my nose off to spite my face and most of the staff have been pleasant and do try. Never mind they'd have to be a mass exodus to have any impact! 🤣😂
My TSH is low it often says on blood results that it’s undetectable. I’m doing generally well. I take T3 so with the help of this community I’ve learned that this is going to happen and that other stuff such as iron levels and vitamin D, going gluten free etc are more important factors for optimal health.
I had a low tsh when I started T3, when I was still ill with hypothyroid symptoms and my T3 level was low. Your T3 level is low. T3 is good for the heart. However unlike T4 which is a storage hormone, t3 is an active hormone, so it will be a bit of a shock to the system, which leads to most people getting symptoms like palpitations, panic feelings, etc in the first 1-2 weeks. Building up the dose gradually over the first 2 weeks reduces these symptoms and then they should hopefully go away. I had Atrial Fibrillation symptoms with Levothyroxine and these went away with T3. I only became well when my T3 was close to the top of the range & my tsh is slightly below range but my thyroid doc says this is ok as long as my T4 and T3 are within range.
I need high dose T3-only and my TSH ( the last time it was tested, ages ago) was undetectable.....because I don't need it to stimulate my thyroid to make more hormone. There is enough in my system from the replacement T3
T3 naturally lowers both TSH and FT4
T3 is the active thyroid hormone and f.or most people, so long as it remains in range you will not be overmedicated.
A low cohort of patients like me, with a form of thyroid hormone resistance need higher does of T3
The heart needs a great deal of T3....AF is a symptom of low
My naturopath has just worried me and said that perhaps I should t have started the T3 as my TSH was low and could end up dangerously suppressing it, by which point she said that T3 meds won’t be an option?
That is nonsense!
Forget TSH.....FT3 followed by FT4 are the important markers
So on 02/25 these were your labs
FT4:16.5 (9.0 - 19.1 pmol/L).....74.26% through the ref range
FT3: 3.8 ( 2.4 - 6.0 pmol/L).....38.89% ditto
We aim to have both Frees roughly approaching 75%....FT3 far too low!
Your T4 to T3 conversion is poor ( high FT4/low FT3) so yes you need T3
Your FT3 is very low.... so you need more T3 added slowly by 2,5mcg every 2 weeks until symptoms resolve
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply
DD I couldn't Agree with you more. It was a Very Difficult Lesson for me to learn. When Dr's tell you that Levo is the magic pill take one everyday and that's it. I can't say it enough how very Wrong They Are. It's Not One Size Fits All.Thank you DD for being a Great Support for Very Much Needed T3 for Our Well-being.
However, always err on the side of caution if AF is evident...
Management of an arrhythmia requires precise diagnosis of the type of arrhythmia, and an electrocardiography is essential; underlying causes such as heart failure require appropriate treatment.
This is very handy thank you Dippy for the papers. My local endo dept all believe T3 medication is dangerous for the heart . This has been. Their main protest. That and the consequential TSH suppression. I fact I think my TSH loop is broken as it's not shiffited in years even when thyroid levels dropped below range. But local endo dept wouldn't listen.
It's not only about educating GPs but it would seem the same applies to many endos! That is truly depressing!
My local endo dept all believe T3 medication is dangerous for the heart .
They need to qualify that!!!!
Excess thyroid hormone also causes the heart to beat harder and faster and may trigger abnormal heart rhythms. One is atrial fibrillation, a disorganized rhythm in the heart's upper chambers. A related symptom is palpitations, a sudden awareness of your heartbeat.
Hypothyroidism can affect the heart and circulatory system in a number of ways. Insufficient thyroid hormone/T3 slows your heart rate. Because it also makes the arteries less elastic, blood pressure rises in order to circulate blood around the body. Elevated cholesterol levels, which contribute to narrowed, hardened arteries, are another possible consequence of low thyroid levels.
See also the link below added byhumanbean re "Low T3 effects on the cardiovascular system"
TSH is a pituitary, not a thyroid, hormone which is basically ( when all systems are working correctly...or normal) a message to the thyroid to raise or lower thyroid hormone production
low hormone = high TSH
high hormone = low TSH
I would agree with your assertion that your TSH is no longer reliable....so possibly a pituitary problem
....This means that TSH levels alone are useless for deciding whether someone with pituitary disease has developed a pituitary-thyroid deficiency or whether they are on the correct amount of levothyroxine replacement (or too much or too little).
I would suggest that there are too many conclusions reached on the basis of " normal function" when the patient's function is no longer normal, and may include impaired T4 to T3 conversion or a form of thyroid hormone resistance for example.
Note how many times the word " normal" is used!!
I agree endo's knowledge is limited and we often find that thyroid patients are being treated by diabetic specialists.....both being endocrinologists!!
T3 is key...
And medic's lack of knowledge about T3 is causing misery for patients.
As evidence, the science is out there, but too often medics rely instead on what has become just accepted beliefs
Been there!! Got the "scars"!!
I don't know how that can be changed when so many people in high places believe the beliefs, and not the science.....and continue to defend their positions.
I experienced lethargy at first when I started T3. But I think that in my case the Dr lowered my T4 very low for me. And my nutrients weren't up to par. Especially my Iron level were very low. I don't know but I think that if the Iron is not up to par for some reason the T3 doesn't work as well. And the adrenals have a hard time especially in my case when I was dosing for a very long time after my TT with Levo only. It made it very difficult for me to add T3. I had to do it very very low and slow. Patients is the Key here.. But don't give up. It's very worth it .Best wishes.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Low TSH but normal T3 T4
Help Interpreting Results Please - Normal TSH, Low T4
TSH results - advice please
thyroid blood results following almost 3 months on T3
