Is T3 only beneficial if you’re a poor converter from T4?
Husbands NHS endocrinologist has said as he converts T3 well (which he does appear to when we’ve checked results) there is no point trying it. That it is even harder to get a stable balance than with levothyroxine and the drugs are less regulated so can’t always guarantee what you’re getting.
Is this right?
If it is we’ll accept it but wondering if we need to pay to see private endocrinologist for advice.
What are people’s opinions of T3 and what are the advantages of it from people that have experienced it?
Thanks
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Sunshine388
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Well, I'm on T3 only and I was a perfect converter! But, I can't tolerate T4, for some reason. I've tried again and again to reintroduce it, but am always much happier when I drop it again. So, for me, T3 was of great benefit.
That it is even harder to get a stable balance than with levothyroxine and the drugs are less regulated so can’t always guarantee what you’re getting.
Pretty sure that's not right! For a start it isn't a drug, it's a hormone. And, secondly, I don't think they would be allowed to prescribe it at all if it wasn't well regulated. That just sounds like doctors' excuses for not prescribing something they really don't understand!
Thanks, husband has previously tolerated levothyroxine but struggling with fatigue the last 9 months. He feels it is all thyroid related. NHS endocrinologist did request tests for other autoimmune conditions but didn’t seem very helpful in relation to thyroid advice. Wondering if we need to go private and get another opinion.
Really doesn't sound like this endo knows much about thyroid - very few of them do. Most of them are diabetes specialists who think treating thyroid is a doddle. It isn't.
Do you have your husbands actual numbers: results and ranges? Easy to see how well he converts from FT4 and FT3 results.
Might be a good idea to see a private endo, but chose wisely. Make sure the one you chose actually does know something about thyroid before handing over your hard-earned cash! Most of them are just NHS trained and double up as NHS endos, too, meaning they know just as little about thyroid as your present endo.
Any advice on how to make sure we find a good private endocrinologist?
This is last 2 years of results. He’s been having checks every 6 weeks as they went a bit wrong last summer. Columns are TSH, T4 then T3. Green numbers are dose he was on and what it was changed to.
Endocrinologist acknowledged he’s very sensitive to any dose change but said there’s no solution to help. He does appear to convert T3 well. He also has quite varied TSH but endo had no explanation or advice for this.
Thyroid antibodies were also tested (don’t know value sorry), were told they are elevated, higher than normal range but were told this didn’t really tell us much or change treatment.
OK, doesn't change the treatment, but it does tell us a lot. He has Hashi's, so numbers are bound to jump around. And, the TSH is bound to follow - but slowly. Therefore, the TSH level doesn't always correspond with the levels of the Frees. Which is just one of the reasons that TSH is such a bad indicator of thyroid status. Do you know how Hashi's works? Not many endos do! But, antibodies are often at their highest - not that, quite frankly, we know what their highest is because they're rarely tested! - but they are often at their highest just after a Hashi's 'hyper' swing.
You say, somewhere (can't find it, now) that he didn't always have his blood draw early morning and fasting. Unless labs are always done under the exact same circumstances, then you cannot compare them. TSH levels vary throughout the day, being highest early morning, and lowest midday-ish. TSH is also thought to drop after eating, and certainly will drop after caffeine. Pity you didn't mark the time of the blood draw on your chart.
You also say that testing is always done in the same lab. That can be a disadvantage, because if there was something interferring with the TSH testing (mouse antibodies, or something) in that lab, you would get varying results. Does your husband take any supplements?
Any advice on how to make sure we find a good private endocrinologist?
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Tbh I don’t know much about hashimotos. My understanding is usually following infection, there is an autoimmune response targeted at the thyroid and effectively kills off thyroid cells leading to hypothyroidism. Husband has never been told anything other about it or on-going issues. Basically just to treat the hypothyroidism.
Is it normal for TSH to vary so much with hashimotos then? He had never been told to have bloods done at a specific time, so they are completely varied times. His last 2 are fasting and he will continue to do it this way from now on.
Thyroid antibodies in September 2020 were 88 (0-75). In July 2017 they were 207 (0-75). GP recently said thyroid antibodies don’t really show anything, once they have been elevated once (original hashimotos attack) they will remain raised anyway. I sense this is poor advice but didn’t know enough to question her further.
GP recently said thyroid antibodies don’t really show anything, once they have been elevated once (original hashimotos attack) they will remain raised anyway. I sense this is poor advice but didn’t know enough to question her further.
Well, that's almost right. Once they have been elevated it means you have Hashi's, and that doesn't go away. But, the antibodies themselves fluctuate all the time. No point in trying to reduce them because it won't have any effect on the disease - the antibodies are not the disease, just an indication that you have it.
A brief run-down of Hashi's:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
This is all very interesting and well explained thank you. Last year we feel he initially went hyper about a month or 2 following potential COVID (prior to mass testing), bizarrely TSH and T4 were both elevated so based on symptoms and discussion with gp he reduced dose and ended up very hypo. So potentially this was a ‘hashi flare’ and by time bloods were done he was already about to enter a more hypo phase anyway? That’s a bit rambly of my thoughts but does that make sense?
So if thyroid antibodies remain raised following the initial hashimotos, does how raised they are still have significance? E.g does a more raised antibody mean a current attack? Or do they just naturally vary?
This does explain why his dose needs may of fluctuated in the past. Frustrating that he has been told many time by doctors that ‘once on thyroid replacement hormones it’s just a case of finding the right dose and staying there’. He has specifically been told there is no reason it would fluctuate.
Do you know, if you have hashimotos, will all infections trigger a response on the thyroid or is it variable dependant on the virus/bacteria? This is the most severe ‘flare up’ he has had since being diagnosed 14 years ago. I am convinced it is linked to the nastiness of COVID infection though.
I think he will be reluctant to go gluten free as he previously was ‘relatively’ stable for over 10 years so will say if it is a gluten sensitivity then would of caused more issues earlier. Will suggest it to him though.
The further supressing TSH makes sense- we’ll look into it further and discuss with an endocrinologist. His problem is then T4 and T3may be quite elevated, which seems to be unusual for most people with hashimotos!
Sorry for all the questions. I clearly need to understand hashimotos better! I tried to find out about hashimotos flare ups a few months ago and struggled to find any information about it.
So potentially this was a ‘hashi flare’ and by time bloods were done he was already about to enter a more hypo phase anyway? That’s a bit rambly of my thoughts but does that make sense?
Yes, absolutely, that makes perfect sense. And, this is what happens when doctors don't understand how Hashi's affects people.
So if thyroid antibodies remain raised following the initial hashimotos, does how raised they are still have significance?
They don't necessarily stay raised. They fluctuate all the time and can often go back into range. But, the levels of fluctuating antibodies has absolutely no significance.
E.g does a more raised antibody mean a current attack?
It can do, but not necessarily. Actually, they tend to be high after the attack, when they come along to clean up the traces of TPO and Tg.
Frustrating that he has been told many time by doctors that ‘once on thyroid replacement hormones it’s just a case of finding the right dose and staying there’. He has specifically been told there is no reason it would fluctuate.
That's because doctors know nothing about Hashi's. They just don't learn about it in med school. They have some vague notions about hypothyroidism, and if they were talking to someone who didn't have Hash's, what they said would have been right. But, Hashi's complicates everything.
Do you know, if you have hashimotos, will all infections trigger a response on the thyroid or is it variable dependant on the virus/bacteria? This is the most severe ‘flare up’ he has had since being diagnosed 14 years ago. I am convinced it is linked to the nastiness of COVID infection though.
He didn't have a 'flare up', the had a Hashi's flare - or Hashi's 'hyper' swing. Not the same thing.
I believe COVID does affect the thyroid, yes. But, not sure it would cause a Hashi's swing. Nobody really knows what triggers these swings - maybe some sort of infection, maybe not. But, I don't think enough research has been done to say anything with certitude.
I think he will be reluctant to go gluten free as he previously was ‘relatively’ stable for over 10 years so will say if it is a gluten sensitivity then would of caused more issues earlier.
Faulty reasoning. You can become sensitive to various things that you weren't sensitive to before. But, being sensitive to gluten has nothing to do with being stable or not. It's just that if you are gluten-sensitive, it could be the cause of some of the symptoms. Lots of people feel so much better when they cut out gluten. Didn't work for me, though! I felt exactly the same whether eating it or not. But, I do consider it was worth the effort of going gluten-free to find out.
The further supressing TSH makes sense- we’ll look into it further and discuss with an endocrinologist. His problem is then T4 and T3may be quite elevated, which seems to be unusual for most people with hashimotos!
Does it? Who said so? lol The level of FT4 and FT3 depends on your dose, not your disease. Hashi's people with lower levels are probably just under-medicated by their ignorant doctors, not just because they have Hashi's. Probably a lost cause discussing it with an endo. They are usually terrified of a suppressed TSH - mainly because they don't understand why it's suppressed nor what it does.
I tried to find out about hashimotos flare ups a few months ago and struggled to find any information about it.
Probably because you were calling it a 'flare up'. Arthritis flares up. Hashi's swings from hypo to 'hyper' and back again.
Don't worry about the questions! Ask as many as you need to understand - knowledge is power! And, after all, that is what we're here for.
Thanks, we have 5 years worth of bloods but wrote these out to try and see any trends. Would our local hospital be able to give blood results for when we lived in a different area or would he have to contact the hospital in that area?
The suggestion he makes that T3 (the medicine) is less regulated than levothyroxine, and therefore you can't guarantee what you're getting is cobblers for a start !.... Assuming he IS referring to T3 and not NDT ?
Presume just T3 🤷♀️ We don’t know much about it tbh but discussed if it could help and endo said all what is mentioned above. To get TSH below 1, T4 is always out of upper range. So wondered if T3 medication could help. Mainly wondering if the endocrinologist was a bit rubbish as he also classed TSH 0.96 (0.5-5) as ‘suppressed’ and to avoid having it that low.
well i've only got an 'o' level in maths .... (don't know what 'level' Endocrinologist's need)But even i can tell that 0.96 is above 0.5 ... so if that's 'supressed' then the range which is made up from 97.5 of the healthy population is showing quite a lot of healthy people are also 'suppressed'
I think your thought's about this endocrinologist are correct, and unfortunately he's not the only one in that category, most of them are at least as far as thyroid is concerned.
If he means that T3 levels blood tests are more variable and harder to interpret when taking T3.... well yes that's arguably true , but it's the same for all sorts of blood tests and is not an good reason to not test them or prescribe a hormone which might help .... after all i imagine diabetics/insulin level /doses require you to know what you're doing to interpret them... but fT3 tests (the level of T3 freely available in the blood) are not rocket science to understand and use once you understand how the time of the last dose affects them.... we can all do it, and we're a bunch of unpaid brain foggy hypothyroid patients.... he's an endocrinologist.... it's his job .
As is all too usual , what he's told you sound's like an excuse to put you off the idea , and for him not to have to prescribe it.... they ARE under huge pressure not to...
to be honest , whatever the conversion from T4 to T3 looks like on paper, if someone is not doing well . it's worth a try, and the reasons he's given you not to try it are bunkum.
The blood tests for fT4 and fT3 ONLY show the amount's circulating in the blood ... there is no (reasonable) way to tell how much is in each cell for each different organ, and they all use different amounts , and get hold of it with different priorities, using different Deiodinase 's to do so, so for, example your muscles could be happy with the amount they getting, but your heart and brain not.
Also some healthy people naturally have much higher ratio's of T3 to T4 than others do .. so what's to say someone is not one of them.
If there was not so much 'professional' and financial [pressure applied to restrict the prescription of either T3 or NDT, then like every other medicine the NHS prescribes .(many of which have much more dangerous potential 'side effects' than any thyroid hormone EVER) if you had difficulties on one variety , they would happily prescribe a safe alternative just to see if it improved things... so why not T3 ?
There is no medical reason not to try it and see.... it's all about budget constraints and career prospect's if they don't 'toe the party line'.
Having said all that .. just seen his ft3/4 results from later post
Jan- TSH 3.3 (0.1-5) T4 22 (12-23) T3 5.6 (3.5-6)
Feb - TSH 1.99 (0.1-5) T4 21 (12-23) T3 5.8 (3.5-5.6)
it does actually seem that he has as high an fT4 result as most people would say is a good level, and i can understand why an Endo would say he doesn't need to add anymore T3.
However , as i think we've discussed previously , ( ? can't remember if it was you ) his TSH is all over the place , and not doing as you would expect in relation to the fT4/3 levels.
Hey, yes it was me we discussed his varied TSH results with! His T4 is generally on upper end of scale but TSH can be higher end too. 🤦🏼♀️ My wondering is if T3 with less levothyroxine would help bring TSH down without sending T4 out of range. I must admit I don’t really know how it works and whether elevated T4 actual makes you feel rubbish. Or if his T3 is normal then T4 levels don’t really matter. But a lot of what the endocrinologist said made me unsure of him. He said the ultrasound scan my husband had been sent for was pointless procedure - he was the exact endocrinologist that requested it!!
In most cases ANY T3 dose will lower TSH more than Levo does , And it often makes it lower than doctors are comfortable with , If the 0.96 (0.1-5), T4 25 (12-23) result for example had some levo reduced and some T3 added then the endo really would be shouting about 'supressed'
However the most recent test TSH 1.99 (0.1-5) T4 21 (12-23) T3 5.8 (3.5-5.6) might well end up with fT4 /3 still in range .( depending on how much levo reduced and how much t3 added) and just maybe TSH would still be above 'supressed' ...everyone's reaction is so different it;s hard to say what will happen unless you try it.
but the fact is in your husbands case ,with TSH wandering around like his is doing , there is no way to know for sure whether the next TSH test result change is to do with the addition of T3 , or if it was going to go there by itself anyway .
The main problem you will have is that no one is going to be hapy adding T3 when fT3 results are already so high and even a bit over range.
Some people do feel crap with ft4 over range , but for some they only feel well when it is , because that is the only way they can get fT3 to be high enough for them, without adding T3.
many people are aiming to get fT4 and fT3 results at the sort of levels your husband has now , or maybe a tad lower so they are still in range .. so this does rather suggest it is not just the fT3 level which is making him feel bad .... i still suspect the 'wandering TSH' as the cultprit myself.
I suspect Endo was not interested in that because he didn't have an answer, but that doesn't make it normal to have it wandering around for no apparent reason.
It does seem he feels best when T4 levels are on upper end of scale or slightly over. It’s more difficult that we don’t really have a proper baseline of when he feels well as he never used to get bloods done then!
I admit T3 doesn’t look like the answer. Think I’m just trying to work out any potential ways to help him as he’s so convinced it’s all thyroid related.
I’m doing a bit of digging to see if there are any endocrinologists at our local hospital who specialise in thyroid issues as this one didn’t fill us with confidence. He also scoffed a bit when we asked for results from the thyroid ultrasound and made out it was a pointless test to of done- he was the one that requested it 6 months ago 🤦♀️
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Is it worth testing t3 and rt3?
what’s happening please help
What’s wrong with me?
don’t know what’s happening 
Advantages and disadvantages of supressed TSH
