T3 as opposed to levothyroxine

[ScriptMaz]

yesterday I had a consultation with an endocrinologist. Told her my story of having issues with levothyroxine. The fact that the 2 different brands I tried made my original symptoms worse and gave me chronic joint pain. She looked at my most recent results and suggested T3 alone as I seem to have a conversion problem. She told me to stop taking the levothyroxine immediately and try to see if the T3 helps the thyroid. Hopefully this won’t cause any issues and the fact that I’m no longer on the levothyroxine then my joint pains will disappear like last time. I have also spoken to my health care practice and asked for access to my test results for the last 9 months so hoping we can start on the journey of fixing my thyroid issues

[GreenTealSeal]

Hello! I don’t have any answers but just wanted to say our situations sound very similar and I hope T3 only benefits us both!

I am also just starting a trial of t3 only as advised by endo. I’ve been struggling with levo for nearly a year (joint and muscle weakness, speech problems, mobility issues) that got worse with every levo increase. It was affecting my life so much my partner was starting to worry I had MS.

I’m sure one of the experts from this forum will be along soon to advise but I think some people just cannot tolerate levo for one reason or another and it ends up causing more symptoms than the ones it resolves.

Wishing you well!

[ScriptMaz in reply to GreenTealSeal]

Thank you. I went from being superfit to struggling to walk up and downstairs. I stopped taking levothyroxine for 2 months to prove a point and my joint pain disappeared. The endocrinologist said that I am only the 2nd patient she has had who didn’t tolerate levothyroxine so we must both be pretty unique. I wish you well too and hope this T3 gets us both back to some kind of normality

[GreenTealSeal in reply to ScriptMaz]

I am the exact same!! We live on the third floor, no lift and I was struggling to get up and down the stairs. Also go walking with a friend in her 70’s and couldn’t keep up with her pace so knew something was wrong!(im early 30s and used to be very active too!)

I think, going by this forum it’s a bit more common than we’ve been led to believe.

[ScriptMaz in reply to GreenTealSeal]

Very true. How long have you been on T3 for? I only started it today so not expecting anything yet. I’ll only notice a difference once the levothyroxine has left my system so hopefully in the next 3 weeks my joint pain will disappear like last time

[GreenTealSeal in reply to ScriptMaz]

Very early days for me too! I’m starting small and slow on T3 so only been on 2.5mcg x 3 a day for a week so far and then making small slow increases from there.

Been off levo for nearly 2 weeks and horrid side effects/issues are slowly starting to dissipate again.

[ScriptMaz in reply to GreenTealSeal]

That’s good that your other issues are disappearing. That’s what I’m hoping happens with me so that I can go back to walking and exercising. It’s really been affecting my mental health not being able to go for my daily morning walks

[greygoose]

She told me to stop taking the levothyroxine immediately and try to see if the T3 helps the thyroid.

No, it won't 'help your thyroid'. It's thyroid hormone replacement, not any sort of cure or treatment for a wonky gland. Your thyroid will just go to sleep and your body will run on the exogenous hormone. How much did she say to start on?

[ScriptMaz in reply to greygoose]

I’ve to start on 10mg twice a day. Levothyroxine doesn’t work for me and only adds to my issues. The symptoms I had initially only got worse when I started taking levothyroxine and then I got other problems

[ScriptMaz in reply to greygoose]

I meant the thyroid symptoms I had which were unexplained weight gain and tiredness. Will it help with those as levothyroxine made them worse

[greygoose in reply to ScriptMaz]

I thought that's what you meant but I wanted to point it out for other people reading here. Too many people believe that levo and T3 are going to cure their hypothyroidism and make their thyroids function correctly again, and that's just not what it does, and isn't intened to. I to think that using the right words is so very important to avoid confusion. I'm aware that that makes be sound like a fussy old busy-body, but we spend so much time on here correcting people's illusions.

And I do understand about not being able to tolerate levo, because I couldn't, either. I'm on T3 only and have been for years. But, it's very important to start with a low dose and increase slowly, and some doctors just don't understand that. They start the patient on much too high a dose, the 'experiment' fails, and the patient is left floundering not know where to go next. And, it might have been better to have weaned you off levo gently at the same time. We should all try and avoid these violent changes in dose. But that's another thing doctors don't understand. I think they confuse thyroid hormones with aspirin! (As do a lot of patients )

[ScriptMaz in reply to greygoose]

Thanks for clarifying what you meant. I realise my thyroid doesn’t work and that it’s trial and error finding the correct treatment and dosage. A lot of people get outraged that I stopped taking levothyroxine to prove that I can’t tolerate it but it was something I felt I had to do to prove my point. At least now the doctors are listening and offering an alternative. Hopefully T3 will help

[greygoose in reply to ScriptMaz]

Well, it should do. Depends if it's prescribed correctly. So, how much are you starting on?

[ScriptMaz in reply to greygoose]

10mg twice a day

[greygoose in reply to ScriptMaz]

That's way too much to start on. Far better to start on 5 mcg once a day and work up to that dose by increasing by 5 mcg every two weeks. Otherwise, you'll be shooting yourself in the foot and find yourself right back at the beginning again.

I often wonder if doctors do this deliberately, knowing their patients won't tolerate such high starter doses, so that they can then say 'there, you see? T3 is not the answer!' And stop prescribing it. Setting their patients up to fail, in fact.

[ScriptMaz in reply to greygoose]

What would be the side effects of starting on a high dose like I am?

[greygoose in reply to ScriptMaz]

You'd feel worse than you do now, very hyper. You just can't do that sort of thing with hormones - any hormones - you always have to start low and increase slowly.

[ScriptMaz in reply to greygoose]

The only pain I have is the joint pain from the levothyroxine. The only symptoms of hypothyroidism I have is weight gain and tiredness

[greygoose in reply to ScriptMaz]

Sorry but that's irrelevant. I said you'd feel hypER. You have to give your body time to adjust to having these hormones, and the longer you've been without them the longer it needs to get used to having them again. But, you must do as you see fit. Just warning you, that's all.

[ScriptMaz in reply to greygoose]

I don’t know what you mean by hyper

[greygoose in reply to ScriptMaz]

Hyperthyroidism is when the thyroid is making too much hormone. It's the opposite of hypothyroidism, which is when the thyroid doesn't make enough. And whilst someone with hypothyroidism can never become hyper, over-medicating/increasing too fast/starting on too high a dose of thyroid hormone replacement can cause you to experience the same symptoms as being hyper. And, it's not pleasant: shaking and trembling, rapid heart rate, loose bowels, breathlessness, etc. Although a lot of symptoms are the same for hypo as they are for hyper, so you could experience a worsening of the fatigue and weight gain, and develop other hypo-like symptoms as well. Too much-too soon is never a good thing.

[jgelliss in reply to greygoose]

I totally agree with GG. By going with high doses right away instead of building it up slow will also set you up for failure. Slow and Steady wins the race.

[greygoose in reply to ScriptMaz]

No-one can answer that with any certainty - there are no certainties where thyroid is concerned, it's a very individual disease. All we can say is, it should help. Because T3 is the active thyroid hormone, and it's lack of T3 that causes symptoms.

It should at least help with the fatigue - although you do need optimal nutrient to get the full effect. But the weight-gain is another matter. Not everyone loses that extra weight even when optimally replaced. And there are so many variable where weight is concerned. What's more, the weight-gain is likely to be water-weight, rather than fat, and that can be very difficult to get rid of.

But, you'll just have to wait and see. One thing is more than likely to be true, that starting on too high a dose is not going to help anything.

[ScriptMaz in reply to greygoose]

I know everyone’s journey is different. I lead a healthy lifestyle, eat well and drink loads of water. My main issue was that due to the pain I was no longer able to exercise. I just want that to go away so I can get back into my normal exercise regime

[greygoose in reply to ScriptMaz]

I'm sure you do - that's what we all want, to get our former lives back. But, no-one can tell you exactly how to do that, it's all a matter of trial and error. But hypothyroidism has nothing to do with lifestyle, nor diet. It's just something that happens, even to the best of us, and we very often have no idea why.

[ScriptMaz in reply to greygoose]

I have vitiligo and I was told that once you get one auto immune disease you’re more likely to get another. Hopefully T3 will make me start to gain back some kind of normality

[greygoose in reply to ScriptMaz]

That is true about auto-immune diseases, yes. I have Hashi's and psoriasis.

I'm sure the T3 will help, but it will take time. It's not an instant solution. Patience is the key.

[ScriptMaz in reply to greygoose]

I’m hopeful that this will work. I just want the pain from the levothyroxine to disappear and then I can deal with the thyroid issue a bit better

[jgelliss in reply to greygoose]

👏👏👏👏

[pennyannie]

Hey there again :

Was this a NHS endocrinologist appointment and your trial of T3 being funded by the NHS ?

If successful I read most people need around 50 T3 daily just to function.

Optimal vitamins and minerals are still needed to support your core strength and again, it can be a slow build, so don't expect too much too soon.

Were you advised to split this dose - many on T3 do this as it has a shorter' active ' life when compared to T4.

If successful if your endocrinologist was NHS I belive s/he will advise your surgery as to ' them ' taking over prescribing and the costs of this more expensive treatment option in due course.

[ScriptMaz in reply to pennyannie]

It was NHS, they sent the prescription to my practice and I picked it up from the pharmacy. Levothyroxine makes me worse so that’s why I need T3. It doesn’t really matter who funds it. If it helps then it’s all good

[pennyannie in reply to ScriptMaz]

Well it does actually matter who funds it as if it were a private prescription the costs would be yours - and out of pocket - as has happened to many forum members when refused any treatment option but T4 monotherapy on the the NHS.

I have been forced to self medicate and I am post RAI thyroid ablation for Graves and do not even have a thyroid, let alone one that is not functioning well.

It is a post code lottery as to what gets prescribed, and lucky for you - your catchment area and endocrinologist supportive of it's patients.

[ScriptMaz in reply to pennyannie]

I just assumed that everyone got treated the same. Sorry for being flippant. I fought with my gp to get referred to endocrinology and they said that if I can’t tolerate levothyroxine then the next option was T3. Sorry that you don’t get treated the same

[pennyannie in reply to ScriptMaz]

Yes it should be but it is not :

No - far from it - where abouts are you in the country ?

You might like to go into openprescribing.net and then analyse - as there you can see by surgery and CCG/ICB area as to the uneven levels of prescribing T3 - Liothyronine.

In some area there are no new patients being prescribed - in others those who have been no T3 long term and settled are facing having their prescriptions removed and being switched back to T4 monotherapy.

We launched a petition to Parliament pre Covid as to reinstating T3 prescriptions - full details on the Thyroid UK website - the charity who supports this forum -

thyroiduk.org :

[ScriptMaz in reply to pennyannie]

I’m from Glasgow. I was referred to endocrinology years ago when I was borderline and didn’t really require treatment. This time when I was significantly underactive I had to fight to be referred again since I can’t tolerate levothyroxine. Luckily now they are listening and giving me another option in T3

[pennyannie in reply to ScriptMaz]

Yes - I've read Scotland has a ' different ' view on T3 - absolutely dire that all the treatment options other than T4 - Levothyroxine - have been removed from primary care -

20 odd years ago doctors were able to prescribe any of the treatment options when T4 monotherapy ( the cheapest option ) didn't work well for the patient.

[ScriptMaz in reply to pennyannie]

So glad I live in Scotland then. I had no idea T3 wasn’t an option for others. Hopefully things will change for you and you get the treatment you need

[pennyannie in reply to ScriptMaz]

Doubt it - been knocked back - and now given up, staying away and self medicating :

[shaws Administrator in reply to ScriptMaz]

I listened to the Scottish Parliament in Glasgow and it was stated that people should be prescribed T3 if needed.

thyroidtrust.org/scottish-p...

[pennyannie in reply to shaws]

   Forestgarden - you might be interested the above link regarding the availability of T3 in Scotland - and this post - as it just highlights that your next steps may not as stressful as those of us - over the border in England.

Given your history of RAI thyroid ablation for Graves I would hope your case for T3 favourable.

[Forestgarden in reply to pennyannie]

Thanks pennyannie . I'm in South Lanarkshire so not a million miles away, but... may be a world away in terms of nhs trust guidelines. When I put my FOI request in I was not encouraged by the info I got back. Very negative, and 'if you're on T3, we'll try to get you off it' approach. I couldn't figure out how to post all the info on here though

[pennyannie in reply to Forestgarden]

Oh - sorry - I just thought you might liaise with this other forum member and ask to be referred to her endocrinologist - if distance is doable.

I believe in England we are allowed a second opinion of our choice - and there is no restriction on where that may be .

[arTistapple in reply to pennyannie]

I am fed up (not with you) when I hear it’s a ‘postcode lottery’ with reference to who gets what on an NHS prescription. It’s a natty little phrase to cover the situation but it’s just not accurate. Postcode lotteries in prescriptions are nothing to do with a state of ‘luck’. They are decisions made by human beings, number crunching politicians and medics, who make decisions about our health with no reference to ourselves, our families, our ability to earn or our lost contributions to our communities and our country. Not to put too fine a point on it, these idiots are damaging the health of the nation in its widest possible terms.

[pennyannie in reply to arTistapple]

Well - yes - we all agree with you and why Thyroid UK started the T3 Petition and challenged Parliament some years ago -

I believe Vince Cable and Lord Hunt supported our Petition and spoke on our behalf in the House of Commons and the bill was passed upstairs for a second reading in the House of Lords where you may still find it under a cushion 2 rows from the back of the chamber -

In other words Covid hit and everything and everybody's focus went elsewhere :

[ScriptMaz in reply to arTistapple]

We should be getting treated as individuals with different problems. It should make no difference where we live, we should be getting good healthcare for everyone. I’m just glad the doctors listened to me and are trying a different option as opposed to a one size fits all with levothyroxine.

[shaws Administrator]

I think you are very fortunate to have T3 prescribed as GPs haven't a clue that it is the 'active thyroid hormone 'needed in the millions of T3 receptors' in our bodies that enables us to feel well - we have many - our brain and heart brain has the most.

I am fit and well on T3 alone and have no symptoms and my body 'feels' normal (i.e. no clinical symptoms.

[ScriptMaz in reply to shaws]

It was the endocrinologist that prescribed it. I am glad to hear a positive story as mostly I hear the bad stuff. I hope I feel as well as you do when the T3 kicks in and the levothyroxine has left my body

[shaws Administrator in reply to ScriptMaz]

Take notice of 'how you 'feel on a 'dose' and when you are symptom-free that should be your 'daily dose. Remenber to always take it on an empty stomach and wait qn hour before you eat,

Good luck. Sometimes we may have to adjust dose slightly.

[ScriptMaz in reply to shaws]

Thank you. That sounds like good advice. Hopefully this works

[Regenallotment]

wow congratulations! That endo sounds like a keeper! Fingers crossed T3 alone suits you. You’ll be back active again in no time.

What brand have they prescribed? Like Pennie Annie says above you are likely to need more than 10mcg in time.

A good resource to read up more if you haven’t already is Paul Robinson’s blog/website. Very informative.

I’m a combo person but my aches improved with raising my ferritin and vitamin D, B12 etc too. Have you checked yours?

🌱

[ScriptMaz in reply to Regenallotment]

Thank you. The brand I’ve been prescribed is morningside. I know it’s trial and error with the dosage but hopefully it’s a start to getting back to normal. They checked everything else and said it was normal but I’ve asked my go practice for copies of results and I’m waiting for an answer. I will check out the website you suggested

[Forestgarden]

Is there a way to 'save' useful posts to read later?

[helvella Administrator Thyroid UK in reply to Forestgarden]

Depends what you mean by "save"!

Go to the original post and click on "Save post". Or "print" the page to a PDF?

So much depends on what you are using.

[shaws Administrator]

I am fit and well on T3 alone.

I followed Dr John Lowe's advice who was also an Adviser to ThyroidUK. He had a bad fall that caused brain injury and died after a few weeks.

Previously he also advised taking T3 in one daily dose, fasting (you can drink water) and wait an hour before eating.

I will give you a link that may be helpful for you.

tpauk.com/main/articles/the...

He was a very sympathetic doctor and as a young man was able to relieve many of his patients symptoms. His Father and his uncles (on the father's side) had taken their own lives and that's the reason why he researched into what could cause suicides of very young men.

[ScriptMaz in reply to shaws]

Thank you 😊

[J972 in reply to ScriptMaz]

Hello, I was just wondering how things are going on T3 only ? 🤞🏼

[ScriptMaz in reply to J972]

hello. I no longer have the joint pain I had with levothyroxine so the thyroid side is far better for me. Unfortunately I now have sciatica so I’m still unable to exercise properly. I’ve had this since beginning of December so hopefully it will disappear shortly and I will be back to my normal self. Thanks for asking

[J972]

You must be relieved? Well done for your persistence. Sorry about the sciatica, I’ve had awful bouts in the past including where the muscles went into spasm - but, it’s much improved now.

[ScriptMaz in reply to J972]

From my hip to my foot is numb but in the last few days it’s gotten better. I’ve been taking a small dosage of amitriptyline for the nerve pain and starting physio next week. The T3 has definitely made a difference with no visible side effects

[J972 in reply to ScriptMaz]

Eek. I remember I was on amitriptyline and naproxen, the latter to help with sleep. I propped my leg up on a pillow in bed, I recall. Helped a bit. Good luck with the physio 🤞🏼

[ScriptMaz in reply to J972]

Thank you. I have naproxen as well but I try not to take it. I don’t want to mask the pain. I want to feel it so I know when it’s getting better if that makes sense