T3 Side effects ????: The consultant I see has... - Thyroid UK

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T3 Side effects ????

halifaxlass profile image
65 Replies

The consultant I see has prescribed me T3 but he said he was cautious doing it as there can be side effects such as heart attacks & strokes. Do any of you brilliant folks out there know any more about this - hopefully not had anything happen to you - but am so ill with T3 & thyroxin thinking about giving T3 only a try.

Many thanks

Cath xx

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halifaxlass
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65 Replies
Hennerton profile image
Hennerton

Hi, I have been on T3 only since Feb this year and am slowly improving. I love it but recently, at my docs request I tried introducing some Armour. It was the same old story of aches and weird pains, so I am quickly back on T3 only and will probably stay on it for as long as it keeps me well. I am not in the slightest bit worried about all the "hearts and bones" scaremongering but I do not know you, so hard for me to calculate any risk. If doubtful, ask to see a heart consultant. I did that and he was completely unfazed by my medication and put my mind at rest. It is only if you are on too much, that there may be a problem and same could be said for any other medication. Good luck!

Margo profile image
Margo in reply toHennerton

Interesting that your doctor suggested you add Armour to your T3 would have thought he would have suggested Levo'. Did he prescribe Armour for you?

Hennerton profile image
Hennerton in reply toMargo

I had already tried that combo, without success. Ultimately I think it s the T 4 element that does not suit me.

Margo profile image
Margo in reply toHennerton

I have found the same Hennerton. I don't have a thyroid and was on Levo'' for a long time, getting iller and iller. Then saw Dr.P who put me onto Armour, that didn't suit me, so then went onto T3 which I bought on line. Still had problems, but was slightly better. Now have T3 on the NHS and feeling better if I keep to a small dose.

Marz profile image
Marz

...do your research carefully and you will see that T3 benefits so many of us. Heart problems can appear if you take too much T3. Back in the 50's T3 was used and mis-used as a slimming drug - and so people suffered palpitations which gave T3 a bad name. Cardiologists are aware of the heart/thyroid connection so are possibly more amenable to a flexible approach.

I have been T3 only since last October. The only problem I have with my heart is that it flutters a bit when my next dose is due !!

sarahstevenson profile image
sarahstevenson in reply toMarz

Like Marz - I have palpitations if I have too little T3 and it's a good indicator of next dose being due! Research shows that under or over medication can cause heart problems - go by your signs and symptoms. I am on T3 only.

ivy77 profile image
ivy77 in reply toMarz

this is from wearing down t3 in serum and heart is very sensitive to that, i noticed that too

Melodylavender profile image
Melodylavender in reply toMarz

Since reading your post i have realised that this is the case for me as well , i get a little fluttery when i am due, it's really something to hear others experiences and realise i am sharing similar things , thanks :)

Heloise profile image
Heloise

I think you are more likely to have heart problems when under dosed with T4. A fact that hypothyroids can have an enlarged left ventricle and a lag of the R wave on an EKG. I would be more concerned about that since it probably has something to do with conventional treatment.

Zephyrbear profile image
Zephyrbear

I'm sorry, but I suspect that the doctor's frightening assertion that T3 might cause heart attacks and strokes may be code for 'it costs £52 a packet and the NHS will suffer a heart attack or stroke if I dare prescribe it...' But of course, you will have agreed with him that you'd rather not risk it... If you look at posts from those of us here who have been taking T3 successfully for a few years now, you will find that in most cases life has improved tenfold. Certainly in my case it lifted the brainfog and general malaise completely and I have been able to take a BA (Hons) course in History and Creative Writing at University (at the age of 58!!!) and will, hopefully, graduate next year! That is something that I would never even have contemplated doing while I was on T4 only, because that left me in a horrible place! Tell him you're willing to risk it; obviously monitor your progress, but I'm a great believer in listening to your body... it will tell you whether things are going well or not.

halifaxlass profile image
halifaxlass in reply toZephyrbear

Many, many thanks to everyone for your replies, I knew you wouldn't let me down !! I do wonder if cost is an issue but have to try something to get a degree of wellbeing, thanks again & best wishes,

Cath xx

langdocienne profile image
langdocienne in reply tohalifaxlass

Hi halifaxlass, cost is not an issue, as I said in another reply, I buy it for 1euro 16 cents a pack of 30 tabs x 25mg in Crete, where I holiday now, better that than keep us all sick!!

Melodylavender profile image
Melodylavender in reply tolangdocienne

Hi, could you please tell me how you buy it in Europe? Have been using it for a few years and my life is unrecognisable now to how i was before, war started with my new doctors who want me to take levo which made me so ill, am prepared to travel to stay this well, many thanks.

langdocienne profile image
langdocienne in reply toMelodylavender

HI Melody lavender, when I go to Crete to stay with my friend, I buy a pile of it, actually got loads, so not buying any when I go in July. Just go to any pharmacy, you can buy about 2-4 packs, as that's all that they usually have in stock, but you can order as much as you like, and you will get it. Last time I ordered 50 packs, so I must have about 100 in. I take 2 x tabs daily, never looked back.

Melodylavender profile image
Melodylavender in reply tolangdocienne

Thank you so much i had no idea this was possible, it's so much cheaper in Europe too i have no idea what s going on there. My new doctor that ordered the review came back from holiday and given me back my liothyronine as it was prescribed by a specialist, he also gave me the letter. Knowing i can get it from Europe has been a life changer for me, removed so much worry thank you xx

EleanorRigby profile image
EleanorRigby in reply tolangdocienne

Please can you send a link for ordering. I am on T4 only and feel like my life is over - no support whatsoever from GP.

langdocienne profile image
langdocienne in reply toMelodylavender

Hi Melodylavender, I holiday in Crete, have large stocks of it, just go to any pharmacy there, very very cheap, am going again in July, will probs buy more!!

scorpiojo profile image
scorpiojo in reply tolangdocienne

Hi, I will try the suggested place, but how can we guarantee it's genuine? If it is I think stock piling it is the way to go! Thanks for all the help..

langdocienne profile image
langdocienne in reply toscorpiojo

Hi Scorpiojo, it's from unipharma, and you can only buy it at the official pharmacies.  We are ripped off here in the Uk, go to Andorra, you can get anything from the pharmacies, Spain, France Germany, here it's ridiculous, they want to keep the monopoly.  Nothing to do with us self-medicating, all to do with Greed for money!!

Pamboz profile image
Pamboz in reply tolangdocienne

I am so annoyed was in Spain last week.

scorpiojo profile image
scorpiojo in reply tolangdocienne

Please can you tell me where the website or whatever it is for this t3... After being put on it Tue I'm expecting a problem at gps.. Although I have made an appt for 30th.. I will fight it, but your help maybe crucial.. Thanks

langdocienne profile image
langdocienne in reply toscorpiojo

HI Scorpiojo, I buy it when I holiday in Crete, have large stockpiles now lol, only 1euro 16cents for 25mg x 30 tabs, cheaper than chips, so the NHS really has no excuse, no side effects apart from good ones, no brain fog anymore, more energy.

scorpiojo profile image
scorpiojo in reply tolangdocienne

I do feel slightly better on it out of 10 say a 4.. So wonder as 20m seems a small dose if they will increase t3... Only problem with that is I have to wait 4montgs before I see consultant:(

Melodylavender profile image
Melodylavender in reply toscorpiojo

If you can get referred to a specialist and get them to prescribe  liothyronine then the doctors cannot remove it from you. I just had one do it and now my new doctor ( who was away on holiday) basically tore up her prescription and printed a copy of the specialists letter to prevent it happening again. I went into the specialists armed with research and a was ready for him, he tried to make me take the T4 but i refused point blank as i had had very adverse effects from it. Good luck x

scorpiojo profile image
scorpiojo in reply toMelodylavender

I have been on various amounts of t4 levo for a good 7 years and have even had it taken away.. I've trusted the GP and the altering as blood tests they said determined it.. However this year I vowed to put myself 1st for a change and insisted I see an actual consultant.. I had blood test on 100mg levo and blood wasn't great so she increased to 150m levo... When I went back had had another blood test on higher dose of levo, told her it did nothing for me.. So she's given me the t3 20m .. Deep joy, told me they may have a fight with gp tho!! I've taken it for nearly 2weeks and feel slightly better, but as I say somewhere, the night I forgot the 100m levo I actually felt better :/

Melodylavender profile image
Melodylavender in reply toscorpiojo

I can really relate to that, i felt good on the levo for a couple of months then i had a very bad time of it, I collapsed twice and lost vision then i started to develop hives on my neck very scary as i had never had those symptoms before.

 I managed to get my bloods from the doctor and they were actually worse than when i was diagnosed.. I had a battle with him to get them printed off and he got pretty angry i must admit and threw me out, i never saw him again after that, he avoided me and i only had yearly tests. 20 mcg seems a small amount to me, I am on 60 mcg, i was actually on 80 mcg for a year from a locum doctor and for me personally that was the only time i have felt like everyone else did and had the same energy levels. I had a social life and managed to get myself full time employment after years of struggling. I still maintain my work but the social life is sparse sadly now.

I am no doctor and do not know your bloods or how really to read them, trust your body and do battle ! It was a total life changer after 10 years ( at least ) the doctors said i been suffering for without diagnosis, put yourself first it's your body !!

scorpiojo profile image
scorpiojo in reply toMelodylavender

The consultant put me on 100m Levo t4 and started me on 20mcg of t3 liothyronine.. Out of 10 I feel better by 4.. I wait 4 months before going back.. 20 mcg seems a small amount compared to others and the levo does nothing for me...

scorpiojo profile image
scorpiojo in reply toMelodylavender

it's not really clear why stopping the t4 and just taking t3 seems to work better... Good luck to you

scorpiojo profile image
scorpiojo in reply toMelodylavender

my consultant said they would write to gp but after the 28 days I had from hospital it's up to the GP to repeat.. The doc did say I may have to fight it.. So going to go this week to see..😊

Pamboz profile image
Pamboz in reply toMelodylavender

Unfortunately I didn't take the research with me when I went, and couldn't argue with any conviction against her "knowledge" silly me, thought it would be a walk in the park as I am so much better on T3. Are there any particular articles I should take to my next visit? when I have to beg.

Pamboz profile image
Pamboz in reply toscorpiojo

You and me both, NHS has stated that Endo is the only one who can order T3, I had appt. yesterday and she refused, saying I should just take T4 or source it privately!! Good luck with your visit.

bossbird profile image
bossbird in reply toZephyrbear

funny thin is that T3 bought anywhere in Europe is as cheap as chips why is it so expensive here rip off Britain again!!

langdocienne profile image
langdocienne in reply tobossbird

Hi bossbird, it's only 1euro 16 cents for a pack in Crete, I have loads lol!!

scorpiojo profile image
scorpiojo in reply tolangdocienne

where in Crete as I am going to try getting this and have 1 place .. Thanks

langdocienne profile image
langdocienne in reply toscorpiojo

Any pharmacy, or anywhere on the Greek islands, or mainland, just literally walk in and buy it, and order copious amounts, they don't care.

bossbird profile image
bossbird in reply toZephyrbear

It's mad a had a private prescription for t3 was £70 but the same tablet same strength and same amount was only 6euros in France WHY

bossbird profile image
bossbird in reply tobossbird

It's now over £200 per prescription

langdocienne profile image
langdocienne in reply tobossbird

Rip of England!!! Remember only 1euro 16 cents a pack of 30x 25mg in Greece!

scorpiojo profile image
scorpiojo in reply tolangdocienne

it's advertised as 40 euro for 150 tabs

langdocienne profile image
langdocienne in reply toscorpiojo

HI Scorpio, pretty expensive, when they're only 1euro 16 cents, of course you have to spend to go to Crete and stay there!

langdocienne profile image
langdocienne in reply toZephyrbear

Hi I go to Crete regularly now, am 60, full of life again after starting on my T3, totally normal cycle, not menapausal, only been on t3 for a couple of months, what a life saver.

It only costs 1Euro 16 cents for a pack of 30 tabs x 25mg, so where on earth is the price tag of £52!! It is much cheaper to dose us with T3 properly, than have us taking loads of sick days, what on earth is wrong with the medical profession.

I am hardly converting T4 to T3, the head Endo knows, but still will never prescribe it to anyone here in Newcastle, wonder where he gets off with that decision, coz I know that in other parts of the country you can get it.

Cassandra profile image
Cassandra in reply tolangdocienne

Hi

Did you say you are 60 - I have been on T3 added to my thyroxine and the only side effect I am suffering is slight vaginal bleeding - another lady replied to say she had the same when she started on T3 but it only happened for a few days. As I am 65 I am slightly worried about this although it may not be the T3 at all - had a smear test over a year ago which was normal

langdocienne profile image
langdocienne in reply toCassandra

HI Cassandra

Yes I am 60, still having normal periods, always have been heavy, my doc made me have the FSH and LH test, coz she didn't believe me lol, but tests prove that I am still fully functioning.

I have never had any bleeding from T3, that does not sound normal, maybe to do with hormonal changes. I have 7 kids, and the most weird illnesses happened to them, and continues on with my daughter's in law. They always ask my advice before going to the doctor. As I know them and care, I look very carefully at their symptoms and lifestyle, am always right lol, in my diagnosis. Often things just go away of their own accord, given a bit of time, but it is still always best to get checked out at the docs, just in case.

If your still bleeding a bit, and have no cervical cancer, it could just be as I said, a hormonal imbalance, or maybe a sign of a cyst, possible pressure if you were overweight, but the main thing is that you do not have any form of cancer.

Take care Veronica

Cassandra profile image
Cassandra in reply tolangdocienne

Thanks for your reply

scorpiojo profile image
scorpiojo in reply toZephyrbear

Hi I have been on levo had the dose increased decreased taken away etc.. I then went and insisted after a good 7 yrs asking to see a consultant.. They have put me on t3 Tues and only 20mg a day? Plus 100mg levo.. I have to have a bone test back in 4 months.. I have been told of heart concerns with it, but told that's questionable.. Is this dose a silly won't do anything sort of dose? Please.. New to the forum so forgive any errors.. Jo

linlow profile image
linlow in reply toscorpiojo

No 20mcg a day is not silly - unless it isn't working.  The less you have to supplement to attain a 'normal' lifestyle the better it is for your body.  T3 is about 4 times stronger, weight for weight, than T4 so if you can use the lesser amount to get you back on your feet you can look to lifestyle changes (diet and exercise) to do the rest.

T4, levothyroxine, is notorious for stripping the body of necessary nutrients (phosphorus, potassium, calcium, Vitamin D & E).  One of the side-effects of this is a thinning of the bones - hence the DEXA scan you are being sent for - that leads to osteoporosis/brittle bone.  You can take measures to reduce the risk of this through exercise and diet. 

Your body tries to maintain a ph around 7.4.  If your levels get too acidic it will strip calcium from your bones and teeth to redress the balance.  If your bone calcium levels have already been depleted by T4 you are at greater risk of fractures.  You can help the counter this by trying to cut back on acid forming foods (meat, fish, grains, legumes, nuts, sugar, caffeine) and increasing alkaline foods (vegetables, fruit, dairy).  Plus, of course, the standard health warning on avoiding alcohol and tobacco - since they too can lead to stripping of calcium.

Weight-bearing exercise is also vital to stronger bones.  Weight-bearing does not refer to lifting 10 ton weights or strapping sacks of potatoes to your back but to standing on your own 2 feet and doing something that raises your blood pressure - so brisk walking, jogging, dancing, tennis for example.  Guidelines suggest 5x 30 min sessions a week.

Other forms of exercise; swimming, gardening, tai chi etc, help with balance, co-ordination and muscle strength, lowering the risk of broken bones.  So, whilst they shouldn't be avoided, they don't quite have the same impact on maintaining bone density.  Again guidelines suggest a further 2 sessions of these.

scorpiojo profile image
scorpiojo in reply tolinlow

I have started taking t3 only and 50mcg as 20mcg didn't increase energy and i still don't sleep...

linlow profile image
linlow in reply toscorpiojo

That is a strang jump, from 20 to 50, how are you taking it?  Most people benefit from splitting the dose into 3 over the day.  It should be taken on an empty stomach so an hour before food or 2 hours after food.  This increases absorbency and makes a reduced amount more effective.  Don't take it with other medications either as these can interrupt absorption. stopthethyroidmadness.com/d...

t3 isn't a sleeping tablet hypothyroidmom.com/18-thing...

langdocienne profile image
langdocienne in reply toZephyrbear

Hi Zephyrbear, I am nearly 61, mega busy, 7 kids, own business, actually can still have kids lol, an enigma!!, since self-medicating with T3 of 2 x 25mg daily together with my T4 of 125ng daily, I have never looked back. Maybe I should sell it to the NHS, I wonder where they get it from, it's only 1euro 16cents a pack of 30 x 25mg from any pharmacy in Greece, well Crete where I get it, no wonder they're broke!!!

penny profile image
penny

This is the usual rubbish from GPs. Mine has raised this because, in his own words, he is scared of being sued as T3 in not a standard treatment for hypothyroidism.

I have researched this and am grateful to the late Dr John Lowe for his knowledge and his posts. To paraphrase, from memory, an overdose of T3 can cause the heart to misbehave but this would generally be a result of sustained overdosing or if there was an underlying heart condition. As T3 has a short life in the body any short-term reaction could be corrected by missing the following dose.

My GP also had a hissy fit about my losing bone density. Although having not tested my bone density before I took T3 there would be no way of knowing if any bone loss was due to taking T3. Scientifically, of course, it would be impossible to attribute any loss of bone density to T3 as one cannot be the subject and the control in a study. Needless to say a dexa scan was fine. He also insists on an ECG - they can test all they like, I am doing just fine on 120mcg T3.

Good luck.

halifaxlass profile image
halifaxlass in reply topenny

Thanks Penny, much appreciated, Cath xx

bossbird profile image
bossbird in reply topenny

That's a lot of t3 I'm self medicating and on 4 X 20mcg but so better before I was on 4 X 300mcg plus 150 mcg thyroid gold also high doses I think is equivalent to 200 t4 and 20mcg t3 I'm I taking enough would be grateful of advice nervious about taking more t3

scorpiojo profile image
scorpiojo in reply tobossbird

I started on the t3 20mcg the consultant gave me on the 15th March when I increased it 2 weeks ago, naturally I ran out... However I bought some from Larnica Uni P online... They only sell 25mcg and I saw on here that people increased it if they didn’t see any real difference.. So I have tried two 25mcg tablets at 6 AM nothing eaten until much later...  TBH I have wondered if the tablets I bought are genuine and how would I know... But lots on here use the supplier.. I was also told to take 100mg of Levo by consultant but as that’s done NOTHING for me in nearly 7 yrs I tried it the 1st week and felt no better.. So that’s how I got the dose..

penny profile image
penny

My post was a while ago. I am not qualified to give advice; there are more knowledgeable people on this site who may be able to guide you.

I would say, however, that 'listening' to your body and monitoring your pulse, temperature and blood pressure should keep you on an optimum dose. I have now upped my dose to 175mcg, going slowly, and have no signs of being hyper. There are some on this forum who take larger doses than this.

Ellye profile image
Ellye

Can anyone please share what T3 med they're taking?.

I'm in such a bad place. I was diagnosed 3 years ago & on Levo, then synthroid, now NDT, & I'm getting worse & worse. I want to discuss this with my doctor asap. Thank you in advance!.

Ruthi profile image
Ruthi

You could always refer him to the Tayside 'Tears' study, which shows no difference in heart disease etc between those on T4 only, and those on medications including T3

healthunlocked.com/thyroidu...

scorpiojo profile image
scorpiojo

I've not been on t3 long and I feel slightly better 20m but I forgot to take the 100m of levo and felt better not taking it? The levo.. So I am starting to think I may do a few days on just t3 to see how that goes...

langdocienne profile image
langdocienne

HI Brainfog9, just take a little trip, I go to Crete to stay with my friend, and stock pile, go to any pharmacy, and you can buy a couple of packs, but you can order as much as you like, collect it next day.

Pamboz profile image
Pamboz

could you send me the info as well, had to see endo. yesterday who said she was unable to order T3 (which I have been on for a year) for me as it might make me susceptible to stroke and heart attack???? I told her I would have either rather than feel so bad on T4. NHS now rules common sense. She did say I could buy it privately if I wanted to stay on it!!!! Go figure. Really distressed as I felt awful on T4 and just starting to feel well and motivated.

jennygrigg profile image
jennygrigg

Doctors love to trot out this same old story with t3. I have read that heart disease and heart problems actually occur when hypothyroidism is either untreated through doctors constantly misdiagnosing and/or undertreating. In fact, sadly I can't remember which site I read it on, but when patients are recovering form heart surgery t3 is used as a part of their recovery protocol! :)

Marz profile image
Marz in reply tojennygrigg

.....yes that is correct. There is a very good book on Amazon - Thyroid and Heart Failure - you can look inside and read the contents - and T3 with its various names seems to be the star of the show. It is a book put together by and Endocrinologist and a Cardiologist and relevant research from around the world. I saved up and bought it ! There are so many ex-pats here in Crete of a certain age who do not believe there is a connection !

jennygrigg profile image
jennygrigg

There are so many DOCTORS who don't believe there is a connection! We just need to keep spreading the word that there are options :)

helvella profile image
helvellaAdministrator

Most people here wouldn't touch the body builder suppliers. After all, assuming you are talking about the UK, selling prescription-only medicines like that is a criminal offence. If someone is willing to do that, what compunction would they have about the legally less significant issues such as mis-description, inadequate quality, etc.?

Fluximus profile image
Fluximus in reply tohelvella

They are the same unipharma ones from Greeceand are good quality as I e used them for a while now also I've used tertroxin iwhich are very good aswell but it's costing me a fortune just to feel normal! I hate the t4 the gp keeps pushing on me !

helvella profile image
helvellaAdministrator in reply toFluximus

Glad to hear it is good, but I still would not trust that route.

Tertroxin? Where is that from.?

The only Tertroxin I know is Mercury Pharma's liothyronine - which is not now sold as Tertroxin in the UK. (The Patient Information Leaflet still have the name Tertroxin on it.)

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