I took Levothyroxine for 12 years until I had a very bad reaction to it. Stopped it and felt better, but after about 6 weeks of course much worse. After huge arguments with GP and with a TSH of 150, found a private endo thanks to this forum. Long story short, she suggested Liothyronine (T3) because at least it is licensed in the UK, unlike the NDTs. I did get some Erfa from Canada by roundabout means, but didn't do well on it.
After a couple of false starts, feeling very ill, I began on a tiny crumb of T3. This was in 2012 and it has taken me 5 YEARS to the increase dose up to 25mcg, and at last my TSH is 1.9. Halleluyah. Don't feel that great really, but on the whole less ill than before.
My (different) GP now tells me my free T3 is miles too high at 19.0 and he is going to ask the hospital about it as he doesn't know what to do. If he sends me to an NHS endo I think my days on T3 are numbered, as for them it is Levo or nothing. I had to fight like hell to get the T3 on prescription and ever since - we have moved 3 times - the GPs basically shrug their shoulders and claim to know nothing about it, as I am apparently the ONLY patient in town (and indeed the whole world according to them) who is taking it.
I wouldn't care, but the problem is that I have started to have chest pains and a bit of an irregular heartbeat. When I started the T3 I was aware of possible cardiac issues but have had no problems in that area until now. My husband had a bypass five months ago and I was exerting myself very much more than usual looking after him when I noticed the pains. I have also had pins and needles in my left hand/arm on and off for about a year, which was put down to carpal tunnel syndrome but I don't think it's that. I had an ECG which they said was normal (but so was my husband's so I'm not putting any faith in that). The duty GP is supposed to be referring me to the cardiac unit at some point, as it was she who found the heartbeat was a little irregular, although the ECG 2 days later seemed OK.
The irony of taking 5 years to get my TSH down within range, only to have this happen! I no longer live within reach of the private endo or I would go back and ask her advice. Obviously I don't want to do myself any damage but taking nothing isn't an option. I thought about asking to try a T3/T4 combo but GPs seem to know absolutely nothing about it. I tried to read the paper on it, but couldn't make much sense of it other than it's highly controversial. I can't see the idea going down well.
I wonder if anybody has had a similar experience and if so what did you do? I have had loads of great advice from this forum in the past - without you guys I would still be wrestling with the 'it's Levothyroxine or nothing' attitude, and would never have found the private endo.
Hoping somebody might be able to advise me - many thanks in advance.
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Kangagirl
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As a T3 user (although transitioning to a combination of NDT and T3) my FT3 test results have no bearing on how I'm feeling. This is regardless of dosage which I've experimented with.
I do believe that long term undiagnosed, and therefore unmedicated, hypothyroidism means it's not easy to manage. Would also include stressful life events in that view. Furthermore any colds, virus or indeed any undiagnosed condition can be affected.
Is there any way that your former private endo would do a phone consult or Skype where you could discuss your concerns and obtain advice re T3/T4 etc. Is it really too far away or just not convenient? Could you incorporate a few days away in the vicinity?
Thank you for your reply. I've found that no GP is ever interested in how I feel anyway, they just go by the 'numbers'. I was diagnosed in 2000 and as I say took Levo for 12 years, so it isn't so much a case of being long term undiagnosed or untreated, but rather trying to find something to replace the Levo since it went bad on me. I did try four times to get back on it as it was much easier to dose than the T3, but felt terrible. I'm not dead against trying it again after a 5 year lay off, but don't fancy another 5 years of trying to get THAT right!
The private endo really is too far away - I'm in South Devon and she's in the North Midlands. I suppose 'too far away' depends on how you feel, but I'm just not up to the drive. I did think about emailing her to see if she's still practising, but I wanted to see if I could arm myself with some ideas before I spoke to anybody.
I sympathise re numbers, it's really not doctoring is it! Any idea how long you'll wait for the cardiac referral? Perhaps see what happens there before deciding?
Difficult if you're not up to driving and guess a train would be a faff.
Basically NHS Endos don't want to deal with folk on T3 so we're subjected to their scaremongering. But your FT3 shouldn't be that high on such a small dose, can you repeat the test?
It could well be three months before I get an appointment if my husband's case is anything to go by, and he was pretty ill. I don't know who my GP is going to 'consult' or how long that will take - he's left me on T3 for the moment as he doesn't know how to handle it. I've been looking for some info to see if 19.0 was really high - couldn't find anything so thank you for answering that. Can't win - when I was supposedly 'well' on Levo, my T3 barely crept into the lower end of the range. I doubt if I can get another test straight away, so I may have to consult Blue Horizon. I was thinking perhaps I have a little wiggle room with the TSH, and could try 20 mcg instead of 20. Even if the TSH went up a little, it should bring down the T3 a bit too, but probably not enough to suit them. It does seem a low dose compared to what some others are taking - I was on 30mcg but my TSH was undetectable at the previous test and the GP had a fit. I was so pleased to have a TSH within range after all this time, only for him to ring up and tell me about this!
The main thing for me is I don't want to be damaging my heart if I haven't already. It seems mad to think I might have to go on medication for that. Or it may be nothing to do with the T3 at all and would have happened anyway. Flipping thyroid - was there ever such a tiny thing that caused so much trouble!
No I didn't do that. I didn't even think of it. So the result might have shown a 'spike'? I was going to try coming down a bit as even if the TSH goes up a bit, it's low enough to allow me a bit of room to still be in range. It seems mad to be talking about letting the TSH go up after all the years spent getting it down, but the T3 being at 19 does worry me. Thanks for the suggestion.
Hi Kangagirl I've only been diagnosed a year with an initial TSH of 149. After 12 months of feeling dreadful and nearly bed bound I decided to buy T3 and self medicate - my Endo said I wasn't converting but due to costs £250pcm on the NHS for T3 he was holding back from prescribing it for me. I advised my gp who freaked and contacted my Endo that I had bought T3 and wanted their supported & supervision as I was scared but couldn't carry on as i was. My GP searched the medication and said he wasn't aware of it but after seeing it was available would prescribe it if my Endo wrote to him.
My Endo saw me straight away and agreed to supervise me taking my own meds as I'd brought them surprisingly! He was shocked at just how little I paid and agreed the NHS is being ripped off by pharmaceutical companies preventing ppl getting the treatment they need.
I've now been on T3 for 2 months and have found it's been a huge help. It's not the miracle I thought as I've also been diagnosed with lupus but compared to how I was at Christmas i have improved.
T3 can and is prescribed on the NHS and maybe a combo of both would be a compromise you could suggest to and Endo. But GPs have very little or no knowledge of T3 so unless your lucky like me to have an open minded helpful GP or an Endo who reluctantly prescribes it, it is an uphill battle.
Maybe do what I did and threaten to self medicate unless they take your symptoms seriously and give you the treatment / meds you need. Good luck x
I'm sorry to hear you've had such a terrible time, and glad to hear you're feeling a little better. I hope things continue to improve for you now you've got some treatment. It must have been hard to fight them when you were feeling so bad, so good for you. An ongoing Thyroid War (my name for it) is the last thing you need.
I was prepared to get it from abroad if I had to, but got my first batch of T3 on a private prescription from the endo, but as I wasn't taking much at all at the time it cost a lot less than £250pcm! Even so I think it was around £90 odd and I couldn't possibly afford that every month. I was lucky that my endo persuaded (ordered!) my then GP to prescribe it. It wasn't the magic bullet I'd hoped for either, but by then I felt so bad I was just desperate to get something that wouldn't make me actually feel any worse, but would bring the TSH down, albeit slowly.
We've moved several times since then, and the GPs have just kept prescribing it - I keep expecting an outcry about the expense but so far have been lucky in that respect. Even now I'm not taking much, only 25mcg a day. But I am appalled at how little they know about any alternative to Levothyroxine, it's like they've been brainwashed. Mostly it's like they don''t care as long as you don't bother them.
They just concentrate on the sacred TSH, so they kept putting the dose up bit by bit until as I say, now my TSH is in range for the first time in 5 years. I always ask for the T3 to be tested but it's only the latest lab that's done it, and the GP is freaking out because it's 19! I'm pretty freaked out myself.
A T3/T4 combo is what I thought I might suggest - I certainly don't feel in any shape to go through another war, so hoping for the best. Thank you for your advice and good luck to you too! x
Wow think we've had similar experiences! Your FT3 does sound very high so really hope you get sorted soon. I feel I'm on a slow progression to improvement and I do have good and bad days but I'm feeling positive and although it feel like a fight it's one I'm going to win haha x
Thanks Glynisrose - I was looking up side effects and yes, cardiac issues are mentioned with Levothyroxine as well. The things they don't tell you! In the UK there doesn't seem to BE much choice unless you chose to self medicate and get an alternative by devious means. I've done that, but the Erfa I got from Canada, by a legal but very convoluted process, didn't seem to agree with me. Here it was 'Levothyroxine works for everybody and there isn't anything else' - and indeed I had been on it for 12 years until it caused problems. I thought myself lucky to get T3 on prescription, thanks to the endo I saw privately.
it seems as if it's a balancing act between the thyroid and cardiac issues. Less medication for the thyroid and feel like hell, or get your TSH in range and risk heart problems, and all the dangers that go with that. When my TSH was a little high - not 150 that was awful, but at about 10, I didn't feel any worse than I do now it's 1.9, so crazy as it sounds, maybe it's better to have a slightly high TSH if it lessens the cardiac issues. But the medics don't seem to care how you actually feel, it's all about the sacred TSH.
Thanks very much for your comment anyway, I didn't actually know that until I looked it up.
There shouldn't be any risk with taking thyroid hormones if we are hypothyroid. Some people take liothyronine for weight loss or for body-building which isn't the proper use of this important thyroid hormone.
I think most of the negative comments come from the Professionals who don't want to prescribe it.
In fact, thyroid hormones, when used in a proper manner can avoid heart problems altogether because if we are on too low a dose our heart can struggle. I shall give you a link. Usually we are frightened into submission by doctors who state we will get osteoporosis or heart problems with thyroid hormones.
Oh. I forgot to say that since being on T3 I haven't had to call an ambulance (a few times) , be processed by the A & E Dept. Haven't seen the Cardiologist who was puzzled by my constant visits etc.
My first visit to the A & E Dept was as an in-patient - discharged next day as 'probably viral with a high cholesterol' - in actual fact my TSH was 100 and even the other group of doctors I had seen over the years never did a thyroid test but I had unnecessary procedures for things i didn't have.
Thank you Shaws. It's good to see you're still giving out good advice! I learned all I know about the thyroid from coming to this group when I first hit trouble with Levothyroxine in 2012. I have saved Dr Lowe's article and will show it to my GP. To be fair he isn't trying to take away my T3 so far, but he is concerned that my T3 reading is 19, and I have been having some chest pain when I exert myself more than usual, along with a slight irregularity, though the ECG reading was normal. (But then so was my husband's, and he ended up needing a quadruple bypass, so I'm not very reassured about that!) He said he would be failing in his duty if he didn't ask somebody about it who hopefully knows more than he does. In fact he is the first GP to actually give a hoot so I can't really criticise him.
But if past experience is anything to go by, whoever he goes to for advice will belong to the 'Levothyroxine is the answer to everything' brigade, so I was trying to arm myself with something to counteract whatever they say. A T3 reading of 19 is way out of range, but I haven't been able to find any info that says whether or not this is dangerous. It may be that we have to find some compromise with balancing TSH, T3 reading and medication, where none will be 100% right but as good as we can get - having seen what my husband went through I certainly don't want to compromise my heart. But I don't fancy going back on Levo either as it has taken me 5 years wrestling with T3 dosage to get my TSH within range AT LAST, only to now be getting cardiac symptoms! Many thanks again.
I am sure you know I'm not medically qualified but the blood tests they use were introduced along with levothyroxine alone, so how can they possibly be the same as someone who adds in T3 or takes T3 only?
First, it is very right that doctor gets your heart checked. A lot of the Endos frighten people off T3 by saying their heart will be damaged. If Doctor Lowe who took 150mcg of T3 daily plus his resistant patients took much more T3 than others. Go to the date November 9, 2005. Excerpt:
Most endocrinologists subscribe to the practice guidelines of the American Association of Clinical Endocrinologists. When a patient such as you sees one of these endocrinologists, he’s likely to take her off T3 and switch her to T4-replacement. As many patients have told us, when an endocrinologist switched them to T4-replacement, they became ill and dysfunctional again. These reports are consistent with studies that show the ineffectiveness and potential harm of T4-replacement. The studies show that T4-replacement leaves many patients suffering chronically from hypothyroid symptoms[1][2][3][4][5][6][7] and gaining weight they can't lose through dieting and exercise.[8] The patients are also likely to use more drugs and develop one or more of several potentially-fatal diseases.[9]
Potential harm from T4-replacement has thus been scientifically documented.
Thanks again Shaws. I had to smile at your last sentence - my previous TSH before the recent one of 1.9 was 0.35, and a different GP at the practice REALLY freaked out! I went down to 25 mcg instead of 30 to stave of all the threats to send me here there and everywhere for more investigations, and no doubt taking away the T3. I'm just trying to find an acceptable balance where I feel reasonable, (I've given up all hope of ever feeling completely well), even if it means some kind of compromise with all the various 'ideal' readings.
I wouldn't care myself about a T3 reading of 19 although it's way out of range - it seems obvious that it will be high if that's what I'm taking - but the cardiac symptoms do bother me, so yes, I'm glad that it will be investigated. I'm just so ticked off that it's happening now, after the 5 years it's taken me to get my TSH down. :/
I took t3 for a while and also got heart problems. Palpitations which at times were very scary. I went onto thiroyd NDT which I find quite weak in that I believe the dose they state it is, is a lot lower but has worked for me with no side affects just upped the dose until I felt best. I don't care if it's licenced or not all the doctors I have come across are quite happy for me to feel awful so I take charge of my own health. It's legal to buy it in from different countries they just like to make you feel it's something seedy and wrong. They don't have to live with my symptoms very ill, so can just do one in my opinion!
Thanks for your reply katiekatie. I'm glad to hear you've found something that is helping you. I don't care either if something isn't licensed and am happy to break the rules - it was just that I was able to get the T3 on prescription because it's licensed, and when you feel rotten it's easier than doing all the internet trawling to find something else. You're right, the doctors seem happy for you to feel like hell and only seem to care about the sacred TSH - although they couldn't argue with mine when it was 150!
How long did it take for your heart problems to show up, and how much were you taking if you don't mind me asking? I was aware of the possible problems when I first started on it so took it very slowly (I couldn't tolerate much anyway), and as I say it has taken me 5 years to get my TSH down to 1.9, except that now my GP is a bit freaked about my T3 reading which is 19, and I'm freaked about the cardiac symptoms I'm getting!
I don't really fancy another 5 year experiment with some other med, but looks as if I might have to. I did get some Erfa NDT from Canada but it didn't suit me, and also some Naturethroid, which I never tried because by then I was on the T3. I have heard of Thiroyd NDT but am so out of touch with what's out there now, I will have to research it if I have to come off the T3. It never ends, does it?
Just one more thing - I wonder if you would mind telling me how much Thiroyd you take and how long you've been taking it? Sorry to ask all these questions, I just need all the info I can get. Many thanks again for your help, and good luck.
There is a good evidence that long-term T3-only therapy is safe. You could email Thyroid UK and ask them for the articles.
I experience fast heart beat, heart palpitations and heart skipping beats when I'm under-medicated. 25mcg of T3 is a tiny dose. Mose of us need about 50mcg and some of us much more. You need good levels of D3 and iron to medicate with T3. I was stuck on 25mcg of T3 for months until I realized I had severe D3 deficiency. Since then I've been increasing my T3-dose...
Devon is a s**t place as far as thyroid specialists are concerned, I'm afraid. Dr P. E. in Derriford used to prescribe T3 and ndt but I'm not sure whether he is still around - he was due to retire...
Thank you for your reply. I was quite poorly when I started on T3 and couldn't tolerate much, so I had to start with a miniscule dose and work my way up - as I say, it has taken me 5 years to get my TSH down to within range, and now they are freaking out because my T3 is 19.0. I've gone through some of the articles, but with the exception of Dr Lowe's they are quite lengthy and complex - as far as I can see there doesn't seem to be an awful lot of 'official' evidence that will persuade my GP, or more importantly any NHS endo he might send me to. I have printed some out, but you know what they're like, you're not supposed to know anything or research your own condition. And now I'm getting some cardiac symptoms just recently, they'll probably use that against the T3, and it's making me nervous as well. I can't see them upping the dose as when I was on 30mcg my TSH was 0.35 and even more freaking out ensued!
If you ask me, Devon is pretty sh*t for most things except scenery and heart surgery - we certainly have to highly praise Derriford for my husband's bypass, even though he had to wait 8 months on half a ton of medication to keep him alive. The first thing the surgery here did was take away my D3 which I had fought tooth and nail to get - although I can get some if I pay for it. I was never able to get any B12 no matter that my result was through the floor. I was told you only get it if you've got Pernicious Anaemia so I bought some online. I don't mind so much having to buy it, kinda used to that now, but I seem to overreact massively to everything so it would have been useful to have some help monitoring it.
We lived in Somerset before we came here and I got a copy of a letter from an NHS endo I was supposed to see but missed the appointment by one day, as it was made in January for August and I got the day wrong. It said under no circumstances whatsoever would they EVER prescribe T3... my previous GP in Devon said I was the only person in his 25,000 practice who was on T3, he had no idea how I was supposed to take it, (and didn't care). So much for caring sharing GPs, eh? I think the only reason there wasn't a monumental hoo-hah about the cost was because I was taking so little.
Thanks for the heads up about Dr English at Derriford, I will try and see if I can find out anything about him. Glad to hear you managed to solve your problem.
Yea, that pretty sums up my experiences of Devon....the scenery is great though. I hope I'll never have the "pleasure" of assessing the quality of their heart surgery!
Your high FT3 is a mystery. I assume you left an adequate time between your last dose and the blood test? Regarding your skipped beats: it's a long shot but are you taking magnesium? Apparently it's important for cardiovascular health - my dad has high BP and I was reading about it today.
Well, no I didn't. It was about 4 hours. I didn't know about leaving it 12 hours is it - or maybe I knew somewhere in the back of my mind but forgot. It's a long time since I've heard anything except 'your TSH is still too high, take more'. Except the time before when it was 'your TSH is 0.35, take less!' And it's hit and miss whether or not they even test for T3 or not - I always ask but they only do it once in a blue moon. So I didn't even think of it. How long are you supposed to leave it, do you know? I doubt if they would give me another test so soon but if I thought it would make a difference I could get one through Blue Horizon though I can't really afford it.
It's more rapid or uneven beats I'm getting, and some pain as well, so I really want to find out if there's a connection to the T3 or there's something amiss anyway. Fat chance of finding out if it's thyroid related though. After seeing what my husband went through, I'm not keen to sample the heart surgery either, even though he's a lot better now. I did try magnesium a while back, but I seem to over react to everything and I couldn't take it. I even got some that you spray on the skin and that made me feel ill, but at least I could wipe it off! Unbelievable really. I also had some iron spray and amazingly did manage to get my ferritin reading up. I never expected it to work. It made a hell of a mess though, skin on my thighs and the bedclothes a horrible yellowy green colour. If I have to get some more I will, but I get so fed up with having to take all this stuff and use sprays and patches etc etc, and it costs a fortune by the time you add it up.
I hoped I was done with all that but depending on what happens I may have to start again. So far my BP seems OK, but at this rate nothing would surprise me - it might be off the scale this time next week!
You take care too xx
I was on Levo only for around 18 months. Despite much fiddling with doses, a supportive GP, supplementing vit D etc, I still felt tired all the time. My GP felt it was unlikely I would get T3 on the NHS as my labs are very bottom of normal range rather than out of range. I went to see a private GP. Her tests confirmed poor conversion. She also found an odd heart noise. Not wanting to hang around, I went to see a private cardiologist, who did an echo cardiogram and ECG. Turned out I have a low grade heart murmur, but nothing to worry about. I also had carpal tunnel type symptoms and general muscle cramping, which I now know can be caused by being hypo. I felt it was time to try something different. I have recently added T3 to my (appropriately reduced) Levo. Since the NHS route seemed unlikely to work out, and I also wanted more control over my own meds, my GP offered me a private prescription (for free!) which I sent to a Germany pharmacy to be filled. Not only is German T3 very highly regarded, it is also much cheaper than in the UK. So I started taking the German T3 "Thybon Henning" a week ago. I have done much reading of research, and intend to aim for a ratio of between 1:5 and 1:10 between the T3 & Levo. I have started on 5mcg per day, taken in the morning, and will be raising to 10mcg tomorrow.
I am sure you are extra concerned about possible cardiac symptoms in view of your husband's experience, so if I was in your position, I would definitely go and see a good cardiologist privately if you don't have prompt access to an NHS one. The appt cost me £250, and tests another £300. Money well spent in my view, especially as it allowed my to carry on my thyroid meds & weight training / gym work uninterrupted.
T3 peaks in your blood (though not your cells) 2 - 3 hours after taking it, so I believe it is recommended to leave at least 12 hours between your last dose and any thyroid related blood test.
Do you take your T3 in a single dose? or spread throughout the day?
Thank you very much for such a helpful reply. It's weird that you mention carpal tunnel type symptoms - for about a year I have had pins and needles in my hands and arms - at first it was mostly when I woke in the morning. It was diagnosed as carpal tunnel and I was told to buy arm splints and then go back for injections. I didn't believe it - carpel tunnel in both wrists at once? And I thought it would be a lot more painful if it was that. It's pretty unpleasant, but not agonising like the frozen shoulder I had - also autoimmune - which was screamingly unbearable and it took me a year to get a jab which relieved the pain, although the shoulder will never be 100%. The pins and needles also doesn't bother me at night, which I understand carpal tunnel does. It has got so it's on and off through the day and mostly in my left hand/wrist/arm, and they're not clear if there's any connection with the cardiac issues. So probably yet another wretched HypoT side effect! I've been doing some 'carpal tunnel' exercises but so far no joy - if it's thyroid related there probably won't be.
If I don't get an appointment with the cardiologist fairly quickly I will have to think about going privately somehow. For the tests anyway. When my husband was initially diagnosed with angina by a GP who was on the ball for once, he went downhill so rapidly it was obviously worse than first thought. He enquired about seeing somebody privately, but at the time all their consultants were covering the junior doctors' strikes, so unbelievably the NHS appointment came through before the private one. I've never known that before.
You're right about my husband's illness making me a bit paranoid. He was always very fit (we thought) and active, not overweight or anything and it all happened so suddenly and unexpectedly - well I say that, he waited 8 months for surgery, I mean the initial symptoms. When he eventually had the angiogram, they said 'you can't outrun your genes', so a family history of cardiac issues is a worry.
Through ignorance I didn't leave 12 hours before my blood test, but I'm not confident I will get another on the NHS so soon, so I might have to pay for that to get a true reading of the T3. I saw the sheet that showed the comparative prices of T3 here and in Germany and France, and it's absolutely outrageous. How that is even possible I have no idea. Well I have, but it's not the place to go into that here! Depending on how things pan out, perhaps you wouldn't mind me messenging you at a later date to find out how you go about getting your T3 from Germany?
I'm afraid I do take my dose all at once, although I know it's recommended to space it throughout the day. The reason I do that is because of the advice not to take it within an hour of food. (If this is still the advice). I'm very underweight and have a lot of food intolerances, so tend to graze a lot during the day rather then have big meals, in an effort to get as much food on board as possible. So juggling T3, and food and other meds is a bit of a nightmare. I could make the effort to spread it out if it would make a significant difference but as the dose is quite small I went for the easy (or lazy) option. I have never had any advice on how to take it from any GP, anything I've found out comes from the wonderful community on here. The symptoms I'm getting don't seem to happen at any particular time that I could relate to the T3, they're just random at any time of day.
Once again, many thanks for relating your experience, and for your advice. It has given me a lot to think about, and more importantly, something useful to hit my GP with! Good luck...
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