Doing My Own Thing with T3

If I had known how simple it was to treat my long list of health issues with T3 I would have started on it years ago.

I had a thyroid test back in the 80's (just tested T4...nothing else) and was put on Thyroxine ...what we had before Levothyroxine.

My thyroid function has been up and done for the best part of 30 years and Thyroxine has never helped.

I discovered T3 back in March this year but left it too late to gain the results I was hoping for. I was so ill I ended up in intensive care following multiple organ failure and a cardiac arrest. I also spent several days in a coma.

I have been home since April 1st and am now taking 25mcg of t3 and 100mcg of Levothyroxine and am playing it by ear. I now have much more energy...gone is the drowsiness and the balance problem I had hardly happens now.

Early days but I have no intention of ending up so ill as that again

141 Replies

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  • Amen! x

  • Also make sure your levels of B12 - Ferritin - Folate - VitD are also OPTIMAL - as these will further enhance your health and help the metabolsim of the thyroid hormones you are taking. Balance issues can be linked to B12 - ( own experience :-( )

    Glad you are feeling better.

  • So sorry to hear you were so unwell. Here's hoping the next chapter has you full of life. Well done! Might give T3and Levo a go myself as NDT although better makes me itch like crazy.

  • I am also thinking of going back to levo and t3, on NDT at the moment, but weight piling up unfortunately 😢😢

  • I'm on Lego and I also am gaining a lot of weight and now I'm always lazing around, as before I was very active, probably why my tsh was high, now its at normal levels. I don't think I have enough thyroxine as before that's why my weight has gone up and my energy came down. I feackon levothyroxine only reduces tsh even if your tsh is high because your demands are high.

  • GosportNancy,

    I am pleased you are feeling so much better.

    My world changed with the addition of T3 to my T4. I keep thinking I am better after over a year as the improvements have been so immense ..... but then there is yet another bit (of improvement) & another bit.

    For many years, some of us become stuck in a chronic state of hormonal chaos, immune system overload, adrenal insufficiency, gut dysbiosis, impaired digestion, inflammation...need I go on. .. all perpetuated by Levothyroxine when medicated alone.

    My only regret is leaving the addition of T3 for so long.....

    Be mindful of optimal nutrients & adrenal health as for many, thyroid meds will only work when the fundamentals are put//kept in place..

  • But you do not say if you are carefully watched or if you get your T3 from a consultant???

  • saloplass,

    I previously suffered balance issues and weird head stuff when medicating levo only, so was " carefully watched " and improved almost immediately. Then my local health authority withdrew my T3 prescription after 3 months. I immediately moved to another health authority, who supplied T3 for another 9 months and then withdrew prescriptions to all out of area patients.

    I have had a gooey saliva problem for about three years and thorough investigations and testing (conducted on the National Health & privately) have bought no diagnosis.

    I wondered if perhaps it was the fillers in the Levo as have medicated this for 5 years. As I was being pushed into self medication, and consider I now know enough to self medicate, I recently switched to NDT and am doing well. The mouth problems continue but I may detect a slight lessening .... wishful thinking ? ? ...watch this space ! ! ...

    NDT was my ultimate aim all along but I read it can be intolerant of certain deficiencies in some. The synthetic T4 & T3 combo have served me well, whilst I addressed other issues.

    I hope you continue to improve as we all deserve a LIFE .

  • While in hospital I was prescribed T3 and sent home with some. I tried to get more from my GP but they said they weren't allowed to prescribe. My GP was meant to refer me to the endo within a month of when I came home on April 1st and I am still waiting. I buy mine on-line

  • Could you tell me where you buy your T3, thank you

  • Sent PM

  • Good luck - I am also taking T3 (since April) and it's had a huge impact on my energy levels. I have read Dr John Lowe's recommendations about taking T3 at night in one dose and I'm trying that and it's really helped my sleep quality. I'm now recovering really well. I'm considering going to France to buy some Cynomel as I've heard you can buy it over the counter there.

  • That's interesting please let me know if this is the case about it being available over the counter in France please if you find out more. Also do u take Levo and T3. I'm just on t3 at the moment only because I thought Levo had stopped working for me, starting to wonder now if I should have been taking them both xx

  • Personally I take both - it has taken years to get my thyroid into good mode. And this is by using a consultant at hospital. I take 50mg thyroxine one day and 75mg the next, always with 10mcg of T3. I understand increases of dose of T3 the body just gets used to, and of course it can do damage with larger doses..................... we need to remember this. Getting it from abroad seems relative easy - but perhaps not as safe as getting it prescribed.????

  • Best option may be to have it prescribed, but in the absence of that self-med may be the only way, and preferable to endless decline.

    My gp threatened to take my modest dose of t3 away from me even though I'm compliant and my test results are good. Lots of folk here have lost their scripts for no apparent reason short of cost.

  • and new patients can't now be prescribed T3. We have missed the boat :(

  • My usual T3 supplier on-line has stopped selling it....oh well :(

  • I hope that is not the same one as mine GosportNancy !!

  • I ended up finding some on a body building site at half the price I was paying...so I have cheered up a bit :)

  • I hope it is of similar quality and potency then.......Might be worth doing a new post to check how others on here have found it (without naming of course to keep within HU guidelines)

  • It's the same packet I have in my kitchen...body builders have used it for years to help burn off body fat....works for me too

  • Just checked my supplier - seems all ok there. Whew! :)

  • Don't buy from bodybuilders they are always more expensive than normal suppliers and you never know are you getting the real thing.

  • Buying mine from the recommended source now...cheap as chips and I know what I am buying

  • Is that really the case saloplass - that the body gets used to more T3? If that was true everyone would always need more and more. We usually find a stabilising dose at some point - I admit I'm not quite there yet but I'm much better on T3 than when on T4 only. I agree it's best to get help from DR's - and I'm still seeing an Endo - but on my last visit was told I was now fully treated and that she didn't want to see me for another year. She won't work with me to try to help with my last few symptoms. So I'm considering my options. Maybe I should ask for a second opinion?

  • Littlebee, can you tell me more about taking the t3 dose at night. I'm taking 20mcg through the day split in to 5mcg including a dose before bed but I'm still having a 4am heart racing wake up, from lack of thyroid adrenaline surge I think. Would love to learn more from your methods.

  • I understand that T3 can cause heart problems, racing heart for example and also tremors ................... just a thought - ask your doctor.

  • You'd have to take an awful lot! Sensibly dosed, T3 has no ill effects. After all, it is made naturally in our bodies!

  • Just have to agree not to agree.

  • Hi saloplass,

    The professionals will tell you it is bad for your heart because the NHS is no longer funding it due purely cost only, they will preach about unfounded studies that have no relevance to people with thyroid problems. It is only bad for your heart if taken in mega doses on a regular basis and if you have a normal thyroid function. As someone said recently, if you took it unrealistically, you would be like a Duracell battery and all over the place. I would be worried then! Some people supply and take it as a slimming agent/body building stimulant, that is bad for you. I have been on it for over 10 years with no affect on my heart. If I thought for one minute it was dangerous, I would not take it, let alone praise its virtues. But at the end of the day, you do what is right for you.

  • Do you know the irony for me is t3 puts my heart rate down as low thyroid gives me adrenaline surges, then I take my t3 dose and my adrenaline backs off. But I struggle to get through the night without the adrenaline surge because I'm asleep and can't multi dose through the night like I do in the day. I'm trying to avoid taking t3 at 4am as I think it will get rid of the adrenaline surge but make me alert when I want to be asleep. Does anyone else know how to get enough t3 to make it through the night without going hypo?

  • When I first started taking levothyroxine I got a racing heart ect. I was told thyroxine contained t3 and t4

  • Thyroxine does not contain T3.

  • The idea being that our own bodies should be able to convert as you know this is not sometimes possible, but GPs do not seem to carry out the right tests to establish this fact, and then they seem unaware as to what they could do for their patients. Now they are not allowed I was told.

  • It's not that they're not allowed to, but they do not believe that t3 is instrumental in restoring well-being, it is expensive and they worry about monitoring it, as well as having to tussle with the labs who sometimes refuse to do the tests, so all those elements mean it is an avenue they're reluctant to explore.

    Sometimes conversion isn't the issue. I converted just fine (all my test results looked great) but I had symptoms (bloating, constipation, thin hair and eyebrows, lethargy, fatigue) that did not resolve until I started t3. I do not have an explanation for it. My mother is the same - she didn't feel well until taking ndt - so my hypothesis is that there is some genetic reason the levo doesn't relieve all symptoms.

  • Goodlife1 this happened to me last night. I have recently raised my dose a tiny bit (from 50/75 to 75) and I wondered if that was something to do with it but what you say makes more sense. I awakened with a racing heart and within a few minutes it seemed to slow to normal. Not very nice being awakened with a start that way.

    Maybe time to try taking at night again.

  • I think there's definitely a correlation puncturedbicycle as I used to also have 12am/2am wake ups before I started taking a bedtime dose of t3. It was very counterintuitive to take it at night but I was desperate to experiment and get some refreshing sleep. It's working very well except those last couple of hours very early morning.

  • I had that too, they performed a procedure called radio frequency ablation on my heart been much better since.

  • Hello Goodlife1 - I know it doesn't suit everyone - but it's helping me to wake feeling refreshed. I take 15mcg at night. My biggest problem has always been mornings - when I wake up I ache and haven't slept too well etc etc I have the DIO2 gene which means I don't convert T4 to T3. I used to take 10 mcg on waking and 10 mcg early afternoon but I could feel them wearing off and the aching returned. I'm taking as much of my dose at night as I can. I do still feel under medicated overall though and if I take a little more than I've been prescribed it makes me feel less achy.

  • Thanks Littlebee, my worst symptom is unrefreshing sleep so I'm going to try a bigger dose at bedtime.😊

  • Think I might join you...starting tonight

  • Oh I hope it works for you - I've searched and searched for the best options. Let me know how you get on.

  • Out of interest Goodlife1,

    Hope you do not mind me asking, why do you split your 20 mcg and why take it before bed?? I have never been advised to do that, because I was told it is best to take in the morning to give you that kick start and it does exactly that for me!

    So if you are taking it before bed when you should be ready to rest, then I would assume that is why you wake up with your heart racing - or am I misreading everything??

    Have you ever thought about not taking it before bed time but perhaps splitting in into two doses, perhaps once in the morning and once about dinner time or earlier in the afternoon - would or could that help?

    I am just curious as I have heard other people say they split theirs and take it at bedtime too.

    :)

  • Hi jollydolly, sure, I split it in to 4 doses as I'm very sensitive to pure t3 and taking it as one dose would send my heart rate through the roof. The reason I've started taking a bedtime dose is my research has led me to find out that TSH is pulsing stronger at night as it needs more t3 during 12am to 4am to make high cortisol to wake us in the morning. So taking the thyroid hormones in the morning is the opposite as to how nature wants it. But as I have rubbish sleep I need my t3 during the day too to wake me up. My problems are a lot to do with my low nighttime hormones giving me rubbish sleep. 👍

  • Thanks for explaining Goodlife1 :) Can I ask why you have rubbish sleep, is it because of the thyroid or other? (I don't mean to pry, but I have a few problems myself and wondered if anyone else has had the same problems)

    I used to have really disturbed sleep patterns or if my dose was too low on T4, I could sleep for 12 hours or more and still feel crappy. It wasn't until I got severe case of pneumonia, that I found out why my sleep, was so disturbed! and it was because I have sleep apnoea! The "Professionals" think I personally have always had some form of it/breathing problems, but it was never picked up or detected until now, So do not know if it is connected to my thyroid problem and that I only have a partial gland that doesn't work or just a coincidence.

    The apnoea it self is now less than 1% but I still have to have a cpap machine due to damage to my lung. Since using it, I have a good six hours and I feel refreshed in the morning. Never had it before even with the T3. But once I am awake, I am ok and then I take my T3 etc and everything is ok for a while. I do get a little tired in the afternoon, so I am wondering whether to have half a dose in the morning and the other half in the afternoon. The T4 is really high at the moment, so I think that may be reduced soon.

    :)

  • You can get it there but you will need a prescription.

  • Littlebee - i have read thru quite a lot of dr. lowe's content and i don't recall him mentioning about taking an entire daily t3 dose at night, i thought he said about taking it in the morning. could just be my brain fog again ?!

  • Hi Rainbow100 - oh that's funny about your brain - mine too! I actually can't find where I read it now ! I know that's where I got the idea from though - it seemed wrong as I though T3 wears off really quickly but I read it can be used by the body overnight. If I find it I will try to message you again.

  • Littlebee - you will be better off travelling to Greece where you can buy it OTC without a prescription :-)

  • Marz I am lucky enough to be visiting Kos in September. Do you think I can get it there without any problems?

  • All the Pharmacies will stock it. They will order in for you within 24 hours. No problems at all.

  • Oh I have friends who are about to go to Greece - I could ask them. Is it simply called T3 or liothyronine there too? Do I need a Greek translation?

  • UNI-PHARMA is the name - check it out on the internet where you will find a picture of the box. It is pink and white. Maybe print off the picture for your firends. There are 30 tabs per box and each one is 25mcg. Usually Pharmacists speak excellent English - well they do in my area of Crete. If they say T3 - they could be offered Tea Tree Oil :-) TAFF DRIA is the Greek translation - phonetically ! Point to the Thyroid - and say THEEROYD.

    They only stock about 2 boxes - but are re-stocked daily and you can order how many you like.

  • What's the situation for bringing it back to the UK? Do you know? Are we likely to get into any sort of trouble? x

  • I don't know about physically bringing it back from a holiday for instance. It concerns me that I have had T3 sent to me in packages marked 'cosmetics'...if it is OK why hide what they are doing? Anyway, it's a moot point for me as I have stopped taking it as I have found that selenium does a better job

  • That's interesting. I've just started supplementing selenium after advice on here. So I must have misread your other replies. Do you not take thyroid hormones any more? x

  • I got fed up running around for T3 and was looking for a less troublesome alternative and came upon tons of info on selenium and as I was taking it at a lowish dose already have doubled the dose and am feeling the effects after a couple of weeks on it. I had to lower the thyroid hormones as I was going hyper. I am on 100mcg levo and no T3 and am still slightly hyper

  • looselywoven - pop into your main luggage and all will be fine. It is for your own use after all - which is allowed.

  • Thanks, x

  • Before spending your money, you should ask a new question specifically about getting T3 in France without a prescription. One or two people have managed it apparently (or so I've read), but the vast majority of people are told "Non!"

    I'm sure greygoose, who lives in France, has said it can only be got with a prescription.

    Edit : Oops, just noticed bruster and scorp1o have already said this.

  • No, it is not available OTC in France.

  • Addition of t3 has changed my life too. What a disgrace it's not standard and we have to be so ill first and be our own doctors.

  • You need (UK) to see a consultant - not a GP. It is because the use of it via GPs made it possibly just a standard when it was not required that has made it be removed and made into a red drug UK

  • The reason people have to jump through so many hoops to get T3 in the UK is mainly because of the price. It costs more in the UK than anywhere else in the world, as far as I know.

  • You really are anti-T3, aren't you! lol It is not classed as a 'red drug'. Firstly, it isn't a drug, it's a hormone. Secondly, you don't have to go to a hospital to get it prescribed, any endo can prescribe it if they want to.

    I live in France, and it's easy to get T3 prescribed. I've had it prescribed for years. Now I self-treat. I take 75 mcg a day, at night. I do not have a racing heart or tremors. I feel better than I've felt for years - ever since they first put me on T4 only, which nearly killed me!

    A healthy body converts T4 to T3 naturally - every single human being - and dog - does not need a specialist to over-see this. I really don't think you ought to scare people off using it, like this, because it's not necessary. If people start low and increase slowly, there's no danger. If you over-dose, you will know and reduce the dose. And the problem with doing this under the supervision of an endo is that they will never give you enough to make you well. That's why people self-treat.

  • No I am not anti T3 - did you read my other replies? This red drug saved my life without doubt. You have no idea what perhaps a different area does are you even in the UK? Where I live it is a red drug and only an endocrinologist within a hospital can prescribe it. Why would I make this up? I totally understand what is required but not all of us work in the same way - depends what is going on in our bodies. That is it as far as I am concerned.

  • Yes, I read your other replies. No, I don't live in the UK, as I said, I live in France - did you read my reply? But I've been reading on here long enough to know what goes on. Where is 'your area'?

    Nobody - absolutely nobody - is suggesting that everyone needs to take T3. If you can convert levo to T3 then you do very well on levo and don't even come onto a forum like this. But the people on here usually do not convert well, and they need to take some T3, because it's low T3 that causes symptoms. Why should they be denied it?

  • Of course they should not be denied it. Who is saying they should be? I too have been on the forum for quite some time. I needed it and was given it but not by my GP. I do not convert at all.

  • saloplass, just out of curiosity, do you know why you take levo as well as t3 if you don't convert at all? I just wonder what the levo is doing if it isn't being used as t3. I was under the impression that if you don't convert then levo is useless to you.

    I do convert (reply above) but for whatever reason the levo alone doesn't relieve all my symptoms.

  • The link to the thyroid hormones available on prescription in the UK...T3 is on there. My GP practice refused to prescribe it and the specialist here that could prescribe hasn't sent an appointment through a month after I left hospital

    evidence.nhs.uk/formulary/b...

  • Do u take 75mg of t3? And do you also take t4?

  • 25mcg T3 and 100mcg Thyroxine....just experimenting and will adjust dosages as and when

  • Yes, Crinfly, 75 mcg T3 and no T4.

  • Hey saloplass , can you point us in the direction of where you have seen its a red drug please? I had a look on the RAG list, but couldn't find it. R x

    gmmmg.nhs.uk/html/rag_adult...

  • I was told by my surgery and CCG - Somerset that it is now classed as a red drug. Otherwise I would not be saying it - I would not have the information if it had not come from medics.

  • I understand that but as many on this forum can testify, we are very often misinformed by medics/surgeries/GP's etc. I guess I would just suggest caution with parroting information from other sources without actually checking the validity of it. Especially when it can perpetrate fear of a potentially helpful source of healing for a lot of people on here. R x

  • Rhsana, here's a link to the Somerset CCG formulary

    formulary.somersetccg.nhs.u...

  • Thanks crabapple! R x

  • You are all correct. I work for the NHS and, although I am not qualified to prescribe, I often write to GPs asking them to prescribe items for my patients. Individual CCGs have their own lists - red, amber and green. It is entirely about money. Amber means that they will fund it if the prescription is from a consultant. Red is a no, they won't fund it. That is where the phrase "postcode lottery" stems from! It is very frustrating to recommend something for someone who may or may not get it depending on the address of their GP, even though they are being treated at the same hospital, by the same person, and the GP might otherwise be willing to prescribe it. Hope this helps.

  • I don't have a consultant. I was sent home with T3 for two weeks, then nothing

  • I personally feel T3 is not a drug that you should use without the involvement of a medic. I have been on this drug for years and it saved my life, but every three months I have to be checked by my consultant. Yes of course you are going to have more energy, 25 mcg is quite a dose! I am not being negative, over in the UK it is now classed as a red drug - which means only a hospital can supply it via a consultant. So yes the NHS service does prescribe this drug, but for good reason. A GP cannot as I understand it give out prescriptions any longer for this..

  • saloplass - surely T3 is not a drug - but a hormone replacement - something our body lacks and needs.

    I am not checked by anyone - just do my own test once a year. I take 25mcg x 2 and have had a perfect bone scan at almost 70.

    It is only classed Red due to cost and not to it's power.

    I am blessed - having moved to Crete in 2004. I buy my T3 OTC for pence and enjoy a healthy and active life - as does hubby with Hashimotos - at 77.

    Big Pharma makes huge amounts of dosh by training Docs to believe the FT3 test is not needed and that the TSH test is GOLDEN - hence the myriad of symptoms can be treated - blood pressure - cholesterol - depression - AF - and so on.

    I am happy to live in a bankrupt country - but one that is free and allows us to make our own decisions.

    drmalcolmkendrick.org/2015/...

    ....and its time to stop treating thyroid patients like children - so says Dr Kendrick :-)

  • saloplass my gp prescribes it. Though my endo initially prescribed it he said it wouldn't be practical to get the script from him regularly so he asked my gp to prescribe.

    I understand what you're saying about wishing to take t3 under the care of a doctor, but keeping that in mind, what's your plan for if/when you're told, as so many others here have been, that you're no longer going to be prescribed t3? Go back to levo?

  • I am still on levothyroxine as well - and unless the drug is totally removed from the UK prescribers then I am sure that my endocrinologist will still prescribe it for me. However I know that they are trying to reduce the supply for those who were simply prescribed it by their GPs.

  • saloplass with respect, I'm not sure I understand the point you're making. First you said we shouldn't self-treat and that a gp wasn't permitted to prescribe, then that we should only get t3 via an endo and gps can prescribe but won't in the future? On what basis do you 'know that they are trying to reduce the supply for those who were simply prescribed it by their GPs'?

    As I said, my endo gave the thumbs-up for my gp to prescribe, so I have 'the involvement of a medic' as you put it. Prescribing it doesn't seem to be a problem for my gp, except for them spluttering about the cost to the surgery (for which they got pushback from my endo, who said he didn't really see the problem). For me there was the practical matter of how I'd get the script from an endo I only saw a few times a year, thus the script from the gp.

    It seems like what you're saying is that those who get attention from the endo every three months will be okay but the rest of us are out of luck because we're subject to a lesser class of care from our gps, even if the care is in conjunction with an endo - ? Unless I misunderstood? :-)

  • With respect back too ---- I would not self treat by purchasing from abroad - obviously what others do is up to them. I have been told quite categorically that t3 can be dangerous. I understand this. I have been told that T3 has been prescribed too freely by GPs and that only consultants can now prescribe. If some GPs and consultants do not have to follow these conditions then. For goodness sake nobody is mentioning 'out of luck'! Some of us will get a lesser class of care from our GPs than others, and it is my opinion that the NHS will change drastically over the coming few years because of lack of money, lack of qualified staff etc. It is simply my understanding that GPs are no longer allowed or call it what you will to prescribe T3, with or without an Endocrinologists authorisation. It is my understanding that all T3 patients have to get that consultants authorisation along with their prescription.

  • See my reply above.

  • So what about people like me who have a GP like me who doesn't prescribe T3? I don't have a consultant either as I have to be referred by my GP who hasn't shared my echo scan result with me nor referred me anywhere. The only thyroid test he will send me for is to measure my T4 levels and mine are only low because I have an underlying heart problem and slowing down my thyroid is my body's way of preventing cardiac arrest and I really don't have plans to have another one.

  • It's an utter disgrace to think that so many of us were left with rapidly deteriorating health because of the medical profession's complacent attitude towards that bloody useless TSH test whose parameters were set so high before treatment started that most of us were on the floor, which was exacerbated by their total lack of knowledge of the T4 to T3 conversion issues that a lot of suffered before we were finally tried on T3, which then revolutionised our lives within weeks! If I had know in 2000 (4 years before I finally got a diagnosis and treatment with the 'miracle little white pill that will make everything alright again'... but didn't) what I do now, I would have got my own source of T3 and saved myself approximately 10 years of feeling like shit whilst watching my weight climb out of control and not having the mental capacity of a goldfish! How many of my present problems can be attributed to that neglect? Asthma, arthritis, skin like paper, hair that's a poor relation to what it used to be, eyesight that is rapidly getting worse... Never will I ever believe a doctor again, as long as I live and I avoid them like the plague. The average GP knows sod-all about the thyroid, which is why they perpetuate the lies of the BTA/BTF and start spouting them at you, to which I tell them to get themselves over to the ThyroidUK website where they will find a much better source of information!

  • I believe GPs have little idea of the correct tests to give to thyroid patients, that is why those of us in the UK need to contact our local CCGs and also NHS England.

    I am told that in the UK the T3 used is very expensive - does not mean I believe it but that is what the pharmacy at my hospital tells me.

  • You can believe it.

    evidence.nhs.uk/formulary/b...

    Click on the Sub-section at the bottom of the page. The price is given as £152.18 for 28 tablets. And that price is way out of date, it's a lot higher than that now.

  • .... nearer 300 these days I have read ..... 😠

  • :O

  • Mine is around £50 for 56 tablets including shipping....maybe they should buy it on-line...lol

  • Without doubt the NHS should be able to purchase from other than their one supplier!

  • I don't know which T3 you are taking but this is way too expensive. For similar amount I am getting 300 tablets with shipping included.

  • Thanks...my supplier has stopped selling T3 and the new supplier recommended here can offer me a much better deal ;;;the one in Greece

  • They are just under a tenner a tablet at the moment. Mercury are raking it in.

  • saloplass - do you honestly believe that all GPs and Endos care about their patients? We have to self medicate otherwise we'd eventually die.

  • Hehe, more accurate to say they care about their flow charts, and getting their boxes ticked to say they gave the approved treatment.

  • Don't I know it....mid March I woke up in intensive care and was told about the cardiac arrest and coma....T3 and all those who suggested it have been the biggest help on my road to recovery

  • Unfortunately, the GPs can order tests for full thyroid functions including FT4 and FT3, but the labs can (and DO) decide to ignore any of these further tests if the TSH is within the 'normal' range.

    Currently the cost of a pot of 28 loose 20mcg tablets is £258.20! Compare that with the blister packed Unipharma 30x25mcg tablets at less than 2 Euros and you can tell how well the monopoly that Mercury Pharma (now AMDA Pharm) is working for the Patel Brothers!

    And then today we hear that the courts have ruled that a monthly course of tablets to protect those at risk of catching HIV, costing £400/month, must be paid for by the NHS... At whose expense I wonder???

    I need 2 pots of T3/month at a cost of £516.40 to the NHS... They've already tried to take it off me once, but I argued that they would actually be making me ill if they did that and they backed off. There are already many well-known ways of avoiding infection with HIV, but I bet people like me will lose our life-savers in favour of those who already have a choice whether to get ill or not, depending on their own lifestyles. Go figure!!!

  • As Mike Freer said on PM today, 'We've never made healthcare decisions or funding decisions based on whether people are making the right choices' and it isn't really a competition for who is more deserving. There is money aplenty for the things for which there is money (eg Trident), and yet the nhs is being nickled and dimed to death. This shouldn't divide us, it should make us more protective of good care for everyone.

  • Well said. My thoughts exactly.

  • Couldn't agree more Zephyrbear

  • Hi GosportNancy,

    I am so pleased you are feeling much better! I bet it is was quite frightening. I know how I felt when I was in HD :( :) Are you in the UK?

    If you are, prescriptions on the NHS for T3 will be stopped shortly because the "GP/Endo's" say they are no longer licensed to prescribe, but it is because of the price - evidently it costs £9.22 for one tablet (only one pharmaceutical company supplying the UK). The doctors will say that it is not good for you and that it does not work or they will say it is bad because it can damage your heart and that is the reason it is being withdrawn. Load of rubbish, the only way it is bad for you is if you took it in excessive amounts, like 2-4 a day, like any drug. Some people in the past evidently have been prescribed it or used it, as a slimming agent/body building stimulant who also had a health thyroid, so then it would be dangerous.

    You can buy it from abroad evidently for as little as 8p a tablet. I have been on 20 mcg once a day for over 10 years and I call it my pick me up tablet, which has been dismissed by my current Endo :( But it was another consultant that prescribed it in the first place. Its all down to money unfortunately and not how we feel.

    Sorry to be the one with bad news, but just to make you aware. Hope you can still get it and for as long as possible, before sorting something else out and getting it from another source

    Take care :)

  • you take T3 once a day? i thought you were suppose to take it 2-4 times a day? is that not right or does that depend on the individual?

  • I can't take my T3 in two doses as each tablet is 25mcg which is my daily dose...I take mine at night now as suggested by some here in the same boat

  • Yes I only take one tab of T3 a day. But I take 250 mcg of T4 thyroxine at the moment, but that might be reduced when I get my next results. I have never heard of a Endo/GP prescribing more than one T3 a day. But I am no expert except for my own medication. I was born with a partial gland, so on medication all my life. I have always had quite a high dose of T4 (200 mcg) but then it was dramatically reduced (Long story) and because of that, it opened up a whole can of new problems which resulted in me being prescribed T3 over ten years ago. Now as previously mentioned, they are trying to take me off it. Who prescribed your dose then, as to me that is really high dose for T3??

  • I was prescribed 25mcg for the 3 weeks I was in hospital but I have had no more prescriptions since I was discharged on April 1st. I don't know who prescribed it as I found the tabs in my holdall soon after I came out of a coma and no-one among the staff I spoke to could tell me where the T3 came from.

  • i just see lots of comments about people taking multiple doses of T3. I am confused

  • HASHISmom34 you can take it in one dose or split the dose, whichever works best for you. I take mine all at once in the morning.

  • Same as punturedbicycle!

    I have only ever taken my one tablet once a day when I get up. I call it "my get up and go" - my prescription is 20 mcg. :) This was dismissed by my Endo which I found extraordinary, as she seemed to know my body better than me! (not) :)

  • My T3 wears off before my next one is due so I am experimenting with timing by taking the tabs 23 hours apart for a couple of weeks or so then 22 hours and so on until I am giddy attack free. Well...that;s the plan. I have no idea how that will pan out. I could always chart the experiment here in another thread and it might help someone else.

  • This may be of interest in this instance :\

    prescqipp.info/-liothyronin...

  • That info is shocking. Clearly I am not worth the extra money to keep me alive. Cardiac arrest is pretty serious in my opinion through lack of T3

  • Also this, couldn't find it when I put up the other link

    gmmmg.nhs.uk/html/dnp_grey.php

    PS Im originally from Portsmouth :)

  • I was born in Gosport...moved around a bit locally with family when I was a youngster but chose to stay in Gosport as an adult. My parents managed The Lord Chichester in Chichester Road in Northend for a year or so in the early 70's.

  • Ha ha I may well have been served by them a few times!

  • hi everyone. reading through this forum is so informative! I have a question. My heart rate is very, vey low and my blood pressure as well. Can that be due to my low levels of T4 but especially T3 and total 3 numbers????? It scares me!!

  • I was having regular low blood pressure related giddy attacks and regularly had falls. Then a physiotherapist who visited tested my blood pressure when I was lying down then sitting then standing. My pressure was normal when lying down, lower when sitting from lying down and then lower again on standing from sitting.

    I have only been using the regularly T3 since late June and I have the low pressure attacks less than once a week when I was having them at least 10 times a day before I started using the T3.

    I ran out of T3 for a few days recently and the giddy attacks came back

  • this is quite interesting. i have extreme;ly low blood pressure and very low heart rate and my T3 and total 3 are very low on the range. Haven't changed at all since being on meds.

  • Yes, unless you are a keen athlete. My heart rate was 55. Is now always 70-80, sometimes higher. I was under medicated when it was 55.

  • that is scary. my heart rate was 48 when i woke and now it is 51. Lowest when my TSH was 6 before treatment but my T3 and T4 very low and still are. My TSH is back up to almost 4 from 1.87 and blood pressure extremely low. yesterday it was 87 0ver 57 but has been as low as 73 over 51....... this is dangerous correct?

  • I believe there is a link - my heart rate was 48 on waking and my blood pressure and temperature are always really low. T4 never made any difference to my heart rate - but since taking T3 I now get up to 60 bpm which feels healthier to me. I was feeling dreadful earlier in the year.

  • There is a book on Amazon - The Thyroid and Heart Failure :-) You can look inside and just reading the contents is quite informative. It's all research papers from around the world connecting the thyroid and its workings with the heart. It's very expensive to buy .....

  • i have seen articles on this subject online and it is worrying me since i suffer very low heart rate as well as BP.

  • Maybe time to add some T3 if you have not done so.

  • yes i think so!!! I think I know from doing tons of research and you all on this site that i may need more T4 since I am back up to almost 4 TSH, but my T3 and total 3 do not move...... Time to look at the cytomel also i think.

  • Hi i had my blood test in April, it is difficult to get appointments with my doctor, so i have requested my results and they dont test my t3, how would i know if i needed to take t3 also.

    Any advise welcome.

  • Offer to pay for it at GP level or through Blue Horizon on Thyroid UK.

    thyroiduk.org.uk

  • To GorsportNancy

    I've had a similar problem and have cut back on my 100mcg of Levothyroxine to 25 mcg,... This helped me greatly but but I'm sometimes not very well.

    But thing is I don't take T3 I guess because I don't know what you mean by this T3.

    The reason I'm asking is because I thought that Levothyroxine contained bit T4 and T3.

    Can you please explain.

    Happy you feel better. Thank you

  • This info from the site most often recommended to patients in the UK by GPs..at least in my past experience

    patient.info/medicine/lioth...

  • Lily288 levothyroxine is synthetic t4, which ideally is converted into t3 in the body (at least for most people). If you can't convert levo to t3 (as shown in test results and symptoms) you can supplement t3 separately. Natural desiccated thyroid (eg Armour) contains both t3 and t4.

    Are you taking some t3 in place of the 75mcg levo you're no longer taking? Or have you just cut right down to 25?

  • Puncturedbicycle

    Thank you...I understood that Levothyroxine converted to T3 so that's why I wondered why so many on here were taking T3... It was confusing. How would I know if my thyroid gland does not convert to the T3... I suppose id be very sick like the people in some of the posts on here!? I've had to lower my dosage from 100mcg down to 25 mcg because from being hypo for years, I kind of went hyper along with feeling very sleepy when taking 100mcg ... I was feeling ok for awhile on 25 mcg but I've now gone back to feeling sleepy but kind of ok otherwise.. I have been feeling down because there's too many things I've missed this summer... going way too fast and it's almost over I believe this can be a factor what do you think? Thank you so much for your time...🤔

  • One way to see how you convert is to look at your t3 vs t4 blood results. Some people get a high t4 reading and low t3, which tells you the levo is kind of backing up and not going where it should. (I think there may be a fancier way to calculate it, ratios maybe?)

    Sorry if someone has already asked you this but have you posted your last blood test results? There might be some indication of what's going wrong for you there. My gut feeling is that if your bloods tell you you should be on 100 but you've reduced to 25 there may be something fundamentally wrong with how you're using the meds. Either that or you were misprescribed too much levo - ? Or your body doesn't like levo and needs something else, like t3. Some people don't get on with levo at all so they reduce it and for a while feel better on less, but the end result is that if you don't replace the thyroid hormone you're missing with something you won't be as well as you could be.

    You may say you feel okay but also you say you're sad because life is passing you by, which I think means you could be feeling better. No one wants to feel sleepy all the time. :-)

  • I read the "justification" bulletin, and it's chilliing. Sounds like Big Pharma got to the British government, because that is chapter and verse the reps tell the docs here in the States. I just read another article that says that American banks are going to start shutting overseas pharmacies down by denying payments as they are sent through...a push to keep prescription medicines in the hands of dispensing doctors where they belong, ha!

    This is a very disturbing trend, the idea that Americans and Brits alike now have another barrier to obtaining affordable and life-preserving medication, under the guise of "it's for our own good." FYI, I would appreciate any and all messages regarding other sources for T3, as my usual supplier has not been able to process my credit card or wired funds in the past week and I am getting VERY nervous.

    FYI, I am one of those people who can't process ANY amount of T4. Even a tiny dose of NDT sends me hypo.

  • wow- there is so much info in this thread!!

    Please can someone give me some pointers? I was diagnosed Hypo early this year. Long story short- my GP is lovely but very dismissive! He has tested my TSH once since starting Levo- and on my insistence they agreed to test one of the thyroid antibodies too (I'm not sure which!) my GP says it is autoimmune thyroid, but not Hashi's...??

    Anyways, I've been on 75mcg Levo for about 4 months now. Still feeling tired ALL THE TIME!! sleep is rubbish, manky skin and hair etc. etc. Most worrying for me is this god awful weight!! I exercise 6 days a week (horse riding, clubbercise , 5K runs and a military bootcamp!) and eat a clean and healthy (high protein, low carb, low sugar) diet- and yet I continue to gain weight. Now, I've tried to convince myself it is muscle and muscle weighs more than fat- but it is hard to justify when I have gone up 3 clothes sizes in 8 months!!!

    So I'm thinking T3 might be my answer. No chance of GP referring me to Endo- I can't even get an appointment to see him! I have a link from a FB group for T3 from Turkey- but seems maybe you guys know of different suppliers?? I am very sceptical of buying meds online, but feel more confident what with it only recently not being available on NHS due to cost.

    Any advice very greatly appreciated

  • Probably best to post your concerns in a new post so that more of the 41,000 people on this forum will see it and respond. Many people buy NDT from Thailand and T3 from Greece and Turkey. People will send you a PM with information.

    If you have Anti-bodies - then it would seem likely you have Hashimotos.

    You are entitled to have all copies of your test results with ranges for your own records and it will help you to post with more information here on the forum.

    You should have been re-tested 6 weeks after starting your T4 - did this happen - or were you put on 75mcg from the beginning ?

    Hope you soon feel better.

  • Thanks Marz.

    I will copy and paste post to a new thread!

    I don't have copies of my blood work- GP receptionist said I don't need them!

    I started on 25mcg for about 6 weeks, then went back and demanded an increase!! I was then put up to 75mcg (with GP apologising and saying that should have been my starting dose!!) and have been on that since. I had bloods done around the time I changed and have never had results. Should I have bloods done again before starting any T3- how else would I know what dose of that to take...??

    It's all so complicated- made worse by the awful brain fog and a GP that doesn't seem to give a monkeys!!

  • You are legally entitled to ALL your test results - Data Protection Act. See link below ....

    nhs.uk/chq/pages/1309.aspx?...

    I would suggest you have all the Tests you NEED done through Blue Horizon privately ..... see link below. Most people on the forum go for the Thyroid Plus 11 ...

    thyroiduk.org.uk/tuk/testin...

    Kits are sent to your home.

    The Test above also includes Ferritin - B12 - Folate - VitD - which all need to OPTIMAL for you to feel well and for the T4 to work in the body. No point in adding T3 until all these are at their very best. Low B12 can be the source of so much - especially brain fog. Many symptoms are similar to being Hypo.

    Time to take control and take ACTION :-)

    Everyone here will help you .....

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