I take T3, because I need it to stay alive and working. I'm a reasonably balanced and happy chap (although that's not always been the case, qv previous posts over the years .) So having finally found a seemingly tame Endo who would support my current regime of 20mcg T3 + 125mcg T4 I was somewhat disappointed to find that his latest letter to my GP included the statement that he could not 'clinically support the very expensive T3 therapy, preferred by the patient'.
Well I can't logically support the very expensive Badgerwomble consultant who , when I asked him 'Are you going to test for Thyroglobulin? ' replied ' And why, would I do that?' turned the page in my notes and said 'Oh yes, of course'. What had we been talking about, I wonder? I truly think I should have spent this time talking to him and his students about what it is like LIVING WITHOUT A THYROID GLAND. It doesn't get any better 30 years on - regimes that worked OK for a decade can't be relied on - It takes ages to realise you're undermedicated as you get older, but your GP and Endo won't risk ( to them) trying T3. ( Place you own expletive here)
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mickstability
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I have nothing to add except that I feel for you. I have no idea why they're so entrenched in their ideas about t3. I'm happy to pay a reasonable amount of money for mine so cost shouldn't be an issue, and I have no reason to believe it's harming me, but if I don't have it I can't function. The doctors who believe that t3 adds nothing to the equation are so very adamant. I guess they think we're either lying or deluded.
noone likes putting themselves sourcing stuff out or spending money unnecessarily. The fact that so many of us do just that for our t3 has to mean we Genuinely feel better, we ....just ....need it. Simples!
Errr....
I think the clue is in the words ' very expensive T3 therapy'... it's too expensive for the NHS to support, and unfortunately for anyone who feels better on it, they're going to have to buy it themselves in the end.
They're also reluctant to prescribe in the US so it is more than cost. I suspect they think of levo as less risky, but they also don't know much about t3 so it adds up to suspicion and ignorance about t3 and misguided confidence in levo.
"very expensive T3 therapy" ?? It's definitely a scandal, in Greece recently a pharmacy there were selling T3 at 2 euros per pkt. The NHS are being ripped off at our physical expense
Yes many of us are in the same dilemma. I have been on T3 for over 10 years and I find it helps, when my prescription runs out, I will have to buy it from abroad. I have told both my GP and Endo that I am continuing to use it.
I had such a bad consultation recently, that I have actually had to make an official complaint. My recent results have shown that I am actually on the right medication and levels for T3. My T4 is a little high, which I expected and I have reduced them myself (due to be retested tomorrow). I was told by my Endo that the Lithyronine does not work, but causes harm. All the subsequent tests she did, proved her wrong.
We all know that T3 works. The studies they refer to, have no relevance to us as it refers to people who have normal thyroid function but take T3 and or T4 as slimming and body building supplements - so obviously it is going to have adverse affects on them. It does my head in. I was told by my Endo that there was not enough evidence to suggest that the T3 drug works and due to the price, the money would be best spent on more worthy causes! So as I am in the minority, (her words) we are not deemed worthy! so to that my reply ended in "off" literally.
All of us want quality of life and health not necessarily the body beautiful.
Nothing will come of it I am sure Kitten1978. But I felt better for doing it. I even asked the Endo if she had a thyroid condition herself - her reply was "no" - so with that in mind, how the hell can you sit there and tell me, that the T3 doesn't work and how I am feeling?? - No response. All the tests done though proved her wrong. I was born without thyroid function and was ok on T4 only up until I was 32 and then everything changed - all down to mismanagement and lack of knowledge in my opinion by my then GP. For the last 20 years I have had numerous health problems, all because of this. So I have no faith in the NHS regarding my health. I am back on my original T4 drug plus a further 50 mcg and the 20 mcg of T3. I know the T4 will need to come down, as it is a little high, but I am ok with that. However, I will not stop taking the T3 supplement even if I have to pay for it myself.
I agree with you: how on earth they could know what we are going through if they have never experienced it themselves? There should be patients' advocates in endocrinology services, like there are in mental health services. People who know what it feels like to be defficient in thyroid hormones. Making a complaint is like a little drop of water. It won't make any immediate difference but little drops add up and become a big wave. Other oppressed groups have been fighting for years for their rights and things have been improving for them. We also have to do what we can to object to being mistreated and poorly medicated! So THANK YOU once again for making an official complaint!!!
"that the Lithyronine does not work, but causes harm"
shows how uneducated she/he is, considering that T3 is required in all of our billions of receptor cells - Not T4 levothyroxine. If we dont have an optimum dose of levo we wont feel well. We may not improve on levo for one reason or another but have a life when on T3 or NDT.
I know it is ridiculous isn't? She told me she didn't believe in it either and would not prescribe it. If I insisted, she would discharge me back to my GP and seek another Endo, who unlikely prescribe it due to costs. In her view there was no scientific evidence that suggested it worked and that the money spent on it, could be spent elsewhere on more worthy causes! Hence the reason I made the complaint. So I think I will be buying it - they won't win but it will cost me. A cost I am willing to pay, even though I shouldn't have to
I have saved the archive information and keep it in readiness for the battle as ammunition. Is there any more recent information? The Endo I am under and my GP - say that "people are fine on T4 alone" which we all know is crap.
How many complaints does your GP get and how many times does he tell the patients the are 'normal' but give 'other' prescriptions for their remaining symptoms? They should have no symptoms when optimally medicated and need a prescription for thyroid hormones alone unless they have another 'condition' .
I posted a good article last night. I think doctors should have a refresher course on what goes on when hormones are out of whack.
I totally agree! I think the big thing in the UK is the price. They admit it is a "red traffic light" drug due to the price but they use the other crap with it. Can you point me in the direction of your latest article please?
You can buy it from abroad for as little as 8p a tablet. However, if message me, I can give you the links I was given (we are not allowed to name the sites on this forum, which is understandable). I haven't used them yet, but they seem reliable. I am going to have to do this soon myself as I only have one prescription left.
It's so sad that PRIVATELY they agree t3 is necessary in some or many cases, but will not say or do anything about it. How can we help these "t3 acknowledging doctors" to come out of the closet?
What a mad world the NHS is. T3 cost peanuts five years ago and theyve allowed something in the region of a 1000% increase in cost from their suppliers who are raking it in making millions....t3 does not cost more to make -suppliers rip off the NHS and all the money we tax payers put in. So instead of dealing with this rip off they blame the patient and tell them they dont need the meds or its too expensive and they have to rationlise resources!!! Ludicrous!!
So sorry to hear that you and others are on the end of others incompetancy.....
I buy mine online from Cyprus, each pack of 30 tablets has the price of 1.16 Euro printed on it. I pay 10 times this price to buy them online and have them posted to me (includes the bank draft charge) but it's worth it to feel better.
I just can't understand why the NHS is charged so much - what is going through the minds of the buyers at the NHS?
Somewhere in the back of my head, along with a load of other clutter, is the thought that the medical profession cannot take you off a drug if you are doing well on it, just to save money. If you have been taking any drug for a while and doing well on it, they cannot just remove it to save costs. Maybe someone can find the relevant legislation?
serenfach I was pointedly asked by a member of our local Healthwatch whether I had been asked if I was willing to change from Goldshield Eltroxin. I told him that I hadn't been asked but was just changed to Mercury Pharma Generic Levothyroxine. I gathered from this that it was something that they could not really do, but have no absolute proof of this. Hopefully, I shall be seeing this chap soon and will ask him further about this.
Yes what you say is very true waveylines! I think like so many of us, who have paid our taxes over the years and supported the NHS - we are then treated like this out of pure greed by others aka the pharmaceutical companies. The most common sense way is to seek other suppliers but they won't. So we all suffer, but in my opinion - they won't win. I think it is disgusting that we will have to pay for our medication when we shouldn't because of the chronic life threatening implications, but at the moment, we have no choice. I can't wait to see the face on the "professionals" when they try to tell me that I didn't need T3 as my results indicate everything is fine, then I can tell them - well actually, I have been taking it and will continue to do so who is the twits now ha ha!
It's about time the NHS employed someone who knew something about purchasing and got the cost of T3 to a reasonable level. If other countries can do it ...
It's totally unethical. The cost and just taking people off this. I'm wondering if we can contact someone in the media. I wonder how many of us have proved that we need T3 from our experiences and how many have had it and been taken off. And again how many are sourcing it elsewhere. The stats would make interesting reading and could be quite compelling. Though these endos are very good at not listening to patients experiences. Or choosing to ignore then want to throw us on some cheap antidepressants instead to shut us up.
From observation, there are four main reasons this is happening:
Too many doctors/consultants treat by laboratory test result and not by clinical signs and response
Too many of the profession appear to be in awe or fear of the views of a particular consultant who's main reason for not prescribing is that he had two patients who died years ago to what he ascribes to use of T3 in those patients (although I do not know if he broadcasts this fear, or finds other reasons to justify his position), although I am not convinced that their deaths might not have happened anyway, or that there is an evidence base in medicine to suggest their problems would afflict all users. (Otherwise, why are we not seeing the large numbers of you all using T3 dropping dead on a daily basis?) Properly managed T3 use should be eminently possible. You have to conclude that aim is either too expensive, or some medics are incapable of successful management in partnership with patients who have a good idea how their condition makes them feel.
There are no endocrinologists out there with hypothyroidism, or have personal rather than professional contact with people with the condition, who have looked at the evidence base of patient experience of T3 supplementation, or tried it themselves if they felt like crap on just T4. We have found a very approachable, caring consultant we can have a conversation with who, when I put it to her, conceded that in fact, the studies which have been done are not directly applicable to cases of total thyroidectomy due to thyroid cancer, where the physiological drivers and feedback mechanisms do not strictly apply anymore, so maybe a new approach is needed
The main driver is now one of cost, where listening to patients, patient care, good medicine rather than dogma, and a willingness to work at the boundaries of knowledge, are all suitable for sacrifice to the demands of the accountants and treasury. The balance of the NHS, if anyone would listen to its front line clinical staff, is now too far being driven by overpaid managers who have to justify their existence, rather than questioning whether their presence is important enough for it to lead to reduced funding available to front line patient care. The fact that they cannot negotiate a correct drugs purchasing structure suggests incompetence. I would predict that before long, T3 having been removed from the available repertoire for patient care, you will see the price of T4 rocket to make up for the shortfall in income. This will happen because of the same inability to negotiate pricing. It will depend on certain political standpoints creeping in, and will have nothing to do with patient need or care by the individuals who should be making more noise about their professional responsibilities to their patients rather than their 'employer', who in the final analysis should be the taxpaying public, not the treasury! Wasn't intending bringing in politics, but on this, it is almost impossible, and to an extent, everyone needs to decide their political position in order to express an honest clinical opinion, as the two need to be coherent. At the moment, the system is behaving incoherently. For some, to be honest clinically may demand a change in political position.
My background is one of being a veterinary surgeon who's wife had total thyroidectomy for 320g thyroid, after I had to demand a second opinion, only to find that during surgery, papillary carcinoma with lymph node spread was found locally, so radio iodine ablation therapy followed. T4 is inadequate and T3 added improves thing a lot but is not perfect. Our new consultant accepts that withdrawal of medication with resultant resumption of adverse clinical signs constitutes evidence of clinical efficacy of medication when it has happened regularly. Our local NHS Trust relies on a 2015 position document from BTA and not talking to us and issuing a dictat to our GP and an impersonal letter to my wife. As the original endocrinologist, from whom we had to escape with the second opinion, used the evidence base 'Thyroid carcinoma is as rare as hens' teeth, and if it turns out to be that, I will eat my hat', no biopsy taken, and was employed by our local Trust (getting to be an oxymoron if ever there was one), you will forgive my scepticism. I feel a battle brewing for us.
I think you'll find the large numbers using T3 who are dropping dead on a daily basis tend not to post about it. Actually, even if people really did "drop dead from T3", shouldn't it be their choice whether to accept that or suffer a longer life without T3?
May I ask some questions from a different perspective? Have your and your wife's experiences influenced how you treat animals? Are there any veterinary T3 products on the market? (No - am not thinking of people swapping over to them, it is just out of general interest.) Do you prescribe T3?
I'm ordering T3 online because there is no way I can get a prescription. My GP kept me on Levo for years although I felt terrible and gained 30 lbs during that period. Still nothing could change his mind and he refused to give me T3 saying that it is "dangerous"! I feel better now and I started to lose weight, so doing it on my own was the right decision for me.
There are two elements to this, one is the big scam that companies are pulling over the NHS cos they know they can through a loop hole and cos they know the NHS is too incompetent to fight back. T3 is one drug -imagine how many other generic drugs are being used to profiteer. -this will be costing the NHS millions. All sorts of drugs have rocketed in price including anti depressants.
The other is the ridiculous prejudice against any T3meds the drama that has been sold around their use of which defies all logic! Even research is squashed with often poorly formed biased research being used to justify the non continuation of T3 meds. Such is the propaganda that many in the field wont endorse out of fear of prosecution by medical bodies such as the GMC -it has taken on a whole madness of its own. A witch hunt.
Its nuts that many people in this country have to go and buy life saving thyroid meds off their own back to feel well. My GP once told me how well I was on the meds I WAS buying out of my own pocket -far better then the meds they had been prescribing she admitted! Really? In all conscious how can any doctor not see something is terribly wrong!!!!!
If the NHS doesn't take a stand on point one the world of mediciine will get a whole heap worse as the NHS gets robbed increasingly of its money. On point two am not sure how you stop madness......maybe Diogenes wonderful research will slowly turn the tide......my understanding is that you cant reason with madness. Not sure how witcH hunts are stopped? Anyone?
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