Would you leave the UK to have NDT ?

I had a conversation with my father the other day. He is on Levothyroxine and has all the symptoms of still being hypo, but says that given his heart problems, diabetes and a host of other medical conditions, at the age of 70 he is not interested in changing.

I told him how it is getting difficult to source the thyroid -s that I use and how I would never , ever want to go back on Levothyroxine. He asked what I would do if I ever ran out , to which I replied '' get on a plane and fetch some back ''. He then asked what if they made it illegal to possess it in the UK - which is when it struck me - I would buy a one way plane ticket and go live in Thailand.

How many of you , like me , could not bear the thought of ever being back on Levothyroxine so much you would leave the country first ?

49 Replies

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  • I would join you if I couldn't source T3, now that the UK has successfully banned it, giving absolutely no thought to those patients who had a life and symptom-free with it. How wicked is that? The stress it has caused to many, many people.

    Your father might benefit with some improvement in his health if he did try some of your Thyroid-s. It contains all of the hormones our healthy gland would produce. Levo is inactive and is T4 it HAS to convert to T3 in order for people to feel well. Some doctors don't increase the dose due to the TSH alone.

    Maybe your Dad could have his FT4 and FT3 checked privately if GP wont do so. Why should your dad remain unwell due to the regulations.

  • So Greece would be likely stop for you for T3, or Cyprus. Notice how the countries that are favoured by Hypothyroidees are also hot !

    My father just goes along with what the doctors tell him a bit old fashioned , or maybe naive. I have asked him to have a private test , hoping that when he has seen the actual levels he might be encouraged to do something, but now i just let him be miserable on Levo. You can lead a horse to water ...

  • My mother was told that she didn't need any more B12 injections as there was no need her blood was fine. (after 30 years?). My Sister and I also thought that was good and she followed the advice and when nasty symptoms appeared after frequent visits to the doctors many times (and saw different ones), not one of the other doctors twigged she had had no B12 for months and months. My mother died of stomach cancer due to B12 deficiency and doctors' neglect.

  • That's terrible , shows how we all need to be vigilant and be prepared to check things out for ourselves. The internet and sites like this have probably helped save many lives and a lot of suffering.

  • Hi shaws . Have they managed to 'ban' t3 then? I know they have made it very difficult for new patients together t3. Just madness.

    I'm still waiting to hear back from local MP regarding T3 situation - they were talking to Health ministers office before replying to me - collared mp and her sidekick tonight at a local meeting - apparently I should have heard back by now, so side kick going chase it up for me....will be interesting to see what they come back with....probably some repeated party line - I hope not!

  • Apparently, despite many on this forum having T3 withdrawn The Association has made the following statement. I don't think it has been passed on to doctors who have withdrawn it from their patients who in desperation have been asking where to source it.

    We have enough to bother us without having T3 withdrawn. This is a link which was posted last month.

    healthunlocked.com/thyroidu...

    Also the doctors have been told only TSH and T4 is necessary to be tested. The Association seems to be completely unaware that it is T3 is the only Active thyroid hormone and that drives our metabolism not T4.

  • Hi shaws, ah yes, I did see this, when I saw your message, I wondered if something else had come out and I'd missed it! I saw somewhere that they are 'red carding' (for lack of a better term) for 'new' patients. But the guild lines for existing patients are, supposedly, to follow. And I was aware that a lot of people have had it withdrawn, which I find totally immoral.

    I don't understand how they can issue it to someone and then take it away, when they know that person needs it. Without offering a viable alternative. There should be a crime entitled 'Pre-meditated Neglect'. These so called Dr's must know what they are doing.

    I'm dying to know what these 'cheaper alternatives', that are available, are???? It is just a joke...well would be if it was funny!

    I'm due a review and waiting to see if I am going to have problems, hoping not, as on t3 only, so can't go back to t4.

    I thank all you fantastic, supportive people on here who have posted all sorts of useful information which has given me ammunition to fight with, should I need it, both for myself, and for my son.

  • If in the UK T3 for one month's prescription it used to be around £20 and has crept up with each buyout of the supplier by different Pharma companies to around £300 per month. I don't know if that's for one pack or more. Others will correct my statement where it's wrong.

    There is only one licenced T3 in the UK and it is supplied by Amdipharm (they've had so many name changes).

    A non-licenced T3 can be prescribed on a named-patient basis and I think it is Cytomel or Cynomel I think this may be around £30. This means that the GP has to take full responsibility.

    thyroiduk.org.uk/tuk/treatm...

    This is from a past post:

    healthunlocked.com/thyroidu...

  • Well if T3 's banned then I'm still being prescribed it!

    I had to jump through hoops first mind to prove that I need it!

  • Hi blondpalomino I'm still getting T3 too. At the minute. As shaws pointed out, the guidelines seem to be stopping the issue of t3 to new patients, with guildelines regarding patients already prescribed t3, to follow at some point in the future. But many GP's have stopped prescribing to people already on t3 - against the guidelines, effectively 'banning' it.

    I think it is quite usual to have to jump through hoops to be prescribed t3 in the first place - I spent 20+ years trying to make t4 work for me - getting more and more ill - jumping through hoops then to get t3. And yet the NHS are quite happy to project this hormone as a low benefit/value over the counter item, that has cheaper alternativeS available.

    My opinion, for what it is worth, is, if we don't 'all' stand up now and be counted, and fight for t3 to remain on prescription, the chances are it will eventually be removed...leaving us where? Having to self source it from abroad, hoping we are buying genuine medication. Until the government then stop imports....they are already sending some of the supplements I have been on, back to US. Introducing stricter controls, apparently...? Closing ALL doors.

    I have been 'lobbying' anyone I can think of to email - local MP, councillors, CMA, Times journalist (not interested!) BBC R5L - following their broadcast with Adrian Chiles a few weeks ago.

    But we will only get anywhere if enough people do the same, let 'them' out there, know something of the numbers of people that are being affected by this. And how we are affected by this narrow mindedness. If they think it is only one or two of us they are not going to do anything. There are about 55k members on here - who are on here because they cannot get the right diagnosis/treatment. They are either not recorded at all as HypoT or recorded as ok on t4 - as disinterested GP's, having refused further help, have left them self medicating.

    I don't feel any of us can be complacent about still getting t3. How long for? We know we need it - the NHS are convincing everyone out there, with false propaganda that we don't need it. How long before they take it from the rest of us. And what about all those people, going forward, who are going to need it?

    Rant of the day over.... All the best.

  • Hi UrsaP,

    I quite agree with you,I couldn't have put it better myself! They say there's only about 1% on this medication, but that's only because the majority of people that were on it are now buying it themselves from abroad. I can't blame anyone from doing this - if I couldn't get it then I would be looking to do that too, but it's not helping the situation here.Now supplies seem to be running short from other European countries because they are being inundated from people in the UK buying it.This will eventually lead to the cost being pushed up in other countries,and it will be the same situation as over here.

  • Hi blondpalomino I think they have just picked that 1% out of the air! They are going by those 'officially' being prescribed it. The same way they say the 'vast majority' are doing well on t4. That may be the case, but how do they know, when they refuse to acknowledge that all our complaints are due to 'thyroid' and taking 't4'? I was ignored for 20yrs, telling them it was not doing me any good - I had to go privately to Dr P to get sorted. No GP has asked me how much of a benefit t3 is to me? They do prescribe it, so far, but seem to avoid wanting to discuss anything to do with T3.

    If they don't know the benefits, they don't have to admit them, or presumably record them.

    And as for all those 'invisible' thousands, out there, self medicating, well they are not on anyone's records to bother about...so don't count...presumably?

    If they stop prescribing we will have no choice but to self source, but like you say the pressure is then on abroad too - and no doubt the government will clamp down and stop us doing that too. Because, if they allow this 'ban' to go ahead, they are not going to want us all out there, getting it from elsewhere and continuing to prove it's effectiveness.

  • Luckily I have a nice sympathetic doctor,who has listened to me, and said she just had to justify that I needed it.She asked me to trial Thyroxine alone,I agreed as I wanted to keep her onside.After 4 months of various doses,I told her I just wasn't well without the T3,so she put me back on it.How long for I don't know,before they stop her from prescribing it. I just can't believe they can do this in this Country!

  • It is scary. I hope there will be enough of an outcry to stop it - but they need to reintroduce it for 'new' patients too. Going forward there will be more people who cannot regain health on t4 alone. You are lucky to have such an understanding Dr. Many haven't. I've just had an email back from a guy who is saying the D Mail may be interested in doing a feature. Lets hope so.

  • They have a clause that says if the doctor believes it is needed for clinical reasons it can still be prescribed, but lots of doctors appear to have stopped it altogether hence the posts on where it can be sourced.

  • It's just pot luck then if you have a good doctor or not.

    I saw another doctor in my same practice when mine was away,who said he had no patients on it now and would not prescribe it.When I asked what if you were ill without it, he just shrugged his shoulders!

    Lets hope my doctor doesn't leave any time soon!

  • He was extremely callous by not caring about his unwell patients. He is in the wrong profession.

  • blondpalomino Not worthy of the title!

  • Tosh its not difficult to get Thyroid-s

    its just that you can no longer use paypal for meds thats frustrating

  • Your right, I have just purchased another years supply of thyroid S. I had to use Master Card to pay instead of Visa or paypal.

  • You can still buy it with Paypal if you look in the right place.

  • not at the same price of the supllier my lot use

  • CAD100 = £57.80, Thyroid-S x 1,000, is that cheaper than yours with free P&P. I bought some when it was CAD80

  • you cannot compare price in canadian $ to the UK price bcos of currency deviations

    but thats about the same price as my supplier ....it used to be much cheaper till that Canadian clown Mark Carney talked down the UK and trashed the pound

  • I'm with you on that aircraft

  • I've never taken levothyroxin, & I'm not in a position to leave, as much as I'd really like to.

    Hopefully, I'll be able to carry on importing WP, & having a Hypo Holiday to Greece for cheap T3.

  • Leverette Just so wrong that you have to!

  • So wrong that I had to diagnose myself after 40 wasted years being ill!

  • Leverette Yes, so very wrong, and not acceptable. This is something I feel so frustrated about! At 19, I didn't know much about thyroid, but knew I had a problem with it, had goitres, saw a specialist, it took me another decade or so to get a diagnosis, 20yrs on t4 - rubbish- fought for t3, got it, saw Dr P -ended up on t3 only. I'm 55 now, been on t3 only about 7 yrs. So much better, but still have reoccurring problems - usually due to low adrenals/stress, hence on here. Only found this forum in last few months.

    It is our wasted, substandard, lives that gets me so angry now. Especially when I see my son struggling with similar issues and getting the same attitudes and failing treatments, as GP's continue to avoid all issues thyroid related!

    I have just posted asking everyone to write/email local mp's independently...if enough of us do surely there are enough of us on here to be heard....if only....

  • I've said before, we need to set up a "Dallas Buyers Club" type of organisation!

    Ut'sa pity Tuk can't liase directly with the NDT & T3 manufacturers then sell on to us. :-/

  • Leverette Have you asked TUK? What a great idea! I'd bet there would be blocks....but... (Especially when know that my usual Adrenal and thyroid supplements have been turned back from port - due to red tape. Cracking down on imports - that is going to be our next problem. Stop t3, and then stop anyone self medicating! One of my sons said it 'Population Control'!

    It is almost like 'the powers that be' are determined to do everything they can to stop us getting well.

  • I wondered if there's an agenda to play down the numbers of people who are hypothyroid, as some suggest it's as a result of industrialisation. I have also heard the theory that the powers that be want flouride in the water to make people hypo and enable a dumbed down population.

  • Maybe we are all just waking up to the underlying agendas. Our pollies are just the mouth pieces and I think do not see the whole picture.

  • The powers that be, the pharmaceutical companies want us taking lots more crap that doesn't work, ie the range of drugs I was prescribed for FM that have done permanent damage why sell one cheap effective medication when they can make billions from things that never work, & perpetuate a range of money spinning wrong diagnoses!

    I'm hoping the greed of the companies that sell to us privately, will counteract any measures to prevent us from medicating ourselves, or it'll drive this sector of the drugs industry further underground, &. Further in danger of drug sharks & charlatans.

    I had an experience of being badly hypo again from one missed dose & lack if experience changing meds. I really couldn't face the prospect of being like that again.

  • I was walking past a pig farm the other day. I thought to myself , if it comes to it , I will have your thyroid gland hanging in the pantry.

  • I'm Veggie, aside from NDT. I've wondered if there could be a market for piggy thyroids, & what the meat industry does with them, since they're supposed to stay out of the food chain. Disgusting to me, but how much of it would one need compared to a grain of NDT?

  • Your NDT is a piggy thyroid

  • It is, but dried & compacted, as well as dose standardised, not straight from the piggy.

  • I get ye .

  • Yes and been around for a very long time.

  • This is so true and not just in the UK

  • Can you just buy it over the counter in a Greek pharmacy? Enough for a year?

    (Feeling a holiday coming on...) :)

  • Yes, indeedy!

    Be aware that most pharmacies only stock a few packets, but will offer to order for the next day. :)

  • You don't have to go to Thailand there are many countries that have NDT. I certainly hope it doesn't become illegal!

  • There are different brands of NDT though, and just like levothyroxine, not everyone gets on with every brand. Plus in many countries it's prescription only, whereas it's an OTC med in Thailand, so you don't have to beg and grovel with a doctor to get it.

  • Makes sense!

  • I have mine made up at a compound chemist here in Aus but it is a privat scipt item so not cheap but it works for me.

    The fillers can be controlled to meet over allergy requirements such as the lactose content and also gluten free.

    Every batch imported is tested so the pharmacist knows the quality.

  • If we were all to stand up and be counted - by emailing MP's and anyone else we can, to get our points out there, we may stand a slight chance?? Maybe??

  • Hi all, following into everything being said maybe we should all sign this petition on change.org, if enough of us push hard enough maybe they will finally start to listen to us when we tell them we feel crap... look at what a single petition on change.org has done for tampon taxes around the world

    change.org/p/the-secretary-...

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