Liothyronine stopped

Well Tuesday morning I had a call from one of the receptionist at my Drs surgery. She informed me that Dr L had received a letter from Somerset CCG, the letter stated that I had lost my appeal for my continued prescription of liothyronine. The receptionist was very embarrassed to tell me Dr L could no longer perscribe me liothyronine and wanted to give me a low dose of thyroxine to trail. I can't take thyroxine was my reply even at a low dose I have tried before, the receptionist said she is not medically trained to be able to answer my questions. " so why the **** are you ringing me and not the Dr" who is medically trained to answer my questions. I'm thinking of putting an add in the local paper.






For an interview ring -----------------

Rant over!!!

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37 Replies

  • Pixielula,

    Sorry to hear this. It appears the net is tightening all over as mine is being withdrawn too ( Kent). This is my second health authority to withdraw T3 (Brighton).

    Luckily I consider my knowledge (with the help of this forum) has expanded sufficiently enough to now self medicate.

  • Well that's my only option now..... Do you think my advert might work. Perhaps there is some difiant old goat of a dr out there who will put two fingers up to all the regulators and do what's best for their patients!! I have thought about marching up and down outside there offices with a bill board. I could write

    Somerset CCG

    Why are you killing me?

  • Ok so we now know not to move to Kent, Brighton, or Somerset maybe we should start a drop list of places Not to move to...... A hot list of places we should move to would be handy.....

  • Haha, yes you would have to physically move there .....

    as having chased this once, Kent has withdrawn mine because I am out of area.

    I think your advert is absolutely brilliant but any doctor worth his salts is afraid so his salts aren't worth having anyway ! ! ! .....

    The only way out is to set up a nail-bar with a little hut out the back manufacturing T3 which we could pass to clients on their way out with a wink .... ;o)))) ... BUT as this is ILLEGAL it is probably better to buy T3 from abroad for our own consumption.

  • It would be interesting to know how much a full page advert would cost!!

  • Better spent on T3.

  • problem is its the entire Government prescription dept that's putting the squeeze on CCGs across the country to stop prescriptions of T3 clearly orchestrated by BTA/BTF/RCP and of course the outrageous charge the only UK supplier Mercury Pharma are making for it

  • Do you think all nail bars are covers for illicit operations? I once had a meal in an Indian restaurant that most definitely was! But I don't think they were dealing in T3!

  • Haha,

    Those or laundrettes for all that dirty money ......

  • lol

  • I am so sorry to hear you have lost your appeal. Write to your MP tell them that you have had T3 withdrawn and T4 is killing you. Explain that some lazy feckwit in the NHS is not doing their job and paying £200 + for generic T3. That you can buy branded T3 over the counter in France with a doc script for approx 1.78euros. That due to the arrogance and ignorance of a handful of medics who in their infinite wisdom have decided that T3 is not necessary( although I wish them all a week of my T4 life and I'm sure opinion would change overnight.)Contrary to the actions of 300,000 + patients taking T3. Probably many more who are self medicating. Make sure the fact T3 has been refused is on your medical records and get a full blood panel including cholesterol. That's what I intend to do anyway. I think everybody who has T3 withdrawn should lobby their MP for better treatment for thyroid patients who do not respond to T4. There should be a complete overhaul from diagnosis to treatment in my humble opinion.I am going to be a pain in the proverbial to anyone who will listen when mine is withdrawn. I am just waiting to hear via a third party of an English speaking French doc near Roscoff talk to secretary and see if they are willing to prescribe a years worth at a time. Otherwise I'll be over to see Marz in Crete. If you do find a brave doctor please let me know as he will get very busy I guess. Best of luck.

    Ps Ask for NDT 😂

  • Have a few spare weeks in the Studio :-) Special deals for Thyroid UK forum members ....

  • Thanks Marz.... I have my colonoscopy Tomorrow then I'm going to review my options

  • Hope all goes well ...

  • I do not need T3 but have written to my MP about the cost and had replys from Ministers who say that patients who need it should not be denied it on cost grounds alone.

    I was going to say go to Greece and now Marz has made a great offer of a discounted holiday in Crete which I have been to once with the Ramblers( when i could ramble) .A beautiful Island with excellent food.

  • Thank you Treepie, now we know what ministers are saying we should request that they respond to the CCGs directly on our behalf since they are clearly not taking much notice of us. I wrote to my MP about the fact there is only one source of licensed T3 in the UK which is outrageous as no competition and the supply is somewhat unreliable (off the market twice within the first year of my taking it). But of course it's a conspiracy as the medics sat in their ivory towers deciding that the minions do not need T3 don't want to go to the effort and/or cost of licensing. I just phoned a Boots pharmacy to find out how much Cynomel was on private script. Can't get it. But quoted £208.41 for 60 Tabs generic. Am going to contact Aventis-Sanoffi and find out why they don't apply to licence in the UK

  • Exactly. The problem is the bureaucrat bungler paying this price for T3. Can we hunt him down?

  • Good idea ,Ministers are well aware of the price and they and or the Medics in charge of purchasing are lazy,incompetent or just do not care.

  • My GP canceled my prescription for T3 as well. This happened in March so since then I am ordering T3 on my own from Greece. It's not expensive and I don't need prescription.

  • I live in Kent and only just got prescribed T3 thankfully.

    From all I have read it really seems as though we need to come up with an idea to get the attention of politicians, the NHS and every other person that could help us insist on getting T3 and NDT!

    Does HealthUnlocked have any ideas on this? It would obviously be a much better idea to have an organisation doing the talking with all members taking part in whatever way they can.

    Look forward to hearing your comments.

  • I have been on t3 only treatment for the best part of 10 years.... March on Downing Street with a petition, NHS WHY ARE YOU KILLING US!!! that would grab some attention

  • Suggestion 1 is very acceptable :)

  • Haha..... You don't like my attention grabbing statement!! I was thinking of putting that on a sandwich board and marching outside Somerset CCG offices...

  • Pixielula I was thinking of your life, carrying a sandwich board could possibly finish you off! No offence meant there by the way!

    Now selecting stories and sending them to every newspaper in the land on the same day might be a good idea somebody will surely take notice. What do you think of that one?

  • Oh I'm a tough old bird and possibly the most tenacious person I know!! At least if it did finish me off it would prove my point !!!

  • Sorry I missed this one, I believe that is what keeps all of us going, that and the hope that one day we will get our lives back and have a blast!

  • i feel like I'm going rogue!! But it's the frustration talking!!

  • I hope that's rogue and not rouge!!

  • ha ha yes it is

  • The law says uk chemists must only buy from uk pharmacy. Not sure why as we are in the EU and should at least be able to buy from other EU countries. Because there is only one manufacturer in the UK they can put the price up as much as they like and they know there is such a demand for it they can do this. It is us, who need it, who are keeping this going. We should not be fighting so much for the NHS to be paying this extortionate money but demanding the law changes where there is competition and the chemists can purchase from any other reputable company anywhere in the world.

  • UK pharmacies can and do obtain supplies of some "foreign" medicines in special circumstances, though I think they have to obtain then from importers who are appropriately licensed. For example, a few people do get Aliud or Henning/Sanofi levothyroxine from Germany as it is lactose-free.

    I do agree about being able to buy from EU countries.

    Some medicines now appear to have a European licence rather than separate ones in each country. See:

    Not entirely sure how it works - but there are many more medicines there than there were when first I visited the site.

    Must be a major help in smaller countries which cannot manage/afford a full licensing system themselves.

  • What I do t understand is if uni pharma out price themselves from the market and all our t3 is withdrawn they won't have any customers left in the uk. Perhaps it is them we should be targeting too??!

  • Yeah I know I'm prescribed it just brain fog, it's not that important is it you know what I meant?

  • Ironically just got email from 38 degrees to sign petition re NHS being scammed by pharmas who have monopoly on a single drug.

  • Hi Pixielula

    I have only just seen your post. I am sorry to hear that you've had your T3 stopped by Somerset CCG. They clearly have decided to just dig their heels in and not look at cases on an individual basis. As we all know this is down to the cost and not medical need.

    Have you seen all the recent articles posted by Airmed. I have sent copies of the newspaper articles on the huge rise in cost of some NHS meds, in particlar T3, to Rebecca Pow. She is also supposed to be writing a letter on my behalf to Somerset CCG - so far she has done nothing and I've been communicating with her office since January.

    My T3 was stopped at the end of 2014 after being on it for 7 years. My GP was not prepared to fight my cause and the NHS Endo's were only prepared to see me if I self funded NDT. Needless to say, I have not been to see them and am doing quite well self medicating and self monitoring.


  • Hi Pookie50, my last prescription of t3 is almost finished (I've been on it for about 15 years) due to it being withdrawn. Please could you tell me where to get a reliable source of t3?

    Many thanks.

  • I have sent you a private message.


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