CCG blacklisted Liothyronine T3

I have just got home from work today to find a letter from my GP stating the CCG have now blacklisted T3 so they will no longer prescribe it. Is this happening everywhere or just my area-Lincolnshire??

I can't go back on T4 only it really didn't work for me. The addition of T3 completely improved my life. I don't know what to do right now. I've contacted my Endo's secretary to ask him to call me.

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19 Replies

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  • Hi Occamoo,

    It's happening piecemeal, not nationally.

    British Thyroid Association have issued the following statements. It may be worth contacting your GP and CCG with the BTA statements to appeal the decision and perhaps copy your MP on the correspondence.

    british-thyroid-association...

    Send me a private message if you want to buy T3 online until you can get your prescription reinstated.

  • Hi Clutter

    Thank you for your reply. I have just got off the phone to my Doctors Surgery and they have confirmed it is a costing decision. I can appeal so I will follow that route. If not successful I will come back to you. Thanks so much.

  • Occamoo,

    Good luck! Do copy your MP on correspondence. My understanding is that UK licensed medication should not be withdrawn from patients due to cost issues.

  • Thank you and I will as I didn't know it shouldn't be withdrawn. I'll update my post with the outcome....let the battle commence!!

  • Would you mind me DMing you to find out where in Lincolnshire? Interested to see if a regional thing or whole of Lincolnshire.

  • Hi,

    I'm really sorry to hear this and I know how you feel because my Armour thyroid has been withdrawn on cost issues. Please PM me as I may be able to help in the short term.

    TT x

  • Thank you. If I get no joy tomorrow with Endo I will. E in touch.

  • Ok, good with the endo.

  • Occamoo

    CCGs are the worst offenders in the NHS by not observing The NHS Constitution and various Statutory Instruments.

    I hope the following links will help you & fellow members.

    It is also worthwhile for you to consider referring the matter to your MP, and pointing out, as stated in the first sentence above, that the CCG, is in acting in the stated manner, is in contravention of the various rules and regulations under which it purports to carry out its duties.

    The functions of clinical commissioning group

    england.nhs.uk/wp-content/u...

    THE FUNCTIONS OF CLINICAL COMMISSIONING GROUPS

    (UPDATED TO REFLECT THE FINAL HEALTH AND SOCIAL CARE ACT 2012)

    gov.uk/government/uploads/s...

    The NHS Constitution

    for England

    27 July 2015

    gov.uk/government/uploads/s...

    STATUTORY INSTRUMENTS

    2012 No. 1631

    The National Health Service (Clinical Commissioning Groups)

    Regulations 2012

    legislation.gov.uk/uksi/201...

    S T A T U T O R Y I N S T R U M E N TS

    2013 No. 2891

    NATIONAL HEALTH SERVICE, ENGLAND

    The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules)

    (Amendment) Regulations 2013

    legislation.gov.uk/uksi/201...

    STATUTORY INSTRUMENTS

    2012 No. 1916

    MEDICINES

    The Human Medicines

    Regulations 2012

    legislation.gov.uk/uksi/201...

  • Thank you so much for taking the time to send me all of this information. Fingers crossed I can be successful.

  • Good luck.

    I was lucky, I had the information on my data base.

    Do let me know how you get on. I'm attempting to do the same as you.

  • I will good luck to you too.

  • awesome. thanks

  • Occamoo Good Luck. I think it is very important that those in the same boat as you always challenge. Most won't, but they'll still moan plenty. They need to be challenged. All the best!

  • Thank you.

  • Ministers have said that a medicine that a GP has decided is needed should not be stopped on cost grounds alone. Contact your MP.

  • l am at beginning of investigations after 40+ years complaining and being ignored .Southampton Health Trust refuse to do T3 test x2 -(even tho Test requested by Dorset) because of the cost of it my exNHS friend tells me - £300 for 2 months tho it costs little to produce. Saw 'Trust Me l'm a Doc' and some about Thyroid on their website. Ex Dr head of Thyroid Assoc says our figures are different to World wide. A lady who obviously has suffered most of her life like l have, was refused T3 and says she has taken chance and gone on line to buy it as she feels much better. l would ring Swiss Embassy if l need it and ask for name of Pharmacist. (this is down to greedy Pharma here) or may French or German

  • I do not have a functioning thyroid gland due to pituitary failure and I can only take T3. Its so ridiculously expensive now and of such poor quality that I went on the warpath with my Gp and finally got him to prescribe Cytomel from Canada which is imported legally by a specialist company on the NHS. This costs about £300 per 100 tablets as against about £9 PER TABLET of the British variety. I am hoping that this will get round the ban of not prescribing T3 because of the price in my area. The question I ask is, why can't the NHS do this and save themselves money and have happy patients?

    Heather

  • You need to go after the GP not the CCG.

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