GP surgery now working with endos to decide on criteria for which patients can continue on T3

I cited the info from Thyroid UK on guidance around this. My GP asked me to send her my sources, and spoke to her practice drugs lead. They are now considering their criteria - I'm not their only patient. In the meantime i started importing my T3 but feeling slightly hyper one week into my increased 25% increased dose of T3 (half a 25mcg instead of my usual 10mcg dose).

GP now prescribing T3 again via NHS while they make up their mind! Posting in case of use to others, happy to share my email to GP which seemed to help them.

Thanks for previous advice...

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  • Lucky you, you would think I'd asked for hard drugs when I asked the GP about T3! Anyway they think all my symptoms are fibromyalgia! 😡

  • Hello. Thanks for sharing. This sounds great. I would be grateful if you could share your e mail with me. 🤗

  • You may have already received this.

    healthunlocked.com/thyroidu...

  • I would be interested in the letter too, thanks

  • I would appreciate a copy if you could message me please? Thank you.

  • Yes thats great news!! , could you pm me too plz , good luck ,,,and thanks in advance :))

  • I would very much appreciate it if you could share your email with me too please.

  • Congratulations and the response you've had from your GP shows that at least one has a heart. :)

  • And half a brain!

  • Half a brain is better than none I assume :)

  • Hi that is great news. Can you share copy of your gp email with me as well please. Thanks

  • I'd also be very grateful for a copy of your letter.

    I got my life back after I started on T3, but a few weeks later my GP said he wasn't allowed to prescribe any longer. Now buying from Greece.

  • This is a copy which may be of interest:-

    healthunlocked.com/thyroidu...

  • Great news AJ, and although my wife is currently on T3 via Endo, I would be very grateful if you will PM your source, as I am always concerned that it will be stopped.

    good luck

  • This may be helpful:

    healthunlocked.com/thyroidu...

  • My endocrinologist is adamant that T3 is not easy to control, and should not be used! The only option she offered was a raise in Levothyroxine to see if my symptoms go! HELP!

  • I can vehemently disagree with that stance. They spread rumours and have no actual knowledge of prescribing it in the first place. Is it a 'cover-up' so she wont be reprimanded as the new guidelines from the BTA appear to inform readers (I assume the medical profession) against prescribing T3.

    Also several research teams have recently proven that many find relief with a combination of T3/T4 who don't get well on levo only. Also the fact that many don't convert to enough T3 is that levo dose isn't high enought, particularly if doctor is fixated upon the TSH.

    healthunlocked.com/thyroidu...

  • Thanks Shaws, I have to wait to see the consultant endocrinologist at the end of June, apparently he can refer me to a thyroid specialist who will prescribe T3 if appropriate! In the meantime I'm taking an extra 25mcg of levothyroxine. I have to say, I'm feeling a lot better for it too. Symptoms are reduced, as is my weight! I'd be grateful for a copy of your email also, it might help to speed things up a little😊. Thank you.

  • Some people, when levo is at an optimum (I'm not referring to blood tests) when they feel well with no clinical symptoms that's their optimum dose.

    healthunlocked.com/thyroidu...

  • Hi

    could you P.M. the email please.

    Many thanks.

  • Well done! Please could I have a copy of your letter by PM? Long may it continue. Trish

  • I'd be grateful if you would kindly share your email by PM with me. Many thanks

  • I suggest that those taking action about this could state that ThyroidUK is one of the places recommended by the NHS as a place to find useful information about an underactive thyroid:

    nhs.uk/conditions/Thyroid-u...

  • Great! Please email me a copy. I may need it in the future, who knows.

    Thank you so much.

  • Hi. I'd really appreciate a copy of your email to your GP. Many thanks.

  • Please can I have a copy too. I'm currently fighting my GP re T3 which I consider vital to keep me alive. Thank you and good luck x

  • Would you share your email with me, too, please? Many thanks.

  • Here is the text:

    ---

    Further to our conversation regarding the possibility of continuing to fund my liothyronine (T3) medication, I am sending as requested the information on the guidelines I referred to:

    The primary source of my information is from Thyroid UK (which includes the links to the bulletins), linked here and summarised below - thyroiduk.org.uk/tuk/newspa...

    1. In July 2015 PrescQIPP issued a Bulletin (#117) that consisted of a DROP-List (Drugs to Review for Optimised Prescribing) in regard to liothyronine (T3).

    2. This was followed by PrescQIPP Bulletin (#121). Recommendation 1 is to “Ensure that prescribing is in line with the BTA guidance.” It also states ‘review and switch suitable patients… these switches should be tailored to the individual patient’.

    The BTA guidance states “for patients who are established on L-T3 and are considered stable, a change to L-T4 monotherapy should not be implemented without discussion with the patient. In such cases change of treatment may result in significant instability of thyroid status and potentially undesirable clinical outcomes, which may prove more costly than continuation with L-T3 therapy.”

    3. In July 2016, the British Thyroid Association (BTA) issued Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee. Clinical Endocrinology 2015;0:1-10 and 3 FAQs for patients, GPs and endocrinologists.

    In the FAQs for GP’s they state, “Whilst we appreciate the commercial imperative to cut prescription costs, like you, our first concern is that in all cases the clinical needs of the patient should come before financial considerations.”

    They also state, “The decision to switch from L-T3 to L-T4 should be based on clinical considerations and should be reached in conjunction with the patient after a discussion of the risks and benefits. Patients established on L-T3 who continue to derive benefit from its use should continue on L-T3”.

    I have been stable on this medication for almost X years, and was unable to function (professionally and personally) before I received it. I understood from [my endocrinologist] that I am unable to convert the T4 into the T3 needed. [insert T3 levels if available and relevant information]. I am very concerned that my condition will deteriorate if I don’t have the supplementation I need.

    I hope this information will be useful in making my case to continue to receive the treatment. Please let me know if I can help in any other way, and I look forward to hearing from you in due course.

    Yours, etc

    ----

    [I also used this additional paragraph, which relates to a letter from my endo, and is therefore not relevant for others:

    In his letter to me last month, [Dr B] noted “it is a shame that the cost of Liothyronine has been increased significantly by the manufacturer and this has led to a decision by the funding body of the CCG not to support its ongoing use. Having said that, I think that each individual case needs to be considered in its own right and if a patient is clearly less well on Levothyroxine monotherapy, then this needs to be taken into account.”]

  • Obviously, if I've got anything wrong, please do suggest alternative wordings. I hope it's useful for some.

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