New Guidelines from British Thyroid Association

I have just been alerted to these new guidelines which I believe are about 2 months old.

My endocrinologist has advised my GP last August that I should be on T3 and he has refused to prescribe. He also went to the CCg apparently and they have refused.

My endo has stated that I should never take T4 again because of adverse reactions.

If I now present these new guidelines to my GP do they actually hold any weight? Is it worth me going back with a copy? I am irritated by having to order everything online and currently about to run out of stock. Im not happy with this and really want my GP to prescribe.

Advice with regard to any experience of presenting these guidelines to their GP please?

S

14 Replies

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  • What new guidelines are you talking about please?

  • 17/01/2017

    New Guidelines from the British Thyroid Association - Switching from Liothyronine (LT-3) to Levothyroxine (LT-4)? - 2016

    You may be aware that in July 2015 PrescQIPP issued a Bulletin that consisted of a DROP-List (Drugs to Review for Optimised Prescribing) in regard to liothyronine (T3) which has caused havoc for those patients on this medication. They updated this in July 2016 in line with the British Thyroid Association (BTA) Guidelines – (Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee. Clinical Endocrinology 2015;0:1-10. Available at: onlinelibrary.wiley.com/doi... )

    PrescQIPP state that they are “an NHS funded not-for-profit organisation that supports quality, optimised prescribing for patients. We produce evidence-based resources and tools for primary care commissioners, and provide a platform to share innovation across the NHS.”

    The DROP-List is an accumulation of medicines that commissioners considered as low priority, poor value for money or for which there were safer alternatives and is accessed by subscribers of PrescQIPP, namely Clinical Commissioning Groups.

    PrescQIPP then published another Bulletin – “Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism” along with a template letter meant for doctors.

    Since the DROP-List that included liothyronine was first published in July 2015 Thyroid UK noticed that more and more patients were either being refused T3 or having their prescriptions stopped, even though they felt very well on T3. Thyroid UK is organising a campaign about this to try to help thyroid patients.

    In the meantime, the British Thyroid Association has just issued three documents about this:

    Switching from Liothyronine (LT-3) to Levothyroxine (LT-4)? - 2016

    • Frequently Asked Questions for GP's

    • Frequently Asked Questions for patients

    • Information for Endocrinologists

    In the FAQ’s 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. However, patients with uncertain benefits should be considered for a switch to L-T4 and advice should be sought from an endocrinologist on how this can be safely done.”

    This is most definitely not what many doctors are doing from what we are being told by patients contacting us and on our forum.

    In the FAQ’s for Patients, under the question, “Do I have to switch from T3 to thyroxine” the BTA state, “If you are receiving T3 and are satisfied that you are deriving benefits from it then you do not have to stop it. You should let your GP know that you wish to continue taking T3. If the GP is not happy prescribing it they should seek the opinion of an endocrinologist.”

    Again, from what we are being told, no offers to seek the opinion of an endocrinologist is being suggested.

    In the “Information for Endocrinologists” document under the heading “Clinical approach to patients on L-T3” the BTA state, “For patients who are established on L-T3 and are considered to be 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.”

    Thyroid UK is very pleased to see that the BTA have published these documents and understand that for some patients T3 is required to make them feel well again. Perhaps if their original guidelines had been more specific this sad state of affairs would not have happened.

    If you have had your prescription of T3 stopped recently due to the cost or the BTA guidelines, it might be a good idea to print these documents off, highlight the areas that are relevant to you and take them back to your GP or endocrinologist for discussion. It might mean that your T3 is reinstated.

    Do let us know how you get on if you do this.

    To read the BTA documents go to: british-thyroid-association...

    To read the PrescQIPP Bulletin 117 – The PrescQIPP DROP-List 2015) click here

    To read the PrescQipp Bulletin 121 - Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism click here

  • Thanks

  • Just to let you know that the last 2 links seem to be missing from your really helpful and informative posting.

  • Thank you for this information.

    I have been on T3 for a few years, but I am increasing been told to reduce T3 add T4 until on T4 only.

    Today I have an appointment at a different hospital with a different endo. for a second opinion. I can not tolerate T4, Raised blood pressure and loss of balance.

    This information my be very useful to me today.

  • Just to let you know, this didn't help me :( . Every endo. I see thinks T4 is a wonder drug and T3 belongs to the devil.

  • beaton these Endo's are not worth their so called qualifications! T4 is an inactive hormone, T3 is the active and more useful hormone! How can t3 -the bit we need, be bad? We all need it!! Perhaps you need to question them - why is it a 'wonder drug'? Why does t3 belong to the devil? Would be interested to know their thinking - perhaps explain why they are very narrow minded and 'WRONG!'

  • I have often asked, if T4 needs to be converted to T3, how can T3 be unproven? but never get the reply. They gloss over things, do they not realise we do our research? We are mere women who should do as our husbands and endos. tell us.

  • beaton Ha ha...well it is about time we showed them?

    T3 has obviously been around a long time, so surely it was 'approved' somewhere along the line! I'm determined not to let anyone 'gloss over' next time. They can give a good viable response or show themselves up!

  • Am I understanding from your post that yourendo does not prescribe? only your gp?

  • My GP has been prescribing T3 since directed to do so by an endo. some years ago. I can't decide if my GP is not sufficiently educated in thyroid problems or if he is hiding behind the endo. because of the cost.

  • Numberone1,

    I would certainly advise writing to your GP, CCG and MP attaching the BTA Statement and appealing the earlier decision.

  • I have an appeal ready that I haven't sent yet as began to think it was a waste of time. After seeing these guidelines though I am certainly going to do so. I'll let everyone knows what happens.

  • the whole problem is the NHS purchasing drugs comitee is not dealing with the price gouging of t3 being conducted by Mercury / ambipharm

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