GP HAS QUOTED THE FOLLOWING NOT TO GIVE ME T3 - Thyroid UK

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GP HAS QUOTED THE FOLLOWING NOT TO GIVE ME T3

paul1978 profile image
9 Replies

There is no robust evidence for the use of liothyronine either alone or in combination with levothyroxine and it is not licensed for long term use.

Natural thyroid extract products are not licensed in the UK. The variation in hormonal content may lead to increased serum levels of T3 and subsequent thyrotoxic symptoms, such as palpitations and tremor.

Tablets should only be initiated by endocrinology

L-T4/L-T3 combination therapy in patients with hypothyroidism should not be used routinely, as there is insufficient evidence to show that combination therapy is superior to L-T4 monotherapy

If a decision is made to embark on a trial of L-T4/L-T3 combination therapy in patient who have unambiguously not benefited from L-T4, then this should be reached following an open and balanced discussion of the uncertain benefits, likely risks of over-replacement and lack of long-term safety data. Such patients should be supervised by accredited endocrinologists with documentation of agreement after fully informed and understood discussion of the risks and potential adverse consequences

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paul1978
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paul1978 profile image
paul1978

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Greekchick profile image
Greekchick

Hi Paul1978,

The answer is in the last paragraph - you will need to see an endo to benefit from the combination therapy should you need it. Your GP is not going to help.

I just had a TT and my body does not convert T4 to T3 so I will be on Cytomel - and I would be in bad shape if I had to rely on your GP. I am sure others here will also tell you this as well. Do get private blood work and see a private specialist if you can. I live in Canada so I don’t have the same problems that you face in the UK - but many on this forum have their own blood tests done and consult privately.

I wish you the very best of luck and hope you feel better soon. Sending positive thoughts your way.

diogenes profile image
diogenesRemembering

What utter bilge! 1) The T4/T3 content both relative and absolute in DTE is controlled by pharmacopeia definitions both as to content and to the methods to measure and control it before release for use. 2) Given 1) the T3 level will not be adversely affected once the correct dosage is found giving the optimal FT3/FT4 levels in blood. 3) there is insufficient evidence to support combination therapy because none of the trials have been done correctly and 4) there is plenty of anecdotal evidence to support combination or T3 therapy in the right patients.

MaisieGray profile image
MaisieGray

He is largely quoting the Nov. 18 RMOC guidelines, so at least it proves he's read them. However, regarding NDT, he's harking back to when some interested parties deliberately lied about NDTs being unreliable; when in fact they are standardised/controlled within prescribed parameters - he needs to provide the evidence to the contrary. He is also incorrect in stating that T3 is not licensed for long term use - Liothyronine Patient Information Leaflets all similarly state that Liothyronine Sodium tablets are used to treat some of the more severe conditions in which the thyroid does not produce enough thyroxine; and (other than where say, thyroiditis is temporary, such as post-partum and post-viral for instance) since the failing of a thyroid gland to produce thyroxine is permanent, ergo, if the need for T3 is proven, then it is long, not short, term. That the drug is used intravenously in ITUs for the treatment of myxoedema crisis does not mean that it has only an emergency/short term use. Interestingly, the Thybon Henning Liothyronine Hydrochloride PIL states more comprehensively, that it is used:

- to bridge periods of thyroid deficiency during the diagnosis of thyroid cancer and preparation for radiotherapy

- for the replacement (substitution) of the missing hormone in cases of hypothyroidism with simultaneous proven or suspected T4/T3 reduced transformation capacity (usually in combination with levothyroxine)

- for the examination of thyroid function (thyroid suppression test)

So again, he needs to provide evidence of his assertion that it is for short term use only. However, it seems that he's taken the RMOC guidelines to his bosom, and unlikely to be swayed in his beliefs/thinking, to the contrary. As I believe you are still under the care of an Endo, it is to him, that you need to appeal for a trial within the RMOC guidelines.

Oh my, Oh my, Oh my

"Whom the gods would destroy, they first make mad"

pennyannie profile image
pennyannie

Hey there Paul,

Well, I think the endo has already suggested the trial of T3 reducing your T4 down to 150 T4 and adding the 10 T3. So, surely he is be obliged to supply and monitor the T3 in the first instance.

In the meantime suggest you look into changing doctors, what an unbelievable attitude.

openprescribing.net/analyse/ I hope this link works for you : you can go into to your CCG and also your doctors surgery and see if they prescribe either, or both liothyronine which is T3 and or Armour which is the brand name for the NDT.

I'm so sorry - am speechless.

shaws profile image
shawsAdministrator

God help us to have doctors with such inept knowledge who do not listen to their patients who cannot and do not feel well when given levothyroxine. I think I spent more time in the cardiology and cardiologist was puzled about why I had 'forever' palpitations.

When some T3 was added to a reduced T4 I improved.When I took T3 alone I had no need to have an implant put in heart (as was suggested by Cardiologist) as I had no palpitations from then on.

SilverAvocado profile image
SilverAvocado

I have been making the effort to go on other thyroid and thyroidectomy groups, including some on Facebook. I encountered some of these myths about NDT there :( I have scuttled back to the well research safety of ThyroidUK with my tail between my legs!

SlowDragon profile image
SlowDragonAdministrator

Yes your GP can not initiate T3

You need to see an NHS endocrinologist

If an NHS endocrinologist says you have clinical need of T3 you should be prescribed NHS T3

Initially the prescription comes from hospital you see endocrinologist at. Assuming the 3-6 month trial goes ok, ongoing care and cost of prescribing is transferred to your GP. With annual check up back with NHS endocrinologist

If you see an endocrinologist privately, the NHS is no obliged to prescribe

Though you might see an NHS endocrinologist, as a private patient initially. Assuming T3 goes well, you might be able to transfer back to NHS for ongoing care

The clear issue is cost

28 tablets of T3 is £206

28 tablets of 100mcg Levothyroxine £1.03

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

healthunlocked.com/thyroidu...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

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