Consultation reminder

[UrsaP]

Please please all keep an eye on your local CCG's for the opening of the consultations regarding the removal of T3. And if you see it please post and let others know.

We can't afford to miss them or ignore them.

[amasufindme]

Hi UrsaP,

Thank you for the nudge I have been back onto the NE Derbyshire CCG website and then after my GP mentioned that LT3 has "Brown status" and that I would have to present an exceptional need to Derbyshire Medicine Management Group, I decided to go onto the derbyshiremedicinesmanageme...

...to find this

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Liothyronine

BNF6.2.1

Status Brown - after consultant initiation

Decision Date September 2016

Comments

BROWN after consultant endocrinologist initiation: for use in endocrinology in combination with levothyroxine only as per guidance below:

"Consultant initiation. Endocrinology use. A small numbers of patients may benefit from the addition of small doses of Liothyronine in addition to levothyroxine if their quality of life remains poor despite adequate levothyroxine replacement (i.e. fT4 at upper limit or just over the upper limit of reference range) and where measured fT3 still in the lower half or lower than the lower limit of the reference range. In this situation after specialist Endocrinology advice, a clinical trial of at least 3 months may be worthwhile in order to ascertain whether this improves the patient’s quality of life. If addition of Liothyronine does not result in significantly improved symptoms after a three month trial then stop and resume levothyroxine monotherapy."

***

This is new guidance and it seems to me that in making it "Brown status after consultant initiation" that a consultation is not being pursued. This criterion that needs to be met seems really arbitrary with no mention of TSH values, no definition of small LT3 doses and a minimal clinical trial timeframe.

I have been struggling with an over cautious endocrinologist to get my values in the upper ranges since November. My May results are TSH 0.28 mu/L [0.4 - 5.5], FT4 12.6 pmol/L [11.0-26.0], FT3 4.2 pmol/L [3.0-6.0].

It will be interesting to see how other Medicine Management Groups are classifying LT3 and what guidance they are stating...

I am (easily ) confused... does anyone know where this guidance is coming from - RCP, BTA, NHS England, NICE, the Clangers on the Moon?

Be safe, be well

[UrsaP in reply to amasufindme]

amasufindme As far as where the guidance is coming from I'd be inclined towards the 'Clangers'!

It is interesting that so many CCG's are going agains the guidelines, and withdrawing T3, but not going against the guidelines to issue it to new patients.

I find it hard to pin down just who is making these decision as it seems that they just pass the book around in a complete circle.

I also find the idea that if their quality of life remains poor despite adequate levothyroxine patients can have a little T3. But if that doesn't work stop the T3 and slap them back on the levy - that they know is not working for the patient?? ? Common sense anyone...PLEASE! No thought to stop Levo altogether and try just T3??

IT WORKS -at least for some of us! And it is not placebo effect 7 years on...

[amasufindme in reply to UrsaP]

Me thinks my confusion is not non-euthyroid symptom based!

There is an blatant lack of accountability and unintelligent/non-evidence based "facts" being presented.

At the center of all our NHS experience surely needs to be the edict "Duty of Care"... from the tenacious work you have done and the CMO & DoH responses received it demonstrates that no one organisation is taking responsibility. It is telling that NICE have always declined to present a set of guidelines about the testing and treatment of hypothyroidism and that the RCP passed their guidelines onto BTA "like a hot potato"earlier this decade.

I will repost my MMG findings onto T3 Action Group to see what other experiences people have had.

I am struggling with my health, but I intend to construct a letter this next month to CMO and DoH (any others?) for their comments on this disparity/non-accountability.

Will it be ok to PM you before sending UrsaP ?

[UrsaP in reply to amasufindme]

amasufindme Please do PM me. And I agree totally it is a hot potato, being passed around in such a way that no-one has to take responsibility.

[TaraJR]

An excellent post, and replies. NE Derbyshire is interesting. I have the website for my CCG, South Norfolk & Waveney, but how will I know when T3 / 'other costly' drugs are likely to be discussed?

[UrsaP in reply to TaraJR]

TaraJR thanks. On my CCG there is a tab 'Get Involved' which shows open consultations. If all fails you could ring than and ask? All the best