Present NHS guidelines re prescribing T3?

[Darty3]

The surgery have caught up with my taking of T3 off my own bat. The new GP was keen to get it prescribed by the NHS and has now referred me to an endocrinologist.

I had seen him earlier this year when he said I could have a trial of T3 but after I had seen a neurologist to dismiss Parkinsons. I have now got a copy of his referral letter to the neurologist which states ".....for consideration of levothyroxine and liothyronine combination thyroid hormone replacement as this is currently not available on an NHS prescription." I do know that the Harrogate CCG have changed their tune and now state that it should not be prescribed. But surely this is against government guidelines which states that the decision needs to be taken by an endocrinologist?

[Hidden]

Liothyronine will always remain on prescription for the NHS. It is used to treat myxedema and is taken during RAI treatment and that simply will not change.

It is, however, treated in different ways by CCG's for use in the treatment of hypothyroidism. Some ban it for everybody, some for new patients and other may have different policies. It is a right old mess and is causing misery, worry and inconvenience everywhere.

All of the CCG's in Lancashire have blacklisted it (effectively BANNED it) because they allege it has not been through sufficient satisfactory trials. And that is perfectly true, BUT Levothyronine also has never had sufficient trials, so Levothyroxine itself should theoretically be banned in Lancashire if they were to act in a consistent manner.

I encourage any members who live in Lancashire to ask them to justify their inconsistency.

See the website of the Lancashire Medicines and Management Group for details.

[Darty3 in reply to Hidden]

Thanks for this. One has to be well enough to be ill, to have all these fights.

[louhop in reply to Darty3]

Are you sure about Harrogate CCG - I am under the belief that in the last few months there has been an agreement with the STP under which that CCG falls to allow T3 to be prescribed in a primary care setting following a recommendation from an endo ?

[Phronsias2 in reply to Hidden]

Hello, I live in Lancashire and am prescribed T3 on the NHS

[Karl76]

Hello.

I have been on Levo and Lio for last 8 years or so. I have had 1 review in that time from the NHS board consultant who in his own admission said the interview was a waste of time as he was not qualified to make the call as to wether I should come off it.

I asked the reason for the meeting he said "That stuff is really expensive" I just laughed and said good day. Thanks for wasting my afternoon.

It was prescribed on the NHS follwing my requests to go on AMOR which was flatly refused.

I have found the combination of the two helped me by reducing the energy crashes I was experiencing. I still get them but they dont appear as severe.

This is following a total Thyroid removal due to Follicular Cancer..

[Babette]

I asked the endo about it at my appointment last month. She said that they're not allowed to put any new patients on T3 unless they have a very special case, in which case they can appeal (not sure who to). She said it was a national thing and not just that area.