Removal of Levothyroxine: I have just got home... - Thyroid UK

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Removal of Levothyroxine

Foggy73 profile image
7 Replies

I have just got home from seeing my GP to be told that they will have to stop prescribing Liothyronine because they are not allowed to prescribe it anymore. I am on combined Liothyronine and Levothyroxine and have been for about 2 years. The combination has given me my life back as the Levothyroxine that I was on on its own for 5 years didn't work.

Has anyone else had this problem of it being taken away as they are not allowed to prescribe it anymore.

What can I do?

What are my options?

How much is it to get privately?

I'm very upset as I can't go back the way I was with a young family.

Thank you in anticipation.

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Foggy73
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7 Replies
Foggy73 profile image
Foggy73

No in Sussex

Clutter profile image
Clutter

Foggy73,

Was Liothyronine originally recommended by a NHS endocrinologist? What reason did you GP give for withdrawing your prescription?

Foggy73 profile image
Foggy73 in reply to Clutter

Yes an NHS Endocrinologist gave me my Liothyronine then he retired and his colleague took over and told me that the hospital were no longer allowed to prescribe the Liothyronine but if my GP was happy to they could do it. my GP has been happy to prescribe it for the past year but I saw his colleague today and she told me that the GP is no longer allowed to prescribe it.

Clutter profile image
Clutter in reply to Foggy73

Foggy73,

Sounds like the CCG may have told GPs not to prescribe. The CCGs don't have authority to tell GPs what to prescribe and what not to prescribe. I would write to your GP (cc your MP) and tell your GP that the CCG does not have the authority to tell GPs what not to prescribe and you believe your GP is in breach of GMS contract by with-drawing treatment you have been told you need. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

Please complete the NHS England Survey re de-prescribing Liothyronine. engage.england.nhs.uk/consu...

Please also sign the petition requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

If members can recommend sources where to obtain T3 without prescription they will send you a private message because feedback can't be posted on the forum. To read a private message: support.healthunlocked.com/...

To send Foggy73 a private message: support.healthunlocked.com/...

Foggy73 profile image
Foggy73 in reply to Clutter

Thank you very much for your support and advice. I really appreciate 😃

SlowDragon profile image
SlowDragonAdministrator

If you are well and stable on it then it should NOT be removed. Presumably you were originally seen by an NHS endo and advised you have clinical need

Look up your local area CCG - see if you can find guidelines on Liothyronine.

Many CCG's are incorrectly trying to prevent prescribing due to extortionate price of UK T3. If this is against clinical need this is totally incorrect, and in long term far more expensive (and unacceptable for you)

Would your endo or GP give you private prescription you can then order from France or Germany (£30 for 100 tablets - whereas UK is £900 for same)

Suggest you write your MP, also Julie Wood chief executive of the CCG's and the head of your local CCG

nhscc.org/about-us/whos-who...

nhscc.org/about-us/whos-who...

Outline how unwell you were, would not be able to work, look after children, require other medications etc etc

Helpful posts

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Foggy73 profile image
Foggy73 in reply to SlowDragon

Thank you very much for your support and suggestions 😃

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