T3 no longer supported

[veecaa]

Hi all. I've had the dreaded letter from NHS Lanarkshire (Scotland) to say that T3 is no longer supported and I am supposed to alter my dose under supervision to 150mcg T4.

I am currently on 40mcg T3 and 75 mcg T4 daily prescribed by endocrinologist.

T4 alone never worked for me and the T4/T3 combination was life changing.

Can anyone advise if there is anything I can do to continue T3 on the NHS? Alternatively can you advise if there is anything I can do privately as I have bupa cover. Thanks in advance for your support

[serenfach]

You have two choises -

1 - make a fuss. You do well on T3 and have proved this. You need it. Write to your MP, your health board, your Practice manager and hope they take some notice. T3 is not actually banned so do not be fobbed off. Why should you be ill to save some money so a big corporation can make a bigger profit?

2 - buy T3 yourself. If you know anyone in Spain, or anyone going on holiday there, ask them to buy it over the counter for pennies. Failing that, you can get it over the internet delivered to your door.

It does go against the grain to have to pay, but I am on a basic pension, so not well off. I buy NDT which costs me around £2 a day. I consider it worth it.

Good luck.

[veecaa in reply to serenfach]

Typed a reply but lost it! Thanks so much for your advice. Trying to get this sorted via GP who was very helpful. Alternatively looking into other sources as a backup

[RedApple Administrator]

veecaa,

Your T3 should not be withdrawn without consultation with you, the patient.

Here is an excerpt from a news item on the main Thyroid UK website.

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.”

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.”

The full news item is here, with links to the BTA guidelines that were published at the end of 2016. thyroiduk.org.uk/tuk/newspa...

Might be useful to print this info out and take it to your GP.

[veecaa in reply to RedApple]

Perfect timing. This came through while I was in the doctors waiting room. I explained about BTA recommendations and about previous bad experience with T4 only. She was really lovely and said she would take it forward with their pharmacist and with endocrinologist for me. Thanks for the info.

[Chunipet]

I hope, by making a fuss, you are able to continue with your current prescription. If not, it is possible (with patience!) to source your own T3 from abroad. However, you cannot buy T3 over the counter in Spain but you can buy Levo over the counter for a few euros without a prescription.

[veecaa in reply to Chunipet]

Thanks chunipet. I will bear that in mind if I do need to source from abroad

[Stourie in reply to veecaa]

Hi I am dreading that happening to me too. I am in Tayside and when I have picked up my last two prescriptions from the chemist there has been an extra paper attached to the bit I get back with my t3 saying to go for a blood test for thyroid. I have ignored it so far and don't think I need one as when I had a hip replacement in January they checked it then.

If it hadn't been ok then I doubt if the operation would have been done... I hope you are successful in keeping your t3.

Jo xx

[veecaa in reply to Stourie]

Hi. I'm still not sure what is going to happen long term. I haven't heard any more since seeing the doctor on Monday. I hope that you will be ok. I think when it's withdrawn we do need to stress that we need the drug and highlight that it does have health benefits. As a backup there have been posts on here that give alternative sources so if the worst comes to the worst we don't have to stop taking it. It's shocking that the uk company that provides T3 is allowed to hold us to ransom over it.