And so the T3 saga continues......

[veecaa]

I had posted previously about my practice withdrawing T3. My doctor then agreed to keep prescribing it. When my next prescription was delivered it had a rather abrupt note advising that ‘This is seriously against health board prescribing policy. It costs £258 as opposed to £1.57 for Levo. Little objective evidence that it’s any better and it’s only being prescribed until the endocrinology clinic agree to withdraw it’

My endocrinology appointment is tomorrow afternoon . I suspect I will have 5 minutes to state my case. Please can you guys help me to put together a bullet point list of important points that will help me argue my case?

Briefly my history is:

Undiagnosed underactive thyroid for around 3 years.

After being diagnosed and then years of T4 only I suffered exhaustion, palpitations, fluid retention, memory issues, anxiety, depression, gastric problems, weight gain.

T3 changed my life. I bought it privately then was referred to Endo who tested my bloods - all excellent so they lowered my T3 dose and some symptoms returned and bloods were not as good. Wrote to me to say they would prescribe T3 and don’t come back to the clinic and just manage your dosage via your doctor.

It would not surprise me if they just refused to prescribe the T3 so I really need to present a good case.

Many thanks

[flamingjune]

When this happened to me last week members of ITT (improve thyroid treatment ) directed me to Dr Toft's article and to the very recently published NHS England report which recommends T3 to be prescribed in secondary care ( endo rather than GP) and crucially that no one should be deprescribed without being reviewed.

You could argue that in the light of this report you should remain on T3 until CCG's have had a chance to review their policy and amend it. Print out page 5. Cx

tpauk.com/main/article/dr-a...

england.nhs.uk/wp-content/u...

[veecaa in reply to flamingjune]

Great thanks, I’ll have a read through. Bullet point 1 added

[Clutter]

Veecaa,

The only relevant case to be made is that you feel so much better since T3 has been added to your Levothyroxine and insist that you wish to remain on T3.

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...

[veecaa in reply to Clutter]

Cheers, thanks more bullet points added I’ll make sure I start with the difference it has made to my life.

[Clutter in reply to veecaa]

Veecaa,

And point out that the BTA say Liothyronine shouldn't be withdrawn for purely financial considerations.

[veecaa in reply to Clutter]

Yes, will do, good point. Thanks

[Hillwoman]

Let us know how you get on, veecaa. Good luck.

[veecaa in reply to Hillwoman]

Will definitely do that. Thanks vx

[veecaa in reply to veecaa]

I printed out the info I needed then forgot to take it with me! Annoyed at myself as I could have done with it. Basically listened to all my points then said they would look at my blood tests and advise whether I was allowed to stay on T3 based on what came back. He said that T3 is not something they would normally ever prescribe because it’s bad for you. It suppresses the T4 and affects conversation. I advised I believed I had a conversion problem and that’s why I need the T3. The more T4 I take the worse I feel. He says they base their recommendations on clinical data rather than opinions. All in all I’m not hopeful. He talked a lot about the protocols for coming off T3 and I got the feeling that will be the plan. I asked exactly what they were looking for in the blood tests to base their decision on but i didn’t really get a clear response. He wanted me to have blood tests done there and then but I said I would come back in the morning. He said it makes no difference what time you have your tests done but agreed I could do that if I preferred. I’m taking the printed notes with me to hand in for him to read. He was adamant that the current guidelines are not to prescribe T3 so I need to source a bit more info on that. He mentioned that private prescriptions were also not an option because the treatment isn’t recommended. The plan is now for him to check my blood results and to discuss with the other endos in the department and they will write with a decision. I actually feel I could convince him if I can come up with some nhs based advice on T3 being recommended as a treatment protocol. He says to him it’s not the cost that’s the issue it’s just that currently they believe it’s harmful due to suppression. I have said that going back onto T4 only is not an option for me so will keep plugging away. Thanks to you guys once again for your support and advice.