My CCG now stopped T3

[marigold22]

I know many others here have already had their T3 withdrawn by their GP due to the CCG making the decision that T3 has no benefit. But today I received THE dreaded letter from my GP, telling me that my T3 prescription has been withdrawn. I wrote to my CCG in May and they wrote -

"The rationale for including Liothyonine as a product of limited clinical value is based on guidance from the British Thyroid Foundation who position T4 (Thyroxine) as the primary route of replacement. They recommend patients on T3 (Lliothyronine) are referred to secondary care for review and supervision. Therefore our proposal is not solely based on cost but on clinical grounds. T3 treatment alone

1) Is not physiological (85% of circulating thyroid hormone is in T4) and

2) T4 to T3 conversion by target organs are usually not affected by hypothyroidism.

3) T3 has a very short half-life and does not provide adequate suppression of TSH (thyroid stimulating hormone). To reduce TSH specialists find that generally patients can be over replaced leading to side effects of over-replacement. "

I now have to find the energy, sort out the correct medical papers & statements I have stashed for this event, argue like I've never argued before.

It has taken me 35 years to get well by taking only T3 and a much larger dose than previously prescribed.

I'm sick to death of this Human Rights abuse - to be honest, if I didn't have a gorgeous grandson to live for, I wouldn't bother

[Nanaedake]

Are you sure they said the British Thyroid Foundation? The British Thyroid Foundation are a Charity. They have no statutory status whatsover. They are a patient support organisation and the CCG would be on very dodgy grounds if they made a decision based on the 'opinons' of a charity!!!!

[marigold22 in reply to Nanaedake]

Yes they did say British Thyroid Foundation. I copied and pasted their reply and have just re-checked. Thanks

[Nanaedake in reply to marigold22]

Well, I think they are on VERY dodgy grounds. If they had written, British Thyroid Association, then that is led by clinical experts but the British Thyroid Foundation is not although they have clinical advisers but they are in NO position to make any statements about what patients should and should not recieve and they certainly do NOT represent thyroid patient's point of view.

I would definitely respond strongly to the CCG's letter and point this out to them but read Airmeds template letter too as there is so much good information in it. Just make sure you put it into your own words. Don't think that others will do this for you. Volume counts. The more people that write in the more influence it will exert.

[Nanaedake]

Check out Airmeds posts for how to reply and write to your CCG. There is a sample text to crib from and compose your own letter to your CCG. Also, please copy your MP into the letter and better still, get an appointment to meet with your MP. You could also copy your local Healthwatch into the letter.

[lynmynott Partner Thyroid UK]

OMG! What Rubbish! Could I use the contents of this letter please? Lyn

[marigold22 in reply to lynmynott]

Yes most certainly. It's Dudley CCG

[lynmynott Partner Thyroid UK in reply to marigold22]

Thanks!

[marigold22]

Do you mean the BTF can be reported to charity commissioners? My CCG may have made a typo error saying BTF instead of BTA

[helvella Administrator Thyroid UK in reply to marigold22]

For clarity only:

There are two thyroid charities with British in their names:

Registered Number Charity name

326152 BRITISH ASSOCIATION OF ENDOCRINE AND THYROID SURGEONS Registered

1006391 BRITISH THYROID FOUNDATION Registered

But not the British Thyroid Association

[Hidden]

To clear up the misunderstandings the British Thyroid Association, The British Thyroid Foundation, The Royal College of Physicians and the Endocrinology Society are ALL charities.

[marigold22]

Further to this post, I need to clarify what you said. ie if it IS British Thyroid FOUNDATION making statements that my CCG has quoted, they can be reported to charity commissioners for lies & totally false statements. Panda321 (further down here) says British Thyroid ASSOCIATION is also a charity. Therefore why can't British Thyroid Association be reported to charity commissioners for lies and totally false statements?

[thyroid555]

Hello Everyone,

Happy day today, I got some T3. My Pyschatrist prescribed it and Pharmacist managed to get it in. On the box it says the Manufacturer is Morningside Healthcare

Thankyou for all your help and advice on her. I have sent an appeal letter to the CCG with quite a bit of evidence eg, BTA guidance, NHS England Consultation re: primary care, General Medical Services Contract and NICE guidelines.

I sent this to my MP also.

I have also sent a letter to my Endo saying he needs to support me to apply for T3 and say I have a clinical need for it. T3 was given to be 16 years ago by an NHS Endo and I was on it for 16 years. That Consultant then retired. I have seen two new Endo's that were sympathetic and said they felt T3 could help some patient's, however one of them simply said the GP had to do the Individual Funding Request.

Basically my GP did it and my Pyschiatrist added information to it.

I really feel that Endo's should be playing a much larger role in this process as my Endo hasn't written anything to support my application and hasn't said that I have clinical need for it, he just says only GP's can do the application which I think is unfair as on the whole most Endo's should know more about the thyroid than most GP's.

What have your experiences been? Have any Endos being writing a supporting statement to go with the IFR? I feel this is maybe a deliberate process by the CCG. Is there anyway we can campaign for it to be mandatory for Endo's to contribute to the IFR and explain how a person has improved etc on T3.

I asked him to be part of the process, he checked with the Head of the Department (a lady I have met that previously didn't like being on T3) and he came back to me saying they could have no involvement in the application! It just feels they are all washing their hands of it and don't want to know.

I have signed the petitions on here and done the NICE Survey, quite basic would be good for more space to write in depth, but will email my story as mentioned soon.

I am going to get the D102 test done and see what the result shows, as if positive it may help my case. I just wondered what people's experiences are of having this test done, is there anything particular you need to do or just do the saliva sample, you don't have to come off your medication to have it done? Is there anywhere else that does the test also, apart from the Lab in Surrey?

Wishing you all well on your journey. Best Wishes,