Moving county and need t3 prescribed

[katherine107]

I live in Dorset and moving in about 3 weeks to Worthing West sussex.was prescribed Liothyrinine 6 years ago from endo here but in Worthing been told I cannot have prescribed. I cannot function without it . My health will deteriate. Is there anything I can do? Also I can only tolerate mercury pharmacy brand.

[SlowDragon Administrator]

Email Dionne at Thyroid Uk for the list of recommended thyroid specialists

[e-mail]

You may need to be reviewed by NHS endocrinologist in that area

They do prescribe for some patients

78 prescriptions in last 6 months

See open prescribing website here

openprescribing.net/analyse...

You may need to get private prescription initially

[katherine107 in reply to SlowDragon]

I may have to wait a long time to be referred to endo in New area. How do I get private prescription?

[SlowDragon Administrator in reply to katherine107]

Was it an NHS endocrinologist who originally said you had clinical need of T3?

Do you have any letter confirming this? Or anything in your medical record?

This should be enough to get new GP to continue prescribing

Alternatively can you ask this endocrinologist for NHS prescription to cover say next 3-6 months. Or can they give you private prescription

If not, the other option is a private consultation with an endocrinologist off the recommended list

Obviously Mercury Pharma is very expensive on private prescription. Cheap option is to use prescription online to get Thybon Henning 20mcg from Germany

Guidelines from BTA

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

[katherine107 in reply to SlowDragon]

The endo I had since 2012 left over a year ago. He was one who said I would benefit from it. The new one who I have seen twice (once a year) is not happy about taking and tried cutting dose but hasn't yet. How would I get letter ? Also can my gp prescribe prescription for a few months before I move. Then I would have time to sort this out. I normally get prescription once a month and it's due tomorrow.

[SlowDragon Administrator in reply to katherine107]

Surely your endo wrote to GP after diagnosis of clinical need

Who gives you T3 prescription, the GP or the hospital? If it's GP there must be something on record

Do you have access to your medical record online?

If not suggest you register for access and see what you can find

[katherine107 in reply to SlowDragon]

I have found letter from old endocrinologist back in 2012 saying I would benefit from t3. Do I show this to new surgery where I am moving? Would that be sufficient?

[SlowDragon Administrator in reply to katherine107]

Was this endocrinologist NHS? If so, yes that should be enough proof

Only give them a photocopy. Make sure you keep hold of the original

[SlowDragon Administrator in reply to katherine107]

West Sussex CCG - 825 prescriptions for T3 in last year

openprescribing.net/analyse...

[katherine107 in reply to SlowDragon]

yes a nhs endo. thats good that there were over 800 prescriptions for t3 in west sussex. how do you know this?

[SlowDragon Administrator in reply to katherine107]

On that link I just added to openprescribing.net

Figures Below the graph

Interesting comparison

West Sussex CCG

Levothyroxine in last year

285,595 prescriptions at cost of £564,378

Approx cost of £2 per prescription

Liothyronine in last year

822 prescriptions at cost of £387,920

So that's typically 2 months of Liothyronine per prescription at roughly £235 per box of 28 tablets. £470 per prescription

[katherine107 in reply to SlowDragon]

thankyou

[Hidden]

Hi I would tell your GP they are allowed to prescribe T3 per NHS England guidelines and RMOC guidelines - See TUK and The Thyroid Trust for info. Unfortunately your CCG has blatantly disregarded the guidelines.

To get private prescription you need to see an Endo privately. Your GP may but I would then ask them if they agree you have clinical need why they won’t on NHS given their contract is with GMC not CCG. The wording on the prescription needs to state number of tablets (not 28 days worth) - there is info on ITT Facebook page or possibly someone here will comment.

Worth getting on Twitter to follow the #andmeT3 campaign to help patients in the same position as you. Good luck

[McMurtagh]

Ask your current GP to give you of couple of months supply and you can use that while you get things sorted in your new area. That’s what I did.

[moomoo17]

In the Worthing area it is a blue light status which means you can have ongoing prescription from a gp as long as a specialist initiated treatment. But things are always changing. Ring up worthing coastal CCG and ask for clarity, be prepared for a lot of dodging of your question. You can also find it online. Worthing or West Sussex are a horrendous CCG and council to deal with. But as far as I know you should be ok if the endo initiated it the problem is getting the CCG to realise that!. I would get a copy of the letter the endo wrote when he prescribed it for you as well, and a letter of support. From current gp plus a prescription for as many months as you can get.

[katherine107 in reply to moomoo17]

The original end who prescribed liothyrinine left over a year ago. He said I needed it . The one I have now isn't happy with me taking it but does as I was on it already . How would I get letter about this?

[JumpJiving]

The endo that I have been referred to previously in West Sussex does not believe in prescribing T3 or NDT. I have given up on the NHS locally for all things thyroid and instead seen a private GP in Chichester who has prescribed NDT for me. I didn't ask about synthetic T3, but you could always ask her if you don't get what you need through the NHS. Details are on the ThyroidUK list of doctors etc.

[Whiterose]

Hi Katherine I was interested in your post. I live in Dorset and had thought about moving to Worthing. So good luck with your move. I was amazed to read that you were able to get T3. My doctors had refused to prescribe it due to budget constraints! So I do hope you are successfu. Let us know how you get on.

[katherine107 in reply to Whiterose]

I love Worthing and can't wait to get there but this problem with t3 is going to be hard

[SlowDragon Administrator in reply to Whiterose]

Whiterose

If you can see a "good" NHS endocrinologist who is a thyroid specialist and they say you have clinical need, you should be prescribed

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

[e-mail]

470 prescriptions for T3 in Dorset CCG last year

openprescribing.net/analyse...

[Whiterose]

Well don't give up. Keep us posted. We would like to know how you get on. Take care.