liothyrinine stopped from ccg

[katherine107]

i have been prescribed t3 since 2012 from endo at Poole hospital and have just moved to Worthing in west sussex. registered with gp and reviewed my meds and said t3 cannot be prescribed due to ccg banning it here in west sussex. i cannot function without it. gp did say they would refer to endo here but highly unlikely they would prescribe either. i can have it up until i see endo. is there anything i can do with evidence that i feel ill on thyroxine and need this t3. also how can it be stopped suddenly. isnt this dangerous?

[shaws Administrator]

Oh dear! How have they the nerve to do this to someone who was doing fine on T3.

I suggest you write to Lord Hunt and I'll give you a link.

There has been a countrywide removal of T3 - without notice and causing uproar.

This still hasn't been resolved but if you put up a new post and ask where to source T3 and for a Private Message to be sent to you with details. Your post will then be closed so that nothing is put on the open forum.

I know exactly how you feel as I cannot function on anything but T3.

thyroiduk.org.uk/tuk/campai...

If you are not a member of Thyroiduk - they are the ones 'behind the scenes' and there's only three who have to do everything to try to get the Associations to see some sense in their directives which has caused havoc - becoming members means that the more people the stronger the voice for us to have hormones which make us well.

[shaws Administrator]

Also make an appointment to see your local Member of Parliament. Don't be nervous and he can phone Thyroiduk if he/she wants more information and give him/her a copy of the previous link.

[m7-cola in reply to shaws]

Good idea.

[shaws Administrator]

Speak to your doctor again and state that Endocrinologists are the only medical professionals that can prescribe T3 and you have been prescribed by an endocrinologist. It doesn't matter where you live. Also tell him we should not have T3 removed without notice and we must be given sufficient time to resolve the problem. Tell him you are shocked by the attitude and you might get T3 hopefully.

[katherine107 in reply to shaws]

I did say to go I was prescribed by endo and she said I need to see new one and it's up to him not her. She did say he will probably not prescribe. I told her I had letter to prove I would benefit having t3 back in 2012. She was not interested.

[shaws Administrator in reply to katherine107]

Contact your previous Endocrinologist and explain the situation. As far as I know once an Endocrinologist declares that T3 (liothyronine) is suitable for the patient anywhere in the UK it should be prescribed as a GP has not the authority to supersede an "expert's".

This is my view and may not conform but I know many who've recovered on T3 their heart would drop and they'd feel desperate thinking that they will be back to a symptom life which is no life at all. Especially if it means you have to give up work and destroy's every day contentment or family life.

We are not dealing with bars of chocolate but a life-giving hormone without which not one human being could survive. excerpt:-

Liothyronine is the most rapidly effective thyroid hormone, a single dose giving maximum effect within 24h and passing off over 24–48h.

From: Clinical Pharmacology (Eleventh Edition), 2012

"sciencedirect.com/topics/bi...

[katherine107 in reply to shaws]

Thank you for this. Gp said up to ccg not in her hands. I am so worried. I will contact the old endo but he wasn't the one who initially prescribed it. I will certainly go down hill with health if stopped.

[katherine107 in reply to shaws]

Would you be able help please. I am thinking of emailing cc g in worthing to ask if they will keep me getting liothyrine. I have been getting it since 2012 . The endo who said I would benefit from it has left where I used to live. Told by new gp it's banned by ccg here. I don't know right thing to put in email. I am desperate as can't function without it.

[shaws Administrator in reply to katherine107]

I will respond by a message. You will see red alert appear on the top line.

[Nico101]

I'm also in West Sussex (Bognor) and am waiting to see an endo in St Richards. Let's say my expectation are low, esp after reading your post. I had no idea West Sussex was so bad for thyroid issues. At least I'm forewarned

[t3rr in reply to Nico101]

I am in Bognor too, and summoned to see Dr Bosman in St Richards next month... very anxious to say the least that they will withdraw my T3, intend to fight my hardest. Perhaps you, Katherine and I should get together and discuss strategy!

[Nico101 in reply to t3rr]

That's who I have to see. A nurse I know says she's good - but that doesn't mean she knows her stuff regarding alternative treatments for thyroid.

[Nico101 in reply to t3rr]

Had my appointment for Bosman cancelled last week - not a happy bunny. May try and get to Medway in Kent, as there is a Dr there that has prescribed T3, NDTs etc.

[t3rr in reply to Nico101]

Interesting you had your appointment cancelled, was going to ask how you got on with Dr Bosman, my appointment is still scheduled for Monday, feeling quite uneasy about it.

[Nico101 in reply to t3rr]

Well, that's interesting. I haven't heard a peep from the hospital, since.

That said, perhaps it's for the best. After a lot of faffing about with tests that weren't right, then reordering, I should complete my adrenal and hormone test by midday Monday. I'd rather go armed with tests she can't refute - although I appreciate I'm being rather optimistic with that comment.

I've also had the results of thyroid testing and the wonderful people on here agree I've almost certainly got Hashi's hypo. I wrote to my GP and said I need an ultrasound asap (I was advised to get one on this site, just to confirm Hashi's) and to do something about the cancelled endo appointment. I think my GP has realised my patience has worn thin, now, as I didn't ask but stated that's what I need - I sent her a copy of my tests for my records, too.

I've also realised that I can just buy NDT and try it myself. I'm used to self-medicating for Crohn's and other minor ailments with great success, so with the support and advice of people on this site, it seems a viable option if I come up against a brick wall with Bosman.

Try not to feel uneasy - there are options aside from an NHS endo, as I've now discovered. I was thinking of seeing a private endo recommended on this site, but I can't see the point at the moment. With NDT so cheap from abroad, I can try it and see how I get on with it before having to kick off with my GP and an endo, since it may not be right for me, anyway.

Perhaps record the appointment for your own records?

Have you written down everything you need to ask, as well as all your symptoms?

It seems the main thing to consider (from reading all the comments on here) is not to get overtly angry or rude with them. If you remember that you will get help from here and meds online, knowing you do not needing her approval may help you be less stressed.

Please let me know how you get on. And the very best of luck.

[Nico101 in reply to t3rr]

Also, I'm sure I read on here somewhere about the NHS's legal obligations regarding supplying T3 and that they can't just withdraw it willy nilly. And since it's really cheap in other EU countries, you could buy it yourself - worse case scenario. Not that anyone should have to, of course!

[t3rr in reply to Nico101]

Thanks... I will let you know how I get on.

[t3rr in reply to Nico101]

All ok, I was very calm, didnt see Dr Bosman, but when I said I had been put on t3 fifteen years ago, at that hospital following tests, they said would recommend continuing.

[Nico101 in reply to t3rr]

That's got to be a relief. Well done you. I wonder where Dr Bosman is.

[AnotherEarlyRiser]

When did "first, do no harm" become "first, do no harm to the budget"?

[SlowDragon Administrator]

This is directly against guidelines

If you were originally diagnosed as having clinical need of T3 by an NHS endocrinologist then you can and should be prescribed T3 on the NHS

West coastal sussex CCG do allow some Liothyronine

61 prescriptions last year - see here

openprescribing.net/analyse...

Wording in West Coast Sussex guidelines

"Liothyronine should not routinely be prescribed in primary care"

coastalwestsussexccg.nhs.uk...

You are prescribed because secondary care says you have clinical need and have paperwork to prove it

You will need to fight hard to get funding

Write/ring CCG and local PALs

Join Improve Thyroid Treatment campaign on Facebook. Lots of helpful letter templates

[katherine107 in reply to SlowDragon]

I will do all this. Am so worried

[SlowDragon Administrator in reply to katherine107]

You may need to get private prescription for T3 while you fight this

Private prescription enables access to cheap T3 from Germany. Though it's not clear if access will remain if Brexit ever happens

Email Dionne at Thyroid Uk for list of recommended thyroid specialists who prescribe T3

please email Dionne at

[e-mail]

[SlowDragon Administrator]

See also page 3 here

hastingsandrotherccg.nhs.uk...

Page 10 here

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

See page 20 of 22

crawleyccg.nhs.uk/_resource...

Clearly reluctance to prescribe is solely about cost

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

healthunlocked.com/thyroidu...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

Debates in parliament

theyworkforyou.com/search/?...

[SlowDragon Administrator]

Go see your new MP face to face in their constituency surgery too

Look up if they have taken any interest in Liothyronine debates via they work for yih website

[t3rr]

Likewise, I live in west sussex and out of the blue have received a letter to see the endocrinologist at my local hospital, I fear like you, I have been prescribed t3 for the last ten years or more, a terrifying prospect to have it withdrawn. Maybe we should get together, my appointment is for next month.

[katherine107 in reply to t3rr]

Oh dear. I haven't got much hope of keep getting it then. I cannot take thyroxine. Made me really feel awful. Are you near Worthing?

[t3rr in reply to katherine107]

I am in Bognor Regis, and called to a Dr Bosman's clinic in St Richards Hospital, Chichester. In previous years I have been referred there by my GP, but not to see this Doctor.

[Nico101 in reply to t3rr]

What date do you have? Mine's the 18th June. Will be interesting to see what Dr Bosman says to both of us. I would see the Dr in Reading who has prescribed T3, but I literally could not make the journey at the moment - catch 22!

[t3rr in reply to Nico101]

I don't think my reply got sent! My appointment is on 24th June, so all fingers crossed they do not remove T3, the other doctor there, put me on it 15 years ago, so have been taking it for a long time with a little T4. I have written to our MP this week too.

[Nico101 in reply to t3rr]

I've approached our MP for other things in the past and he's useless. But you never know. I don't yet know if I need T3 - my test kits just arrived today. But once I know what I'm talking about, I'll contact him, too. Two people with the same issue in a short time may make him take notice.

[t3rr in reply to Nico101]

I had picked up on one of the replies to Katherine from Slowdragon, that the liothyronine issue is being brought up on 21st May in parliament, and to ask our MP to support the case. In any event good luck with your hospital appointment.

[Nico101 in reply to t3rr]

Cheers. In that case I'll write to him now.