NHS plans to stop prescribing life-changing thyroid pill after drug company hikes its price up by more than 5,000%

[nagasakih2o]

Mmm what's going on here then....

dailymail.co.uk/health/arti...

[shaws Administrator]

In the UK T3 has now been withdrawn from prescribing due to the colossal cost of T3 to the NHS.

The pharmaceutical company decided to increase the price so high over a couple of months that patients cannot source it on the NHS at all now. Even though the BTA recommended not to withdraw from patients if they were stable on it. That advice wasn't followed and a blanket ban is on it.

Of course this caused panic amongst patients as it was done without any warning either.

[Hennerton in reply to shaws]

When was this decided? I have not heard it yet. Am I missing something?

[shaws Administrator in reply to Hennerton]

Yes. It has been running for a couple of months.

healthunlocked.com/search/r...

[Hennerton in reply to shaws]

Thank you. I know it has been running and I have signed petitions and written to the NHS but surely it has not definitely been stopped yet?

[Hennerton in reply to Hennerton]

Thank you. I know it had been running for months. I have written to the NHS and signed petitions but did not know it was definitely stopped now.

[shaws Administrator in reply to Hennerton]

For many members, yes it has been withdrawn and Endos saying that levothyroxine alone is sufficient.

[Hennerton in reply to shaws]

Yes, again I knew all that but there has been no firm decision yet, has there? I have an annual medication review with my GP next Tuesday and am waiting for the bad news. I shall definitely fight it, as I have no thyroid and absolutely know it is necessary for my health to stay on track. It is hard enough, even with T3 helping....

[Rapunzel in reply to Hennerton]

Clutter I recall you responding to a post with something from an 'august' body that T3 shouldn't be stopped for people such as Hennerton but I can't find it - can you?

[Clutter in reply to Rapunzel]

Rapunzel,

See reply to Hennerton.

[Hennerton in reply to Rapunzel]

Thank you for asking Clutter for the very useful info. Will let you all know how it goes.

[Clutter in reply to Hennerton]

Hennerton,

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...

Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA also responded to the NHS England consultation on de-prescribing Liothyronine and other items british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

[Hennerton in reply to Clutter]

Clutter, Thank you for all this info and I hope it will add weight to my stance. Maybe it won't even be necessary? We all wish...

[Hennerton in reply to Hennerton]

I had the annual review of my repeat prescriptions by phone today. First comment from the doctor was that I am over replaced, as TSH is below range. I immediately launched into the fact that both T4/3 are well in range and that the TSH test was only valid when patients are on T4 only. She then asked why I was on both hormones. I explained my thyroidectomy and the problem of over range T4 with under range T3 and that after seeing an endocrinologist I was put on the combo in 2012. I added that as I have no thyroid I need the 20% of T3 that my thyroid would have made. Long silence. Then she asked if I realized it is an unusual therapy. Yes. " And do you feel better on it?" "Yes". Another long silence and then, " Do you understand about the osteoporosis risks?" "Yes" (not absolutely sure of my ground on this one and I am very thin, so did not want a battle.) Then she said, "Right, I shall make a note that you are educated and understand the risks".

I swept into a request for some blood tests requested by a musculoskeletal consultant I have just seen and we moved on from thyroid matters very neatly. No doubt she has put a dry comment on my notes but I now have T3 for the foreseeable future.

My thanks to all on this site for keeping me informed.

[shaws Administrator in reply to Clutter]

My surgery have told me they will not prescribe T3 only levothyroxine as they've been instructed by the CCGs. I gave him the BTA guidelines but they take advice from the CCGs.

[Clutter in reply to shaws]

Shaws,

CCGs are also supposed to consult with stakeholders instead of imposing directions. You can challenge their decision if they didn't do this and separately report your GP for breaching the GMS contract if you have previously been told you need Liothyronine. See links in my reply to Hennerton.

[shaws Administrator in reply to Clutter]

Thanks Clutter I will. The surgery did in the past prescribe T3 only but when we had the problem with Mercury when none was available they wouldn't prescribe an alternative on a 'named patient basis' so I thought I wouldn't be stuck again (if at all possible) with no T3 so I've sourced my own.

He was interested of where I got T3 etc etc and can you imagine their patients' consternation when told they'd get no more on the NHS. Maybe even not know about how to go about sourcing it.

[shaws Administrator in reply to Clutter]

Clutter I couldn't access the two BTA links? I wondered why? Have they removed them?

[helvella Administrator Thyroid UK in reply to shaws]

Agreed - they no longer work.

[Clutter in reply to shaws]

Shaws and helvella

Both links above open for me.

These are the links again from my bookmarks:

british-thyroid-association...

british-thyroid-association...

Let me know if you are unable to open them and I'll copy and paste the information.

[shaws Administrator in reply to Clutter]

Thanks Clutter. They still wont open for me.

[helvella Administrator Thyroid UK in reply to Clutter]

The BTA site appears to be broken - completely.

[Clutter in reply to helvella]

Helvella,

The links and BTF site are working fine for me (just tried again). I emailed links to you and Shaws earlier and Shaws was able to open them.

[helvella Administrator Thyroid UK in reply to Clutter]

Clutter responded to NHS plans to stop prescribing life-changing thyroid pill after drug company hikes its price up by more than 5,000%

Server not found

Firefox can't find the server at british-thyroid-association....

Check the address for typing errors such as ww.example.com instead of example.com

If you are unable to load any pages, check your computer's network connection.

If your computer or network is protected by a firewall or proxy, make sure that Firefox is permitted to access the Web.

Sorry, I mistyped and put BTF not BTA. But am still getting the above on BOTH links. Obviously one is odd - it include "sandbox" in the link. Might work but they don't know what they are doing.

[Clutter in reply to helvella]

Helvella,

I've seen 'sandbox' included before in BTA web addresses but it isn't included in all. Have you tried to open the links I emailed to you?

[Rapunzel]

Mmm what's going on here then...

Tumbleweed skitters across the desert

healthunlocked.com/thyroidu...

change.org/p/itt-campaign-g...