T3 recently withdrawn: I have hashimotos and was... - Thyroid UK

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T3 recently withdrawn

MAslam73 profile image

I have hashimotos and was taking 50mcg T4 and 30mcg of T3, until my GP recently refused to prescribe t3. My health is now deteriorating, Please could you PM me with details on reputable ways of where to get T3 or NDT please? so that I can avoid getting ripped off on dodgy websites.

17 Replies

MAslam73,

Did your GP say why T3 is being withdrawn and has GP increased your Levothyroxine dose?

Was T3 originally recommended by a NHS endocrinologist?

MAslam73 profile image
MAslam73 in reply to Clutter

It was been withdrawn because of cost and some notice they have been given to withdraw t3 and armour. I'm currently taking 112mcg of T4 while I wait on a exceptional circumstances application being made. Yes the T3 was recommended by a NHS endocrinologist as I had really struggled to tolerate t4 the t3 made a world of difference and my health has now started to decline again.

shaws profile image
shawsAdministrator in reply to MAslam73

It is cruel to withdraw the life-saving hormone as T3 is the only active thyriod hormone accepted by our billions of receptor cells but they are so ignorant of the importance of T3.

I'd complain to your local MP and say you are now becoming unwell. He can also listen to last night's debate in Scotland.

Dr Lowe who wrote the following would never prescribe levothyroxine, only NDT or T3 for thyroid resistnt patients. Despite three yearly requests before his untimely death he never did get a response. Why?

thyroidscience.com/Criticis...

stopthethyroidmadness.com/m...

MAslam73 profile image
MAslam73 in reply to shaws

Thanks I will be informing my local MP, I'm quite disgusted over my treatment on the NHS, the pharmaceutical companies or whoever is responsible for this mess, should have never been allowed to create this situation, this really must change.

shaws profile image
shawsAdministrator in reply to MAslam73

Definitely - it is absolutely disgraceful that our lifebelts have been thrown overboard and we cannot swim with T3.

Clutter profile image
Clutter in reply to MAslam73

MAslam73,

I would write to your GP (cc your MP) and tell your GP that you believe your GP is in breach of GMS contract by with-drawing treatment you have been told you need by a NHS specialist. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs if you can access it (BTA server has been down for a week or two).

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...

If the CCG instructed your practice to withdraw Liothyronine they should first have consulted on the impact it would have on patients and will be in breach of guidelines if they did not. mills-reeve.com/files/Publi...

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...

Please also sign the petition below requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

ps I think you are undermedicated. 30mcg T3 is equivalent to 90mcg T4. Your dose should probably be nearer 140mcg.

shaws profile image
shawsAdministrator in reply to Clutter

I cannot open the BTA link. Maybe its down at present?

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

Yes website is down and been down about 2 weeks

Conspiracy perhaps to stop us accessing pro T3 statement

I am being emailed it as PDF from ITT Facebook

So once I get it can email it to you or any one that needs it

PM me

shaws profile image
shawsAdministrator in reply to SlowDragon

I think that's why it has been 'lost'. They didn't like that we were publishing it when doctors were not taking any notice of it.

Are they being hauled over the coals for permitting T3 to be prescribed? Why were they lax in finding out the cost?

There are other less cost T3s but,,of course, not licenced.

I doubt we'd come to harm from unlicenced hormones, as NDT has not made patients worse or develop other diseases but relieved the clinical symptoms for over 100 years. No blood tests then. :)

MAslam73 profile image
MAslam73 in reply to Clutter

Thankyou this is really helpful, I've signed the petition.

Thanks for the tip, I'm taking as much T4 as I can tolerate, the last time I took 125mcg of T4 under the guidance of my endo I had a really bad pounding heart and anxiety, I still break out in hives and feel terrible on levothyroxine but I have no others options at the moment but to take it.

Clutter profile image
Clutter in reply to MAslam73

MAslam73,

Make sure your GP knows and you put it in your appeal letter. The practice might save on its drugs budget by withdrawing T3 but if patients require more GP appointments and other prescriptions to cope with adverse effects on Levothyroxine there will be additional costs to the practice in other ways.

SlowDragon profile image
SlowDragonAdministrator in reply to MAslam73

Essential to get vitamin D, folate, ferritin and B12 tested

Highly likely to have crashed right out.

This happens to most who have T3 stopped

DEMAND NHS full testing, including for Pernicious Anaemia if B12 is low.

Thyroid tests needed 6 weeks after T3 stopped too of course

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

MAslam73 profile image
MAslam73 in reply to SlowDragon

Thankyou for the advice, after taking levothyroxine, my vitamin D and iron levels plummeted and I keep crashing. I take every supplement under the sun, but without the t3 its as if my digestive system cannot absorb any nutrients and I generally eat healthily, take supplements, eat superfoods and have found that eliminating gluten and diary does not correct a hormonal imbalance, however after lots of trials and errors following a low fodmap diet has helped.

lynmynott profile image
lynmynottPartner

Hi MASlam73

Thyroid UK is making a note of people who have had their T3 withdrawn because we are being asked for case studies a lot in our campaign. Would you be willing to send me your story and possibly be willing to talk to a journalist at some point? You can respond by email - enquirieis@thyroiduk.org

MAslam73 profile image
MAslam73 in reply to lynmynott

Hi, I will email you the letter I have submitted to my endo and gp detailing my story and I am happy to talk to a journalist and campaign further, even though I'm a bit of a mess at the moment as I am not optimally medicated.

Update:

Please see my response from my local MP

:

Richard has asked me to thank you for your email, and reply on his behalf.

Richard is aware that the Royal College of Physicians has published guidance regarding the diagnosis and treatment of hypothyroidism. The guidance does not recommend prescribing additional T3 hormone in any presently available form, including NDT treatments.

As you may know, earlier this year NHS England announced that it will consider removing the T3 hormone from its list of regularly prescribed drugs, owing to the high cost of getting this medicine, and the proven effectiveness of the T4 hormone as an alternative. The prescription of Liothyronine will still be available in exceptional circumstances where there is a clinical need. GPs may prescribe it on a named-patient basis and prescribing decisions are rightly a matter for the doctor in consultation with their patient.

I would like to stress that no final decision has been taken so far, and that the Government is currently analysing a wealth of evidence on the subject. This proposal underwent public consultation until October 2017, and can be viewed at the following here:

engage.england.nhs.uk/consu...

Richard is more than happy to write to the CCG, who make these decisions, on your behalf to highlight the impact that withdrawal of the drug has had on your day to day life. They will look into the matter, and provide Richard with a detailed response once they have reviewed the decision.

As soon as we receive a response, we will be in touch.

Kind regards,

Victoria.

Caseworker for Richard Harrington MP

-----------------------------------------------------------------------------------------------------------------

Dear Richard

As my local MP I am writing to inform you and also see if there is any way you can assist. I suffer from a condition known as Hashimotos thyroditis and have been recommended a course of liothyronine as part of my treatment to replace hormones that my body no longer can make itself. My GP practise has refused to prescribe my medication due to cost implications. When I was taking liothyronine for the first time, I got to experience what being normal was, being able to think clearly and have energy to get through a full day. Refusal of treatment has greatly impacted the quality of my life, I currently am unable to function and am especially struggling to work as my health has deteriorated and all my hypothyroid symptoms are returning, I again have become a shadow of my former self and would like to remain being a productive member if society.

Liothyronine is a life saving drug that I am being refused, the practice might save on its drugs budget by withdrawing liothyronine but due to how much my health has suffered from the adverse effects from Levothyroxine, I will require more GP appointments and other prescriptions to cope, which will create additional costs to the practice in other ways.

I have attached my letter to detailing my story and would like to continue receiving the much needed treatment for my condition, the BBC recently reported on how pharmaceutical industry is generating high profits by unreasonable increases to prices. for example the amount the NHS paid per pack of liothyronine rose from around £4.46 in 2007 to £258.19 by July 2017, an increase of almost 6,000%. The CMA said that last year the NHS spent £34m on liothyronine, up from about £600,000 in 2006. In Germany and Sweden, 100 liothyronine tablets cost £25 (25p each), in the UK it's an astonishing £854. Something has gone very wrong here.

Unfortunately in my case I cannot privately afford this medication and would like to do everything I can to ensure that patients who need this treatment like myself are treated fairly and would appreciate any support you can offer.

SlowDragon profile image
SlowDragonAdministrator in reply to MAslam73

there is this from patients association - pages 5-8

Particularly like the line

absence of evidence is not evidence of absence

patients-association.org.uk...

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