Thyroid UK

Help please very confused

Help please very confused

I been on combo of t4/t3 for 16 years

Now my gp pulled the plug on my t3 tablets my blood test last week was so low the hospital rang to see if I was ok told them the problem was not having t3 tablets

Reading some posts do I need to ask for a named patient prescription and do I ask GP or endocrinologist and do I ask for sanofi t3 tablets and can anybody tell what costs would be or would I be better to source from abroad and if so what’s the best place/website

I feel so terrible it’s like going back 16 years

32 Replies
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They are not supposed to withdrawn T3 if you have been stable on it for a while but the doctors/endos are ignoring this fact.

This is from the BTA:

The current situation – triggered by what would appear to be an unjustifiable cost increase – has left patients, and many of their doctors, in a very difficult position. We are hearing from patients who have been treated with L-T3 for many years who feel they have now been abandoned without care, and whose doctors, no longer able to prescribe it, are leaving them to their own devices and in some cases even advising them to buy L-T3 on the internet (where it is available from other countries, and at much lower prices than in the UK). Sadly the relationship of trust between doctor and patient has been seriously compromised. Patients are confused as to the reason why their doctor’s decision to prescribe L-T3, based on clinical judgement, is now being blocked. Is the real reason for the restriction due to recent price increases or to sudden doubts about the strength of evidence for its use? Should clinical need not come before financial considerations? Who should have the final say about whether there has been an improvement in patient well-being?

The proliferation of online health information and forums has added to the confusion. Access to peer support is often beneficial but unfortunately patients sometimes find misleading and false information about their condition and the treatment options, and the consequence of this can lead to faith in their own doctors being undermined, and they are left concerned and confused. and..........

The current situation – triggered by what would appear to be an unjustifiable cost increase – has left patients, and many of their doctors, in a very difficult position. We are hearing from patients who have been treated with L-T3 for many years who feel they have now been abandoned without care, and whose doctors, no longer able to prescribe it, are leaving them to their own devices and in some cases even advising them to buy L-T3 on the internet (where it is available from other countries, and at much lower prices than in the UK). Sadly the relationship of trust between doctor and patient has been seriously compromised. Patients are confused as to the reason why their doctor’s decision to prescribe L-T3, based on clinical judgement, is now being blocked. Is the real reason for the restriction due to recent price increases or to sudden doubts about the strength of evidence for its use? Should clinical need not come before financial considerations? Who should have the final say about whether there has been an improvement in patient well-being?

The proliferation of online health information and forums has added to the confusion. Access to peer support is often beneficial but unfortunately patients sometimes find misleading and false information about their condition and the treatment options, and the consequence of this can lead to faith in their own doctors being undermined, and they are left concerned and confused.

btf-thyroid.org/information...

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On T3 solely for 15 years then withdrawn put on t4 only tried to see another endo pint blank refused even without seeing me found endo in Scotland ho does prescribe combination and with my gp saying yes to referral l am unsure , the point is

Nobody should be put in this position of searching and panicking trying to keep well

Who ever made this descion needs to be accountable for all people who are now struggling

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The Government is playing Russian roulette with peoples lives

I am waiting for Gp ringing me back I will let you no what they say

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You are correct - we shouldn't be pressurised into swallowing a product that doesn't make us feel well. In fact many of us feel more unwell when we begin thyroid hormones but we are disbelieved. It's well seen Endocrinologists don't have hypo themselves otherwise they'd be kinder and not dictatorial.

Not even to give patients an idea they were going to pull the carpet from under them by withdrawing it instantly- even before being able to source an alternative and some cannot pay for life-giving hormones at all. It is the cruellest of decisions. Neither can people pay for private consultations about £150 per consult.

If endocrinologists don't like the cost of liothyronine, they should forego their fees as many patients waste their time and money hoping against hope that, at last they will see someone who is sympathetic and will prescribe.

I'd really like to know who has made up the story that T3 is useless and that levo is preferable which is now a case of 'like it or lump it'.

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Jane50,

What reason did your GP give for withdrawing T3? Was T3 originally recommended by a NHS endocrinologist?

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Zion2,

We're all aware that withdrawal of T3 is often driven by cost but it's not always the only reason. It may be on red alert in some areas but T3 is still prescribed on the NHS in many areas.

The advice I give Jane50 will depend on her answers to my question.

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As I seem to have annoyed you I’ve deleted my reply but I was only saying as it is from mine and others experience ? Why you had to jump at at me I don’t know. My nhs endo wasn’t aware my gp can’t prescribe T3 anymore? My tests showed good results on NDT therefore both endo and gp agreed I stay on it. I was told cost is the reason gps are not able to prescribe all over the country and that it will become harder too. I hope you get the reply you are expecting from Jane 50. I shall not comment again.

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Zion2,

I'm not jumping at you. It's simply not true that NHS has stopped prescribing T3. Some CCGs and health authorities have but not all. Much of the reason for not prescribing T3 is due to cost but there are also other reasons. Some endos won't support T3 because they don't believe in it and it's nothing to do with cost. I needed to know why Jane50's GP had withdrawn T3 prescription to inform my reply to her.

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Hi everyone

My GP Stoped my t3. Prescription becouse they said that there was no Evidence that it worked with t4 they said that if I still wanted to take it I would have to pay £250 per month

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Jane50,

See my reply earlier how to challenge your GP.

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Hi I have rang my endocrinologist And asked his Secretary if I could have a named patient prescription will let you no if I get one if I don’t I will be going to my GP armed with the Information you gave me

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Jane50,

Named patient basis prescriptions are for medicines which aren't licensed for use in the UK. Liothyronine is licensed so you don't need a named patient prescription. It would be good if your endo is NHS and will write to your GP confirming you should be prescribed T3 though.

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Were you originally seen/prescribed by NHS endocrinologist and which CCG area are you?

See these replies to similar posts this afternoon

healthunlocked.com/thyroidu...

If you were well and stable on T3 the clear guidelines say you should be still prescribed. If they insisted on reviewing it, it must be with a referral to NHS endocrinologist FIRST

Make an urgent appointment with GP

Gather up as much info as possible and take along a supportive friend or family member to the appointment as a witness

Insist on reinstatement if prescription while waiting for referral to an endocrinologist

Highly likely to have extremely low vitamin levels as result of T3 being withdrawn

Ask for vitamin D, folate, ferritin and B12 to be tested

Typical posts after T3 stopped

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Also take your case in person to your MP

(You won't be first they have seen I expect)

The reason is entirely financial

m.imgur.com/a/U42vD

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

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Even when my Gp referred me to nhs endo at my hosp she told me that after the first mths t4/t3 she prescribed that my gp has to presecribe to which he sent her a email saying they can’t do that and she should know that and she came back with she ‘wasnt aware’. I told my gp I was going back on NDT, sourced it myself and feel ten times better will not go back on Levo and my gp AND the endo agree. Although my impression of the endo was one of disbelief how she holds down her job she appears to know nothing about thyroid problems and said she only sees overactive ! I’m doing me now, I know I feel better and wish I’d changed years ago

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Firstly thanks for your quick reply’s

I was put on combo by nhs endocrinologist my CCG is Airedale/wharedale/craven

It was thyroid level was so low and when hospital rang they made me a Appointment I went on Thursday to see endocrinologist he said he could see that I needed t3 but he’s hands were tied all he did was up my Dosage to 300mg the Weird thing about this is that he was the one Who put me on the combo 16 years ago he is also my Diabetes doctor

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Jane50,

Why did your GP withdraw T3?

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They told me it was down to cost and the Government

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Sorry they also said that there wasn’t Enough evidence to say taking t3 worked

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Do you have any documents between endo and/or your GP about last 16 years of successful T3 treatment?

You need to go and see in person your MP

It is entirely down to cost. Nothing to do with anything else

Obviously endocrinologist has had pressure applied.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

You will need your vitamin levels tested urgently by GP

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The also insisted that NDT was also pointless and gave various reasons of why but one of our Advisers wrote to the BTA and RCoP who ignored three yearly reminders for a response.

thyroidscience.com/Criticis...

If these two Associations had 'evidence' they should have put it forward and considering that NDT was the only thyroid hormone replacement from 1892 up until it was withdrawn in the UK (it is in use elsewhere) patients recovered and didn't die a long drawn-out miserable death.

The have made a statement regarding T3 which is also untruthful as many on this forum can testify that they improved with the addition of T3, or NDT, or T3 alone.

These crutches have been withdrawn again and I would say due to lies and misinformation.

Patients' wellbeing is evidence and what kind of doctors are these who, despite the evidence that patients who do not get well on levothyroxine, recover on options.

In reality it is the exorbitant cost which whoever was in charge of this just let the cost increase without an overseer querying it.

It was a 'perfect' excuse for those Endocrinologists who seem to be immune to assisting their very unwell patients to recover and don't lie awake at night wondering how the patient is and obviously they may be 'career' doctors and don't have that iota of compassion (even a tiny bit) to do everything in their power to relieve all clinical symptoms.

It is not a 'fashionable' request to ask for some T3 - it is a request of necessity.

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I agree with you l am also type 1 Diabetic witch is all out of Sync and Cholesterol level at nine

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They say that as another excuse to make our lives hell. Not enough evidence! Liars. 😡

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Jane50,

You didn't use the Reply button so I didn't get notifications that you had replied.

The NHS England consultation which ended in October 2017 accepted that T3 is clinically effective but said that Levothyroxine is a cheaper alternative although they also accept that it is not an effective alternative for everyone.

I would write to your GP (cc your MP) and tell your GP that the CCG does not have the authority to tell GPs what not to prescribe and you believe your GP is in breach of GMS contract by with-drawing treatment you have been told you need. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

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...

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...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3.

mills-reeve.com/files/Publi...

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Thanks will do

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Go to your GP, they are the experts.

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Really ? :-) I have been on this Forum for over six years and read daily of posts by members who are suffering due to incompetent Doctors - sadly.

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The ONLY reason many of us here finally got well is coming here to this extremely knowledgable forum and learning just how complex this disease is

I would still be virtually immobile had it not been for advice on here

A few senior endocrinologist know that many patients need higher dose of Levo and or T3 adding

Very few traditional medics recognise the widespread gluten intolerance and leaky gut under lying many cases or the absolute importance of low vitamins and malabsorption

Though they do in hindsight sometimes recognise the problem once the patient has made the leap.

Too often we are left under medicated on Levo. FT3, antibodies and vitamins never tested or food intolerances considered

We’ve learnt the hard way on here, if you’re not well on levothyroxine, just testing TSH tells virtually nothing

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hi all

still waiting for call from doctor will give another call in morning

felling terrible if I get no joy might have to go down the line getting t3 from abroad

can anyone help which is best way

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Pursue getting on NHS and don't give up

british-thyroid-association...

Meanwhile put up a new post asking members for advice on other T3

If your endo or GP will write a private prescription then you can get German Thybon Henning at £30 for 100 tablets 20mcgs

German only comes in boxes of 100

So private prescription should read 100 x Liothyronine 20mcg

PM me if you need to know more info

Or French is £25 for 100 x 25mcg - might come in boxes of 28 - don't know much about it

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Hi all

Just had a letter of my endocrinologist to give to my GP asking them to give me a prescription for t3

I have took into my GP surgery and a prescription manger came out saying that government pulled all t3 treatment and maybe I should try another make of t4 I said no my body doesn’t convert t4 to t3 that’s way I had been put on these tablets he said that it will have to go in front of GPs but I was the only one out of all the people who had there t3 removed that had come back I find this hard to believe

He trued to tell me that all GPS are not aloud to give t3

When I told he what I had found out

He just said in a loud voice that this was not right

I will let everybody no what my GP says

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Print out that statement by BTA

british-thyroid-association...

Plus Clutter has some links on GP being in breach of GMC patient care if your endocrinologist says you have clinical need

CCG's can NOT refuse T3 on grounds of cost

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hi just had a phone call of the prescription manger saying my GP has refused to give me a

prescription for t3 he has told me to get in touch with my specialist

i told him that GP was in breach of GMC patient care and he said that was wrong

been InTouch with specialist secretary and he is sending private prescription out

can anybody tell me how i get this filled out in Germany (thybon henning)

thanks amanda

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