Thyroid UK

Latest on prescribing T3 in the UK to remain available.

This is the link:

bbc.co.uk/news/health-42179765

Of course, there has to be some opposition, although I think this doctor believes that it will put a strain on Endocrinology if every person is to consult an Endcrinologist first re T3 being prescribed,

But Simon Pearce, professor of endocrinology at Newcastle University and member of the Society for Endocrinology, said the decision was "preposterous".

He added: "Kicking liothyronine to secondary care isn't going to solve the problem.

"During 2016 there were 75,000 prescriptions for liothyronine in England. Assuming a prescription lasts for one month, that amounts to about 6,000 patients. Assuming 50% of them will complain and request referral to secondary care, that's an extra 3,000 new outpatient appointments.

"Assuming each endocrinologist sees around 300 new appointments each year, then you need 10 new endocrinologists. Where are they coming from and who is paying for this?"

bbc.co.uk/news/health-42179765

68 Replies
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Shaws,

His opposition is referring patients to secondary care for endocrinologists to initiate Liothyronine before GPs take over prescribing it. I don't think the repercussions were thought through on that. People wait months for endo appointments already.

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If healthcare had a hypothyroid strategy that, in the main, worked for the many patients in need... this debacle wouldn't exist.

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LindaC,

I believe this fuss about Liothyronine in the UK is entirely due to the extortionate cost. I don't recall all this angst about it when it was reasonably priced. There are a couple of long term observational studies which prove it is safe to take too.

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Clutter, I'm from that area/that authority.. those comments seem not, unfortunately, to be only about pricing: I dearly wish they were. Not pro-T3 up here!

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LindaC,

Prof. Pearce's comments are about the feasibility of 3,000 new outpatient appointments for T3.

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Of course they are Clutter! It's just that they go wider than that. And 3,000 new outpatients would not be hitting Newcastle upon Tyne... for sure.

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LindaC,

No-one is suggesting they were.

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And no one could feasibly suggest that those are the major concerns in these circumstances - because they are SO preposterous so as not to happen.

Lesson learned for me: I refrain from responding to anything connected to...

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All doctors/endocrinologists keep stating that levothyroxine alone should be prescribed, and many members on this forum have had their hopes built up when they've been given an Endo's appointment: they leave so disappointed as their request has been dismissed entirely sometimes with arrogance by the doctor. They were hoping against hope that a trial could be given as they were so ill on levo.

A couple of excerpts from the BTA:

26(III,B)

The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose

of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed

(IIb,B)

3.1.3

Guiding treatment with tri-iodothyronine

If tri-iodothyronine is used as a replacement hormone increasing doses should be used

until serum TSH is within the reference range. The measurement of FT4 is of no value

in patients on tri-iodothyronine replacement and the measurement of FT3 is of limited

value because of the variability after taking the replacement dose.

There has been considerable recent interest in using a combination of thyroxine and

tri-iodothyronine therapy. This interest was stimulated by an initial small study that

reported improved mood scores and self-reported wellbeing in the combined therapy group compared with the thyroxine only group.

36

However, a number of larger studies

have failed to confirm the initial finding and there is currently no consistent evidence

to suggest that combined therapy has advantages over therapy with thyroxine alone.

37-42(Ib)

The measurement of TSH is required to optimise tri-iodothyronine replacement therapy

(9)

There is no consistent evidence to recommend the use of combined therapy

with thyroxine and triiodothyronine in comparison to thyroxine alone

(Ib,A

*****

I emboldened the last para as I disbelieve this. I also believe they pick and choose and talk about ref. ranges but we know that the lower the TSH the more improved we feel.

****

26

(III,B)

The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose

of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed

(IIb,B)

.

3.1.3

Guiding treatment with tri-iodothyronine

If tri-iodothyronine is used as a replacement hormone increasing doses should be used

until serum TSH is within the reference range. The measurement of FT4 is of no value

in patients on tri-iodothyronine replacement and the measurement of FT3 is of limited

value because of the variability after taking the replacement dose.

There has been considerable recent interest in using a combination of thyroxine and

tri-iodothyronine therapy. This interest was stimulated by an initial small study that

reported improved mood scores and self-reported wellbeing in the combined therapy

group compared with the thyroxine only group.

36

However, a number of larger studies

have failed to confirm the initial finding and there is currently no consistent evidence

to suggest that combined therapy has advantages over therapy with thyroxine alone.

37-42(Ib)•

The measurement of TSH is required to optimise tri-iodothyronine replacement therapy(99)

There is no consistent evidence to recommend the use of combined therapy

with thyroxine and triiodothyronine in comparison to thyroxine alone (Ib,A

***************************************

It would appear that these Associations are more concerned with blood test results than the patients who disagree with them: who recover when stopping levo or adding T3 to it. Many improve on NDT (of which the BTA have made false statements) or T3 only. Doctors should be able to prescribe hormones that suit their patients but they are all tied up in 'regulations'. or kept in line by being told they put the patient in danger. Regulations which keep most on this forum and worldwide unwell and desperate.

As Dr Skinner stated "A parlous situation for patients" when the emphasis is upon blood results rather than on the patients' symptoms as a whole.

btf-thyroid.org/images/docu...

They dont mention people who are so unwell that suicidal thoughts aren't too far off.

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The Worldwide Register in the making by Dr Skinner and his view that legal action would likely need to be brought... :-( Had it not been for Gordon Skinner... I don't know where I'd be now (and I'm not good with hypothermia!). Also Dr P, incidentally and without hesitation. diagnosed me hypothyroid (I'd gone to see him for something else!) with an adrenal issue.

Up until 2014/15 even, GPs could prescribe what they believed could help their patients, whether imported and on a named patient basis or privately giving prescriptions which suited an individual need. Now GPs are said to be worried about liability re their insurance... it's a ruse to put them off and the suffering is worsening, rather than - in the 21st C - abating.

Been saying for a while, there is a concerted effort to stamp on anything other than Levo and basic thyroid testing (much being a waste of time in any event, unless at either ends of the scale, in which case people would know about it in any event). Truly horrified at what's going on and those who could and would stand in our corner... are rapidly on the decline, whilst hypothyroidism seems to be on the increase. Oh my! As Dr Skinner stated "A parlous situation for patients"...

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Considering how many times Dr S was called before the GMC for bringing good health to patients who remained undiagnosed/undertreated/untreated. It certainly wasn't his patients. Who did? that's what I'd like to know.

How many doctors would have patients who wrote 10,000 testimonials to the GMC that they only recovered under Dr S's care.

What about a Endo who told his patient 'we've got him now' not knowing she was also consulting Dr S.

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I know shaws - these people are quite chilling... would make a spy movie look tame. I've seen similar stuff done within law (to 'their own') - despicable, school boy sneaks!

But, and we must celebrate, they never got the most prosecuted doctor... too smart for them!

Sadly, the harsh reality is, many of them are simply too dim to know what they need to know and too dim to be able to tell the difference.

Hang on to those hats people... take care of yourself :-)

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I always thought doctors had a 'vocation' (i.e.doing their utmost to restore the patients to good health) rather than desiring prestige..

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I firmly believe that years back doctors knew they had a relatively privileged role in society and [many, not all] had a modicum of humility surrounding the entrusted role they had with their patients. I had a Czech/Hungarian doctor from birth to 18 y/o - he was the loveliest man - yet today a young GP seems to think that I'm so anti-doctor... oh my! What would he have thought to see me dance a jig and sing with Dr Skinner ;-)

I have met several very good doctors, several mediocre (as my father used to say, 'just scraped though') and several disgraces to the profession. Over-reliance on blood tests (some are way more appropriate than others!) and snotty arrogance... leaves me - most of us - cold. Wondering if that's what my hypothermia is all about ;-)

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I'm guessing this comes back down to the cost of the drug, & a GP having to balance books... As a person who from 2009 trusted my GP to know what he was doing re t4 until 2016 another couple of months for me to know I was getting to the right knowledgeable person, wasn't a problem... Let's hope people take up the right for a referral because I'd still be ill... Once at the Endo if they can give trials of t3 as again, my GP hasn't a real clue, then eventually people will get a crack at t3 & a person who can work out blood tests etc etc... It's all very sad on this crowded island x

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Scorpiojo,

People already wait months for an appointment. If every patient wanting/needing T3 has first to be referred to endocrinology they're likely to die of old age before they see an endo.

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Quote from this article "NHS England received around 5,800 responses during its consultation on its proposals to restrict access to "low value" medicines.

But in a board paper, it said liothyronine should be available."

LOW VALUE ? !!!! Do they actually know what liothyronine is?

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For 'low value' read 'high cost', thanks to drug company greed and NHS refusal to buy it more cheaply.

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Maybe they are unaware what liothyronine is, as you say. After all it is only thought of as T3 (by most medical personnel) a thyroid hormone. I dont think they're aware that it is only Active hormone and T4 is inactive. I feel quite sure about that.

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I don't think they're talking about cost but that they believe levo is superior to lio. I also believe that they think we are making it up that we feel much better when T3 is added or we take it alone. I also think that because they are 'educated' and we aren't that they assume they know more about thyroid hormone replacements than those who take it.

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Totally agree shaws . Endo's are most often very arrogant, think they are 'highly educated', In 2013 I saw an endo at my local hospital as an out patient, having had a complete meltdown and had been an in-patient for 5 days. The general physician had thrown her hands up in despair and organised for me to see this endo as an out patient. He was totally incapable of reading my thyroid blood results, because I was only on T3 and he couldn't comprehend why my T4 was negligible. Amongst other accusations, he accused me of bringing on my illness, that I was a liar, he was very rude, abusive and abrasive. I learnt that he tutored medical students ...... totally aghast

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That was a horrible experience for you. Unfortunateley because someone has a Degree it doesn't mean they can work things out for themselves or through their patients' experiences.

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Shaws

Is this the best news I've heard this year? If so....thank you so very much, from the bottom of my heart for keeping us informed. As long as I haven't misunderstood....then I am absolutely delighted....What a huge relief to all those sufferers who need T3 to sustain some sort of normality to their life - me included. Shon D

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My next appt is Jan... So I hope things go smoothly... The consultant was surprised my GP was still prescribing, but not half as much as I was lol... I've dreaded that row coming... If you only see an Endo once a year I don't see how the Endo can prescribe it each month, or does it mean if your Endo agrees you are better on it, giving direction to our GPs... Hope everyone is ok... Big hugs & thanks Shaws x

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Scorpiojo,

It means that endo should initiate the prescription and GP should issue repeat prescriptions.

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Scorpiojo, My Endo hands out a different form, which isn't a prescription but has all the prescription information on it. I then hand that in at my GP reception, and a GP converts it into a prescription, with the GP as the actual signatory.

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The exact wording re what they are now saying re T3 is in this document on page 5.

england.nhs.uk/wp-content/u...

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It's great that they haven't banned it but- just scrolling down this document

england.nhs.uk/wp-content/u...

to page 114 of the PDF (p 19 of Guidance for CCGs)

Looks as if those of us who've already been told by an NHS endo that we have a clinical need for liothyronine will have to jump through the hoop again. I'm sure my endo has moved on since I last saw her in 2002. There'll be a lot of us queuing up for the few NHS endos who are likely to re-prescribe (?!) it for us.

It says: 'individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine where clinically appropriate.'

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On Tuesday I downloaded five different health authorities and each one stated the same thing in a slightly different format.

It's worth a read just google Clinical Commissioning Group with Liothyronine T3. and up comes each region i.e. county.

None of them recommend staying on T3 and then only for a short time after the removal of the thyroid due to cancer. Then to move all patients onto Levothyroxine.

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I think the new rule seems to be that instead of GPs persuading (or forcing) us to give up T3, it's going to be the endos instead. Those of us who've already been told we have a clinical need will need to be reassessed. It's saying the endos who originally assessed us didn't do it properly. With people who want T3 for the first time too, that's going to require a lot of endos. And many won't be in favour of T3.

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The last para is really disappointing as it is a lifeline for many. Isn't it a pity most Endos are male and it would be good to survey them to ask how many actually have hypothyroidism and what have they been prescribed.

Many men (not all of course) just don't understand how women's health is affected from puberty onwards until death, with pregnancy or difficulties in succeeding and hysterectomies etc etc - we could have quite a list.

We are not stupid and why should we be restricted to something that doesn't improve our health and remove all clinical symptoms?

Those endocrinologists who aren't sympathetic and believe women are irrational and don't know what is best in replacement hormones is because they are unsympathetic and couldn't care less that many are housebound, unable to work, no-one believes they are ill as bloods are 'normal'.

They wont provide sufficient thyroid hormones and why say 'synthetic is best' when many on this forum have recovered their health on the very original thyroid hormone replacement, which seemed to have a faultless journey from 1892 up until the present day.

I cannot understand a doctor, with a very unwell and desperate (to be well) patient sitting in front of him who is disregarded as not having a brain to know whether or not a prescription hormone suits or not.

I don't think hardhearted or insensitive are good enough words to describe them as they are supposed to be 'healers and professionals' who insist we swallow some tablets which only compounds the problem rather than relieves it.

I have had the same response to T3 as this woman in the video and lots also have improved with T4/T3 or NDT.

bbc.co.uk/news/av/health-42...

Is it too much to ask for options to levothyroxine?

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Shaws. I’ve just had an appointment with an endo for the first time ever after many years of being on T3 only. He told me his mother and sister were hypothyroid and that he would never give them T3 because of the danger to their hearts. He said that if I was a 20 year old it wouldn’t be so bad but that the danger to the heart increases with age because when you take T3 the pulse rate increases and eventually causes damage and can shorten life. I told him that I realise my pulse rate goes up when I take T3 but quality of life matters more to me than length. I also said that I’d read T3 actually helps hearts and if a heart doesn’t get enough of it then it’s likely to be damaged. The endo was decent and listened to me but the prejudice against T3, no doubt fed to him during his medical training, was very strong. I was lucky that at the end of the appointment he told me he would write to my doctor and tell him that my T3 prescription should be continued. Unfortunately there’s probably many otherwise good endos who truly believe that they will damage their patient if they give them T3.

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The statement he makes is untrue. I do not believe for one minute if either of his relatives were so disabled by levothyroxine that he wouldn't at least add some T3 to T4.

I am on T3 only (sourced my own now - although GP did previously) and I've saved the NHS thousands of £s by not having to call an ambulance often: go to the A&E - only to be discharged after few hours although Cardiologist was puzzled and was thinking of putting something in my heart to see what was actually happening.

This went on for a few years, ambulances when on holiday, from work etc etc. Middle of the night. It was never-ending. Even when I was on T4/T3 too.

Since being on T3 only, I've had no palps, ambulances or A&E and my symptoms have been relieved.

They make statements that have no actual scientific proof, rumours, rumours, rumours.

Even if we took too much levothyroxine, it would have the same affect as too much T3. It has turned my health around completely. Sometimes we can also be affected by fillers/binders in whatever hormone replacement we take.

I am glad he has directed your GP to prescribe. That's a huge relief for you.

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In my opinion the British Thyroid Association can be blamed for keeping people sick and even the suicides of those who cannot bear their illness any longer. Their complacent and contradictory guidelines where they acknowledge that some people, mainly women of course, remain ill on T4 but offer nothing but a ‘trial’of T3 are pathetic. Even their questions and answers format state ‘unknown’ in several cases such as:

Q: Does L-T4 therapy that returns the serum TSH levels of hypothyroid patients to the reference range also result in normalization of their serum T3 levels.

A: Patients with hypothyroidism treated with L-T4 to achieve normal serum TSH values may have serum T3 concentrations that are at the lower end of the reference range, or even below the reference range. The clinical significance of this is unknown.

Shaws, I think you will know the clinical significance of low T3 – and so do I. Unfortunately the PrescQIPP argument will carry an awful lot of weight with my GP and I can just see it being waved in my face as the final proof that I don’t need T3 and the practice can save money. I think it’s more than disgusting that with your health history you have to source and buy medication.

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It certainly changed the views of my two doctors and it is the COST primarily rather than the patient.

They know I source my own now as they used to do. They have to following the guidelines.

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It seems to me that all of the people who require T3 or NDT should try to source their own.

If they can possibly obtain some of the blood tests required on the NHS and then use private testing for the rest.

I do understand the some people will put up with bad health for years and not question it. The same people would not question GP's.

The thing is we can try and help but it's like banging your head against a brick wall and extremely frustrating.

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When we are diagnosed and prescribed few will ever have heard of hypothyroidism.

None of the medical personnel I consulted certainly didn't and I was diagnosed with this, that and something else and not even an overnight stay in the A&E and discharged as probably viral with high cholesterol about 3 days before I diagnosed myself.

It was a first aider who, finally, suggested thyroid. I demanded a blood test form as I had no clue about 'thyroid. I had test at 8 a.m. and GP phoned about 10 a.m. to say 'who told you to get a blood test'. I said 'I did myself' so she said come to get a prescription your TSH is 100.

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Your story is very interesting and good for you.

I do try to help people and have done all my life but some people are just to nervous or are indoctrinated with the wrong idea that all Doctors know what they are about. What a great pity.

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I think we should prescribe levothyroxine for all of them if they should become hypo and probably a low dose.

They take no account of clinical symptoms: if they are relieved: or not: and they fail to understand that is the purpose of us taking thyroid hormone replacement - to relieve ALL clinical symptoms not to get our blood tests somewhere in the range. All these problems have arisen since they introduced blood tests along with levothyroxine. So they are more interested in the test than in relieving patients' disabling symptoms. Something isn't right and not being on sufficient thyroid hormones we can develop other more serious illnesses but they refuse to belief that either. The are only concentrating on the result and ignoring patients symptoms altogether.

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We've had several members who have threatened to commit suicide and I know of one woman who did who belonged to another forum but she wrote a letter to the Coroner of her reason and it was due to being hypo and not recovering.

As far as I know this wasn't published and probably put down as 'while balance of mind was disturbed' but it is the 'every day' waking up hoping that a miracle has happened and that you wont feel so ill but it never happens and doctors issue you with all other prescriptions except the one you really need, i.e. T3 added to T4.

Many also lose their livelihoods, some may not have sympathetic families and doctors dismissing them as 'nuisances' as they are taking levo and bloods are 'normal'. Normal is a dreaded word, I think, if we have continuing disabling symptoms.

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I am not directly involved in this but the who thing has been badly managed! That's taking out the argument for clinical anyway. How many posts have we seen with clinical need but the medication withdrawn. No one seems to realise that you can't play with individuals lives like this. Ok easier for them to so no but just not good enough. Everyone should have been seen by an Endo to say where going next and if a trial going back to Levo didn't work then be re assessed as with any new patient being failed by levo. Sadly not enough making this decision is fully experienced with the subject and yet are being pushed into a decision they are not in all cases confident in giving. By the time they find out its strengths then no one will becprocingvitcaszits not cost effective for them to continue. As you say no one has thought about the logistics not to mention the damage.

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And more to the point, will they know what they are doing?

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It shows how much they know when they cannot name 12 disabling symptoms but are willing to prescribe for the symptom i.e. anti-depressants etc instead of checking FT4 and FT3.

They also insist that hypothyroidism isn't the cause due to the TSH being 'in range' or 'normal range'. It clearly shows how little knowledge they do have,so they shouldn't be consulting at all. Instead they should take a refresher course with hypothyroid patients marking their answers and overseeing the written word when they take tests. :)

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I have a private endo who supports me taking t3 which I purchase from abroad myself and I have an nhs endo who point blank told me he can not prescribe it and neither will my gp’s I was on ndt but had problems with that so last few months been taking levo and t3 the question is will my gp or the nhs endo now prescribe it for me so I don’t have to worry about sourcing it from abroad this is probably the case for many people who source their own ?

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Hi Lesleysomers I wonder if you would private message me with your sources from abroad of t3 & ndt. On t3 but only 10mcg & deffo not enough & really want to trial ndt. Been online but scared off as sites wanting bitcoin for payment or direct bank transfer. TIA

Evep

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EveP, you will always end up paying by bank transfer, Bitcoin, etc. You cannot buy medicines with credit or debit cards, as threre is a deal between the card companies and pharmaceutical companies :(

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I buy my Thyroid s with my Mastercard and have done so for two years now.

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Can you give me info about your T3 source? I have been using T3 from a GP in Australia but now need to source it for myself. Thanks. June

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I am fortunate to be able to source my own when on holiday. How long this will be I am not sure.

What you have to do is put up a new post, giving members a bit of your thyroid history and requesting a Private Message to be sent to you of where to source T3. Members will respond. Your post will be closed to prevent information being posted on the open forum but private messages can be sent to you.

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Ok-thanks

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Can you give me details of where to source T3

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I buy mine when on holiday in Greece but understand they are now requesting prescriptions in some areas. There was also great difficulty this summer but i think it was a worldwide problem.

My GP was also prescribing for me until the company ran out of T3 a few years ago.

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Hello Shaws

thanks for posting. You’ll note that this is NHS England. It doesn’t mention Northern Ireland, Scotland or Wales.

My Northern Irish GP refused to prescribe T3/ Liothyronine because it has been prescribed by a private Endo!

Thankfully there was a glimmer of hope in that the report mentioned some patients have an inability to convert T4 to T3.

The travesty is that many patients don’t realise this and T3 levels are not routinely being checked for by GP’s. That along with an unknown DIO2 genetic polymorphism and thyroid receptor cell resistance is what some of us have or are experiencing on a T4 monotheraphy.

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I agree. There have been lots of scare stories about T3 and it certainly doesn't come from patients whose health has been restored and they have far less visits to doctors and don't have to give up their jobs and are able to lead a normal healthy life.

There have been lots of misinformation and I think it can only come from Endocrinologists or the Associations who state that levo is the preferential choice. It's not a 'preferential' choice for those whose lives are completely disrupted by levothyroxine even if they don't have a genetic reason.

I am in complete agreement about T4 monotherapy not being the preferred choice for everyone and one of our Advisers and his team have proven this as well as other scientists worldwide and that an addition of T3 can help enormously. These patients don't even have the 'choice' or 'trial'. I only had complete relief on T3 alone.

There has to be thousands worldwide who don't have access to the internet and are doomed to a life of ill-health and may develop other more serious conditions too. The doctors heart drops when this patient appears in the surgery desperate for help/assistance but, in reality, are thought of as nuisances because their 'bloods are normal' so according to the test their complaints have to be due to 'other than' thyroid hormones.

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I don't think we have even heard of T3 here in Wales. It is called 'drugs off the internet'

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Ignorance is bliss for some people but it is not a quality we want from doctors or endocrinologists who do seem ignorant about what the purpose of thyroid hormones are in our bodies. Maybe they would actually realise what many go through if they, themselves, or family members had a dysfunctional thyroid gland and didn't get well on levo.

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Liothyronine or levothyroxine aren't 'drugs' but hormones which are required when our body isn't producing them. I have been prescribed both by the NHS.

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Just repeating what my GP said to me. I know they are replacement hormones :-)

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He shouldn't say drugs and it shows that he's unaware that they are life-giving hormones, without which our body cannot function and not just part of our body but the whole and brain and heart need the most.

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Your doctor's statement just shows the mentality of many doctors not recognising the importance of knowing how to make patients well again .

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Even being seen by an Endocrinologist I couldn’t get it prescribed.

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Some members have been so disappointed after seeing an Endo as hopes are built up. Members have had horrible experiences with 'supposed to be' caring people.

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Given that the cost of T3 has reportedly (in the'I 'newspaper )gone up from £4.45 to £258 is there nothing we cold do to campaign against this ?

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There was only one licenced T3, and it was the manufacturer of this that put the price up. There are other cheaper T3s but most doctors would not prescribe this on a 'named patient' basis as they'd have to take the blame if we had a reaction.

I believe there is another licenced one now available but no idea what the cost is for that one.

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I understand all that what I wondered was whether as this site has been so successful in galvanizing people to come together before, isn't there some way we could all come together to put pressure on the manufacturer /government etc to do something about the rise in cost which I believe is due to this particular millionaire taking over the licence.

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Forgot to say thank you for responding and so quick

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That's o.k. If you aren't a member of Thyroiduk.org.uk you can join and we get quarterly newsletters etc and Conference every 4 years and they are the ones 'behind the scenes' working hard and speaking publicly about issues. They also did the preparatory work for the Scottish Parliament etc. and It isn't too expensive for a yearly membership.

thyroiduk.org.uk/tuk/member...

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