An interesting piece from the lancet

[Goldengirl01]

Mentions a 3 month trial might be appropriate.

Liothyronine cost and prescriptions in England

Peter N Taylor

Salman Razvi

Ilaria Muller

John Wass

Colin M Dayan

Krishna Chatterjee

et al.

Show all authors

Published:January, 2019DOI:doi.org/10.1016/S2213-8587(...

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Levothyroxine is commonly prescribed for hypothyroidism and its use is steadily increasing.1 A subgroup of patients are dissatisfied on levothyroxine monotherapy2 and in some clinical trial patients have shown a preference for a combination of levothyroxine and liothyronine. With clinical trials not showing clear-cut superiority, combination thyroid hormone therapy remains controversial.3 However, acknowledging the limitations (small size, short duration, inconsistent dosage) of previous studies, specialist society guidance recognises that a trial of liothyronine might be appropriate in selected patients4 and studies of genetic polymorphisms (eg, Thr92AlaD2) might indicate specific patients to target. In 2016, the 28-day National Health Service (NHS) cost of liothyronine in the UK increased dramatically from about £4·50 to £258·19, resulting in widespread patient concern and media coverage.5 By contrast, the cost of levothyroxine has broadly remained the same. Clinicians are under increasing pressure to justify prescriptions and, for many patients, treatment has been discontinued or requires private sourcing. A parliamentary enquiry is ongoing. As these changes in costs occurred uniquely in the NHS, these trends in liothyronine prescribing likely only apply in the UK.

We analysed NHS England open prescribing data6 from Aug 1, 2013, to July 1, 2018, sequentially examining the monthly number and cost of NHS liothyronine prescriptions for each clinical commissioning group (CCG; n=195). CCGs are responsible for commissioning health-care services in their local area. In August, 2013, the median number of monthly liothyronine prescriptions per CCG was 22 (IQR 12–38), falling to 17 (10–30) by July, 2018 (p<0·0001). The most substantial changes in prescribing occurred in early 2016, coincident with substantial rise in costs (figure). The total monthly cost of liothyronine prescriptions in August, 2013, was £758 975; this figure increased by almost ten times to £7 018 679 by July, 2018, despite 122 CCGs prescribing less liothyronine

[shaws]

The fact that T3 was stopped immediately and without warning, causing immense worry and strain to those prescribed just shows the contempt that we, mainly women, get from part of the medical profession.

It is a 'take it or leave it' attitude and we're disbelieved when we state how much more unwell we are on levothyroxine. Quite a number have lost their jobs due to the inability of their brain to cope if not sufficient T3 is in the blood, to enter the T3 receptor cells (brain/heart contain the most). Are most endocrinologists aware of this fact - obviously not. Relationships end as many family members cannot cope and they themselves wonder why the person is always moaning or exhausted - after all they are taking thyroid hormone replacements. Everything in those people's lives are affected. Maybe family fed up with the moans and groans we have but we do need to get things out of our system instead of bottling it all up, so the forum can assist enormously except we should NOT be searching the internet for information/help.

It's as if we want to have hypothyroidism and those people on levothyroxine and feeling very well upon it, wont be searching the internet in the hope of finding out some information in how to improve their symptoms/lives.

The attitude of many professionals is so harsh - No. 1 including the sudden withdrawal of T3 without notice and a devil-may-care attitude to the suffering of the patients who were well with the addition of T3 or T3 alone. T3 allowed them to have a normal life, didn't give them 'brain-fog' and did not lose their livelihood/jobs.

It is a tragedy, especially if some feel life cannot continue as it is without the thyroid hormones that restore their health and well-being. Then, of course, they'll be diagnosed with a mental health condition and prescribed medication for that but not the essential hormones their brain/heart require.

p.s. not forgetting those who have no internet connection at all. What a burden to carry on one's shoulders.

[Goldengirl01 in reply to shaws]

Brilliant answer.x

[Hidden in reply to shaws]

Editing to delete because I stated something clumsily and it has been taken in a way I did not intend. Sorry.

[greygoose in reply to Hidden]

Probably an awful lot, but not a lot one can do about it. But, we do have to believe that some people at least do well on levo only - some people on here, and they should know.

[Hidden in reply to greygoose]

Yes, I know some of those people too. But not all. Then again, not all are 100% on other treatments either.

[greygoose in reply to Hidden]

Certainly not! I tried NDT because of the way STTM bang on about it. But, it made me far sicker than levo.

[Hidden in reply to greygoose]

Glad you found something that works better for you. I didn't like straight T3 when I tried it. Think I'm going to take a break from this forum for a bit. Hope you continue to do well.

[greygoose in reply to Hidden]

Yes, taking a break is sometimes a good thing to do. We can get over-involved and need a breath of fresh air from time to time. Take care.

[bantam12 in reply to Hidden]

I never quite understand why those of us who do well on Levo are assumed to be delusional and are actually suffering a shed load of symptoms that absolutely must be thyroid yet we can't see it 🙄 🤦🏻‍♀️

[Hidden in reply to bantam12]

Edited.

I'm sorry if I've upset you.

[bantam12 in reply to Hidden]

Hmmm I think you did 🤔

I have "heart things" but it's nothing to do with thyroid and Levo, I also have multiple autoimmune syndrome but again it's nothing to do with Levo.

My husband didn't do well on Levo and needs T3 added so I'm well aware of both sides of the story.

[Hidden in reply to bantam12]

I really didn't, I am sorry I have offended. I am going to delete my other posts so it doesn't upset anyone else. Bye.

[bantam12 in reply to Hidden]

You haven't upset me I just find it bizarre how we are constantly told we are imagining we are ok, doesn't happen with other diseases and meds.

[MaisieGray in reply to Hidden]

Hidden I find that quite offensive. That those who consider themselves well on mono-Levo treatment are somehow delusional and/or stupid! I was very well for 30 years on Levo, far healthier in fact than most euthyroid people I knew who were constantly coming down with this or that, or attending the GP for whatever reason. I have a number of friends and acquaintances who are very definitely very well on Levo, and look good on it. I also have a friend, physically disabled by polio whose health nevertheless is great, and she lives a happier healthier and more active life than many able bodied. She would also give anyone who suggested otherwise, very short shrift.

[Hidden in reply to MaisieGray]

I am sorry. I think I have clumsily said something. I did not intend to offend.

[greygoose in reply to MaisieGray]

I don't think that Hidden meant to be offensive, nor was she calling anyone delusional or stupid. There are a lot of people who just don't know all the ramifications of hypothyroidism, and if their doctors don't suggest their symptoms are due to hypo - or, tell them unequivocally that they aren't due to hypo, as usually happens - then it's not surprising they think they're doing well on levo, and that they have other conditions causing symptoms. Actually, we see that quite a lot on here.

You know me, I'm one of the first to take offense at the slightest little thing. lol But, I really didn't find SewingMin's post offensive. I'm sure she didn't mean it that way.

[Hidden in reply to greygoose]

Thank you @greygoose, much appreciated. Yes, you have understood it as I intended it.

[MaisieGray]

Goldengirl01 The article is an amalgamation of various pieces of fairly old news tbh. The revised guidance for the prescribing of liothyronine is that produced by the RMOC in June this year. It lays out under what circumstances a patient might be considered by the Endo, for a trial T3:

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

[Goldengirl01 in reply to MaisieGray]

I know it relatively old but I was just pointing out the prices and how it’s changed dramatically because of unscrupulous billionaires that can afford whatever treatment they desire whereas we have to suffer....

[MaisieGray in reply to Goldengirl01]

The Concordia investigation remains ongoing ad infinitum, so my ire is directed at those responsible for not expediting matters and reaching a conclusion after the interim finding a long time ago. But I take a different view, pharmaceutical manufacturers are in the business mainly, and perfectly normally, to make a profit, just as any other business, and I don't expect them to be any the more or less altruistic than any other. I direct my anger at those British establishment bodies and individuals who could have done something when, or better still, before Concordia's price started to increase exponentially but who instead, actually acceded to their wish to put up the price because they were having to build a new manufacturing plant and because the manufacture of T3 is allegedly difficult and therefore more costly .... Instead of telling Concordia where to put their price increases, ie where the sun doesn't shine, they were told yes, no problem, go ahead. Further, no efforts had been made at that point, to permanently open up the number of sources of T3 available in the UK, and in fact when the sourcing and prescribing of French T3 was temporarily permitted under a blanket permission whilst the alleged manufacturing problems were resolved, that permission was then unbelievably revoked. Any number of things could have been done at any point by the various relevant authorities from the DoH down over the years that this farce has persisted, but none have. That, in my view, is where the problem lays.

[Goldengirl01 in reply to MaisieGray]

Well said, greed amongst other things has a lot to answer to.

[SlowDragon Administrator]

Loads more media coverage of liothyronine scandal here

thyroidtrust.org/media-cove...

[AmandaK in reply to SlowDragon]

The comments section is revealing of GPs' attitudes. Only one dared to challenge the modus operandi of relying on algorithyms and not listening to patients.

[MissGrace]

It is a scandal. And a scandal that has ruined people’s lives. Ultimately, we deserve to have the full range of treatments offered to us so as individuals we can find the one that suits us whether it be Levo, T4, T3, NDT or any combination of medications.

And we deserve to be able to go through the long and often difficult process of titrating our dosage until we reach our individual optimum - where we feel well - without the tyranny of TSH. We are hit by the double whammy - ‘reduce your Levo because you’re TSH is out of range - what madam, you want T3? No chance, you won’t even get that tested!’ It’s scandalous and frustrating to the point I’m incredulous that the situation continues. It’s so stupid! 🤸🏿‍♀️🥛