T3 debate House of Lords: Hi All Just wondered... - Thyroid UK

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T3 debate House of Lords

Ziburu
Ziburu

Hi All

Just wondered about the latest guidelines for T3 prescribing. I’m on T3 after years on T4 with no reduction in symptoms.

My pharmacist says everyone else in my area has had there’s stopped and I’m the only patient getting NHS prescriptions.

Also, re the House of Lords debate, I listened to, or read this a few months ago and was most put out by one woman’s comments. Lady ? said she was perfectly fine on Levothyroxine and didn’t see the need at all for free prescriptions if you have thyroid disease.

It was just a passing comment on her part but showed zero understanding of, or empathy for, the thousands of patients struggling with a multitude of symptoms. Many of whom will also be on a reduced income. Seeing the inept way things get handled in NHS parliamentary debates, don’t be surprised if free prescription provision for thyroid patients is soon up for discussion.

#levothyroxine #T4 #T3

22 Replies
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SlowDragon
SlowDragonAdministrator

Here are the new guidelines

November 2018

Clearly states on pages 8 & 12 that TSH should be under 1.5 to be adequately treated on just Levothyroxine

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

Dossier presented to Lord O'Shaughnessy November 26th showing that many people have had NHS prescription withdrawn or refused T3.treatment

drive.google.com/file/d/1c2...

Professor Toft recent article saying, T3 may be necessary for many

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

All due to outrageous price increases

Media coverage

thyroidtrust.org/media-cove...

mjauk.org/wp-content/upload...

i don't know to whom you refer, but if someone is perfectly well taking Levothyroxine, or indeed any drug, then they are perfectly entitled to say so; indeed it is important that they say so because that is the experience of many. That some of us aren't (I was perfectly well with Levo for the first 30 yrs) doesn't invalidate, or in someway trump their experience. I think though, from memory of it being mentioned elsewhere (although I could be wrong), that what was said, was that "all" prescriptions being free, and not just thyroid meds once we are diagnosed hypothyroid, was not right. I have to say that I agree with that sentiment and always have. I've been hypothyroid for 40 yrs and worked all my life, and whilst there's very definitely an argument for making a lifetime drug free at the point of delivery, there's no logic to my mind, that I should have anything else free that is unconnected with my thyroid disorder especially when I was working and earning. But even if the lady concerned was referring to thyroid meds being free, then she is perfectly entitled to hold and express that opinion. However I think there are associated but different factors that also come into play: it is only in England that we pay for prescriptions, patients in Wales, Scotland and Northern Ireland do not, and that to me is a ridiculous inequality. On the other hand, we are favoured with exemption from prescription charges when there are others with just as debilitating or worse lifetime conditions who have to pay for every prescription they are given - my elder son has severe Crohns for instance, which of course will be with him for life, and is always on some drugs, but when his condition worsens I lose count of the number of meds he has to take, and pay for. He has no excemptions what so ever and yet it is his condition that puts him at risk of cancer, not mine; it's his condition that has had him sobbing in extreme pain on the toilet, not mine. So once again, another inequality, and I've considered myself very lucky not to have paid for a single prescription since diagnosis decades ago. And within our own situation, many, including myself, have had their T3 withdrawn (even though in my case, I've tested positive with a DIO2 polymorphism) whilst others continue to be prescribed it, or even some to be newly prescribed it. There are many real inequalities; but stifling free speech even where it might be unfavourable to those with a thyroid disorder, isn't the solution.

I have to say I agree with you. I've been diagnosed hypo for 2 years but only just filled in the request for free prescriptions because it doesn't feel right to me. The pharmacist and GP kept pushing me to do it though.

I think all lifetime medications should be free. And everyone who is sick and out of work or unable to work should get free medications until they are back at work. Everything else paid for. I've been buying my own thyroid meds for years, plus bucket loads of vitamins and private HRT. We owe it to ourselves to go easy on the NHS.

Does anyone know who this was? I feel a lot of emails coming her way if I can investigate how to get in touch with the selfish, self-absorbed, blinkered, ignorant f**kwit. She is supposed to representing us - how dare she speak out for the rest of us without researching the situation and using only her own limited anecdotal experience. I hope T4 stops working for her at some point, I really do. Then again, she probably is okay - you can sleep as much as you want in the House of Lords and still collect the attendance allowance and expenses.

MissGrace
MissGrace in reply to MissGrace

I hasten to add - in a political debate, made by people in positions of power, appointed (not even elected in this case) to represent us (so hardly about democracy and free speech) I would expect those pontificating to be informed, not contributing to decisions that affect many many people from limited personal anecdote. If it was a comment about free prescriptions that is a different issue - but she isn’t saying that the prescription for thyroid treatment should be free and nothing else if the comment quoted is correct.

MaisieGray
MaisieGray in reply to MissGrace

Wow! Would you really wish that a fellow patient become ill on their treatment? In fact the speaker concerned was Baroness Jolly, and she was speaking out in a Lord Hunt debate, very much PRO-appropriate and effective treatment for those with thyroid disorders. She had already said, amongst other things, that "It is therefore important that the patient receives the right drug. We have heard completely unacceptable tales of patients, as a result of decisions made by clinical commissioning groups, surfing the internet to see what they can get". She later pointed out, quite accurately, the associated costs to the NHS of the 'all prescriptions are free situation', "On the issue of the costs of medication, one of the non-medical side-effects of having a diagnosis of hypothyroidism was that any other drug I had became free. It is on a list of conditions which, if you have them, mean that any other medication you need becomes free. At that time I was in my early 30s and working. It was very nice to have free prescriptions; I tried to pay for them but they would not let me. However, it means that for the NHS, an awful lot of money is spent inappropriately. Can the Minister give an indication of whether the department has any indication of how much this costs the NHS? I am happy for the NHS to pay for my levothyroxine, but it should not have paid for all other medication I was in receipt of—although, ​now that I am old, it comes free anyway. How sustainable is this in the current climate, and when was the principle last reviewed?" It seems to me, all perfectly valid points.

hansard.parliament.uk/lords...

helvella
helvellaAdministrator in reply to MaisieGray

If England continues with prescription charges, it might be possible to do the following:

Apply charges up to the point at which the person would be paying more than the pre-payment certificate. Then automatically supply further items without charge.

One of the problems with the pre-payment certificate, which would limit costs to £104 per year, is that we might not realise it would have been worth getting one until after the event! My suggestion would put a rolling cost assessment in place so that catch disappears.

With levothyroxine we have two issues which cause issues with imposing charges. First, the product usually costs much less than the prescription charge. If it were available over-the-counter, we would probably pay less. So not exempting it would increase the cost to many. Second, the number of tablets required varies because of the arbitrary 25/50/100 tablets which means many of us require two, three or more tablets to reach our dose.

From a purely personal point of view, I think it would make life easier if levothyroxine tablets were to be classified as Pharmacy medicines that we can go and buy subject to oversight by a pharmacist. Avoid the need to get prescriptions ordered, picked up, dispensed. Just go to pharmacy and ask (and, of course, pay). So long as prices do not get inflated.

MissGrace
MissGrace in reply to MaisieGray

Then she didn’t say what is in the opening post, though had she said such a thing I couldn’t see it relationship to free prescriptions. Things will only change when those in positions of power and privilege understand the situation of others. I don’t use T3 and wouldn’t touch NDT. However, I understand that others on here need it to be well and will fight for them to have access whether I’m okay on T4 or not. Many people here find themselves against a brick wall when struggling to regain their health, that is not a tolerable situation in my view.

JGBH
JGBH in reply to MissGrace

Well said and thank you for being open-minded and caring.

kissemiss
kissemiss in reply to MaisieGray

Sorry to say but I think you are missing the point of the argument.

MaisieGray
MaisieGray in reply to kissemiss

I'm very happy to say that I know I am not.

JGBH
JGBH in reply to MissGrace

Hi, I totally agree with your point of view. I strongly resent those “we know better” idiots who do not really have problems and yet have the audacity to lecture to those of us who suffer so much through lack of much needed appropriate treatment! Like you I do hope that egotistical idiot finds that Levothyroxine doesn’t work anymore!! Do hope she won’t get any support for a while so that she will be able to engage both brain and empathy before preaching her pearls of wisdom. Sorry if this sounds vindictive, it is, but I have had more than enough of such useless types of people.

Its a shame she cant investigate the rediculous cost of T3 in this country (and other drugs including phenytoin - and why that drug was thrown out of the the recent CAT and referred back to CMA, thus delaying the liothyronine case; why they are so much cheaper in Europe; why the Govt is not using their powers to reduce the horrendous price hike of these drugs and why a cartel is allowed to operate in this country, keeping patients from getting the drugs they desperately need and deserve. Why the Indian family who made a fortune back in 2014 re generic drugs were not taken to account or even fined, now rolling in money, owning great mansions in the London area.? There must still be a back hander going on here?

I gather a new company has started producing T3 in UK but the price has hardly dropped at all - something very wrong here too?!

JaneCx

SlowDragon
SlowDragonAdministrator in reply to JaneChapple

Hopefully now CMA have been given permission to fight back on Pfizer case, some progress can be made on taking Advanz/Concordia/AMCo/waymade to court

gov.uk/cma-cases/investigat...

20 December: Today, we learnt that the Court of Appeal granted the CMA permission to appeal the Competition Appeal Tribunal’s judgment of 7 June 2018 which partially set aside the CMA’s decision that fined Pfizer and Flynn for charging excessive prices to the NHS for the sale of anti-epilepsy Phenytoin sodium capsules

Meanwhile NHS continues to be exploited

independentpharmacist.co.uk...

telegraph.co.uk/finance/new...

financialexpress.com/world-...

dmu.ac.uk/research/research...

The CMA case against those T3 manufacturers is dragging on, in fact appears to have come to a full stop. All gone quiet on that front? I'm certain this lull is giving those T3 manufacturers time to move all funds to a pacific island.

SlowDragon
SlowDragonAdministrator in reply to marigold22

After Pfizer won appeal against CMA £90million fine, then CMA forced to reevaluate other cases

There is a Magic Money Tree.

And there is more than enough money for the Nhs.

It's just that it's used on illegal wars in, and occupation of, other people's countries. They could easily stop those rogue wars and bring back the troops and use that Magic Money Tree on uplifting our lives and improving our well being and improving our housing and providing free education and free medical care - and they could chuck a free gym pass to every flipping person in Britain - and there'd still be money to spare! The problem is when those who are in governance like to prioritise the death and destruction of other people in other countries, rather than improve and uplift our lives and our health and our education and our housing in Britain.

Ziburu
Ziburu in reply to Londinium

Nice gym pass idea. Although the primary purpose of our local sports centre is to generate money for our district council. To that end they have devoted space to equipment that you pay memberships to use. If you can’t afford it tough. Everything now works on the profitability per square metre. So out have gone things like, the crèche and badminton. Saturday swimming also, has all but disappeared, replaced by very expensive inflatables sessions, perfect for the divorced dad and birthday party market.

One excellent thing we now have though are two community gardens. An opportunity to get fit, socialise and grow stuff that’s healthy to eat.

However, the driver for this initiative is a local community church. Relying on charity and religion, we really have gone full circle back to Victorian times.

I’d say most of the prescription meds I’ve been given since my Hashimoto’s diagnosis, 20+ years ago, apart from antibiotics or post surgery pain killers, are connected to it, in one way or another. I would also lump in with that the tens of thousands we paid on fertility treatment.

And certainly if you have Hashimoto’s and continue to suffer from uncontrolled inflammation caused by your raging immune system, you are liable to get things like, high blood pressure, migraine, anxiety, depression, brain fog, high cholesterol, IBS, acid reflux, atrial fibrillation, fibromyalgia, rheumatoid arthritis, macular degeneration, etc., etc...

So do I think, thyroid disease patients should be entitled to get free prescriptions for all their meds? Absolutely.

If you’re comfortably off by all means pay but remember, not everyone is as fortunate.

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