Going without Levothyroxine: Hi, How long can... - Thyroid UK

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Going without Levothyroxine

19 Replies

Hi,

How long can you safely go without Levothyroxine? Chemist keeps losing my prescription and doctors won't reissue for at least 2 weeks. A few years ago I went for around 6 months just taking tablet on alternative days.

I take 100mcg (for around 15 years, been on levo for 30 years). Don't know anything about T3/T4 levels (doctor never explained this or shared info) - haven't seen a doctor since first diagnosed, they just send out a yearly blood test form.

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19 Replies
jamesal0 profile image
jamesal0

5-7 day

Wired123 profile image
Wired123

Surely you need to change pharmacy, shocking in these days of e-prescriptions that anything can get lost

in reply toWired123

I have questioned if I can change to the chemist nearer where I work, but you have to use a chemist that falls into the surgery's catchment area. Which I find absolutely ridiculous as they are only 3 miles apart.

Wired123 profile image
Wired123 in reply to

This is nonsense. I’ve always had my e-prescriptions sent to a pharmacy near work.

Now I use a mail order service about 50 miles away. Prescription goes to them electronically, drugs delivered to my home next day by Royal Mail special delivery.

They are a physical pharmacy and do mail order as well, so it’s all above board. If you need their details DM me.

helvella profile image
helvellaAdministrator in reply to

A pharmacy which loses prescriptions, especially on a regular basis, should be reported.

Please consider doing so as others might suffer even worse than you.

Levothyroxine is bad enough. But what about insulin?

Indeed, not so long ago I was on aciclovir and it is expressly stated that should be started within 72 hours of symptoms startling with delays possibly making a big difference to the outcome. And many antibiotics are needed urgently to have a chance to work well.

Absolutely agree with Wired123 - it cannot be true - except, possibly, there will be no prescription pick-up from the surgery.

Sparklingsunshine profile image
Sparklingsunshine in reply to

Hi

That sounds like bunkum sorry, I live in the Midlands and I used to use an online pharmacy that was based in Leeds. They sent my meds in the post. It was hundreds of miles away.

DoeStewart profile image
DoeStewart in reply to

Hi Levo22, you can use any pharmacy you want, it can be at the other end of the country from your GP surgery - up to you. Once you pick your script up from the surgery it is yours to take where you want. If its sent electronically it can be sent anywhere? I dont know how a pharmacy can lose your script? If its being electronically issued by your surgery then maybe there is an error somewhere, user error possibly.?

Charlie-Farley profile image
Charlie-Farley in reply to

Hi Levo22

Losing your script???? Not allowed to use another pharmacy outside the ‘catchment’. It all sounds very dodgy. Where do those ‘lost’ scripts ended up? If the doc doesn’t reissue for two weeks does that mean it’s been used but you are not getting it. Is there a scam going on here??? Between someone at the surgery and local pharmacies????? All too odd for words.

SlowDragon profile image
SlowDragonAdministrator

It will take 4-6 months for your body to recover from a week of missed levothyroxine

Suggest you change pharmacies

Get FULL thyroid and vitamin testing done 2-3 months after being on constant unchanging dose and brand of levothyroxine

What vitamin supplements are you currently taking

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Do you have autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Every time you miss doses of levothyroxine vitamin levels will drop and can take months to recover

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning, not in a heatwave

in reply toSlowDragon

I take an A-Z vitamins with live bacteria.

All doctors have ever said is u/a thyroid, take Levo. I will look into having a private test done.

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to

Multivitamins are never recommended on here

Most contain iodine not recommended for anyone on levothyroxine

And too little of vitamins we do need

If contains biotin (highly likely) important to stop all supplements that contain biotin a week before all blood tests as biotin can falsely affect test results

Any iron, magnesium, vitamin D must be minimum 4 hours away from levothyroxine

Come back with new post once you get results

Sususulio profile image
Sususulio

I’m fairly sure that somewhere in the nice guidelines there is is information that allows a 3 month prescription, I’m also fairly sure it’s your preference where the prescription is dispensed from. I used to have various issues but on a stable dose for some time I now get 3 months prescription at a pharmacy of my choice who are much more accommodating than the one attached to GP practice

Sparklingsunshine profile image
Sparklingsunshine in reply toSususulio

Hi

I'm on a stable dose but have never been offered the option of 3 monthly Levo. Mine is issued every 28 days, however I have changed pharmacies at least 3 times due to various issues, and am very happy with my independent one.

Jaydee1507 profile image
Jaydee1507Administrator in reply toSparklingsunshine

Years ago I got 3 month prescriptions but not in the recent past. Maybe you could ask your GP surgery for a 3 month supply?

carnation profile image
carnation

Just to add to the comments I live on Hertfordshire and had my prescription sent to Cumbria when staying with my daughter. Catchment area comment is rubbish!

TSH110 profile image
TSH110

I can choose where my prescriptions are dispensed and often to a chemist near where I work which is over 16 miles from my surgery and in a different county. They sound utterly hopeless and dangerous too boot. Too incompetent to send the prescription anywhere from the sounds of it.

blondpalomino profile image
blondpalomino

Hi Levo22,Is it possible for you to collect the prescription from the Doctors surgery?

I order mine online to be collected, then I go to the surgery and collect it.

Then you can take the prescription to any Chemist.

I need to take specific brands of Levo and T3, so if my usual chemist doesn't have them I can take the prescription to another chemist, maybe 15 miles away.

I don't understand why you have to use a certain chemist, I'm sure that's not right.

Thanks everyone, and I agree with all comments.

I recently moved, hence the new doctors and chemist. On my first reorder I asked for 3 months, which they said no surgery would do - I'd been having 3 monthly scripts from my previous doctors for over 10 years.

I work all week and the surgery doesn't open Saturday (fair enough), but neither does the chemist which I find odd.

I'm going to take an afternoon off to go in and talk to someone there again.

helvella profile image
helvellaAdministrator in reply to

I get a three month prescription for levothyroxine!

I've previously posted what is pasted below:

For many years now, there has (in the UK) been a near-universal imposition of 28-day prescribing.

There is, quite simply, no rational basis for this policy in relation to long term medicines on repeat.

There is incoherency where we are told that we can only have a 28-day supply of a medicine even if it has been prescribed to be taken as needed.

There are the potentially severe consequences of running out of many medicines. For example, steroids, insulin, thyroid hormone.

Short prescribing, with the intention that we only apply for a repeat in the last few days, puts people at risk from supply issues, from other difficulties in getting their prescription issued (even as basic as distribution problems or just feeling ill).

For those who do not live near the GP surgery or pharmacy, there can be transport and time costs, sometimes considerable. This multiplies if the pharmacies do not have the product on their shelves, ready to dispense.

The major beneficiaries of 28-day prescribing of medicines which are prescribed long term seem to be to pharmacies. The specific claim that pharmacies are pushing for 7-day prescribing of MCA (multi-Compartment Aids) to recover costs rather supports that view.

We need pharmacies, pharmacies have to be viable, but effectively making work for them so they can increase their income seems entirely wrong-headed.

This imposes extra work on GPs and other prescribers. While this is always an issue, it is of particular relevance when there is a health emergency of any sort.

That if we are unlucky enough for the next repeat to fall at Christmas/New Year we clash with an already busy time where we are requested not to contact our GPs, if possible.

Those who impose and enforce 28-day policies are ignoring advice and research which questions its existence.

This includes the MHRA report on levothyroxine, published in 2013, where the CHM advised prescribing on a three-month basis. And more recent articles published by the British Journal of General Practice and the paper that used as a reference, the BMA, Pulse, and others.

I have included extracts from each below.

Prescription intervals

Doctors should provide prescriptions for intervals that they feel are clinically appropriate. This should take into account:

• possible reactions

• the stability of the treatment

• patient compliance

• necessary monitoring.

Sometimes a doctor may give six or even twelve months supply on one prescription as this is cost-effective and convenient for patients.

We have also received requests for GPs to consider shorter duration prescribing (28-day prescriptions).

Prescribing intervals can place significant workload on doctors and surgery staff, and should be in line with patients’ medical needs. Pharmacy requests to issue a seven-day prescription should be discouraged.

The request for seven-day repeat prescriptions to defray the pharmacist’s costs for the filling of MCAs has become an increasing pressure for GPs. Our advice is to resist such demands unless there is a clinical reason for restricting supply to seven days.

• Consistency of size, shape and colour of the medication could be more effective than using MCAs (can be confusing for patients).

• There are some storage problems involved in using MCAs, such as possible deterioration of drugs after being taken out of the packet.

• There are alternative ways to support patients taking medication, such as medicine advice charts, which allow the drugs to be retained in their packaging with advice sheets

The GPC supports the PSNC in that both pharmacists and dispensing doctors issuing MCAs should be properly reimbursed for the services they provide to patients.

bma.org.uk/advice-and-suppo...

28-day prescription lengths for people with long-term conditions should be reconsidered, say health research team

March 13, 2018

The widely adopted practice of issuing 28-day rather than longer duration prescriptions for people with long-term conditions lacks a robust evidence base and should be reconsidered, according to new studies published in Applied Health Economics and Health Policy and the British Journal of General Practice today. The research shows that considerable savings could be made by the NHS switching to longer prescriptions.

Over a billion NHS prescription items are issued each year by pharmacists in the community, at a cost of over £9 billion. Many of these medications are used for the management of long-term health conditions, such as diabetes or heart disease. Prescriptions for these medications are issued through the ‘repeat prescribing’ system. This allows patients to request a further supply of medicines without needing to make another appointment with their doctor. Local guidance by clinical commissioning groups in many parts of the country encourages GPs to issue shorter supplies of these repeat medications, partly to reduce wastage. Prescriptions are typically 28 days in length, but this policy has been questioned.

The study, led by RAND Europe in Cambridge and funded by the National Institute for Health Research, examined previously published studies that looked at this issue, dating back as far as 1993. The researchers found nine studies that suggested that longer duration prescriptions are associated with patients being more likely to take their medications (better so-called adherence). They also found six studies that suggested that shorter prescriptions might be associated with less wastage, although these studies were considered to be very low quality.

Longer prescription lengths do seem to be associated with patients taking their medicines more regularly.” – Dr Ed Wilson, Senior Research Associate in Health Economics

In related work already published in BMJ Open, the researchers undertook an analysis of 11 years of UK GP prescribing data. This found that any savings due to reduced waste resulting from issuing shorter prescriptions were more than offset by greater costs due to the additional work required by GPs and pharmacists. Longer prescriptions could save GPs’ time, which could in turn be used to increase time spent with patients. Savings to the NHS from lengthening all prescriptions for statin drugs alone (one of the most commonly prescribed medications) were estimated at £62 million per year.

And in the economic modelling study, published today in Applied Health Economics and Health Policy, the researchers have shown that if longer prescriptions result in better medication adherence, this could lead to improved health outcomes and, as a result, further reduced costs for the health service.

Dr Ed Wilson, health economist at the University of Cambridge’s Primary Care Unit and co-author, said “Our results show that in many cases, longer prescription lengths could both reduce administration costs and improve health outcomes. This is because longer prescription lengths do seem to be associated with patients taking their medicines more regularly. However, the evidence base is not perfect so any national change in policy for repeat prescriptions should be phased and needs evaluating fully to make sure we do see the benefits we expect.”

Dr Rupert Payne, from the University of Bristol’s Centre for Academic Primary Care and one of the study’s authors said: “This has been a contentious issue for many years. Our research shows that the current recommendations to issue shorter prescriptions have been based on a lack of sound scientific evidence. There is the potential for longer prescriptions to lead to important benefits, by improving patients’ adherence and thus the effectiveness of the drugs, lessening workload for health care professionals, and reducing inconvenience and costs to patients.”

However, Dr Payne also cautions that lengthening prescriptions could have undesirable consequences for pharmacists. “Community pharmacies receive a fee for every prescription they dispense. So simply switching every repeat prescription item from, for example, one month to three months, could result in a large reduction in pharmacy income. Therefore, although the NHS may save money, it could lead to a loss of pharmacy services. Changes to policy around the length of repeat prescriptions should also consider how pharmacies are reimbursed.”

Dr Sarah King, Research Fellow at RAND Europe and lead author of the study, said: “Currently, the UK Department of Health and Social Care advises that the frequency of repeat prescriptions should balance patient convenience with clinical appropriateness, cost-effectiveness and patient safety but does not specify a recommended period. Given our study results, CCGs and local NHS may wish to reconsider current recommendations for 28-day prescription lengths for patients with stable chronic conditions.”

References

‘Long-term costs and health consequences of issuing shorter duration prescriptions for patients with chronic health conditions in the English NHS’ by Adam Martin, Rupert A. Payne and Edward C.F. Wilson. Applied Health Economics and Health Policy. 13 March 2018

‘The impact of issuing longer versus shorter duration prescriptions – a systematic review’ by Sarah King, Celine Miani, Josephine Exley, Jody Larkin, Anne Kirtley, and Rupert A. Payne. British Journal of General Practice. 13 March 2018

phpc.cam.ac.uk/pcu/28-day-p...

Why it’s time to re-think guidance on 28-day prescriptions

13 March 2018

Health researcher Josephine Exley says there is mounting evidence that cutting ‘waste’ associated with long-term scripts may be a false economy

In England, the NHS spends over £9 billion each year on prescription medicines dispensed through hospitals and GPs, which is equivalent to 7% of its total budget.

Long-term treatments with medication often play a fundamental role in the clinical management of patients with stable long-term non-communicable conditions, such as diabetes, asthma and hypertension. In many cases, patients are provided with so-called ‘repeat’ prescriptions that are usually issued without the need for further consultations with the GP.

Guidance issued by the Department of Health recommends prescription lengths balance patient needs and good medical practice, while also considering NHS resources. To try to control the costs of unused or partially used medications – estimated to cost around £400m a year – local commissioning groups have encouraged GPs to shorten prescription length, typically to 28 days.

However, our study commissioned by the National Institute for Health Research shows that increasing the length of prescriptions for people with long-term conditions could result in substantial savings for the NHS.

Despite the link between longer prescription lengths and increased waste, the study found that switching to longer prescriptions could result in cost savings, as the biggest impact on cost was the time administrating repeat prescriptions. Identifying patients with particular long-term conditions and characteristics that could benefit from longer prescriptions would be a good start toward realising these savings.

A good example is antidepressant prescriptions. Ninety five per cent of these prescriptions are less than 60 days, but a previous study showed longer-term prescriptions could potentially save as much as £305 million. This means that providing longer prescriptions for just one long-term medical condition would negate a large proportion of the costs of ‘wastage’.

The latest study also suggests that longer prescriptions could be associated with improved medication adherence. Therefore, there could be clinical benefits to increasing the length of repeat prescriptions for patients with chronic conditions. This could result in further long-term cost savings due to reductions in the use of health services by patients.

Another factor that could impact the cost savings are the personal costs incurred by patients through the shorter prescription lengths. The current evidence does not include the time and travel costs of patients that have to travel to hospitals, pharmacies or GPs to pick up their prescriptions. If these personal costs were considered then there is likely to be further savings associated with issuing longer prescription lengths.

Furthermore, 28-day prescription lengths have been described as disempowering and a hassle that can cause anxiety for patients when they are running low, particularly when their ability to travel is constrained.

We still need to do more research on these potential associations, but the evidence available suggests that the policy on 28-day prescriptions does at least require a re-think. The argument that it saves on ‘waste’ has been shown to be questionable, with the costs associated with dispensing fees and prescriber time outweighing wastage costs.

The current evidence base does not support policies and guidance promoting shorter prescription lengths over longer prescription lengths. If anything, the significant cost savings to the NHS warrants a look at whether more patients with long-term conditions should be issued longer prescriptions.

Josephine Exley is a Centre for Evaluation fellow at the London School of Hygiene & Tropical Medicine and a former senior analyst at RAND Europe

pulsetoday.co.uk/clinical/c...

Long-Term Costs and Health Consequences of Issuing Shorter Duration Prescriptions for Patients with Chronic Health Conditions in the English NHS

• Adam Martin,

• Rupert Payne &

• Edward CF Wilson

Applied Health Economics and Health Policy volume 16, pages317–330(2018)Cite this article

Abstract

Background

The National Health Service (NHS) in England spends over £9 billion on prescription medicines dispensed in primary care, of which over two-thirds is accounted for by repeat prescriptions. Recently, GPs in England have been urged to limit the duration of repeat prescriptions, where clinically appropriate, to 28 days to reduce wastage and hence contain costs. However, shorter prescriptions will increase transaction costs and thus may not be cost saving. Furthermore, there is evidence to suggest that shorter prescriptions are associated with lower adherence, which would be expected to lead to lower clinical benefit. The objective of this study is to estimate the cost-effectiveness of 3-month versus 28-day repeat prescriptions from the perspective of the NHS.

Methods

We adapted three previously developed UK policy-relevant models, incorporating transaction (dispensing fees, prescriber time) and drug wastage costs associated with 3-month and 28-day prescriptions in three case studies: antihypertensive medications for prevention of cardiovascular events; drugs to improve glycaemic control in patients with type 2 diabetes; and treatments for depression.

Results

In all cases, 3-month prescriptions were associated with lower costs and higher QALYs than 28-day prescriptions. This is driven by assumptions that higher adherence leads to improved disease control, lower costs and improved QALYs.

Conclusion

Longer repeat prescriptions may be cost-effective compared with shorter ones. However, the quality of the evidence base on which this modelling is based is poor. Any policy rollout should be within the context of a trial such as a stepped-wedge cluster design.

link.springer.com/article/1...

Impact of issuing longer- versus shorter-duration prescriptions: a systematic review

Sarah King, Céline Miani, Josephine Exley, Jody Larkin, Anne Kirtley and Rupert A Payne

British Journal of General Practice 2018; 68 (669): e286-e292. DOI: doi.org/10.3399/bjgp18X695501

Abstract

Background Long-term conditions place a substantial burden on primary care services, with drug therapy being a core aspect of clinical management. However, the ideal frequency for issuing repeat prescriptions for these medications is unknown.

Aim To examine the impact of longer-duration (2–4 months) versus shorter-duration (28-day) prescriptions.

Design and setting Systematic review of primary care studies.

Method Scientific and grey literature databases were searched from inception until 21 October 2015. Eligible studies were randomised controlled trials and observational studies that examined longer prescriptions (2–4 months) compared with shorter prescriptions (28 days) in patients with stable, chronic conditions being treated in primary care. Outcomes of interest were: health outcomes, adverse events, medication adherence, medication wastage, professional administration time, pharmacists’ time and/or costs, patient experience, and patient out-of-pocket costs.

Results From a search total of 24 876 records across all databases, 13 studies were eligible for review. Evidence of moderate quality from nine studies suggested that longer prescriptions are associated with increased medication adherence. Evidence from six studies suggested that longer prescriptions may increase medication waste, but results were not always statistically significant and were of very low quality. No eligible studies were identified that measured any of the other outcomes of interest, including health outcomes and adverse events.

Conclusion There is insufficient evidence relating to the overall impact of differing prescription lengths on clinical and health service outcomes, although studies do suggest medication adherence may improve with longer prescriptions. UK recommendations to provide shorter prescriptions are not substantiated by the current evidence base.

bjgp.org/content/68/669/e286

The MHRA report on levothyroxine recommends three-month prescribing. When I asked for that (as a new patient at a new surgery) the doctor very much implied that the pharmacists wouldn't like it - she gave me two months.

Levothyroxine Tablet Products: A Review of Clinical & Quality

Considerations

07 January 2013

9. Levothyroxine should be prescribed and dispensed in quantities covering three months supply, where appropriate, in order to address issues of continuity of supply and also to improve convenience to patients.

gov.uk/government/uploads/s...

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