I'm very distressed - please help!: I went to get... - Thyroid UK

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I'm very distressed - please help!

Suzanneharb profile image
27 Replies

I went to get my Accord thyroxine today which I have been on for 10 years. They didn't have it at my pharmacy and will never get it in again (hinted about cost!). What on earth do I do?? I feel so alone with this condition and now I'm terrified as I only have 2 weeks of thyroxine left. I don't know where to go or who to turn to. Do I phone 111 for advice?? Or do I just accept a lifelong rollercoaster of cheapy generic thyroxine and having to adjust my dose with every brand every two months??

I'm so terrified.

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Suzanneharb
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27 Replies
SeasideSusie profile image
SeasideSusieRemembering

Suzanneharb

What alternative brand did they offer you?

Cost wont come into it, all thyroxine brands in 50mcg and 100mcg (the most popular dose size tablets) are the same cost to the NHS

50mcg = £1.26 for 28 tablets

100mcg = £1.26 for 28 tablets

Accord, Almus and Northstar 50 and 100mcg tablets are all made by Accord.

British National Formulary prices here: bnf.nice.org.uk/medicinal-f...

What do you call "cheapy generic thyroxine"? They're basically all generic in the UK.

If you go to Boots they should dispense Almus, it's Accord rebranded for them.

If you go to Lloyds Pharmacy they should dispense Northstar, it's Accord rebranded for them.

Just be aware that Northstar 25mcg only is made by Teva.

Suzanneharb profile image
Suzanneharb in reply to SeasideSusie

Thanks so much!I just don't like brand switching and neither does my body. I want to stay with the same brand. I'll shop around.xx

SeasideSusie profile image
SeasideSusieRemembering in reply to Suzanneharb

Well, you now know that Accord, Almus and Northstar in 50 and 100mcg doses are all the same tablets and where to get the different brands, so you should be able to get sorted.

What brand did your pharmacy offer you instead of Accord?

Suzanneharb profile image
Suzanneharb in reply to SeasideSusie

It was one I'd never heard of (and can't remember as I was crying by this point). It wasn't one you listed as I would have recognise those. Thanks for the quick and reassuring reply.xx

SlowDragon profile image
SlowDragonAdministrator

Take your prescription elsewhere. You may need try several different pharmacies

Small independent pharmacies are often more helpful

Suzanneharb profile image
Suzanneharb in reply to SlowDragon

It was a small one. They told me to go somewhere bigger, like boots

RedApple profile image
RedAppleAdministrator

Suzanneharb, 'do I just accept a lifelong rollercoaster of cheapy generic thyroxine and having to adjust my dose with every brand every two months??'

Absolutely not! In the UK, all levo tablets are 'generic' and as SeasideSusie has said, cost doesn't come into it for NHS prescribed levothyroxine tablets. You also have every right not to put up with regular brand changes. It took many, many years, but recognition of the detrimental effect of levo brand changes is now documented.

Calling out to helvella as he might be able to add a link to a document about levo brand changes.

The problem with many pharmacies is that they don't keep up to date with manufacturer name changes. Pharmacies will frequently advise a patient that the 'brand' they are requesting is no longer made. In reality, the situation is often simply that the same tablets now come in a box with a new name on them because the pharma company has changed their name. Pharma companies change names frequently for all sorts of business related reasons which makes it very confusing for pharmacies and patients :(

Hopefully you will soon find a pharmacy that will dispense the brand you want :)

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Thanks, RedApple.

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and many in other countries.

As Accord only changed the branding of their levothyroxine from Actavis to Accord early last year, some pharmacies might still not realise what has changed!

helvella - Thyroid Hormone Medicines.pdf

This document has information about the available thyroid hormones in the UK and, in less detail, around the world.

dropbox.com/s/shcwdwpedzr93...

In the document you can identify that Almus and Northstar levothyroxine are own label supplier versions of Accord. That is, the card outer has Almus or Northstar on it but the blister pack inside is identical in every way to the Accord product.

(Northstar 25 microgram tablets are actually Teva product as Accord do not make such a tablet.)

Almus is the usual product dispensed in Boots as the branding is actually owned by Walgreen Boots Alliance.

Northstar is the usual product dispensed in Lloyds as the branding is owned by McKesson - who own Lloyds.

Both Almus and Northstar could be available in some other pharmacies as well.

You can tell the maker by looking on the lower long edge of the card outer. There are some examples in this document (though it is a bit out of date and might say Actavis where it would now have Accord).

helvella - Thyroid Hormone Packaging

Some images of the packaging of several thyroid hormone medicines from various countries including the UK.

dropbox.com/s/7tte490umnz6s...

I suggest you contact local pharmacies - and ask what they can do for you.

helvella - Finding Local Pharmacies

The NHS organisations in each of the four nations of the United Kingdom have ways of finding all local pharmacies. This is a list of the web pages to visit in order to do so and includes screenshots.

dropbox.com/s/kcr7xfhht4ces...

Failing that, there are online options.

RedApple profile image
RedAppleAdministrator in reply to helvella

I seem to recall there was (maybe MHRA) a paper of some sort that specifically recognises the detrimental effects of levo brand changes? I think it may also have mentioned the need for re-testing every time the patient gets a different brand?

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Yes! That was just the other day. When I posted this:

Levothyroxine: new prescribing advice for patients who experience symptoms on switching between different levothyroxine products

healthunlocked.com/thyroidu...

Suggest following the link and having a careful read.

RedApple profile image
RedAppleAdministrator in reply to helvella

Thanks, but still not the document I'm thinking of, which was specifically about tablet brand changes and the need for re-testing. It was probably actually a few years ago now.

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Some time ago I posted a bit of a ramble about the narrow therapeutic range of levothyroxine...

Levothyroxine and prescribing by brand name

This Specialist Pharmacy Service NHS document clearly states that narrow therapeutic range medicines should be prescribed by brand name:

Which medicines should be considered for brand-name prescribing in primary care?

Medicines should be prescribed by brand name in the following situations:

1. Where there is a difference in bioavailability between brands of the same medicine, particularly if the medicine has a narrow therapeutic index.

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

The internationally respected Drug Bank website is quite clear they consider levothyroxine a narrow therapeutic range medicine.

Name

Narrow Therapeutic Index Drugs

Accession Number

DBCAT003972

Description

Narrow therapeutic index (NTI) drugs are defined as those drugs where small differences in dose or blood concentration may lead to dose and blood concentration dependent, serious therapeutic failures or adverse drug reactions. Serious events are those which are persistent, irreversible, slowly reversible, or life-threatening, possibly resulting in hospitalization, disability, or even death.

Drugs

Drug

Levothyroxine

Drug Description

A synthetic T4 hormone used to treat hypothyroidism that can be used along with surgery and radioiodine therapy to manage thyrotropin-dependent well-differentiated thyroid cancer.

go.drugbank.com/categories/...

The 2013 MHRA report Levothyroxine Drug Products: A Review of Clinical & Quality Considerations is rather less certain. However, as I read it, that is for the technicality that a 2-fold difference in dose is tolerable.

But the argument they put up is based on a single dose. In healthy volunteers. NOT patients who are ill taking a dose every day. This seems a naïve and rather pedantic argument. I suggest it is an argument for reviewing the definition of medicines of narrow therapeutic range. It does not demonstrate ­that levothyroxine is not such a medicine.

3.3Is levothyroxine a Narrow Therapeutic Index drug?

Levothyroxine has been referred to as a drug with a narrow therapeutic index (NTI) in several published articles although this is debatable.

The therapeutic index (also known as therapeutic ratio), is a comparison of the amount of a therapeutic agent that causes the therapeutic effect with the amount that causes adverse reactions. Drugs with narrow therapeutic index are drugs with small differences between therapeutic and toxic doses. There is no agreed European definition but the U.S. Food and Drug Administration (FDA) provides the following definition for a NTI drug:

a.  There is less than a 2-fold difference between the minimum toxic and minimum effective concentrations in the blood,

and

b.  Safe and effective use of the drug products requires careful titration and patient monitoring.

Acute toxicity and a possible need for therapeutic dose monitoring are usually key characteristics of NTI drugs in practice. However a weekly dose of thyroxine (usually a multiple of the patient’s daily dose) has been administered in clinical practice under direct observation, when there are concerns over possible compliance issues; this dosage regimen appears to be well tolerated.6

The FDA guidance on bioequivalence studies in levothyroxine advises that a single dose of 600 mcg is administered to healthy volunteers and this dose also appears to be generally well tolerated.

Therefore, acute toxicity with well over double the daily requirement of levothyroxine does not seem to pose safety risks, at least over the short term. In this sense, levothyroxine does not fall into the NTI category.

It has been shown that small changes in serum levothyroxine and liothyronine concentrations, within the normal range, alter serum TSH, indicating a sensitive negative feedback relationship between serum free levothyroxine and TSH.7 It is possible that in some patients once the optimal dose of levothyroxine has been achieved, they could suffer loss of control of their thyroid disease as a result of any subsequent variability in the amount of levothyroxine administered.

Therefore although levothyroxine does not meet the criteria for being a narrow therapeutic index drug, there are strong indications that small changes in the delivered dose of levothyroxine, should they persist over long term treatment, could have significant clinical consequences.

gov.uk/government/publicati...

Above I have argued that levothyroxine is a medicine of narrow therapeutic index. How much more does this argument apply to liothyronine?

healthunlocked.com/thyroidu...

The USA's FDA published this paper in 2014 assessing levothyroxine as a medicine of narrow therapeutic index:

accessdata.fda.gov/drugsatf...

The European Medicines Agency classifies levothyroxine as a critical dose drug:

ema.europa.eu/en/documents/...

Suzanneharb profile image
Suzanneharb in reply to helvella

Thank you SO much for this. I really, really appreciate your help.🙂

RedApple profile image
RedAppleAdministrator

This is not UK specific, but at the time the UK was part of the EU :)

--------------

European Thyroid Association (ETA) and Thyroid Federation International (TFI) Joint Position Statement on the Interchangeability of Levothyroxine Products in EU Countries

karger.com/Article/Fulltext...

Conclusions

Several European countries have seen major health issues after a switch from one levothyroxine brand to another, as well as following the introduction of several levothyroxine formulation changes.

Although it is not possible to ascertain what proportion of these health issues are biologically related to the formulation change, the issues include increased prevalence of side effects as well as increased prevalence of biochemical signs of inadequate dosing, and result in increased health-care consumption and health-care expenses.

Testing bioequivalence does not guarantee continued euthyroidism after a formulation change of levothyroxine.

In at least 3 European countries, formulation changes have been introduced by manufacturers without adequate communication with health-care professionals and patient organizations.

Recommendations

1. Patients should be maintained on the same formulation/brand name of levothyroxine. If a change is necessary, a blood test after 6 weeks is recommended to determine, if any adjustment to dosage is required.

2. Manufacturers should carefully prepare the introduction of a formulation change together with representatives of relevant stakeholders (health-care professionals, national Endocrine Society, Medicine Evaluation Board, Pharmacovigilance Centre, Pharmacists Association, national or – if not applicable – international patient organizations) to prevent insufficient communication and coordination.

3. The preparation of a formulation change should include a monitoring plan to become active immediately after introduction.

4. Authorities should define the required levothyroxine potency specifications in an unambiguous way.

5. The method for determining the bioequivalence of levothyroxine preparations should be reevaluated.

helvella

RedApple profile image
RedAppleAdministrator in reply to RedApple

And

Published: 04 September 2019

Levothyroxine Formulations: Pharmacological and Clinical Implications of Generic Substitution

Salvatore Benvenga & Allan Carlé

link.springer.com/content/p...

Conclusions

Physicians should alert patients that their LT4 prescription may be switched at the pharmacy, encourage patients to ask to remain on the same preparation at every refill, and make sure that patients understand that they need to have their TSH retested every time their LT4 product is switched [13, 19]. In some countries, such as the USA and Denmark, physicians can state on the prescription that switching is not allowed [2].

helvella

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

That wasn't in my repository - neither computer nor brain!

No surprise about the latter. :-)

RedApple profile image
RedAppleAdministrator in reply to helvella

Did you see the one above also?

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Yes - I mean "those weren't" rather than literally "that wasn't". :-)

RedApple profile image
RedAppleAdministrator in reply to helvella

:D

Wired123 profile image
Wired123

My pharmacist has advised that the GP can specify brand.

This worked against me recently when another medicine I take was not dispensed as the GP had specified brand and Boots could not sub with what they had in stock. Had to wait a week until they had stock.

Suzanneharb profile image
Suzanneharb in reply to Wired123

They said I should do this too, but my GP surgery is only open to emergencies (since March last year) so I can't ask this of them until.... er, who knows when!

Wired123 profile image
Wired123 in reply to Suzanneharb

You can write a letter and post it and a lot of surgeries allow you to contact them via electronic means. Failing that just call and leave a message for the doctor, they still are working and can do administration.

ElsaElsa55 profile image
ElsaElsa55

Hi Suzanneharb, it may have been Aristo that the pharmacy tried to give you. I went for my usual Accord but was given Aristo instead. I wasn't best pleased at the time but I am so glad I have been given this brand as I can honestly say I am feeling much better. No aches or pains and have lots of energy. I hadn't been very happy with Accord when it changed from Activis as I definitely felt something had changed. I am going to try and stay on this brand if I can.

shaws profile image
shawsAdministrator in reply to ElsaElsa55

Tell your pharmacist of your preference and he/she will probably do their best to source the one you want.

Suzanneharb profile image
Suzanneharb in reply to shaws

They have had my preference for 10 years. The last 6 months there's been constant locum pharmacists and that's what has caused the problems, sadly

shaws profile image
shawsAdministrator in reply to Suzanneharb

That's a shame. I would ask them to put a note 'wherever they prepare prescriptions' of your name and choice.

I always get the same medication that doesn't cause me problems and when I collect I double-check.

The problem now is that GPs usually 'send' prescription straight through to the pharmacist who give us whatever they have in stock - not thinking about preferences.

I would ask GP if he could put the pharma company's name on your prescriptions . They may be reluctant as it might mean if that 'tablet wasn't the one you want' they may not have another in stock.

Inform surgery and ask if they could put the 'manufacturers name' on the prescription so that you will be given your preference (hopefully).

Suzanneharb profile image
Suzanneharb in reply to ElsaElsa55

Thanks for this feedback. I'll bear it in mind

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