Desperate for help: yet again I am having issues... - Thyroid UK

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Desperate for help

Jefner profile image
41 Replies

yet again I am having issues getting my Morningside T3 and I run out today and after last time of going without for 3 days I was so ill for over 2 weeks

One pharmacy informed me they have Alliance and Advance? Can anyone tell me if either are both FREE of Mannitol and Acacia so I can try one of them in the meantime.?

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Jefner profile image
Jefner
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41 Replies
SlowDragon profile image
SlowDragonAdministrator

Morningside 20mcg seems unavailable in many parts of U.K.

Morningside - 5mcg, 10mcg and 20mcg tablets - blister packed

PIL leaflet

Morningside actually contains acacia and lactose

mhraproductsprod.blob.core....

Teva 20mcg - loose in a pot

PIL leaflet

No lactose, acacia or mannitol

mhraproductsprod.blob.core....

Advanz (Mercury Pharma) 20mcg - loose in a pot

Contains Acacia and lactose

medicines.org.uk/emc/files/...

Jefner profile image
Jefner in reply toSlowDragon

I actually phoned Morningside and they said there would be supply issues until mid April. I have, after many phone calls, managed to source a pack of 10mcg which I am hoping to receive tomorrow but I am so confused right now from what you have informed me.

I have mentioned many times over the last year or so that I am on Morningside due to having a severe reaction from others, especially TEVA, which was put down to the ingredients Mannitol and Acacia. I was NEVER informed by any member when I posted that Morningside contained Acacia and could be the reason I have never really felt any improvement on it, especially experiencing some symptoms a couple of hours after each dose., so in fact maybe Morningside doesn't actually suit me either.

I know that TEVA contains mannitol and acacia but you when you say "loose in a pot"...if they are made by TEVA then won't the ingredients be the same and yet you say they don't contain acacia or mannitol? I even tried Mercury Pharma some time back loose in a post and they didn't suit me at all

I am so terribly confused right now.

Someone on here some time back did link me in to a list of brand names which showed dots against each one that indicated certain ingredients. I saved it somewhere on my computer but can't find it

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

Teva LEVOTHYROXINE contains mannitol

Teva T3 does NOT contain mannitol, lactose or acacia

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

I am just changing to Teva from Morningside

A) because it’s been impossible to get Morningside 20mcg for several months

B) I am on dairy free diet (with great benefits) and wanted to move on to lactose free T3

So far……day 4 since changing…..all going ok

Teva is slightly more difficult to cut into 5mcg doses

Price paid by NHS April 2024

Morningside 20mcg is £62.32 per 28 tablets

Morningside 10mcg is £152.44 per 28 tablets

Morningside 5mcg is £118.71 per 28 tablets

Jefner profile image
Jefner in reply toSlowDragon

I tried TEVA some time back and it made me very ill, I can't have it but I can't remember whether it was my Levo or T3 that I tried. That is interesting about what you said that T3 doesn't contain those ingredients. I wonder whether I should try it

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

You sure that wasn’t Teva levothyroxine?

Jefner profile image
Jefner in reply toSlowDragon

can't remember, am trying to find the post I made about it

sparkly profile image
sparkly in reply toSlowDragon

Has Morningside 20mcg now jumped up £20 from last month?

SlowDragon profile image
SlowDragonAdministrator in reply tosparkly

It was £40.10 last month

Still a significant jump up in price !

healthunlocked.com/thyroidu...

sparkly profile image
sparkly in reply toSlowDragon

Can I ask where you found out the cost? I use the BNF app but it only gives the drug tariff price of £40.10 says "No NHS indicative available" for the 20mcg.So is it the indicative that is £62.32?

Does this price difference have something to do with why chemist are reluctant to supply certain brands because they end up out of pocket. I really don't understand how it all works?

SlowDragon profile image
SlowDragonAdministrator in reply tosparkly

here’s monthly list

NHS drugs tariff

nhsbsa.nhs.uk/pharmacies-gp...

sparkly profile image
sparkly in reply toSlowDragon

Give us clue! 18 minutes and 36 seconds later and losing the will to live 🤣🤣🤣

SlowDragon profile image
SlowDragonAdministrator in reply tosparkly

Search liothyronine

sparkly profile image
sparkly in reply toSlowDragon

Nope nothing comes up on the search bar

There's a 1265 page pdf. Am I supposed to just scroll through that till I find it? 😲

sparkly profile image
sparkly in reply tosparkly

It's fine I'll stick with app. I'll still be looking for it 3 weeks on Sunday 🤣

helvella profile image
helvellaAdministrator in reply tosparkly

April 2024 - Current NHS Drug Tariff Liothyronine Prices

healthunlocked.com/thyroidu...

The indicative prices are utterly confusing!

SlowDragon profile image
SlowDragonAdministrator in reply tosparkly

Click on big green box “ view the April drugs tariff online”

This opens next page

drugtariff.nhsbsa.nhs.uk/#/...

Put liothyronine in the search box

click on first option

PartVIIIIA

This takes you to all drugs starting with L

Scroll down to find Liothyronine

sparkly profile image
sparkly in reply toSlowDragon

Thanks so much for all the info and help. I think problem lies with me using mobile instead of computer. Can't see full screen unless turn phone to landscape and then I still struggled looking it up🤦🏼‍♀️Have you tried the BNF app? Very simple to use..that's why it's great for people like me 😂

Jefner profile image
Jefner in reply toSlowDragon

i just made enquiries at Boots about TEVA T3 and it only comes in 20mcg apparently and they have to order it which takes around 72hrs. I take it you are on 20 and cutting?

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

Yes

I take 4 x 5mcg per day cutting into 1/4’s

How much are you taking per day

Plus Levo?

Which brand levothyroxine

Jefner profile image
Jefner in reply toSlowDragon

I take 125 Levo, 100 Accord, 25 Wockhardt, 10 T3 split into two doses. How long does it take your pharmacy to source your TEVA T3

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

I can’t find any local pharmacy who were prepared to supply any T3 at all.

(just moved house and geographical area - tried over 30 pharmacies)

Currently using Springfield pharmacy by post …Takes 7-10 days

thyroiduk.org/get-support/t...

Jefner profile image
Jefner in reply toSlowDragon

i might try them thank you

I had tried Pharmacy4U but they messed things up totally for me

Jefner profile image
Jefner in reply toSlowDragon

you say the T3 "loose in a pot" doesn't have the ingredients in, do they also come in a blister pack, don't want to order the wrong ones

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

It’s a branded and sealed tub with PIL leaflet

helvella profile image
helvellaAdministrator

ALL ingredients of ALL UK thyroid hormone medicines are in my UK medicines document.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

Jefner profile image
Jefner in reply tohelvella

I am so terribly confused right now and totally clueless in what to do

I have mentioned many times over the last year or so that I am on Morningside due to having a severe reaction from others, especially TEVA, which was put down to the ingredients Mannitol and Acacia. I was NEVER informed by any member when I posted that Morningside contained Acacia and could be the reason I have never really felt any improvement on it, especially experiencing some symptoms a couple of hours after each dose., so in fact maybe Morningside doesn't actually suit me either. SlowDragon has just replied and informed me Morningside has Acacia

Someone on here some time back did link me in to a list of brand names which showed dots against each one that indicated certain ingredients. I saved it somewhere on my computer but can't find it

I have had a look at your links but my brain won't function well enough to understand a lot of it. I just need to know what I can try; I really can't take much more of all of this tbh. I just keep hitting a brick wall

helvella profile image
helvellaAdministrator in reply toJefner

The link I have just posted takes you to the information.

And I have ENHANCED the UK document further so that it actually lists EVERY SINGLE INGREDIENT in every UK thyroid hormone medicine.

Jefner profile image
Jefner in reply tohelvella

funnily enough when I spoke with Asda in what T3 brands they can get they informed me that they can get Accord in 20mcg which is the brand I have as my Levo. Found an old post on here from 3yrs ago but someone said Accord don't make T3

helvella profile image
helvellaAdministrator in reply toJefner

There is much confusion about Accord's T3.

They do hold a license for their OWN formulation of T3.

BUT it seems that they have actually simply been distributing another company's product.

This is perfectly legal because if you look on the packaging, it will tell you what product is inside. But if a pharmacy assistant says "Accord T3" then you have to check.

Jefner profile image
Jefner in reply tohelvella

I found an old post I made about being on TEVA but it doesn't mention whether it was Levo or T3

healthunlocked.com/thyroidu...

helvella profile image
helvellaAdministrator in reply toJefner

It isn't always entirely clear in trying to work through that thread!

Jefner profile image
Jefner in reply tohelvella

From what I now know about Morningside containing Acacia and my never really feeling any better anyway when starting T3, it might be that I am sensitive to both Mannitol and Acacia and even though Morningside doesn't contain Mannitol, I just tolerated any symptoms I had. Now JUST only discovering T3 TEVA does NOT contain either ingredients, I am wondering whether to actually try it. I just assumed anything made by TEVA would contain all the same ingredients

helvella profile image
helvellaAdministrator in reply toJefner

It is rare that ingredients (excipients) used in one medicine from a company are carried over into their other medicines - ones with different active pharmaceutical ingredients.

Most especially with large groups like Teva which were formed by taking over numerous companies in many countries. The formulations of most of their products are effectively inherited from those companies. One product might be made in one factory in one country, while another product is made in a completely different factory in another country, and the only thing they really have in common is being owned by Teva and printing "Teva" on their products!

There is no obvious reason for Teva to undertake the costly process of reformulating - and getting new approvals - just to make their products more similar.

There could be circumstances in which common ingredients are more likely than others. But we can never make any assumptions and have to look at each and every product.

RedApple profile image
RedAppleAdministrator in reply toJefner

Jefner, see if this screenshot helps

UK liothyronine ingredients
Jefner profile image
Jefner in reply toRedApple

exactly what I was looking for thank you. I am now wondering whether to try TEVA again but when I had the TEVA brand I just can't remember whether it was my Levo or T3 I had it in which gave me huge problems. I found an old post I made but it doesn't say Levo or T3 which bothered me.

healthunlocked.com/thyroidu...

helvella profile image
helvellaAdministrator

Click on the magnifying glass symbol at top right. That makes the picture pop up and enlarge.

My UK medicines document that table in it!

RedApple profile image
RedAppleAdministrator

This includes the bit on the next page

UK liothyronine ingredients
SlowDragon profile image
SlowDragonAdministrator

Most pharmacies I asked are saying that since recent changes in how their ordering system works they can only order “20mcg liothyronine “ not choose a specific brand

Obviously a specialist pharmacy might ensure they carry stock of all brands on the shelves

Jefner profile image
Jefner in reply toSlowDragon

what do you consider a specialist pharmacy though?

Jefner profile image
Jefner

I just can't keep going through this stressful hell in sourcing my meds every time I put a script in, especially when I was left without my dose for 3days last time and became so ill for over 2 weeks.

I ended up phoning Morningside yesterday and they confirmed there are supply issues until mid april. After phoning every pharmacy that actually picked up the phone I managed to source some Lio in 10mcg and luckily for me I asked if they were able to order more and she tried whilst I was on the phone and managed to order 2pk 10mcg for me and said she would keep them on the side.

What really tipped me over the scales yesterday was when the surgery reception Manager (whom I know very well and is amazing) put an urgent script in for me with the duty doctor only for the Dr to refuse issuing it, something to do with the fact they don't issue Liothyronine that much and some political shite. I have been taking it since around 2016 so it's on my record I have it but she still refused so I am making a formal complaint against her for lack of duty of care and not providing me with vital meds. I won't be making the formal complaint to the surgery because it will just "disappear" so to speak so going to the top. Am not being treated like that nor will she get away with treating other patients like that

Thankfully I will have only been without my FULL dose for a day and a half when my script arrives in around an hours time.

I just cant be the only one who is having issues every time they put a script in, in not being able to get their meds, it happens to me every damn time now

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