Thyroid Medication query: I have always taken... - Thyroid UK

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Thyroid Medication query

emilysnannie profile image
32 Replies

I have always taken TEVA Levothyroxine for years - a couple of months ago I noticed the packaging had changed but I was told they were the same. After taking the new one for a couple of month I became very ill, I had to stop taking them. After contacting my doctors I was told there are no other options instead. I pointed out that I am Gluten & Wheat free and can only tolerate a small amount of Lactose. I then contacted my pharmacist who suggested I go on to Liquid version, my doctor first refused to prescibe this. Having gone with my medication for 5 days the pharmacist got them to prescribe for short time. My main question is , is there another Levothyoxine tablet that I can get in the UK that is gluten wheat lactose low ? sorry for lengthy story but hope you lovely people can help me as I have only 13 days of the liquid. Thank you in advance,

Regards

Christine Self

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32 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Do you have a photo of the packaging? What was the new brand called?

What dose do you take?

Depending how much Levo you take you could try vencamil which is lactose free. All UK Levo is gluten free.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

helvella profile image
helvellaAdministrator

As Jaydee1507 has said, almost all UK medicine is gluten and wheat free.

helvella - Gluten in UK Medicines

A short discussion about how to identify the few UK medicines which might contain gluten or wheat. Also some information about USA and EU.

Last updated 19/07/2024

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

Teva and Aristo are lactose-free.

I find it incredible that we are told to ask our pharmacists. You do exactly that, and get incomplete and not entirely helpful advice.

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 injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.

📄 dropbox.com/s/bo2jzxucgp9hl...

I hope you have put in a Yellow Card report on the Teva that caused you problems?

🟨 Making Yellow Card Reports 🟨

healthunlocked.com/thyroidu...

LottyA profile image
LottyA

Hi Christine, I had the same issue. Teva has changed their formula a few months ago. I’m sorry I can’t give you the full details as I don’t have a packet anymore and google not helping but it was one of the fillers which changed. When I looked it up it was a kind of lactose sugar. I did eventually manage to change to Wockhardt which has no gluten or dairy. It isn’t available in all doses but there is a 25. I did have a bit of a mission changing as I’ve found out from here how cheap Teva is and so it’s a preferable option for the NHS. However in the end I went to Boots and got some from a script from our surgery. Our surgery now order it in for me.

helvella profile image
helvellaAdministrator in reply toLottyA

Could you let us know more about this formulation change?

I just checked the accessible documentation and found no change in list of excipients from the re-launch of New Formulation Teva levothyroxine in 2016 through to today.

Public Assessment Report - October 2016 from MHJRA website:

Other ingredients consist of the pharmaceutical excipients, namely maize starch, mannitol (E421), microcrystalline cellulose, sodium citrate, acacia and magnesium stearate

mhraproducts4853.blob.core....

Summary of Product Characteristics - 09/09/2024 - from MHRA website

List of excipients

The tablet contains maize starch, mannitol (E421), microcrystalline cellulose, sodium citrate, acacia and magnesium stearate

mhraproducts4853.blob.core....

Summary of Product Characteristics - 02/08/2023 - from Teva website

List of excipients

The tablet contains maize starch, mannitol (E421), microcrystalline cellulose, sodium citrate, acacia and magnesium stearate.

products.tevauk.com/mediafi...

Patient Information Leaflet - This leaflet was last revised in 08/2024. - from MHRA website

The other ingredients are maize starch, mannitol (E421), microcrystalline cellulose, sodium citrate, acacia and magnesium stearate

mhraproducts4853.blob.core....

The below applies to Wockhardt levothyroxine ONLY. You can see it contains lactose - usually classified as dairy.

Patient Information Leaflet - This leaflet was last revised in 04/2023 - from MHRA website

The other ingredients are lactose, sucrose (fine powder), maize starch, magnesium stearate

mhraproducts4853.blob.core....

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 injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.

📄 dropbox.com/s/bo2jzxucgp9hl...

jgelliss profile image
jgelliss in reply tohelvella

Helvella Thank You for being on top of your game. I'm concerned not if Teva changed their T3? It's so concerning for all of us that are dependent on our thyroid hormones to work optimally that they don't change the fillers that work well for us.

helvella profile image
helvellaAdministrator in reply tojgelliss

I really don't think that changes happen very often.

The only formulation changes I can think of (within UK thyroid hormone tablets) have been:

When we got Teva New Formulation in 2016 - and we could all see that due to the fact they emblazoned the words across the packs.

When Mercury Pharma made a small adjustment to ensure that their Eltroxin and generic levothyroxine were identical in every dosage. One had a slightly different amount of one excipient in one dosage.

I think one tablet changed size - but nothing else - so had less total quantity of excipients but the same substances.

That's it. I might have missed something - always possible. And the companies might have changed suppliers - e.g. buying magnesium stearate from whoever is cheapest supplier of the standard specification.

In levothyroxine oral solutions the Teva product did change but so did the product licence number and the manufacturer. And it was done overnight - all products replaced on one day.

jgelliss profile image
jgelliss in reply tohelvella

Thank You So Much Helvella. It's very unfortunate that years ago we never had to question doubt the manufacturers of our Thyroid meds. Since the problems with the NDT's reformulationsand no doubt some other manufacturers reformulated. I can't help but be very concerned with the Thyroid Hormones that my life depends. It's been a concern since my TT and my Thyroid Hormones are now in a bottle.

I'm sure many share in this concern. Reformulations and back orders. Trust me we don't need any extra stress .

helvella profile image
helvellaAdministrator in reply tojgelliss

Manufacturing and distribution issues we have aplenty! And new products popping up and suddenly disappearing!

jgelliss profile image
jgelliss in reply tohelvella

Exactly. It all boils down to not for our benefit at heart but it's greed called M-O-N-E-Y for manufacturers.

LottyA profile image
LottyA in reply tohelvella

I’m not sure I have packaging to give exact details but I am 100% sure that there was a change in the formulation. It was a filler /sweetener - lactose based. The packaging change alerted me to it.

helvella profile image
helvellaAdministrator in reply toLottyA

The old formulation, the one which was withdrawn in 2012, that did contain lactose.

When they returned with the entirely new formulation in 2016, it contained mannitol and has done ever since. I tried it shortly after that re-launch and found it intolerable.

LottyA profile image
LottyA in reply tohelvella

The new packaging did flag up that there was a change. In brief it was a Lactose sugar

emilysnannie profile image
emilysnannie in reply tohelvella

Hi Helvella

Thank you for your help very appreciated, My Pharmacist use to work for TEVA so she spoke to them and they confirmed that they had changed the formula. Noticed tablets a lot larger than original ones which I was fine on.

Cx

helvella profile image
helvellaAdministrator in reply toemilysnannie

Please tell us what changed.

And when.

And did you put in a Yellow Card report?

RedApple profile image
RedAppleAdministrator in reply toemilysnannie

emilysnannie 'My Pharmacist use to work for TEVA so she spoke to them and they confirmed that they had changed the formula.'

Can you please, please tell us more. What did Teva say has changed about the forumlation?

What are the exact ingredients listed on the Patient Information Leaflet inside the box of the changed formulation?

Can you also attach a photo of the box for us to see?

emilysnannie profile image
emilysnannie in reply toLottyA

Thank you Thank you Lotty - I have been given the Levothyroxine Liquid for a short time . So that I am not without this, obviously this is for short term and I am getting no where finding an alternative. My Drs havent helped at all . My local pharmacy have been amazing. Do Wockhardt do different formulas , only so I can make sure I get the correct one... Dont want to go thru this again..

I cannot thank you enough Lotty , you know what its like when your doctors just dont get it. I knew Teva had done something because of how ill I felt , my drs kept saying stick with it ..... I have taken the new Teva one for a few month and said to the Drs that the leaflet does say that if you have certain symptoms ( which I had) stop taking them and see a Dr immediately or go to the hospital. There answer was no other options..

Have a lovely Sunday😍

helvella profile image
helvellaAdministrator in reply toemilysnannie

My UK medicines document contains EVERY UK thyroid hormone medicine (other than specials - made to order to special imports).

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 injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.

📄 dropbox.com/s/bo2jzxucgp9hl...

There is only one Wockhardt levothyroxine product. A 25 microgram tablet.

But that Wockhardt product DOES CONTAIN LACTOSE.

LottyA profile image
LottyA in reply toemilysnannie

It’s so soul destroying isn’t it. Why there should be so much filler /sweetener in a tablet no one needs to actually chew as they are so blinking tiny.

So Wockhardt seem a clean formula. The only drawback is the smaller mg doses. What dose are you on Emily?

RedApple profile image
RedAppleAdministrator in reply toLottyA

'Why there should be so much filler /sweetener in a tablet no one needs to actually chew '

Lactose in levo isn't there as a 'sweetener'. It's just one of the excipients that helps to bind the microscopic amount of active ingredient(T4) into a tablet. Lactose has been an ingredient in many medicines for many decades, and came about long before the pharmaceutical industry realised and accepted that even tiny amounts might cause problems for genuinely lactose intolerant people. Making active ingredients that are barely visible to the naked eye (i.e. T4 and T3) into tablets isn't a straightforward process. Finding a suitable replacement for tried and tested excipients takes a long time, with much costly trial and error.

helvella profile image
helvellaAdministrator in reply toRedApple

Absolutely!

And lactose has a very long history in medicines herbal, homeopathic and in itself. - Long before "big pharma" :-)

The first crude isolation of lactose, by Italian physician Fabrizio Bartoletti (1576–1630), was published in 1633. In 1700, the Venetian pharmacist Lodovico Testi (1640–1707) published a booklet of testimonials to the power of milk sugar (saccharum lactis) to relieve, among other ailments, the symptoms of arthritis. In 1715, Testi's procedure for making milk sugar was published by Antonio Vallisneri. Lactose was identified as a sugar in 1780 by Carl Wilhelm Scheele.

en.wikipedia.org/wiki/Lactose

Those of us who have issues with lactose might find this paper from 2022 of some interest:

Lactose: Characteristics, Food and Drug-Related Applications, and Its Possible Substitutions in Meeting the Needs of People with Lactose Intolerance

ncbi.nlm.nih.gov/pmc/articl...

Some of us are convinced that there is a specific reason that people who consume lactose in many other forms (food, drink, medicines, supplements) without obvious problems, seem to find they have issues with levothyroxine which contains lactose. Leading to the suspicion that there is some sort of interaction between them - likely only in the digestive system and not in laboratories.

emilysnannie profile image
emilysnannie in reply toLottyA

Hi Lotty I'm on 75 but take 3x 25 mg . When I took 75 mg I just didnt feel right so went back to 3 x 25mg. I will be speaking to my pharmacy tomm with regard to Wockhardt.

Liquid working well feeling so much better but know the dr's wont carry on prescribing . Cannot thank you enough.

Chris x

LottyA profile image
LottyA in reply toemilysnannie

Sorry to mislead you re lactose in Wockhart Chris. But I believed a lengthy article on throxine which baldly stated it was. However there was something in the Teva which did not work for me. And it definitely changed formula when the packaging changed. I think I binned the last lot I had but will check and get back to you if it turns up. Definitely lactose/sugar.

I expect it’s all a bit trial and error to get the right one for you. One thing I will say though is if you are greeted with a ‘no’ from either your doctor or pharmacy keep going. Say you need some problem solving.

This happened to me and I kept going and suddenly it was possible to switch. Teva is very cheap so it’s probably prioritised. If it’s an issue with your pharmacy people on here have recommended getting their doctors to specify brand on their scripts. Some people have been told it’s not possible by their doctors but it apparently is your right to do so. As Helvella mentions there is so much in these small tablets that it could be one of many. Have you already gone gluten free?

LottyA profile image
LottyA in reply toemilysnannie

I do know exactly what you mean. Sometimes if you miss reformulations in your normal thyroxine you can feel either ‘off’ or downright poorly. Amazing really that this is still an issue for us as gluten and dairy seem to be a problem for people with thyroid issues

I am now reliably informed that Wockhardt is not lactose free but for me the change to it worked. I am not feeling unwell and my labs have improved .

Do you know what your food allergies are?

helvella profile image
helvellaAdministrator in reply toLottyA

Wockhardt is NOT dairy-free.

It contains lactose.

And ALL UK thyroid medicines are gluten-free (as are almost all other UK medicines).

LottyA profile image
LottyA in reply tohelvella

Thank you for pointing this out. I was misinformed re this by a lengthy article I found online on thyroxine. Luckily for me the change worked. Is there any brand which doesn’t have lactose?

helvella profile image
helvellaAdministrator in reply toLottyA

Yes. Currently Teva and Aristo Vencamil are lactose-free. (Though Teva contains mannitol and acacia - both of which are suspected of causing issues to some individuals.)

My document identifies all excipients in all UK thyroid hormone medicines.

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 injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.

📄 dropbox.com/s/bo2jzxucgp9hl...

emilysnannie profile image
emilysnannie in reply toLottyA

Hi Lotty Food allergies Gluten Wheat grains and can only cope with very small amount of Lactose... ty cx

LottyA profile image
LottyA in reply toemilysnannie

Hope you get sorted Christine! Let me know! L x

emilysnannie profile image
emilysnannie in reply toLottyA

Hi Lotty

Hope you are still doing well. I having a terrible time. The Drs eventually gave me 1 bottle of Levythroxine (free of everything) working really well. I was told I could re order until we can find another option, tried Monday this week ( I order on line, that stated it had been cleared) The doctors will not issue it so I now dont have anything to take. I have asked the pharmacist for 2 other pills that are lactose free and the NHS will not allow them. Dr ringing tomorrow hope I can get something ...... Do you know how much lactose is in the tablets you are taking? What dose do you take mine are 75. If its low maybe I can be put on to them.

Thank you so much for all your help its very appreciated. Chris x

Caradoc1a profile image
Caradoc1a in reply toemilysnannie

In what way were you ill? I've only ever had teva and haven't fell well since I started taking them. Thanks

LottyA profile image
LottyA

hi Christine, sorry for slow reply. I saw this on here which states the gov position re prescribing which you could take to your surgery. I found that both my surgery and local Boots seemed reluctant to change my prescription from Teva. So I decided to have a stand off at Boots as my local surgery had passed me on to them. I said I cannot take Teva due to intolerances so I am asking you to be problem solving now. Suddenly they had the Wockart ones. Albeit in 25 g. I had got to the end of my tether with them and it worked. They may be under instruction to resist prescribing more expensive levo. Not sure how much lactose is in either but I’m definitely definitely better on the Wockart than the Teva. Hope this helps x

gov.uk/drug-safety-update/l...

emilysnannie profile image
emilysnannie in reply toLottyA

Hi Lotty Hope you're weekend is going well. it's taken me weeks to sort meds I am now on Vencamil 75mgs from Aristo Pharma (German) totally luten, wheat and lactose free. So far so good. I found these !! Dr agreed to prescribe them. Very very relieved . Thank you again for all your help it is so appreciated. Love Chris x

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