helvella - Thyroid Hormone Medicines: I have just... - Thyroid UK

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helvella - Thyroid Hormone Medicines

helvella profile image
helvellaAdministrator
47 Replies

I have just made this new edition available. Changes that have been made include:

● Addition of lots of products that had not previously been included (mostly non-UK);

● Reorganisation so all the UK information appears together nearer the start of the document;

● Redesign of the page footer to include links to the major divisions of the document;

● More constructive (and consistent) use of colour in places like headers.

Inevitably, there will be mistakes after such a major reorganisation. Please let me know if you find any.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

Updated 2023/01.30

I have a blog page which links to my medicines document. It offers at least two different ways of accessing it. And adds a QR code to make it easier for phones.

Please go to my medicines document via this link in future:

helvella - Thyroid Hormone Medicines[/i

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

47 Replies
Yeswithasmile profile image
Yeswithasmile

Thanks Helvella. So comprehensive. It must have taken you an absolute age. I know I speak for everyone by saying how much your invaluable resources on your Dropbox are appreciated. We are very lucky to have you 😊

BB001 profile image
BB001

Wonderful! This document is a real gem.

Update on the Roma liothyronine situation:

I've just been speaking to the pharmacist attached to my GP Surgery.

She has put Roma liothyronine capsules 5mcg on my repeat prescription. 😀

As Roma liothyronine is hard gel capsules they can't be divided/separated I have to make up my daily dose using 5mg, which is expensive.

One of my local pharmacies can get ROMA liothyronine capsules from their wholesaler, but only in 10s and 20s. Apparently, the CCG will only authorise 5mcg and 20mcg Roma capsules. Hence putting Roma 5mcg capsules on my repeat prescription. Hopefully the GP's pharmacist will be able to persuade my local pharmacy to put pressure on their supplier to get Roma 5mcg.

GP's pharmacist is checking with pharmacy to confirm what they told me about not being able to get Roma 5mcg liothyronine capsules. She's also going to speak with CCG to see why they don't authorise 10mcg capsules. As it'll be costing so much for me to be given my dose in 5mcg capsules, she will be able to give them justification for changing their policy.

So, I'm getting there, but I'm not at a point where I can try Roma yet. There will also be a delay whilst I get the prednisolone (prescribed for 4 days for an allergic reaction) out of my system. Then, after I've spent a month checking my reduction to summer dose is correct and stable, I'll be able to compare like with like.

BB001 profile image
BB001 in reply to BB001

25th May 2022

Roma update. Pharmacy's wholesaler says out of stock for 10mcg Roma liothyronine. No news on 5mcg. Pharmacist going to phone them to find out when likely to be able to get them. No news on CCG authorisation of 10mcg Roma liothyronine yet.

helvella profile image
helvellaAdministrator in reply to BB001

If Roma is not available, maybe contact Colonis and see if their products are now being marketed?

For some reason, we have heard nothing of them actually being distributed.

(I am sure they are exactly the same product - same manufacturer, same description.)

BB001 profile image
BB001 in reply to helvella

Thank you. I'll try contacting Colonis.

helvella profile image
helvellaAdministrator in reply to BB001

The approval of Colonis was actually transferred to Roma - hence there won't be any Colonis product. (If I have understood properly. :-) )

BB001 profile image
BB001 in reply to BB001

14th Jun 2022

Roma update.

Local pharmacist has come up trumps. I now have 2 packs of Roma 5mcg capsules and 1 pack of Roma 10mcg capsules. Which means that my GP's pharmacist must have succeeded in persuading my CCG to fund the 10mcg capsules. My GP's pharmacist has been incredibly supportive during my quest to try Roma.

I've got to wait a few days for the swelling/ inflammation to die down (from being on a long car journey and not being able to stick to my restricted diet), then I'll have a stable baseline from which to try Roma liothyronine.

Attached is a photo of the 5mcg capsule size - it's tiny. Only about 6mm long.

Theoretically it would be possible to pull a capsule a part and use microgram scales to weigh out a fraction of a dose, but it would be incredibly fiddly.

knitwitty profile image
knitwitty

Thank you so much for this extensive document , it must have taken an age to compile. Very much appreciated. :)

BB001 profile image
BB001

I can't find UK in the index under this bitNational Medicine Information Sites to know what page to jump to.

Though by doing a search I found the actual section on page 94 (but Adobe acrobat on my phone says its on page 10??? Do you need to press 'update fields' on your index? ) .

I found UK (Scotland, Wales and Northern Ireland) ok in the index.

helvella profile image
helvellaAdministrator in reply to BB001

I have just done a screenshot. Page 21 (which is in the Table of Contents) has entries for United Kingdom. Click on whichever you want to look at and it should take you to Page 418 or 419.

Depending on how you are viewing the document, you might, or might not, have the Table of Contents down the left side. It is optional in Adobe Acrobat Reader and macOS Preview (and quite a few others). I hope you can see angle brackets in there?

Click on an angle bracket (<)and it will open up more entries at the next level down and change to a down-pointing angle bracket (∨).

Does that make sense? If not, let me know!

Screenshot of Thyroid Hormone Table of Contents
BB001 profile image
BB001 in reply to helvella

The explanation about angle brackets was good.

helvella profile image
helvellaAdministrator in reply to BB001

I had made a mistake - now fixed. You will need to download it again.

BB001 profile image
BB001 in reply to helvella

Thank you! Will do.

humanbean profile image
humanbean

It's a fantastic document, really well designed, and must have taken you weeks of work. Thank you very much. :)

...

Just a query...

When I open the Dropbox link the following filename is opened :

helvella - Thyroid Hormone Medicines (conflicting copy 1).pdf

I just wondered what the relevance of the odd naming was.

helvella profile image
helvellaAdministrator in reply to humanbean

It is a mistake! I'll get that sorted. :-) Thanks for letting me know.

helvella profile image
helvellaAdministrator in reply to humanbean

I think it is now fixed. You will have to download it again. :-)

humanbean profile image
humanbean in reply to helvella

👍 Thank you. :)

SarahJane1471 profile image
SarahJane1471

WOW 😮👏👏👏👏👏

radd profile image
radd

helvella,

Further amazing info to 'keep about my person'. Thank you for working on this. It is an extremely comprehensive piece of work 😊

helvella profile image
helvellaAdministrator

Has just been further updated to make various additions (specifically, India and Bangladesh levothyroxine) and general maintenance and tidying.

Amazing how difficult it is to get information for some countries and how easy for others.

There is a huge number of brand names used in India but it is almost impossible to find out which are just relabelled/repackaged forms of others. Or, for that matter, which are really current and which have been discontinued.

helvella profile image
helvellaAdministrator

Updated again yesterday. Specifically, includes Portugal (levothyroxine only as they have no liothyronine products).

BB001 profile image
BB001

15th July 2022 - Update on Roma situation

I am having trouble sourcing Roma. My local pharmacy can get them but there's on average a 2 month lead time, and it involves them personally ringing the wholesaler, as the online system won't let them order them. The good news is that they have managed to get Roma 5mcg capsules.

I now have 3 boxes of 28 capsules of 5mcg, and 2 boxes of 10mcg. As I need 65mcg a day this will last me 28 days. I really wanted 2 months supply before i try Roma, so I can have 2 sets of monthly blood test results.

I have resorted to emailing Roma for a list of wholesalers who will supply it.

BB001 profile image
BB001

The saga continues...

This morning, 15/7/22, I wrote to Roma Pharmaceuticals and asked for a list of pharmacies that stock Roma. With hindsight, I should have asked for wholesalers.

This is my email:

Good morning

I would like to thank you for producing a liothyronine with so few extra ingredients.

However, I have green NHS prescriptions for Roma liothyronine and I am having difficulty finding a pharmacy that can supply it.

I wondered whether you have a list of pharmacies that supply Roma liothyronine? I need 5mcg, 10mcg, and 20mcg strengths.

I know many people who would like to try Roma liothyronine but who, like me, cannot obtain it.

Kind regards,

This is Roma's response.:

'Thank you for your enquiry regarding Liothyronine capsules and which pharmacy to contact to source the medication which we received on 15-Jul-2022. Please note, Roma Pharmaceuticals only recommends using products within the terms of their licence, therefore any use outside of the product licence would be a decision at the discretion of the treating healthcare professional.

As you may already be aware, pharmaceutical companies must abide by a strict ethical code of practice that prevents them from directly advising patients on medical matters.

Therefore, we can only suggest that you return to your doctor if you require medical advice, including alternative treatments. As you will appreciate, your doctor will be best placed to advise you, knowing your full medical history.

Alternatively, you can advise your doctor to contact us if they require assistance to source Liothyronine capsules.

I hope you found this information helpful. Please do not hesitate to contact me if I can be of any further help.'

This is my reply:

'I think you may have misunderstood my enquiry. I am not asking for medical advice. I have been prescribed Roma liothyronine by my NHS GP for the treatment of hypothyroidism, which is within the terms of Roma Pharmaceuticals' product licence for liothyronine. I am having difficulty finding a pharmacy who can supply it and would like to know which pharmacy or wholesaler to contact. Could you please therefore send me a list of wholesalers or pharmacies who stock Roma liothyronine capsules.'

I dislike being faced with a brick wall just because I'm a consumer/patient, I hope I wasn't impolite.

helvella profile image
helvellaAdministrator in reply to BB001

Unfortunately pharmaceutical companies are subject to many regulations. I contacted Roma when it first seemed to be theoretically available but wasn’t in reality. The reply was as helpful as they could be.

Will check out what they said and add to this reply in a while.

BB001 profile image
BB001 in reply to helvella

Further update...I found a separate post by Gingernut44 (thank you!) that said they had managed to obtain the 4 wholesalers Roma Pharmaceuticals deal with, namely:

Phoenix healthcare

Alliance

Maunderssley

Lexon

Armed with this information, and Boots the chemist telling me to try independent pharmacies such as x,y,z, I rang around until I found one of the independent pharmacies that dealt with 3 of these suppliers. Bingo!

I was told by this pharmacy could only find out if they could get a medication by placing an order and could I bring the prescription in.

I then had a stroke of luck, one of my prescriptions had a 'dispensing token' barcode on it. So I was able to give this to the pharmacy. If they can get Roma T3, it will be in on Monday and they'll ring me.

Phew! Having a chronic medical condition with non standard medication is very time-consuming. This has taken 2 days solid to get to this point.

helvella profile image
helvellaAdministrator in reply to BB001

Ridiculous isn't it!

My fingers are crossed for you.

BB001 profile image
BB001 in reply to helvella

I can't help thinking that the more of us that manage to get Roma liothyronine, the easier (and cheaper?) it'll become.

helvella profile image
helvellaAdministrator in reply to BB001

I agree about easier - in time. Thinking as a doctor, if other doctors all around are prescribing liothyronine, how long can you continue to refuse?

Regarding price, I would be amazed if Roma haven't ensured their margins are pretty good. Obviously (from their point of view) they have to recoup the costs of getting it to market and make some profit. As they capture more market share, other companies might feel forced to compete - maybe getting somewhere near matching price. Roma surely have thought of that and will be able to respond and retain market share?

BB001 profile image
BB001 in reply to helvella

16/7/22 update on Roma

Pharmacy have just called. My Roma liothyronine was in this morning's delivery. Excellent service, I only ordered it yesterday afternoon. I might actually have found a quick, reliable source of supply. It's also in area, so I'm able to electronically direct all my prescriptions there. This will save a lot of hassle for me, GP, and pharmacy.

helvella profile image
helvellaAdministrator in reply to BB001

Hooray. :-)

BB001 profile image
BB001 in reply to BB001

19th July 2022 Update on Roma liothyronine

As you know from my other updates, I emailed Roma asking for a list of wholesalers they use to supply Roma liothyronine. They promptly replied, very nicely, saying their licence didn't allow them to give medical advice to the public.

Today I got a further email saying the same thing and saying there were no problems with supply. Given the trouble I had obtaining Roma liothyronine, I replied with the following email.

'Thank you for your email. You might like to know that my experience doesn't match with your statement that you 'have no problems with supply'. I approached several pharmacies to obtain Roma liothyronine, in 3 different strengths and none of them could obtain it. These pharmacies included Boots and Tesco. I also tried one of my local pharmacies without success. The other pharmacy local to me could see it on their system to order, but it wouldn't let them order online. They had to personally ring the wholesaler and it took 3 weeks and a lot of chasing to get any Roma liothyronine, then only one strength and part of the order for that strength arrived. This is obviously not sustainable for every prescription, hence my attempt to find a different pharmacy that could get Roma liothyronine more easily. Some pharmacies even needed the physical prescription in their hand, as they couldn't find out if they could supply it without placing an order.

It was at this point I contacted Roma Pharmaceuticals to find out a list of wholesalers they deal with and increase my chances of finding a pharmacy that could dispense Roma liothyronine. My email to Roma to obtain this information was unsuccessful, which was very frustrating. I understand that your licence restricts you providing medical advice to the public, however this wasn't medical advice. I merely wanted to know where I could obtain the item I had been prescribed. If the terms of your licence restrict this information being provided, then I suggest this needs challenging. It could also be an over zealous interpretation by Roma Pharmaceuticals of their licence conditions, which as Roma Pharmaceuticals are new to supplying liothyronine in the UK market, would be understandable, albeit not ultimately in patients', or Roma's, interests.

I then looked online and found that Roma supplied to four wholesalers. This information speeded up my phone calls to pharmacies as it was easier for them to answer, 'did they use these wholesalers', rather than 'did they supply Roma liothyronine', and didn't necessitate me physically visiting the pharmacy to take my prescription in.

Boots suggested I tried independent pharmacies, so I tried ringing them. The first two I tried couldn't get Roma liothyronine. The third dealt with three of the four pharmacies I was given. They ordered it online with their wholesaler Phoenix on a Friday afternoon and it arrived the next day first thing. This is how it should have been at the start

I gave up trying to getting the rest of my original prescription for Liothyronine from the original pharmacy that said they could supply it, but who couldn't do so in a timely manner. As the other strengths I had been prescribed were on a prescription that had already been part dispensed, that pharmacy was unable to give me that prescription back. I therefore had to go back to my doctor for another prescription for Roma liothyronine. Armed with this prescription, after having had to collect the physical paper prescription from my GP as no one knew which pharmacy to send it to electronically, it then, as detailed above, took me a considerable amount of time to obtain the medication itself. Thus you can see why I disagree that there are 'no problems with supply'.

BB001 profile image
BB001 in reply to BB001

26th July 2022 - Roma update

I have received the following response to my email.

'Thanks for getting back to me regarding your experience with Liothyronine, obviously it is not the service we would expect you to receive when obtaining one of Roma’s products. However since receiving your email we have reached out to our contact at Boots to let them know about the issues you experienced, they will be looking into why stock was not obtainable as all branches of their wholesaler regularly order Liothyronine from Roma. We would expect them to be able to supply you in a timely manner.

Unfortunately we are unable to give out a list of pharmacies where stock is available as we supply to wholesale. This is the most efficient way to furnish patients with stock as the wholesalers we distribute to have multiple depots around the country. Below is a list of the wholesalers we have supplied.

Phoenix Healthcare

Alliance Healthcare

Mawdsleys Brooks

If you have any problems in the future please share the wholesalers and pip codes listed below with your pharmacist, they will help locate the Roma Liothyronine. I have also contacted Alliance Healthcare to obtain the internal pip codes they use in order to share them with you.

[See table attached]

As explained we do not have any problems with availability and regularly provide stock to the above wholesalers, usually on a weekly basis.'

As you can see this is a really helpful reply and with luck anyone else contacting Boots will not be told they can't obtain Roma liothyronine.

PS on a phone, tap on the table, to see the complete table

Pip codes for Roma liothyronine
helvella profile image
helvellaAdministrator in reply to BB001

I am still waiting for a response to a complaint I put in to Boots several weeks ago - followed by by a "Where is my reply?" copied in to their CEO.

Very well done. Roma come across quite well. Boots don't.

Fruitandnutcase profile image
Fruitandnutcase

That is absolutely awesome helvella. As someone has already said - what would we do without you? 😊☀️😊

BB001 profile image
BB001

3rd August 2022 - update on Roma liothyronine.

Roma liothyronine is reported to be good, if you can tolerate it.

I tried substituting 5mcg of Roma liothyronine for 5mcg of my usual thybon henning liothyronine. It made my hands swell up and the joint at the base of my little finger became very painful. These are the symptoms I normally get when I eat egg, or something else I'm allergic/ intolerant to.

When my fingers go down (I've been eating ice cream which I'm also allergic to), I'm going to try emptying the capsule into my mouth, to see if it's the capsule I'm reacting to.

Though it might be that Roma is liothyronine sodium, whereas Thybon Henning is Liothyronine hydrochloride.

helvella profile image
helvellaAdministrator in reply to BB001

Thybon Henning is Liothyronine hydroxide.

I think it is hydrochloride (spelling checker? :-) )

How odd. The instructions say to mix it with water if removing from capsule.

Did you try an antihistamine?

BB001 profile image
BB001 in reply to helvella

Oops. Corrected it. Thank you.

BB001 profile image
BB001 in reply to helvella

I didn't realise I had to mix it with water. Isn't swigging it down with water the same thing 🤔?

I didn't try antihistamine, I didn't think of it, probably because it doesn't usually make much difference when I have this sort of reaction. I'll try it next time though.

helvella profile image
helvellaAdministrator in reply to BB001

I have no idea if it makes any difference! But with something as potent as T3, it just strikes me as sensible to disperse/dissolve it to minimise the possibility of a clump forming and having an impact. (Though that is as likely a flight of my imagination as a possible happening.)

BB001 profile image
BB001 in reply to helvella

As tablets of liothyronine are in clumps, I can't see that we need to worry about it clumping

helvella profile image
helvellaAdministrator in reply to BB001

However, a tablet is expected to be swallowed whole.

Whereas clumps which form in the mouth might get stuck between teeth, etc.

BB001 profile image
BB001

8th Aug 2022 update on Roma.

I have heard that the Roma capsules are made of pork gelatine. This would explain my reaction. I am allergic to pork and these are the symptoms I get if I eat pork.

helvella profile image
helvellaAdministrator in reply to BB001

That makes complete sense - albeit unfortunate.

The Patient Information Leaflet only says "gelatin" and doesn't state whether pork, beef (or any other sort).

BB001 profile image
BB001 in reply to helvella

24/8/22 update on Roma

I've been in touch with Roma Pharmaceuticals and they say:

'In response to your inquiry Roma can confirm that the supplier of the capsules states the following on their certificate of analysis:

“The supplier can use blends of several pharmaceutical gelatins. When bovine gelatin is used, it is in full compliance with all pharmaceutical regulatory statutes.” Roma is unable to state exactly the source of gelatin.'

I conclude from this that it is highly likely that the capsule I took contained pork gelatin.

I am going to test this hypothesis by emptying the contents out of the capsule and discarding the capsule. It will be a few weeks before I can do this though as I have injured my ribs and any extra inflammation would cause extra pain.

helvella profile image
helvellaAdministrator in reply to BB001

Hope your ribs sort themselves out - it can be desperately unpleasant when it hurts with every breath.

I am very pleased Roma took your question properly and have answered as best they can. Disappointing it isn't a 100% answer.

I had been going to suggest what you are going to do - but was concerned that even the contents being in contact might cause an issue? I hope not.

Do let us know. It is so very helpful that you have kept reporting back. :-)

BB001 profile image
BB001

Update 7th Nov 2022The delay in trying Roma capsules is due to my waiting until things are stable in my body, e.g. inflammation, dose etc. I needed to change the dose for winter so that messed up September. Then the Covid vaccine on October caused inflammation and my fingers are swollen and I've started having episodes of atrial fibrilation. GP has referred me to a cardiologist.

I wanted to let you know I haven't forgotten about reporting my experience with pulling apart and taking Roma capsules.

As with many other people on Healthunlocked, life and plans keep having to be adjusted to accommodate my health situation.

helvella profile image
helvellaAdministrator in reply to BB001

Thanks for that!

Sounds truly horrible. Hope your recovery proceeds apace.

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