Roma Liothyronine 10mcg hard capsules - Thyroid UK

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Roma Liothyronine 10mcg hard capsules

notatortoise profile image
29 Replies

I have been on 10mcg of Morningside Liothyronine and 75mcg Wockhardt Levothyroxine for 2 years with absolutely no side effects, and overall good health and energy. About 10 days ago I started taking 10mcg Roma hard capsules as these had been dispensed by my pharmacy on my last prescription. After a few days the side effects started.

Insomnia, frequent need to urinate during the night, I usually sleep all night

Pain up the right hand side of the neck

Agitation - my husband has notice I'm nippy and 'aggressive '

Night sweats

Face puffy

I had similar reactions when I was first prescribed Teva Levothyroxine, and after being changed to Wockhardt Levo had no further symptoms. Could it be the filler or a stability issue with the contents?

I would be interested to hear if anyone else has had a recent change and experienced similar symptoms.

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notatortoise
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29 Replies
Soprano67 profile image
Soprano67

hi notatortoise,

I am taking Roma 10 mg, I cut down to 5mg as I was getting heart palpitations, I don’t think they are agreeing with me either. If I take 10 I’m shaky, dizzy, irritable can’t sleep either. I find the 5mg aren’t great either. I had no problems on morning side health side apart from dizziness. Thanks

notatortoise profile image
notatortoise in reply to Soprano67

Hi Soprano67

I’ve asked the pharmacy if they can revert back to Morningside brand. It might be worth pursuing.

Soprano67 profile image
Soprano67 in reply to notatortoise

I have tried that too so here is hoping they can get it in or failing that another pharmacy. I am having the same problem getting correct brand of Levothyroxine.😊

Soprano67 profile image
Soprano67 in reply to notatortoise

I really hope you can get your brand changed. I have only taken 5mg today as yesterday I tried 10mg again.. my head today feels like it could burst feel dizzy and tired.

I was looking through the ingredients list, both morning side and another brand have Lactose possibly we can tolerate that, where other brands do not contain Lactose.

If we can’t get the brands changed I wonder can we ever tolerate aroma brand..

notatortoise profile image
notatortoise in reply to Soprano67

The Roma brand appears to have been recently introduced in the last year. Perhaps others will report similar issues. I had difficulty getting Wockhardt Levothyroxine for a while, but persevered and now my GP puts a request for only this brand on my prescription. It may be that she will also now need to specify the Liothyronine brand to avoid Roma being prescribed. Persevere with the GP and pharmacy. It will be worth it for optimum health. Good luck.

Soprano67 profile image
Soprano67 in reply to notatortoise

Thank you , I think I will report the brand to the Yellow card scheme also as u say the more reports it perhaps they might change it. I have never tried Wockhardt just Actavis one Accord which is proving tough to get in relation to Levothyroxine.

The best of luck to you also and may u feel better as I too am irritable being on this and feel very doped up on 10mg.

Take care 😊

Staffsgirl profile image
Staffsgirl in reply to Soprano67

I felt that Roma didn’t suit me at all….symptoms came back. I filled in Yellow Card, and have requested not to have Roma.

notatortoise profile image
notatortoise in reply to Staffsgirl

Well done and good luck. I’m still having difficulty persuading my pharmacy to supply Morningside only. But hopefully the more people who raise concerns about the Roma brand the more someone will listen, and supply brands which work, rather than base decisions on cost alone.

shaws profile image
shawsAdministrator

It is disappointing when our new thyroid hormone replacement causes side effects. Sometimes it takes several days before we realise what is the cause.

In your case it is Roma Liothyronine 10mcg.

I would notify your GP and request a new prescription for your preference.

If any members have had a reaction to Roma will respond when they read your post.

notatortoise profile image
notatortoise in reply to shaws

Hi Shaws

Many thanks for your support. I’ve asked the pharmacy if they can change brand back to Morningside. I’ve also raised a yellow card report just in case others are experiencing issues.

Staffsgirl profile image
Staffsgirl in reply to notatortoise

Me too.

TaraJR profile image
TaraJR

Roma capsules seem to have been favoured by ICBs/ drs/ pharmacists because when it first came on the market the 20mcg capsules were cheaper than the 20mcg tablets. BUT they are dearer at the moment! The prices change all the time so I wish they wouldn't get hooked on these things.

If you're reacting to them, request a change now.

notatortoise profile image
notatortoise in reply to TaraJR

Many thanks Tara.

I’ve requested a change.

There seems to be a lack of understanding about the impact of changing someone from one brand to another, and as you say usually budget/ cost driven rather than what’s best for the optimum health if the recipient.

TaraJR profile image
TaraJR in reply to notatortoise

They should not stick to a 'rule' based on cost. Drug tariff prices change every month, while there's increasing competition.

I hope your ICB hasn't made a policy saying only capsules - some have! Which area are you in?

notatortoise profile image
notatortoise in reply to TaraJR

Tayside - Perthshire

Citrinesun profile image
Citrinesun in reply to notatortoise

Hiya,

Can I ask how you are getting on?

Have you managed to switch brands?

I am having lots of pain issues myself and I am certain I have gained weight and ballooned up in the 2 weeks I have been on it.

I think I should put a yellow card in aswel, surely this should go in favour of getting a switch approved?

I have actually never done one before.

notatortoise profile image
notatortoise in reply to Citrinesun

Hi Citrinesun

It's been a real struggle to convince the pharmacy to change brands. You may have seen my earlier post where I had asked them to change me back to Morningside 10mcg. Firstly I was told that they were out of stock and couldn't get them. Then I was told that they were 'too expensive', I assume compared to Roma, and also because my GP had put capsules on the prescription, they could only dispense capsules i.e. Roma.

With the helpful feedback from Helvella I discovered that the 20mcg of Morningside are cheaper that 10mcg Roma, so I asked the GP to prescribe 20mcg Morningside tablets.

Went to collect my supply, and was advised that I could now have 20mcg tablets, but regrettably not Morningside as they are still unable to get this brand. I've been given 20mcg Viatris Liothyronine to pill cut to obtain 10mcg per day. I've never heard of this brand, but am willing to try any alternative to Roma. Just started 2 days ago so too early to tell.

For about 5 days, while awaiting this new brand, I did reduce the Roma capsule, by opening it and dispensing half in water, my symptoms did reduce when I did this, but I probably wasn't getting enough Liothyronine.

It's so frustrating when brands are changed due to financial reasons, with no care for patient welfare whatsoever.

I would encourage you to raise a yellow card, as this is the only way that those who make the decisions will get to know that there may be a problem with a brand, and if enough people complain they may listen to our plight.

Would love to hear how you get on

Good luck

Citrinesun profile image
Citrinesun in reply to notatortoise

Oh man, I know what you mean, I have had them do that to me with brands of other medicines & they stand there telling you it's exactly the same.. when they have never even compared ingredients.

I haven't seen your post I don't think, but I will have a look.

I see, so you asked the pharmacy first, it's true they can't dispense tabs If capsules are on the prescription.

I was quite matter of fact about checking that it stated capsules when they were ordering it in for me, now I will eat my hat as i need it the other way round! lol. 🤣

I was already thinking to just discuss with my GP & hope she can put tablets instead if I explain the issues, she understands about levo brands so I may get somewhere.. Endo was dead set against giving me anything to split, but I suspect it is more to do with cost than us getting a rounded dose, as I'm on 15mcg (5mcg x 3 a day)

I think it's Morningside I need, as can't have sigmapharm - (don't think it is available anymore but It contains mannitol).

So it's not looking good if morningside is hard to get hold of currently. Then again it may be different for 5mcg.

I will check Helvella's document again anyway and also check the latest prices to see if I can nudge the change of brand in a way that doesn't red card me with the clinical pharmacist on his scrutiny mission lol.

I would be happy to have 20mcg to split but I can't see that happening, unless I manage to convince the Endo on my follow up that I need a little more T3.. I was on 18.75mcg tiromel so I'm feeling a little under dosed. I think 20mcg would be spot on for me.

I also opened the capsules and dissolved in water to see if it's the titanium dioxide, i tried for a couple days but I didn't manage to do it with my morning dose, it's too much of a PITA to do that while I am half asleep.. so I don't really know, but I should try it with all 3 doses to find out.

I might just go back to tiromel for a few days to see if these weird pains & bloating subside, annoying thing is my 2nd script is due to be requested on repeat this week coming and I will get Roma capsules until I speak to gp which is not till middle of Feb!

I have not heard of that brand either.

But I just found these links, interestingly they are available in 5mcg too,

services.nhsbsa.nhs.uk/dmd-...

services.nhsbsa.nhs.uk/dmd-...?

Seems available since November.

Oh, I tried putting the yellow card in last night, it was not bringing up Roma liothyronine in the list at all?

I will try again from the laptop tomorrow.

I totally agree - people need to be reporting these things with medicine for it to go anywhere, if only they made it easier or clearer, like a huge sign in the chemist, so many people have never heard of it.

Thanks so much for sharing your experience, 🤗

I will definitely keep you updated, once I know anything.

I am definitely not well, my heart rate is very slow now aswel, could be unrelated but it's quite scary 🤔

notatortoise profile image
notatortoise in reply to Citrinesun

Maybe you should try contacting GP or pharmacist before your next prescription is issued, just in case they can make a change now.

I had previously a big problem with Teva Levothyroxine, and have noticed that the viatris brand also has mannitol, it’s early days yet to be able to say if it agrees with me.

I think I had to create a new section for Roma on the yellow card scheme for it to register

Good luck.

Citrinesun profile image
Citrinesun in reply to notatortoise

Oh no 😕 I am disappointed to hear this viatris brand contains mannitol - I too can't tolerate Teva levo.my guess is it the replacement for the sigmapharm brand then or it's the same just a new name.

Be interesting to see how you get on?

I won't be able to book in with my GP herself now, I book my appointments a month in advance, I can see she has nothing available.

I guess I could ring up ask for the clinical pharmacist to call me, but I will try avoiding the outer capsule properly for a few days first.

I managed to take it out the capsule this morning and tip it straight in my mouth and wash it down 😂

I had a little medicine measuring cup thing ready by my bed with a straw to stir it up with as I have done it that way with a couple of doses,

but I just had an image of something like breaking bad going through my head 😳 lol. it was easier to just tip it,

I am going to try get a few days of avoiding the actual capsule shell..

Ok I will look at yellow card again 👍

Thank you

helvella profile image
helvellaAdministratorThyroid UK in reply to Citrinesun

No - Viatris is the new name for Mylan and Upjohn - who have merged.

I think the product will be what is supplied in the USA under the Greenstone brand.

dailymed.nlm.nih.gov/dailym...

It is not licensed in the UK so will be a special.

Citrinesun profile image
Citrinesun in reply to helvella

Ah ok I see, I have heard of Mylan via other medicines I don't think I had heard of the other.

Thanks Helvella, that is useful to know. 🙂

notatortoise profile image
notatortoise in reply to helvella

Do you think it’s safe if it’s not UK licensed?

helvella profile image
helvellaAdministratorThyroid UK in reply to notatortoise

Yes - the standards in the USA and EU countries are similar to ours.

If they applied, they'd likely get a licence without changing the product in any way. But the Patient Information Leaflet, etc., would need to be updated with UK details.

notatortoise profile image
notatortoise in reply to helvella

Many thanks. This is very helpful to know.

notatortoise profile image
notatortoise in reply to Citrinesun

Will let you know how it goes. So far feel ok

Citrinesun profile image
Citrinesun in reply to notatortoise

No worries, fingers crossed for you 🤞

flitter-maus profile image
flitter-maus

Been on Roma 5mcg and asked to be changed back to Morningside. Just didn’t feel well on Roma with symptoms of under medication. Back on Morningside and beginning to feel better. Not sure what the problem is for me. Will look at how to report on yellow card scheme.

notatortoise profile image
notatortoise

Good luck. Morningside for me are def more consistent. I still have difficulty obtaining the Morningside brand from my local pharmacy, but it is worth persevering.

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