I don't like to complain here or anywhere really, and try to keep my head down, as I am one of few who have managed to keep my T3 monotherapy going for around 11 years now, and fought off attempts to stop it, and even managed to hold on to it moving house. Just a few weeks ago my new GP summoned me for an appointment due to 'abnormal results' from my TFT (for this read low TSH no doubt). I sent her a 2 page A4 letter complete with reasons and evidence of why she should not worry on my account, and all has gone quiet again for now.......
Well this question is really about the fact that since I moved here, over a year ago, I have been prescribed 4 different brands of T3 (20mcg per tab as I am on 50 mcg per day), and some seem to work well and some seem to make me ill and how I can deal with this. In my previous place, Cornwall, I had Mercury Pharma specified on prescription, because Teva came instead one day, and made me ill. I managed to then get it marked on current prescription as NOT Teva and had no problem getting it regularly from Boots in Cornwall.
They managed to get me Mercury Pharma for a while here, but then couldn't (I wonder if they were looking for Mercury Pharma on the formulary, when it's actually on there under Advanz now). Then they got me Morningside for a while, and I believe that I was better on this than MP, but now they cannot get Morningside. So they have now sent me Viatris and since starting it just over a week ago my health has crashed badly, but I am doubting that it is the Viatris as I feel I should not jump to conclusions. Since being on it my symptoms have changed - fatigue and brain fog for 2 days, followed by fatigue, muscle pain, headaches, knee pain, Plantar Fasciitis flare up, now that's all gone, and I have a familiar symptom of a sinus soreness and fatigue. I have felt so unwell on Viatris, that I have also been trying adding in an extra 5 mcg.
I decided to try and be scientific as I have a small stash of each of these brands in my drawer!! I am trying each one for 2 weeks and taking BP and pulse and temp to see if any difference there - nothing significant so far on 2 brands tried. Then I will change and see if I get worse or better for the next 2 weeks (I would expect the difficult symptoms to calm down on the MP and especially the Morningside if this is an objective problem). I had Covid in Sept and was unwell for weeks afterwards, but I don't think it is that as I had improved a lot, though not as well as I was. It could be that I am going down with a cold, or it could be the change of seasons.
I just dread having to go through this all with the pharmaceutical team at the GP (they were actually OK when I got No Teva put on the prescription), but especially the pharmacists at Boots, who are behind the scenes, and hard to access. I am doing this method above so I can give myself more confidence that my health really does change on this Sigma Viatris, for the worse. I have just managed to find on a local map, an independent pharmacy, so that may be a possible route to get better treatment if Boots fail me here.
I did see that one other person on here a while back had tried Sigma Viatris and they too were putting it on a par with Teva T3. Is there anyone else who has tried the Viatris and had any problems please?
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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.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Thank you helvella What an impressive blog with documents! I had to stop myself this morning from going down the interesting historical stuff as I really wanted to get to grips with if, or why I might have a problem with some T3 tabs and not others. I have to congratulate you on all the work putting that together.
For me there seems to be no logical explanation really to what I perceive to be possible side effects. After all, Teva T3 does not seem to have anything added to it which would cause an issue, (and I believe it is supposed to be good for that reason), and yet numerous people on here have indicated problems with it over the years. Incidentally, I did put in a Yellow Card for it some years back when I lived in Cornwall before moving last year. The makers are allowed to investigate themselves, and they found nothing amiss (I sent them tablets). When I moved here, I was given Teva again, and had similar issues the longer I stayed on it.
Sigmapharm Viatris does have Mannitol which others don't have but I expect it's in a tiny amount. Googling it indicates that Mannitol can cause stomach issues (larger amounts I am guessing), and though I have had multiple symptoms since starting Viatris, gastric wise, mercifully, I am fine!
The symptoms I had yesterday (they seem to change by the day), have now subsided, and as I had some gluten on Sunday (intentional but not wise as I have not taken gluten in years, though am not coeliac as far as I know), so yesterday's symptoms might have been due to that.
I will keep taking Viatris for a further week I think, before switching back to one of the other brands and see if there is anything significant I can detect. My so-called objective testing is likely to be at least in part subjective!!
I think we all look at the list of excipients and wonder which ones are causing the problems.
Trouble is, unless it is something obvious like a specific substance we've often had issues with, it is difficult to be sure of anything. For example, the sources of them might be significant. Or something about the manufacturing process results in a different profile of compounds either in the product, or produced when it goes through our digestive systems.
It's worth trying. But we could really do with large-scale investigations. So that when individuals who are affected have been identified, further work can be done to find out why.
Thank you helvella I guess it's an area which shows how different we all can be in our bodies to the way we react to things. I guess the manufacturers will only do investigations, if there is a significant body of people reporting them, and if that body of people causes enough bad publicity to make it worth investing in them.
Interestingly, as I just mentioned to Kipper62, I have a very sensitive gut, diagnosed with IBS and Functional Dyspepsia, over my 71 years (though I suspect my Hiatus Hernia is more the culprit for the FD issues), and currently I have my digestion in a calm state due to management of it over many years. The one symptom that I have NOT had with the Viatris is gastric though, so I find that a bit of a puzzle for sure.
I have looked at Helvella's summary matrix on the T3/Liothyronine meds and what they contain, and Mannitol is not in the Teva T3. However it IS in the Teva T4/Thyroxine.
Apologies my mistake, Helvella and Agapanthus, no mannitol in Teva's T3. I had it my head that it was mannitol that was the problem with Teva's T3, which my wife absolutely cannot tolerate. She also has serious problems with other Teva products, especially their apixaban (which apparently does not contain mannitol).
Interesting to see that the Teva T3 ingredients in the UK are different than in the US: corn starch (pregelatinized), edetate disodium, magnesium stearate, and microcrystalline cellulose. In the UK you luckily don’t have to deal with the formaldehyde-containing preservative as we do! (Not that I take Teva personally —at least not currently).
Wonder if the ingredients of other thyroid hormone brands vary by where they’re sold as well!
Always so frustrating to confront the fact that there are no (easy and widely accessible) options for thyroid patients to get the replacement hormones we need without having them tied up in so many other substances that have potential to cause problems. Personally find even liquid/gel (T4) formulas come with their own issues.
I'm in the middle of some major updates to my medicines documents, but you can find several such differences. For example, Accord levothyroxine in the USA versus the UK.
If price and availability weren't issues, I think I might choose Tirosint SOL. Though it's always possible that they get absorbed too quickly, too well! That is, the rise of T4 levels might be so fast it causes issues. (Obviously, could change to split dosing to reduce this.)
Most USA levothyroxine is coloured - no UK products are.
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.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Corporations have an outsized influence in the US and we do allow thousands of questionable ingredients here (including some colorings) which, for good reason, are not permitted in the UK. I suppose it may be a cost savings for some manufacturers to produce a separate formula with cheaper, lower quality ingredients for the US rather than keep all formulas consistent :/
Would NHS only cover the cost of Tirosint for a patient if it was determined to be medically necessary due to tablet intolerance?
In my experience the SOL form was SO sickeningly sweet that it was a bit nauseating to have to get down, so I switched to the capsules. You may be right that Tirosint hits more quickly, and I do find a split dose to be best. For me, though, a dose knocks me out very soon after ingesting it so I take at bedtime, but Im also on a 50% higher dose relative to my tablet dose, yet continue to feel more fatigued than I already did on tablets. Could be completely unrelated to the glycerin/glycerol but do wonder if sugars too can cause issues in some people. Via breath testing I was found to be intolerant of fructose and have a poor reaction to glucose; maybe glycerin/glycerol has the potential to be similarly problematic for some and thus impact absorption/uptake of thyroid hormone? (Wonder the same regarding the outer gelatin, in the case of the capsules.)
( didn’t sleep last night so it’s an effort to form proper sentences today, apologies if not making sense)
Anyone would find it hard to get any form of Tirosint in the UK.
Technically, yes, the NHS could supply but it would likely lead to a series of arguments when new prescriptions are needed.
I am convinced glycerol is a problem for quite a number.
I don't think there is a cheaper for USA issue. For example, with Accord, it is that the USA got the product from international Accord, whereas the UK continued getting the same product as had been supplied under various names for many, many years before Accord (Intas) took them over. Pretty much just an accident of history.
Ah sorry helvella my brain is all clogged up today - could you pls point me to where in your document I could find the name and ingredients of the liquid formulas available in the UK? Are those also dissolved with a sugar alcohol?
And could I please pick your brain as to why you’re convinced that glycerol could be a problem?? Or if easier if you wouldn’t mind just pointing me to where you’ve read about it, that would be fantastic. 🙏 Have often wondered about it and am not sure why Ive never previously thought to actually look into it - maybe just never considered I’d find anything definitive enough to act on.
Thanks for clarifying re Accord. The US has often gets the less safe (which to me = poorer quality) version of manufactured goods so was thinking that likely played out in medication excipients as well - with a company’s bottom line being the typical driving factor. (In related good news, California recently approved a ban of several ingredients— incl brominated vegetable oil! — that the rest of the country will indirectly benefit from, since manufacturers won’t want to make separate CA-specific goods. Better late than never. )
[ ApplogiesAgapanthus , didn’t mean to hijack your thread]
In. my UK document, there are links from each product to its Patient Information Leaflet which always contains a list of ingredients.
I chose not to include full lists of ingredients because that adds to the size of the document and the maintenance overhead. If you care enough, I reasoned, you can look at the PIL documents!
However, there are matrixes - charts - showing the most commonly questioned ingredients for each type of product.
I think all current UK oral solutions contain glycerol. (One did use maltitol liquid and propylene glycol but that is no longer available.)
There are many papers which point out the safety of glycerol. It is clearly not directly toxic. At the same time, there are many papers which identify effects of glycerol on the microbiome (skin as well as digestive system) and resulting chemical changes.
Sorry for the delayed reply. Including links to the PILs w/ingredients makes a lot more sense- thank you for your work in putting together the amazing collection of info that this document is, and for your thoughts about all this.
Interesting that oral solutions/capsules likely all use glycerol (haven’t had a chance yet to review leaflet for each brand). Although it’s taken me a long, life-depleting year to get to a decent place with Tirosint I may cut my losses with it and, as a last (and much more expensive, out of pocket) resort, try compounded Levothyroxine instead, with literally only 2 ingredients plus the clear capsule. Or just stick with a low dose of tablet formulation (seems to be all I can tolerate) and the resulting below range FT4 —and hopefully be able to rely more heavily on t3 dosage for symptom improvement.
I get you completely. I too have major problems with certain brands. I had it with all brands of tablet form thyroxine, some much worse than others. Now on t3 only and found I cannot take Mercury pharma ( no surprise this was the worse thyroxine brand) and I'm doing fantastic on Morningside. Even having printed on all my scripts "Morningside only brand due to severe reactions to other brands" no local chemist can or are willing to obtain it. My local who I've used nearly 25 years says he isn't able to specify to wholesaler what make he wants.So after asking on here and and admin and few others suggested getting in touch with the list of pharmacies that Thyroid uk suggest on the website. Most emailed back saying couldn't but Springfield pharmacy said they could.
Fingers crossed I have a 3 months supply of Morningside being delivered 🤞. Will let you know tomorrow if I actually get Morningside but with all the emails and photo of script before sending they know can't take anything else.
Hello sparkly and thank you for replying. I was very interested in your own issues re Morningside in particular as earlier this year I began to explore ways of getting hold of it. I did ring them up, and they said that I should have no problem in getting it from a Lloyd's chemist, but we don't have many of those here. I did find one, and spoke to the pharmacist on the phone and he also said he couldn't get it, but I was going to go there in person and he was going to try to help me. At that point, Boots got me Advanz/Mercury Pharma T3 again for a short time, and I luckily do OK on that (though not as good as Morningside).
Please do come back on here and let me know if Springfield pharmacy come up with the Liothyronine for you! My GP surgery now will not supply a hard copy prescription but will only send it electronically, but I guess that it can still be sent to Springfield if that was the only place that it could be obtained from.
I am crossing my fingers for you re the Morningside T3. It's worrying though that it's hard to obtain now, as I fear that it might get taken off the market if it's not easily obtainable.
I'm literally sat here waiting for the postman as I write 🤞I have had help from my surgery pharmacist. She as authorised me to put my prescription in early to try source Morningside, given me a 3 prescription instead of 1 month. She spoke with the chemist adjoined to my surgery to try help my situation, she sorted my scripts stating Morningside brand only due to severe reactions to other brands..all this and chemist still can't guarantee Morningside.
I wish there was a pharmacist on the forum who could explain why pharmacist can't state what make of medication they need knowing patient can only take that make due to reactions
That is brilliant news sparkly ! I am so pleased for you. I must say that the pharmacist here was helpful in getting NO Teva written on my prescription. However, the issue does seem that the suppliers to these chemists have all the power, and if they cannot source it then 'hard luck'.
That said, in order to get 'No Teva' now, they must be specifically ordering a brand of T3 for me, as I am guessing that I am almost the only person locally who has it (given that the Endo locally will not give it to any thyroid patient).
If my chemist has 2 boxes of Morningside in but I need 4 he cannot give me the 2 and a credit for 2 unless I accept whatever make comes in his next order. So if Mercury pharma comes in I would have to accept them then throw straight in the bin.I have to get script changed to 2 boxes and then get another script made for 2 more. Can you see how complicated it gets and how surgery are fed up with me keep going in asking for changes to script, hence why surgery pharmacist stepped in to help.
sparkly oh yes, what you are saying now rings a bell with me re the one pharmacist who was offering to help me. He said something about chucking away a box if they sent the wrong thing (as I have done effectively when they agreed to put NO TEVA on my prescription.) It's utter madness as you say, and I am so pleased for you that the pharmacist at your practice was so helpful.
I don't quite understand how Springfield pharmacy are getting around this problem? Perhaps in the same way as my Boots branch are doing? Are they also ordering and saying NO TEVA to their supplier and hoping that they send them the right thing for me? If they send Teva then it goes in the bin?
Viatris is sigmapharm and I was given this a month ago after being on Teva for as long as I can remember with no issues. Currently signed off work with anxiety, brain fog, can’t get my words out correctly, needing to urinate 19 times an hour, bloating, flatulence and gained half a stone in that time without my diet changing in any way? so did research a few days ago, stopped taking them and can possibly put it down to the ingredients in the Viatris brand. Just awaiting new prescription for different brand. Really glad I read your comments 👍
Kipper62 good heavens, those are very difficult and severe symptoms to deal with. I see that Viatris has Mannitol in it (only T3 brand I believe), and maybe you are very sensitive to that as googling that issue shows that it can produce gut problems. I didn't get gut symptoms at all, and I have a very sensitive gut, but I am plodding on with Viatris for now, as my symptoms are changing daily, and I want to be sure it's not just something else causing them.
I hope you get your new prescription quickly, and that soon all will be back to normal for you.
Just to update, a few days on from my post.....the symptoms I had much of last week and at the weekend seem to have subsided. I now think that I had overdone it, and my body was objecting. I didn't do a lot really, but over the summer I got excited that I could do more, and the season has changed, and I have had Covid in September, and so I guess my tolerance has reduced again, sadly. It could still have been the Viatris too, in that it was new, and my body wasn't accommodating it very well.
I do seem to be hypersensitive to all kinds of things, and pushing myself a little tends to make it worse. I recently stayed in a newly decorated guest room, (actually brand new with new furnishings) and had similar symptoms - no doubt caused by the stress in travelling there, and the off gassing of the toxic substances in my room, as it all disappeared when I got home.
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