*Smelly Tirosint gelcaps*
Has anyone else who uses Tirosint (filler free Levothyroxine alternative) gelcaps noticed a bad smell of these pills recently? I’ve started taking them in December 2023, could it be I’m only now noticing this smell, but it was there all along?
The best comparison I can think of is fish food.
Using combo of 13 mcg and 25 mcg gelcaps. They all smell, the pills in all boxes. Exp date early next year. They’re imported from Greece.
Most people here don't have access to Tirosint, so you may not get many, if any replies. Did you obtain them from a trusted source?
RedApple thank you. Yes, I get them via my doctor. I’ve just emailed them, to ask if they could order me 1 box from a different, UK based pharmacy, for comparison.
I haven't noticed a difference. I get mine from a UK pharmacy.
wellness1 RedApple thank you. I’ve just emailed my doctor, to ask if they could order me 1 box from a different, UK based pharmacy, for comparison.
wellness1 I’ve just emailed Ibsa Pharma, the company that makes Tirosint, to ask about the smell. Another member of this group, asidist, replied to this post and said they got her Tirosint in the USA and has also noticed a change in smells. I ordered Tirosint from a UK based pharmacy and the smell is still odd. My batch numbers, from this UK pharmacy, are C05925 and C02383. The batch numbers, from the pharmacy in Greece, are C03570 and C05091.
If you’re willing to share:
1) do you by any chance have the same batch numbers?
2) what dose of Tirosint are you taking (per capsule)
Just trying to get as much info as possible because I’m wondering if something actually is wrong with these pills, since it’s not just me anymore who noticed a change in smell. Maybe it’s only certain doses or certain batches. No idea at present 
An odour update: after reading your and asidist's comments, I wondered if I had anosmia and needed a Covid test. 
So I had another sniff. I definitely wasn't getting a strong smell, but maybe a whiff of asidist's wet dog. To be honest, I had to hold them right up to my nose to notice anything and two other family members said they didn't smell anything, but also hadn't previously smelled my thyroid meds for comparison.
I take 112.5 mcg daily, comprised of 1 x 100 mcg gelcap + 1/2 of a 25 mcg gelcap. It was the divided gelcap that had a more noticeable, but not extreme smell and maybe the act of dividing it released the aroma. The 100 had possibly a a slight smell. You may be more sensitive than I, but it was only by putting them right under my nose that I noticed anything. I usually take mine quickly in the very early hours.
I just started a new box of 100 mcg gelcaps, batch no: 220612. The 25 mcg gelcaps are CO2383. It will be interesting to hear what the company's response is or whether anyone's results are affected. Hopefully it has nothing to do with the levothyroxine content. I've actually been considering trying another brand to see whether I actually need to be taking Tirosint.
asidist
wellness1 Thank you so much for sharing this with me! I've heard back from the general website query - they asked me to write to their international office, which I've just done. I'll keep you posted when I hear back. Hoping to go for a thyroid panel etc this week, so if my results are lower, but with a higher dose, then maybe something is wrong with the dose. But let's see what happens first, it may be better than it was previously. Just with smelly capsules
asidist
Perhaps current results will shed some light on this. I hope you get a satisfactory response from the international office.
wellness1 , PinkCat2023 Just seeing these earlier added comments / the "odour update." I'd also be super interested to hear whether results are affected. I'm considering pushing back my soon-due testing until I've had a good month on normal pills as I increased my T3 slightly around the same time and need to be sure any results are due to that and not any deviance in the Tirosint dosage. I'm due for refills this week so will see how those boxes are and report back. Hopefully back to normal.
Wellness1, if I wasn't cutting the capsules, I wouldn't have noticed the smell either. I do have a pretty strong sense of smell though.
asidist My numbers definitely went up as expected, when I increased my dose. As far as I can tell, the capsules are smelly but effective I hope you can have your levels tested soon and that you'll be able to get the best meds for you.
Helpful to know, thank you! Between the experiences of both you and wellness1 so far, it is seeming that effectiveness isn’t affected at least!
Still haven’t gotten any further info nor the promised replacements rom Ibsa. Pharmacy said I need a new Rx to try the generic to see if they’re any less smelly (guessing not but see no reason to continue with brand vs generic anyway) ; going to try to get that for next month and will let you know. As long as the capsules are safe and effective, we may just have to deal with the very unpleasant odor!
asidist I'm sorry to read you're still waiting for your replacement meds! If nothing else, maybe the generic brand will be less expensive than the Tirosint version.
Please do keep us posted how you get on with the generic brand if you get a chance at some point after trying them for a bit. I hope you can start them soon.
I've switched to Wockhardt pills since last night. My blood pressure has been low for ages but my heart kept racing in the end, resting heart rate of 90 ish. Resting heart rate has come right back down to about 70, like it used to be before I started the smelly pills. It may be a fluke, it may be something else altogether, but felt I should mention it here, if only for other people possibly noticing similar symptoms. I've also switched to 63 mcg per day recently, but there was no difference in resting heart rate until this morning. I also have MCAS so am hypersensitive to a lot of things, so maybe there was something in the Tirosint my body simply did not agree with - and this would not affect other people, who don't react in the same way to it.
I've also started taking 1 Brazil nut per day, to try to optimise my selenium level (Whole Blood Selenium 94.8 (85 - 200) recently), so maybe that is making a difference as well.
I've had various tests for my heart recently (echocardiogram, 48h heart film) and these have all come back ok. Hoping to receive my BNP blood test result today.
Never a dull moment
wellness1
Interesting, PinkCat. Perhaps over time you'll be able to clearly see a consistent difference switching from Tirosint. Great news on the cardiac test results!
Hi PinkCat, once again I apologize but I never did get notice of your reply by email as I should have; just noticing this now as I happened to log in to the site.
Thanks for the update. Sorry to hear about your racing heart, but excellent you were able to nip it in the bud by making those changes.
Were you experiencing the rapid heart rate before the pills went smelly? If you increased your dose to 75 at roughly the same time as things went awry with the pills, I guess it would be nearly impossible to know if the dose increase or the smelly pills themselves were the cause. My understanding (and personal experience) is that uptake can be quite different in gelcaps vs tablets as well, so even switching to an equivalent dose in tablets may effectively result in a dose change. So I guess I’m wondering if it isn’t just a reduced dose that has ultimately resolved the rapid heart rate? And of course theres the added factor of selenium. That’s the thing with real life though - there are so many factors at play in our lives that it’s often hard to draw definitive conclusions about any medication changes we make.
I had a very long and rocky journey with Tirosint, so it’s not as easy for me to switch back to tablets and trial that. In contrast to most people who get on Tirosint, taking the equivalent dose to what I was taking in tablets made me feel MUCH more hypo. I had to raise the dose quite a bit higher to regain the level of energy and functioning I had on tablets (itself subpar), and I seem to be much less sensitive to Tirosint (almost as if I absorb it more poorly!). However, I was able to tolerate notably higher doses of Tirosint, unlike the tablets, and ultimately bring my blood levels up from the bottom of the range - though it took a year of feeling unwell to do it (granted, I went through semi-long covid in that time too, so that may have dragged it out further). So for me, making a switch back to tablets now is scary as i spent so long trying to get here. I can’t say I actually feel much better than I did over a year ago on a lower dose of tablets with lower blood levels of FT4, but I’m still making smaller adjustments to dose now, as well as adjustments to my t3. And there’s Covid and the vax that both had a big impact, so who knows!
For now im still (!) waiting on the replacements and plan to switch to generic next month when my refill is due. Hoping between those and Tirosint possibly just addressing the problem, the smell won’t continue to be yet one more factor to take into account. If we get no answers and there seems to be no way around it in another month I may consider other options such as locally compounded capsules.
Will keep you updated! Hope the remaining test has come back ok and you continue to feel well
Hi wellness as Tirosint is not popular so not many pharma got it, can you let me know what is your Uk pharmacy so I can try to ask them pls ? Im terribly unwell and have to try everything .. pls sort me out Thanks !
Hi, you would need a prescription to obtain Tirosint from a UK pharmacy. Roseway Labs dispenses it, perhaps there are others. Roseway also has a prescribing service and some members have used this. There is info on their website.
From this thread you'll know there is a potential concern about a possible change in formulation, but no information as yet that the efficacy has been affected.
Good luck finding something that works for you.
Thank you so much for quick response I just seen gp & got their prescription just now but we not sure if its on NHS & it may be a sure No but will try asap to contact Roseway london which is very close to my home wow
I've been praying and now Im willing to try anything.. NDT trial will be on soon but have to combine with this first as endo said
Hope you are well all the ways 🙏
YES, oh my gosh thank you for posting this. I was wondering the exact same thing: The ones I’ve gotten in recent boxes stink, and I too wondered if I just hadn’t noticed before. Now knowing I’m not alone in finding it notable and new, I’m thinking something is up with the pills. Will call the company and inquire.
I’m in the US, btw.
asidist it’s odd, right? I’ve received more pills from a UK pharmacy (so a different pharmacy to the original smelly ones) and those also smell like fish food. It’s almost as if they’ve started using fish gelatine. Have you learned anything from your pharmacy or from Tirosint? I’ll contact Tirosint, hope there’s some innocent explanation. PS if you’re willing to share, what dose pills do you take please? I’m combining 13 mcg and 25 mcg, just wondering if it’s a problem for other dose pills as well.
Yes, definitely a bit disturbing. My take on the smell was more wet dirty dog, lol.
Don’t mind sharing at all. I take 13 and 50 mcg, and split one of the 13s that I take each day. The smell is especially notable in the split pill as you can imagine, but both dosages smell rotten, and I’m now on the second box of 13s with the issue. So it crosses dosages and countries
No, unfortunately didn’t have a chance to call before the weekend but going to try on Monday and will let you know what I hear if able to get through. Hopefully we get a transparent answer and nothing harmful as you say
asidist thank you for sharing this with me. It could definitely also be a wet, dirty dog smell
That’s great you’ll try them on Monday, I hope you are able to get through, like you said.
I’ve just emailed Tirosint (well, Ibsa Pharma) via both medinfo@ibsapharma.com and info@ibsapharma.com and have sent them pictures of the boxes with the batch numbers and expiry dates. I’ll comment again on this post, should I hear anything from them.
wellness1 asidist I've just sent back the official form (called Adverse event Report) with my details, description of the issue, batch numbers, doses etc. to a company called Eversana (eversana.com). I guess Ibsa, who manufacture Tirosint, use Eversana for safety concerns.
The report number ended in a number higher than 100, so I wonder if that means they've received over 100 similar complaints to date. Maybe not, but more people may have noticed the dirty dog / dried fish food odor and reached out to them.
I'll let you know when I hear back from them.
Hi Pinkcat, thanks for the updates and sincere apologies for the delay. Curiously, I see that you tagged my name but I never actually got any notice of your comment. Something strange must be going on with the site
Anyhoo, I did quite easily get in touch with the company last week (at the number listed here: tirosintsol.com/contact-us/) but the rep had no information to provide about what was going on and said she could only take report of the complaint. She interacted with me as if she’d never heard of the issue previously, but I wouldnt be surprised if they’re trained to do that.
She was very friendly but said she couldn’t promise me when there might be an answer to my question, though I was welcome to follow up anytime. When I pushed back a bit and expressed my concern about the safety and efficacy of the medication considering the odd rotten smell, she suggested the option of them replacing my (used) boxes by sending my exact prescription to my pharmacy to switch them out for me. Not much help to the many other Tirosint patients and not sure if they’d continue to offer replacements if future lots have the same issue. Hopefully they’ve gotten enough complaints to seriously look into and fix whatever the issue is.
Haven’t heard anything from my pharmacy about replacement boxes yet (wondering if Ibsa will really even send them) but going to check in with my pharmacy & Ibsa in the next couple days to see what’s up and will post here if I learn any additional info!
Btw, they tried to get info about me as well. I provided a nickname initially and she was fine with me declining my number and any additional info, but later I of course had to provide my full name, Rx, and pharmacy/locale for them to get the package to me.
PinkCat2023 Update: Heard back from Ibsa re my follow up. Still no info on the pills, and still no package, and the rep again had no helpful info to pass on (including no confirmation that the replacement pills have even been sent or will be sent, eg no tracking number), beyond that an investigation is being conducted. I'm beginning to rethink putting any weight in anything she has said, or the idea that there is any intention for timely consumer transparency regarding what is going on.
Will look into reporting the smell to an agency with purview over prescription quality here in the US, probably some department in the FDA, and may try out the generic version of Tirosint if the ingredients look ok.
I'm hesitant to even get any bloodwork done as who knows if these pills are even providing the appropriate dose? I do know I haven't felt as well as I had hoped these past couple months, but that is also around the time I got the latest Covid vax which caused all sorts of issues, so I'm not sure what exactly to attribute the overall downward turn to. (Tangential note: Apparently it's acceptable to end sentences with prepositions now 🙃)
I've heard of many symptoms of hypothyroidism but ending sentences with prepositions is a new one and quite worrying.
I hope you get the replacement prescription and are feeling better soon, regardless of the cause. It doesn't help sorting things when there are multiple possible factors.
Btw, it seems to be hit or miss on receiving alerts about comments. Sometimes I get notified and sometimes I don't and I also missed some of PinkCat's comments.
wellness1
Lol, I was being earnest! npr.org/2024/02/27/12336631...
Felt the need to include the footnote since it’s still early days with the now somewhat official change
Thanks for letting me know about the notifications - that’s a shame; hopefully resolved soon. And thank you for the well wishes! I will certainly keep you both updated. Made an official report to the Food and Drug Administration as well, since it has oversight over drug quality here in the US. But it sounds like you haven’t noticed any change in the efficacy of your Tirosint pills over the past few months, nor any digestive issues?
Also, saw that you were thinking of moving away from Tirosint to other options. Not sure if you would have access to it if you’re in the UK, but in the US it looks like Lannet makes a generic version of Tirosint (referred to simply as generic levothyroxine sodium capsules) with the exact same ingredients as the brand name. So perhaps another option if it’s the brand/cost you’re wanting to actually get away from rather than the formula or ingredients!
Yes, there are Lannett levothyroxine capsules.
But they are actually manufactured by IBSA (who make and distribute Tirosint)! Unless it is quite specifically a case of some batches and they all happen to be labelled IBSA (rather than Lannett), it might not help.
Manufactured for Lannett Company by:
IBSA Institut Biochimique SA
6912 Pazzallo
Switzerland
Distributed by:
Lannett Company Inc.,
Philadelphia, PA 19136
USA
dailymed.nlm.nih.gov/dailym...
Oh wow, thanks much for this critical info helvella!
What the heck is the point of the same manufacturer making a generic version of their brand drug with the exact same ingredients? I mean maybe the amount of the ingredients is ever so slightly different in the generic, in order to technically differentiate it from the brand name for official purposes , but seems odd. Eg, not sure why a consumer would pay the manufacturer more for the brand name.
No - I don't think it is even a generic version of the product - it is only marketing/packaging.
Like Almus in the UK.
There seem to be several reasons for this sort of approach - and it is widespread in the USA. For one thing, it allows IBSA to get their product available at a lower price without reducing the price of the IBSA-branded version. If we assume that most patients don't get switched, they are garnering extra sales at the lower price yet having little impact on existing sales.
And remember that we see time and again what looks like an obsession with "brand name" vs "generic" in USA-based posts. And the system in the USA is somewhat different.
helvella thank you for pointing this out! Good to know as I had wondered if I could get a generic version in England.
asidist the only reason I can think of to make a generic version as well as a branded version, is to make more profit. So sell them both or another company will start making the generic version?
Thanks for that link.
I'm not certain how long I've taken the affected gelcaps. I haven't had digestive issues and I don't think I've noticed a change in efficacy. I tested in January so I'm not due to test for awhile. It'll be interesting to see next results for all of us. PinkCat2023 , have you noticed an adverse event, apart from smelling a fish food-eating musty dog?
Thanks for letting us know, wellness. As unpleasant as it is, maybe the smell is normal for whatever new ingredients source Ibsa is using. Wish they would just confirm it one way or the other.
wellness1 Thank you for sharing this with us! My recent labs would indicate that the Tirosint gelcaps are effective, as in: my numbers have gone up since going up from 50 mcg per day to 75 mcg per day. I cannot say if my number would have gone up more, had I been taking a different brand, I simply do not know. I've now gone down to 63 mcg iso 75 mcg per day and my heartburn and diarrhea and also my anxiety and rapid heartbeat have become less bothersome within a few days. My doctor has told me that, even though my numbers are in range, he feels that maybe that range is not right for me and to maybe decrease the dose a bit. I've done this and I do feel better. I hope this helps you. Any questions, please feel free to ping me. Apologies if it takes me a little while to respond, besides trying to sort (other) health issues, we're about to move house and roofers aren't showing up etc, so lots to do there as well. I'm sure it'll all be worth it in the end!
Well, the main objective is to feel better and I'm glad that you are. Good luck with your move. That can be stressful, so I hope you optimise your thyroid treatment and have some good stress management techniques.
Thank you!
Good morning asidist ! Sorry for *my* late reply this time! And lol re ending sentences with a preposition
I’m sorry to read you’ve not been feeling well. I had a massive reaction to my last covid jab but that was late 2021. I had to have it, because I was vulnerable to covid at the time and needed the jab to be allowed to travel, to have a surgery (which means I’m now no longer high risk when it comes to covid). So I’m glad I had it in the end. I have mcas and think that probably played a big role in why I reacted so strongly. I’m not trying to say you also have this, just maybe worth looking into - also because some people who’ve had actual covid, appear to be able to develop stronger histamine / mcas reactions afterwards. I hope you’ll start feeling better soon!
Tirosint / Ibsa Pharmacy do appear to want to know everything about us. Maybe that’s standard practice in the pharmaceutical world but it just doesn’t sit right with me and I feel that they’d try to use any personal info against me, should it come to that stage. Anyway, trying to stay positive
I’ve had a look and have found what appears to be the British equivalent of the FDA. I’ll report to them via this website: gov.uk/report-problem-medic...
I’ll keep you posted on my (hopefully) progress!
Thank you PinkCat, good to hear from you and appreciate the well wishes. I'm actually doing much better than I was the first several weeks post vax (except for the seemingly permanent tinnitus that it left me with - though fortunately mild compared to the torturous ringing I've read some others developed post-vax. ), and what's leftover, there's really know way to know if it's related to the vax at all. Oddly I had no notable reactions to the first two covid shots, but I did get Covid between those and this bivalent shot, so maybe like you said, that contributed to a stronger response this time. Sorry you went through it as well! Are you completely recovered now, and will you continue to get boosters? I'm so ambivalent about boosters now after the tinnitus.
Interesting thoughts about MCAS, thank you. I do have numerous atypical allergy issues (including an allergy to exogenous T3 itself, strangely enough - now resolved, thankfully), but when I've looked into MCAS in the past, I didn't think I matched the presentation. Perhaps worth reexamining, or when I get better insurance, finding a health professional knowledgeable in all things MCAS who can provide a more definitive answer.
Lol yes, Ibsa does seem to revel in collecting personal info. Unfortunately I had to provide even more info about myself in following up with them, so now they likely have a decent profile on me, but like you, I don't like it one bit. Agree that their goal is likely primarily their own liability protection --and I just don't like giving out info about myself to corporations. But yes, hopefully something comes out of all this. Have you noticed any differences to your thyroid symptoms or bloodwork since taking the smelly gelcaps?
Update 14 March 2024: received another message from Eversana, who are linked to Ibsa, the latter who manufacture Tirosint. They wanted to know my medical history, the reason I was taking Tirosint (ehhh... really?), adverse reactions to Tirosint etc. I've told them those details are between me and my doctor. I've also said that, in order for them to start their investigation, they'll need to check the contents of the product they manufacture. For this purpose, my medical details, or why I even take Tirosint, are entirely irrelevant. Don't know if this is standard practice but it looks like they're trying to cover themselves in case of a potential claim. I'll post updates in this thread.
Curious response... you would think they'd be more interested in getting a sample of them back from you?
TiggerMe for sure. They’ve asked all sorts of questions but I’m trying to focus on the smelly meds they’ve produced. asidist mentioned reporting the issue to the FDA. I’ll report it to the British equivalent here: gov.uk/report-problem-medic...
That seems odd. Well done pointing out that your medical history is irrelevant and confidential. I hope you get an answer to the question you've put to them.
wellness1 thank you!
asidist wellness1 Update 25 March 2024: I've finally submitted the yellow card scheme reporting to the MHRA in the UK. I'll let you know if there are any updates there. I've offered to give them a capsule, if they want to test it. Still no news from IBSA - have either of you heard anything more from them, besides their intrusive "tell us everything about yourself" messages? 
Hi Pinkcat, not sure if you saw my previous message (this thread has gotten a bit unwieldy 😅) but new update: I finally received the replacement boxes from IBSA. The replacement boxes they sent me have the same lot numbers I had reported as problematic and turned in to them. Worth the wait! 🙄
Plan to move on to generic as soon as I get an apptmt with my Endo so I can request that change, likely in a few weeks time.
Hope all's continued well for you
I can't believe they sent you more of the same, presumably also tinged with the fragrance of wet dog. Did you ever re-test on this batch or notice more symptoms? I hope your transition to generic goes smoothly.
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