I've just wrote a long bit of information and lost it somehow! Drat! So here goes again.
It would appear (highly likely) that all the sporadic symptoms I've experienced since last year were in fact long covid. Symptoms came from nowhere, stayed for a week or so then went, only to be replaced by something else. Very worrying and frightening as I thought they were linked to my heart or thyroid.
I requested a referral to a long covid clinic and have had my first appointment. Apparently the virus can exacerbate underlying conditions. Many and if not all that I reported are apparently typical of a post viral condition. Covid or not.
The most important thing about my post tonight is about the very frequent palpitations I had throughout the past 12 months. THEY HAVE GONE!
That is - so far so good. I requested Mercury Pharma instead of TEVA in my prescription in December, prescription was renewed Early January and since then I haven't had one palpitation. I assume that it took about 6 weeks to get the mannitol out of my system. I had been taking it for 12 months previously.
Thank you Thyroid UK for the information!
I've been having palpitations on and off for 10 years! About once a month at first then sometimes once a week. I'd always put these down to my TSH readings as they appeared to be worse when my TSH was below 1.5. Now I wonder if they were caused by TEVA and were haphazard because each time my dose was changed I received a different brand.
I can't prove it as I don't know how far back pharmacist's records go. Also, when I'm tired or walked up hill I have had a very very slight sensation at the base of my throat, which goes after a couple of seconds.
I feel so much better all around despite the tiredness - now I feel that I can make some progress regarding post covid syndrome.
Of course, I'll wait a bit longer before informing my GP. It's interesting that GP's don't appear to have this information.
Anyway, good luck to everyone.
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Dillongirl
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Interesting... i had rather less specific issues that since i started paying attention to brand i suspect could be Teva related, still not something i could 'prove' but it seemed a good idea anyway to take control of the variables and refuse to have it anymore.
Seems stupid to me that it's not juts seen as 'good practice' to keep the brand the same.
My health went down hill at the same time as moving to surgery /chemist that gave different brands each time.
Were the long covid clinic showing any signs of being interested in T3 levels ?
Yes, its very difficult to prove. I've reflected over the past 10 or 12 years trying to remember the shape of the box. To me it can't be such a co-incidence that since I've taken Mercury Pharma for the past two prescriptions I feel so much better and . . . no palpitations!! At different times these episodes, as I used to call them, made me dizzy to the point I felt I would faint - indeed a couple of times I did.
I agree - to me good practice would be that all brands are available so that patients don't have to stand ground and search for a pharmacist that happens to have it.
My face to face appointment is at the end of March - my first one was via telephone with an occupational therapist. She used that time to find out why I thought I'd had covid. She took information about my general health too but didn't go into fine details. It was interesting though that she confirmed even the nitty picky things I've experienced are typical of post viral side effects - covid or not. 🙂
I've been having palpitations on and off for 10 years!
It seems unlikely to be due to Teva if it has been over that long a time.
Teva bought APS in 1996 and continued with the same levothyroxine product inherited from APS.
Teva levothyroxine was withdrawn in 2012 for subpotency.
"New formulation" Teva launched in 2016 - entirely different formulation.
For around four years of the ten years, Teva was not available! And the product currently available is entirely different to the old formulation from APS.
Of course, issues in the past four/five years could be due to Teva.
Technically, true. But there were already supply issues with their 50 microgram dosage and neither 50 nor 100 microgram dosages ever returned to market in that formulation.
Thank you , that is valuable information. I'll note it. The palpitations/episodes happened infrequently at first then more often. In 2015 a 7 day cuff revealed I had both tachycardia, bradycardia, missed beats and irregular beats - a real mess but apparently quite common!
So I had a pace maker fitted in 2016. But sometimes I felt unwell, so much so I asked that the pacemaker be checked out - was it working? Since late 2017 I discovered (by accident) that my ferritin levels were low, started taking Easy Iron, and Methly B within two weeks I felt so much better, could walk quicker and breathe more easily. Many symptoms dropped away.Sorry so much information.
Apparently, it is possible to find out when and which medicines you've been prescribed from the 'spine' but apparently, the brand isn't recorded. So your information is useful.
For now it is remarkable that I haven't had any palpitations since 2nd January. I say palpitations but it's more like a pulsing at the base of my throat and under my sternum. It could have been exacerbated last year by long covid - for now I don't want to take TEVA anymore unless I'm part of a research programme.
I have just begun to understand how important staying on the same brand of Levothyroxine is. I thought all Thyroxine was the same. It wasn't until I saw someone on a thyroid FB page listing the same symptoms that I have been plagued with for the last six months that I realised I was taking the same brand of medication the poster was on and that I had been switched six months ago which coincided with these increasing symptoms. Luckily I had some of my old medication of 50mcg and 25mcg and I started taking them immediately and within a week most of these odd symptoms had just about gone or were certainly improving. I read this from US that says patients should stay on same brand once settled and if changed they need a blood test after a few weeks. Not guidance in EU/UK though.
Makes interesting reading . It mentions Teva which I was on and its ingredient mannitol that also caused problems in France and was removed from medication there.
academic.oup.com/jcem/artic...Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Yes Teva is the one that upsets more than all other brands
Thank you again for the reminder. I will follow this through with my GP. The problem appears to be that pharmacists are reliant on what their buying department can get in at good prices.
I understand it from a business point of view but not a health one.Even the pharmacist that managed to get it for me last time have said this, so I shall be careful to put in repeat prescription 5 or more days in advance - even 10 days.
Yep, if its been banned in one country then surely this confirms that it is a problem - I just feel so much better - not 100% (long covid) but now have hope and got my umph back
Teva with the new mannitol formulation was not banned in France, as such, but the manufacturer was asked to bring back the old formulation containing lactose due to public demand. It is suggested that the new formulation was more effective and contained the active ingredient at the top of the range, possibly causing adverse hyper-like symptoms. Mannitol is actually a common excipient in many medications, and is generally well-tolerated unless patients are sensitive to it.
Yes, my mistake, as so much emphasis on the toxicity of Teva. However, the principle remains the same, that neither mannitol, nor any product including it, has been banned in France, for medical reasons. The possible reasons for the intolerance to the reformulated levo seem perfectly possible, and the widespread intolerance, although real in some cases, can well be attributed to mass publicity and the resulting nocebo effect which I believe has happened here in the UK regarding Teva. People are refusing Teva for no good reason, and the reputation of Teva, probably the largest manufacturer of generic drugs in the UK, is being damaged for no good reason. We currently have two medications in our home which contain mannitol, neither of which is manufactured by Teva, and which do not accumulate the vast number of negative reports that Teva levo does.
Have to say, when Teva levothyroxine first came out, I was lucky enough to get a pack of their 12.5 microgram tablets - and was delighted. This was to add to my 100 micrograms of Actavis (at the time - now Accord).
My stomach felt uncomfortable every time I took one. Stopped after a few days and it resolved.
I have tried quite a few makes and none of the others has ever done that.
At the time, I more or less ignored it as it was such a small portion of my dose.
That's interesting too. I didn't know that there was a 12.5 mg tablet. Heard a programme a few years ago when a patient said he wished that size was made. Annoyingly, I like the packaging of TEVA - so compact, clearly marked and a different colour foil on the back of each size. This was convenient when I went on holiday as I never took the whole box but cut off the amount I needed - so the different colours meant I wouldn't get them mixed up (when I had to take 125 daily) Mercury Pharma 100 and 25's are almost the same size it seems so was afraid of taking too much or too little. Had to put them in separate envelopes.
I'm still concerned that an artificial sugar like mannitol and which is NOT tolerated by everyone is being used. I really believe that the intolerance is accumulative - hence taking about 6 or 7 weeks to get out of my system. I still haven't had those 'palpitations' - However, a couple of evenings I have experienced a very slight pulse very briefly at the base of my throat. Assuming its due to tiredness - but it passes. I wonder has anyone else experienced this and is it something to do with the thyroid? I'm not worried so far. Will keep a note of it.
I acknowledge that we are all different with different chemistry etc. The poll of 12 months ago showed people's comments reporting many symptoms that I too had experienced and I only joined Thyroid UK last November. I'd never heard of mannitol, never spoken to anyone about thyroid medicine, so it wasn't auto-suggestion.
I've been told in the past that we (all) are often allergic to something or other; when healthy and well our bodies cope with it. If under stress or unwell with something else then we can't deal with the allergen.
I'd had these symptoms on and off over the years but 2020 I had them almost constantly and found them debilitating. Its now been confirmed that I'm probably dealing with post viral infection (long covid) - maybe exacerbated by an intolerance to mannitol. I still get tired but now feel more stable, stronger and feel that I'm on the mend. Since beginning of January I have not had one palpitation or any of the other symptoms either.
Perhaps good practice would be to test patients regarding mannitol before prescribing any medicine containing it .
So sorry that you are having to deal with possible long-Covid. Hopefully you will see an improvement soon. Regarding testing for allergens before prescribing meds, this would be an extremely time-consuming thing to do, even if there were such a test. However, this would effectively mean that everyone would have to be tested for intolerance to every excipient used in every available medication, which would obviously not be possible. You are right in that our bodies change over time, as I am certainly now unable to tolerate foods that I could eat quite happily years ago. Cherry tomatoes and carrots are a no-no for me now, among other things. Chips, sometimes, too, unfortunately! The issue with Teva can also be that it contains acacia, (like Mercury levo), which can affect some people, particularly those who suffer from hayfever. If you are sensitive to both these excipients, then that is a double whammy which will almost certainly have an effect. You may already know that mannitol affects you if you have problems with cauliflower, sweet potato, watermelon, butternut squash and button mushrooms, as they all contain high levels of mannitol, and it is found in other fruits and veggies too. Synthetic mannitol is produced from corn fructose, which can be a problem for me, although the small amount of mannitol in medications has not bothered me so far. Hopefully things will settle for you soon, with improved health on the horizon.
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