As always, I hope my post finds you as well as can be in your thyroid health journeys. As I am learning, it is incredibly tough to navigate.
Today I just wished to ask about sensitivities towards certain brands of Levothyroxine which symptoms gave rise for your suspicion? Eg. Rash? Swelling? Or, was there anything else that gave rise to your suspicion?
It’s too early in my journey to conclude if I am sensitive to the brand I am using, but as I have experienced negative effects with other medication sometimes based on specific brands, it is a wee bit of a concern.
Best,
HSD
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On a side note, I am so relieved to see my post posted with success as a recent restriction took away my access! Wooooo!
Edited: The restriction was as a result of some algorithm at Health Unlocked deciding that I was spamming. HU have since apologised. I am sure without Admin’s help it would not have got sorted as reasonably quickly as it did. Phew!
Do people still eat spam? I haven’t seen to available in shops for a long time 🤔
May I ask how you reached the conclusion the bloating and nausea was from the brands? Also, did you experience the symptoms immediately or after continuous dosing.
Something I have been wondering is if sensitivities become more obvious as we increase dose.
Hmmm... it was a few years back and all tied in with removing dairy from my diet which made me feel 70% better in the gurgle department and then someone pointed out that the tablets contain lactose and things have been much better since!
It hadn't occurred to me that they would put something like that in the tablets 🤦
Thank you for sharing. I am currently diary free but I am not sure it’s made a difference to my symptoms yet to know if I need to be diary free. I have had intolerances before and often removing the offending food from my diet for a few months seems to resolve it. Since being diary free, I have noticed that if I have a dairy rich food I will bloat almost immediately.
Mannitol hasn't been a spectacular success (witness Teva levothyroxine and the Merck issues in France and elsewhere).
Corn/maize products some find intolerable.
At least we now have the choice of lactose or mannitol or "microcrystalline cellulose, maize starch, heavy magnesium oxide, sodium starch glycolate type A" as in Vencamil.
["Choice" obviously depending on your prescriber and dispenser.]
I am curious if sensitivities are dose dependent. It would seem logical that on high enough dose you may be more likely to experience sensitivities. Thus, potentially by taking a slow approach to optimising we may give our bodies a chance to adapt. I have found this with food intolerances for example. But, even if that holds true, how long do we suffer the sensitivities before deciding it’s best to switch?.
I agree that dose matters. But that could work both ways - either slowly getting used to something, or slowly building up worse reactions against something.
And there is also the possibility that some issues are due to impurities and breakdown products in tablets. Which might be present in incredibly tiny amounts. I mean, if you start with 100 micrograms of the active ingredient, levothyroxine, that will only have at most a tiny amount of impurities to start with, and a tiny amount of breakdown products at expiry - a few micrograms or less.
Choice of excipients might well affect the levels of these substances by reacting with them or influencing chemical processes.
“either slowly getting used to something, or slowly building up worse reactions against something”
I agree with this entirely, and it holds true in my experiences. And, there are indeed endless possibilities with regards to the many other chemical processes that may be going on. Eg. One of the things I’ve wondered about in recent times (which requires serious study for sure) is if the current status/health of the whole of digestive tract and other organs involved play a role in sensitivities.
That’s not to even mention issues in manufacturing or storage that may affect potency, or other issues from withdrawing a drug which may make the body sensitive to whole host of other chemicals.
The liquids have far more total quantity of excipients (even if you excluded, say, water). And all the bottled ones have some preservatives which are not needed in tablets. And some find glycerol in that sort of quantity is beyond what they can tolerate. And if you include Tirosint, there are the capsules - and we've seen several member unable to cope with standard gelatin capsules.
They might often have a smaller number of excipients. But the fewer excipients you have, the more you have of each one - assuming same size tablet/dose quantity.
Smaller tablets mean the levothyroxine is more concentrated.
That could mean the impact that it has on our stomach and intestine is greater. Especially if it gets stuck and doesn't disperse very well.
(All theoretical as we have next to no good science to base these things on. I'm just adding alternative views so we have gone through lots of possibilities.)
Funnily enough, there is a USA product currently being developed/tested, expressly intended for children, which is soluble/dispersible.
I think we might hear more of that if the testing has good results.
The oral solutions are clearly problematic - far too many issues with manufacture/distribution, far too expensive, deliver far too much glycerol and other excipients to the patient, awkward to measure out doses accurately, not good for travel, etc.
Not exactly. Liquid forms of any medication/hormone are almost always better absorbed than solids, easier to take for those that have swallowing difficulties, and simpler to dose with when the dose is not an easy round number. That latter two being their primary purpose.
Now, because it is better absorbed the likelihood is that any “nasties” (which are entirely variable on an individual basis) that someone has a bad affect on would be worse on a liquid form.
This is all theoretical. The fact is we do not know as much as we’d like when it comes to pharmaceuticals and variables between individual reactions. As well as within each individual.
For example, it’s also perfectly possible that a person may react badly to one form of medication over another but not at another point in their lives. Sometimes manufacturers change ingredients which would explain the difference, but more often than not the ingredients will be the same, at least so they tell us.
The point is even when it comes to possible excipients resulting in a negative reaction for someone, this too is infact theoretical. At this junction in our scientific knowledge, there simply is not enough study to conclusively say why someone does better on medication/hormone over another.
All of the above makes me wonder if the condition of our gut and related organs are the actual culprits. Who knows?! But I would love for someone to find out.
I looked at the prices of the liquid forms vs the pill ones...NHS not keen to prescribe and I can totally see why. Crazy difference (as there is, indeed, between some of the pill sizes even). I like to have Mercury Pharma as it contains no mannitol.
Is that right? I asked the pharmacist that question and they told me they'd looked it up and it was only Mercury Pharma. Maybe they didn't bother! Well, that's good to know. I've been panicking that MP would go out of business/stop making thyroid drugs after the big fine scandal and I'd be up the chute. Thank you
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.
Hilarious! Makes so much more sense now as to why I have not seen it mind, as I hardly ever shop there. Honestly, I kid not when I share that I thought spam was out of vogue this supermarkets for a long time.
I had issues with Wockhardt. It caused me to bloat considerably like I looked almost pregnant and have much noise and churning in my stomach. Excessive wind to the point that I couldn't control it (sorry if too much information! 🥴) so I had to stop taking it and look for an alternative.
May I ask if the symptom was apparent immediately after your dose or continuous doses? And, I had a non thyroid medication that resulted in the same bloating. It was horrible. So, definitely not too much information.
It’s interesting as many people seem to get on well with Wockhardt.
I started very slowly on a tiny microdose of Wockhardt as I couldn't get a lactose free brand. The pharmacist was really helpful and said she had another person that was able to tolerate it so thought I'd see how I got on.
I did ok at first, it was tolerable but after a few days and increasing the dose my symptoms got worse so I'd say it was after continuous micro doses.
I beleive it was the lactose as I've been dairy free for many years. I was also having scary chest pains when I tried to increase my dose a bit faster. I think that was my body not tolerating the levo itself as I'd been very low in thyroid hormones for many years.
Once I changed brand I continued micro dosing and built up very slowly which has been successful for me. It's taken a year to get to 62.5mcg of levo. I also split my dose as I seem to be very sensitive to hormones.
The start was a bit scary but once I worked out what the problem was it's been better. A very gradual process of increasing hormone dose slowly has worked well for me though I realise that it is often not recommended to do that but you have to find what works for you.
I take Accord as a named brand. I didn't get on with Mercury, it made me itchy. Fortunately I didnt need to sample Teva or Wockhardt or any of the lactose free brands.
Thank you for sharing. May I ask how you discerned it was the Mercury that made you itch?
I am experiencing itchiness, but as I have pre-existing eczema I am not sure if it’s just hypothyroidism symptoms getting worse as I optimise dose or the brand.
It happened pretty quickly, I had no rash, just felt very prickly and itchy. As it was the only changecI had made it seemed pretty likely. After I went on Accord the itching stopped.
I experienced headaches with Eltroxin and can only assume it was due to the acacia excipient. I changed to Euthyrox,which has really bad reviews. It doesn’t cause any headaches, so I will stay with it. I’m just six months into my journey since diagnosis and it’s like being on a seesaw.. A two steps forward then one step back kind of thing, I still have joint pain and excess weight and I don’t really know what is due to being hypothyroid and what is caused by the medication. For sure, it takes time and patience. Good luck with everything
Yes. It is extremely challenging and not helped by the fact that certain brands may be the issue. It’s a tricky, yet we are here no this forum with a wealth of knowledge and understanding so I have hope for both of us that we’ll get there.
🤗 hugs 🤗 I sense you need these today. Like I do many times!
You are most welcome. It’s a what we all are here for on this forum although sometimes so unwell and fighting our own battles to notice 🙂
I find not constantly thinking about symptoms and the horrendous journey helps. But I know that’s not easy. Giving space to even the smallest thing that’s enjoyable is good for me right now. I highly recommend binge watching The Sewing Bee on BBC.
I had severe tongue swelling on any brand of thyroxine, tried every brand going. 14 months later and feeling like I was being poisoned and so ill. Final straw was talk of me having an epi pen as worried throat would close up as getting sensation of pins constantly prickling my tongue. Liquid didn't help so T3 only it was.
Yes, 8 years on t3 only. It isn't a simple ride and always last resort when everything else has been tried and failed.Once you find a brand that gives you no issues then ask gp to write on script that brand only.
I have written on my t3 script Morningside only brand as Mercury pharma was just poison ( that was the worst brand of thyroxine for me also).
Hi, my GP has written Mercury on my prescription as I’m ok on that, but phoning for my repeat prescription each time is more stress - I have to check they’ve read it then if a stroppy person answers the phone I still get, ‘we have to take what’s sent but we’ll do our best’. Nobody truly understands what we have to go through to keep reasonably well! I’m fed up of explaining and feeling like everyone’s doing me a favour in letting me have a consistent brand.
Is it named on your prescription as an item or is it just written in notes? Unless the pharmacy can’t dispense it due to supply issues, they have to dispense a named item. Based on what you have shared I’m inclined to think it isn’t a named item. And, after that find a pharmacy that does dispense it because I may be wrong but there are not supply issues with that brand.
Thank you for sharing. What happens if you take other brands?
I completely understand. You feel like they think your an hypochondriac by only able to tolerate certain brands of medications and its all in your head.
Yes I’m sure they think I’m a nuisance and fusspot but if you read proper guidelines you should have a blood test if the brand is changed so it’s that important. Medics and pharmacists just aren’t educated in this and it’s more stress for us as usual
Totally agree with you here: I've had to trawl around for independent pharmacies in my area because most big local ones here are only allowed to get Teva atm as they are all served by one big supply house - so I was told. The arguments I've been forced to have, just to get the same brand each time. Been titrating up for two years and every single time I have had to do so I've had to run the gauntlet of receptionists to ask if the busy doc (who has forgotten) will specify Mercury on the repeat scrip. Some doctors in the practice understand but the various locum pharmacists can get very stroppy with 'difficult' customers. I'd got to the point where I became almost phobic about going in, in case I had to have a row. Once I'd explained to them the reason I have to have the one type (mannitol free, terrible stomach on any that contains it) they did become more sympathetic. And one kind one altered it herself on my record.
Pharmacists, docs receptionists - all human beings doing a very hard job. Some of them have made MY life unnecessarily hard at times. But I wouldn't want to be them in the present climate. So I am always eternally grateful when they do listen and try to help.
Yes I know exactly what you mean, you’re made to feel like a nuisance and it’s so stressful to keep having to explain. They’re just not aware, not even pharmacists, which is the problem
I had a lactose reaction to Accord, sore mouth itchy throat and gurgly stomach, within about 5-10 minutes of taking it. Took 24 hours to wear off. Teva suited better but I noticed when I switched to a trial of Aristo that I was much less itchy skinned and some minor tummy gurgles also disappeared. 🌱
This was when taking 100mcg for the first time. Up from 75mcg and having only previously used Teva. Asda pharmacy weren’t able to dispense anything else in 100mcg format (and GP had written the script in such a way they had no options to dispense alternatives), have learned how to resolve this since).
I took from this that yes, lactose and I don’t agree. Which made sense because years before I’d had the same reaction to a type of HRT and just assumed it was a menopause symptom and lived with it FOR YEARS 🤦🏽♀️🤣 looked it up… contained lactose.
So I take from this that it doesn’t matter of its Levo or something else, for me lactose is to be avoided.
I’ve since gone dairy free and much of my general gut ill health and previously though IBS symptoms disappeared too.
If I have dairy now (by accident I had butter on a steak a few weeks ago) I get a mouth burn sore itchy throat reaction so heading into allergy territory. 🌱
I'm lactose intolerant and have colitis, I did a years food intolerance diary to see which food effected me I'm dairy free now.. Cheese was my killer, why I have no idea as when I was younger I loved cheese and had no effects from it🤷♀️ but now if I ingest it by accident (like it's hidden in some food... Boy do I know about it💩💩).
So I was doing really well with keeping away from my trigger foods, my bowles, stomach were calm no diarrhea, cramps or inflammation...... UNTIL.. I developed graves disease and we're put on anti thyroid drugs.. Within 3/4 days I started with pain then cramps then diarrhea, inflammation I tried in vain on both anti thyroid drugs but I just couldn't keep the drug in my body eventually vomiting them back, I went into thyroid storm and had to have my whole thyroid removed.
Then everything came back when I was put on thyroid medication first T4 which after server gut, bowle inflammation I found out these tablets contained lactose, I was changed to lactose free but these made no difference, I struggled on, my T3 was on the flood the endo eventually saying I wasn't either converting or absorbing the drug.
She put me on T3 but the gut, stomach issues remained.. Found out the T3 had lactose in them.. 🤦♀️ Eventually got on teva T3.. 🤮 This was awful I just couldn't stomach teva... I fought on with awful symptoms, my bloods were bad and a gp at my surgery took me off the T3 saying I need to go back on T4... I did with much the same symptoms (definitely no better) I started to do a time out, come off the drug see if the symptoms remain... If they do then I know it's not the thyroid meds... The symptoms always went, my bowles returned to normal, no pain or inflammation, I go back on and everything returns... So it doesn't take a brain surgeon to workout it's the thyroid drugs.
I'm now on Roma and I'm afraid to say having the same symptoms, although I've started to have a weird rash, like bubbles under my skin and it's itchy as hell🤦♀️I've tried countless times to see a gp regarding this but appointments are like hens teeth😠
But I did see an endocrinologist in Liverpool,not for thyroid but parathyroid, she did bloods for both and thinks I'm pooling the t3 🤷♀️ something I'm now looking into with her👍
So I just think like me, listen to your body, do a diary of symptoms if you get any, I also have sensitively to other drugs to.. 😔
Thank you so much for sharing your experience. And, I am sorry that like many of us you’ve experienced all these issues.
I am mindful of what I consume, tweaking and changing things as I go along over the years. Unfortunately, my gut issues predate treatment with levothyroxine so it won’t be a reliable indicator of any issues with levothyroxine. I appear to be experiencing itchiness but I am also unsure if this due to pre-existing excema (as a result of being hypothyroid probably) or if it’s medication related. Time will tell for sure.
I have been diary free for some months now, it hasn’t made a difference to my bowels or symptoms as far as I can tell yet. With that said, I have noticed when I have supposedly consume a rich dairy free meal, I suffer bloated mess straightaway leading me to think it wasn’t dairy free. However, I have had similar reactions when eliminating foods and they are usually temporary.
It’s such a minefield isn’t it?!
Thank you for sharing again. List of food for thought there.
I worked in a specialist cheese shop as a student, I’ve eaten enough cheese for a lifetime! I love it so much, weirdly don’t actually miss it 🤷🏽♀️ must be the 💩💩🤣
Funnily enough a friend told the GP she uses icecream as a laxative if she gets bunged up, GP was 😳 but admitted if it works or works 🤣
I did the same before going on thyroid drugs,(now the thyroid drug is the laxative 🤦♀️).. hyperparathyroidism gives you bad constipation and I was constipation for years I'd eat cheese on toast (Red Leicester 💩) I was off like a rocket🚀 it's great to get moved💩 but the pain and inflammation are hell.
I don't really miss it either... But when I pass the deli in my supermarket I walk passed slowly and remember the Red wine and cheese nights me and my x had (before my guts went nuclear) 😂😂😂😂
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