Looking for some input from folks please. Moreso as evidence in that I can get my GP to ensure my scripts are of certain brands because it seems that I am brand sensitive, especially having Hashi's and gut issues.
I steered away from TEVA like most when I discovered it made me feel ill after a few days of taking and I didn't understand why at the time.
I usually have Almus/Wockhart for my Levo (sometimes Mercury Pharma) and Morningside for my T3.
I have felt absolutely awful the last week with so much more anxiety, fatigue, I feel mentally confused and almost suicidal, can't think straight, fear and flight mode, feel like I am gonna drop when I stand. I am screaming inside.
I wonder whether it might be the Mercury Pharma T3 I have been given. I am so up and down I just can't pinpoint anything precisely at the moment, apart from splitting my T3 dose into 2 doses a day and missing the odd one which has created this upset.
I suppose I should have kept a diary each time I was given a different brand to try and pinpoint whether it's just me or the brand but, apart from a really stressful time at the dentist the other day which has probably upset my adrenals again because I can't deal with the slightest bit of stress now, I wonder whether it might be a certain brand or just having different ones on occasion.
I managed to get my GP to note on my records NOT to give me Crescent brand for my Diazepam as I found I needed to take more to get relief and I told her I don't want to take more than necessary.
GP's always seem reluctant to listen to their patients, moreso thinking it's all in our heads because they seem to think each one is exactly the same just a different brand. But we sufferers know it's not!
Can I hear from others to their experiences of change of brand:-
1. Which ones suit you better?
2. Which ones don't suit you?
3. How long after taking did you experience symptoms?
3. What bad symptoms did you experience?
I am very interested in general but I also wish to use the info as backup in asking my GP to ensure I have only certain brands
Written by
Jefner
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My experience is limited to Levo only so I hope this is relevant.
1. Which ones suit you better?
Teva
2. Which ones don't suit you?
Accord
3. How long after taking did you experience symptoms?
Minutes/hours
4. What bad symptoms did you experience?
In minutes, tingly inside mouth/lips, sore tongue, gurgling stomach, trapped wind, burps, then within hours, anxiety, waking up in the night needing the loo and IBS type sticky stools. 😬
A month ago it was recommended that you increase your T3 by 5mcgs as your FT3 was so low. Did you do that? Your low T3 might be the reason you feel so awful.
I'm taking Thybon-Henning T3 which is lactose free and suits me.
i did try that a couple of years back but made no difference and I went over range so I just stayed on 10mcg. But I am trying it again and going to find a private Endo to help me with it
It's unlikely that 5mcgs T3 would send your FT3 over range at the moment. You may even need more than that. It would suppress your TSH possibly if your doctors might complain about that. The reason you're so unwell is your low T3 level. You did mention about seeing a private Endo. Are you still thinking of doing that?
i can assure you that additional amount sent me over, the results are in my bio. I contacted my GP earlier as I need all the info I can if I am going to approach another Endo. I can't believe have been on T3 since 2016, no idea where the time has gone. As regards my anxiety, I am 60 and have had it on and off for nearly all my life but back in 2016 when my body crashed it came back with a vengeance and has never left. I did have a few years of respite when I went on Paroxetine, it saved my life. Then a few years later, menopause hit, diagnosed hypo and then through this site I tested for Hashi's in 2016 and found I had that. I have been called a complex case by many and I am. I just can't find the route cause of the anxiety and if I can get rid of that I can function again instead of existing
I'm not sure what you mean by going over? If you mean your TSH got suppressed or went under range then that is what your GP says would be 'over'. If you're taking T3 though then this is exactly what will happen and is to be expected. GPs just aren't taught how to make us feel well. They slavishly follow numbers and ignore how unwell we are. I took a look at your bio and couldnt see where you went over as such. Your TSH got suppressed but your FT3 and FT4 were very within range, so as you are taking T3 you weren't over. Hope that makes sense. 🙂
It was my T3 that went over range. Surprisingly my Dr actually said "it's more how you feel" rather than numbers which made me fall to the floor in shock. A GP that actually realises that lol. I am assuming with the small increase I am trying to make of 5mcg I don't need to drop my t4?
Well that's a refreshing change, so he/she would be fine with it then which is great news. Thing is, that's probably what you need to make you feel well. It's actually a good thing, or would be for you and as you're taking T3 it's only normal and to be expected. When you're on T3 you just need to watch the FT4 and FT3, ignore TSH. Your FT3 is and has been for a very long time way too low and no wonder you aren't well.
I want to squeeze three doses in a day but at the moment, and until around New Year, I have had to tolerate building works literally feet away from me for nearly 2yrs so I have changed my sleeping patterns. I dont usually sleep until around 4am and get up lunchtime. The later I get up the less noise I have to tolerate until they go home at 4.30pm. It has definitely worsened my anxiety and depression and knocked my circadian rhythm out. Trying to figure out how to best dose
I hav a circadian rhythm disorder anyway so have at time been used to operating on your schedule. It doesn't really matter what the actual time is, just work on the basis of waking up, meals and going to bed. Plenty of time for a third dose. 😀
i usually set my alarm for around 10am, take my thyroid meds including only 5mcg T3 as it might be stimulating my waking anxiety anyway. I am then taking another 5mcg around 4-6pm depending upon what time I eat. Just wondering whether to include the additional 5mcg as a separate dose or keep at two doses and take 10mcg
If it were me, and I am a forgetful kind of person, I would just add the extra 5mcgs to a current dose, probably the 10am one to help get me through the rest of the day. People try 3 doses I think to try and maximise their current optimal dose but you're a long way from optimal yet.
i would prefer to take my 10cmg at around 10am and go back to sleep as normal at the moment until lunchtime and then take another 5mcg around 4-6pm. Only trouble is when I saw my private Endo back in 2016 my morning cortisol levels were so high he didn't recommend me taking any T3 because he said it's a stimulant and would worsen my morning symptoms
I think your Endo was missing the point that you're currently under medicated so really need the T3. It won't then be a stimulant. Probably best get a different Endo.
no because the Mercury Pharma they gave me I don't think suits me which is why I have been feeling like hell the last week. Can't get my new script until Monday so still have to take the Pharma but not going to up my dose until I get my other brand
That's fair enough. It's too awful how long and complicated it is to get basic medication. I hope you get what you need and good luck with the new Endo.
Jaydee I am so very tired of this existence, it's not a life and I just want my miserable life to end. I don't see any way forward for me in feeling well enough to live. Every waking hour for me is a living hell with the fear and anxiety and living on my own with no-one to talk to makes things so much worse
Hopefully you have been recommended an Endo that will really help you feel well. I've had anxiety and depression in the past so I do know how awful it can be. I live alone and have been more or less housebound for the past 9 years. Recently saw a recommended Endo, added some T3 to my Levo and beginning to feel things are going in the right direction. Focus on the future, don't look back.
so pleased you are starting to feel better. Well at least someone here understands how lonely and frightening life can be when you arn't well and on your own. How long have you had thyroid issues
Thank you. I'm sure it's going to take me quite a while to be fully functional again, but I went out to the cinema today which is a first ever alone. I can find other company in time when I'm stronger. Haven't been able to keep up with 'normal' people for years.
I've had thyroid issues for around 30 years, 25 diagnosed but never really thrived ever since. Have been getting the key vitamins right too lately which does feel different.
wow so you have been suffering longer with thyroid issues than me then, although at 60 I have been suffering with anxiety nearly every day of my life from a young age, during the times when no-one spoke about mental health issues or knew how to diagnose or even help so I just tried to cope the best I could until I started Paroxetine and within a month my symptoms completely disappeared for the first time in my life and I actually felt alive and lived a normal life just for a few years then everything hit me and I am worse off in the last few years than I have ever been in my life and to be honest I have no fight, enthusiasm or will to start again, have done it so many times, it just feels helpless for me. 99% of my life has been miserable and to be honest I don't ever see it ever getting better for me. And again, having to fight against the agoraphobia, there is just no energy left to do it again, as I have tried so many times in my life. All my friends have gone so my fight is alone and it's frightening to be so alone with no feeling of hope
Anxiety left me when I got my diet right, removing gluten, dairy and soy. Also lactose free tablets help with that. My GP can't understand it but it's true. Feel free to message me any time you're struggling. I do understand the loneliness and being frightened.
Paroxetine worked best for me too. Prozac was the other thing that worked but it messed my sleep up. TBH I tried about every antidepressant out there at the time, went through a very blue phase and was under mental health services. All courtesy of thyroid disease.
It's really, really hard summoning up the wherewithall to tackle thyroid issues. Not least as it's such a struggle with the NHS. I tried the NHS route years ago and it didn't end well so I've struggled for years on Levo alone. This time I'm doing it privately.
Low T3 can cause any amount of mental health issues. I hope that you can add some more with this new Endo and see life in a different light. What supplements do you take?
I spoke with my chemist yesterday and told him about the Mercury Pharma and he said he could probably get me some Accord but no guarantee. Anyway my script arrived this morning but I was in bed when it arrived so I was blurry when answering the door and just went back to bed. Just opened and my T3 is loose in a brown bottle and looking closely at the tablets they have exactly the same markings as the Mercury Pharma. I can't confirm what he gave me as the chemist is now shut until Monday. I am totally stuck now until next week. I don't know what to do now
instead of taking my whole 10mcg in the morning, because i feel I am getting bad effects from the Mercury I am taking 2 doses but being nearly 8pm I probably won't be able to take one tonight. Can you tell me how you obtain your meds and do you always get the brands you want, and if so, how
I stick to the same brand each month, Boots have been very good and note my records which brands suit me. They make up my prescription themselves rather than it going to a central pharmacy to be dealt with. also doctors have noted my records to say no Teva as the mannitol used as a filler upsets me. Find the brand which suits you best. Then speak to your chemist.
Pretty soon after I took it, either the same day or next day, sorry can't remember for sure it was last year. I have a history of drug sensitivities so I know the signs. I've noticed no issues on Accord.
Jefner, I avoid Teva like the plague. The acacia powder filler in it gave me very unpleasant gut symptoms. Thought I was developing an ulcer. I always have Almus/ actavis usually available from Boots
I remember getting Teva one time from the pharmacy - I didn’t know what happened to me, the hypo symptoms started pretty soon after, around 3-4 days. Since then I always ask for Accord, which is the brand that I find is best. For T3, I find Thybon Henning pretty good.
As with most makes mentioned here, Thybon Henning is listed in my medicines document.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. It is sectioned by UK - rest of the world, and by T4, T3, desiccated thyroid, etc.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)
I spoke with my chemist yesterday and told him about the Mercury Pharma and he said he could probably get me some Accord but no guarantee. Anyway my script arrived this morning but I was in bed when it arrived so I was blurry when answering the door and just went back to bed. Just opened and my T3 is loose in a brown bottle and looking closely at the tablets they have exactly the same markings as the Mercury Pharma. I can't confirm what he gave me as the chemist is now shut until Monday. I am totally stuck now until next week. I don't know what to do now
I’m the odd one here, it’s Teva that suits me best 🤪. I recently had 25mcg of wockhardt added to my 75mcg of teva to get my 100mcg daily dose. I took it for two weeks and felt gradually worse during that time. Absolutely no energy, lightheaded, exhausted after minor exertion. The first night I took my usual, I slept for nearly ten hours and gradually recovered my energy levels. Suppose it could have been the combination that didn’t work. My pharmacy are trying to give me aristo brand, apparently it’s cheaper than teva, so my doctors are happy to add teva only to my prescription.
Jefner I don't like Teva T4 either, and I asked them to write 'No Teva' on my records.
I've read HU admins saying thyroid hormones are very picky! And that seems to be the case. I assume it's the same for T3 as T4.
The Government/MHRA issued a statement in 2021 saying that if patients prefer one brand, they should stick to it, or words to that effect. Give this to your surgery and pharmacist.
Refer your GP to the latest thyroid medication prescribing guidelines which state that it is preferable to remain on the same brand where possible, and preferred brands should be specified on the script. As we are all different in our reaction (or not) to fillers used in medications, it is pointless asking which are the "best" brands, as what suits one does not suit another. What is important is to check the formulation of any meds and supplements you are taking, and making a note of probable filler reactions. The main excipients used in levothyroxine that can cause issues for some are acacia (Teva and Mercury), and mannitol (Teva). However, fillers such as lactose, sucrose, corn derivatives, artificial sugars and any citrates can be problematic for certain individuals. Problems with inactive ingredients are usually felt immediately, or within a day or so, in which case your GP should be informed and a new script issued. Most meds and supplements contain fillers, and it is down to us to isolate which, if any, cause problems for us, and to avoid them in the future.
Basically if you are having these symptoms and can link them to the change in the drug brand you can contact the GP office straight away and ask for a new prescription specifically for the brand's you can cope with.
As you did before , you can politely and firmly request that your brand's are not changed in future and ask them to write the specific brand and a note this should not be changed on your medical summary and repeat prescription list.
They cannot force you to change your brand on any medication, or which country it is obtained from , if you have a good reason and do not consent to the change. Unless there is an issue with stock in the UK or you yourself find your drugs are not working well the only reason for these changes is money and it is not your responsibility to suffer to help them balance the books.
If your repeat is from an in house pharmacy at the surgery and they no longer stock it there the GP needs to give you a prescription to take to another pharmacy , it is your right to ask for one if the surgery does not stock what you need and their options do not work for you , or you are not happy to change your brand for any reason.
It may also be a good idea to request a referral to an Allergy/ Intolerance testing clinic or explore what options are available in your area for MCAS testing , as a positive diagnosis of your sensitivity to certain drugs or packers in drugs can make dealing with these issues a lot easier.
A lot of GPs have little knowledge of the effect of intolerances on illness symptoms of all sorts and are little interested . Over the years I've found going in prepared with my list of symptoms and information on what I needed testing for with straight forward polite but firm reasons for having things done or checked finally got me the help I needed.
My experience isn't from Thyroid medication . I had these issues when my surgery kept changing my Livial to the type made for the European market which contained a different packer to the one made in Ireland and caused me , I assume, not to absorb the active ingredients in the drugs because my stomach issues can make it hard for me to breakdown certain foods and drugs and absorb them.
I had to get prescriptions to pick up for some time before the surgery pharmacy finally ordered in the right type. They also gave me generic Midodrine , and I discovered the branded one was more effective so I had a note put on my list for that and with explanation they have now got used to getting me what I need now too.
Good Luck , and if you haven't done already get hold of your GP surgery today , tell them you need a prescription to pick up and why , say you will discuss it on the phone with the GP if they need to but tell them you need a prescription to pick up today to prevent your symptoms lasting longer than they need to.
my problem is i can't link any particular brand tbh. I am on 3 different brands at once. At the moment Almus for 100 Levo, Wockhardt for 25 and Mercury Pharma for T3
Definitely worth requesting a proper review by a recommended Endo then so you can finally make the drug choices you want from a proper discussion.
The GP would have limited ability to give you advice or make alterations of brands to find the right combination for you because of regulations and lack of specialist specific training.
I spoke with my chemist yesterday and told him about the Mercury Pharma and he said he could probably get me some Accord but no guarantee. Anyway my script arrived this morning but I was in bed when it arrived so I was blurry when answering the door and just went back to bed. Just opened and my T3 is loose in a brown bottle and looking closely at the tablets they have exactly the same markings as the Mercury Pharma. I can't confirm what he gave me as the chemist is now shut until Monday. I am totally stuck now until next week. I don't know what to do now
Have you tried other Chemists than your usual one?
If you can find out if a larger local Pharmacy has your usual brand in stock today , or could order it in for you today from another branch in the knowledge that you would be in with a script on Monday to collect it , you could speak to your GP on Monday morning to get a new prescription written straight away and get the brand you need.
I've done a little research for you and as far as I can tell there is not a UK supply issue for Accord they just prescribe less of it and therefore keep in lower stocks of it at chemists
as a response to the huge increase in charges made by that company in the last ten years.
The effect of changing your brand on your symptoms and thyroid blood test levels can cause abnormal results and more problems as you get used to the change.
That isn't always a problem caused by Patient Intolerance to the brand , or your own unique sensitivity either . In research it has been shown that there was a large number of thyroid patients that showed abnormal test results and more symptoms after changing brand and staying on the same dose even when they had no history of allergy or .
A Dutch research papers conclusion was that it should probably be recommended that any patient whom has a thyroid brand change should probably have the doseage looked at and altered at the same time for a temporary period after the drug brand is changed to prevent this increase in symptoms and test abnormality.
Just like with many drugs it can be that the body needs time to get used to a new brand , not just a new drug , and reacts badly to the change for a number of weeks before it is used to the change in what it is processing and balances again , it's not always because we have an intolerance to the drug itself.
Unfortunately, it can take a number of weeks for us , the poor patients , having to go through the trial and error and the discomfort that comes with it, to see if we are going through a temporary blip which will balance out, or , if we are actually intolerant or unable to absorb the new drug properly in the long term for that specific medication.
Hopefully, you will get some good news from a pharmacy that opens on a Saturday and a new script that you can put in on Monday and help you get back to normal again. Just be aware, as you have already been having symptoms from the brand change , when you get your usual brand back you won't instantly feel back to your "Normal" overnight . The body will still need up to two weeks to get it's balance back again while it recovers from having a negative response to the change.
Try and rest as much as you can until this is solved for you ,
so sick of this. I usually have Morningside T3. My pharmacist is usually pretty OK with me and helps me out but he says there is just no guarantee on what he receives now even though he puts in a specific request for that brand and even though I tell him I need what my GP stipulates, he says it's not set in stone with the NHS.
I know the Mercury Pharma T3 I have been given isn't suiting me and I am very tempted to spend £300 and buy some online until I can get sorted with an Endo. Only thing is if I order some of the Morningside online it won't get to me until Monday so I still have the weekend on the Mercury Pharma. I have phoned round many chemists and none of them can give me what I want let alone get it
If you GP has specified Morningside on your prescription and it is because other brands aren't as good for you the Chemist needs to ring around all branches to get it delivered to them for you.
The only reason you couldn't get your named medication from a pharmacy, especially a Nationwide one , would be if there was a problem with supply , they can't just force you to take another brand at the chemist unless there is no supplies available in the UK because it's easier , they have to order it in for you specifically and not just rely on drugs already in their supply system.
I would be wary of trying to order Morningside privately until you have done some checks as to whether there is a universal problem with all pharmacies getting in supplies. If it is a shortage issue you could end up ordering it only to find the order is cancelled , or they've sent you an overpriced substitute, probably of the same make you are already being offered.
You should , at least , have an online chat with the private chemist to get a guarantee that they have still got Morningside in stock and that they will not send you a substitute.
If the GP is happy to specify the medication brand you could also let the GP know you are having this problem and see if there is stock at your local hospital pharmacy . If they are willing your Specialist could be contacted to write a prescription for you to pick up at the hospital pharmacy , or your GP if proactive , could ring the hospital pharmacy , explain the problem and ask if you can take your prescription there to be filled.
I spoke with my chemist yesterday and told him about the Mercury Pharma and he said he could probably get me some Accord but no guarantee. Anyway my script arrived this morning but I was in bed when it arrived so I was blurry when answering the door and just went back to bed. Just opened and my T3 is loose in a brown bottle and looking closely at the tablets they have exactly the same markings as the Mercury Pharma. I can't confirm what he gave me as the chemist is not shut until Monday. I am totally stuck now until next week.
I am ok with all brands but cannot touch Mercury Pharma tablets. They give me very unusual symptoms: feeling of a tight band around my middle, like my insides had been moved about, sometimes a pain in my stomach followed by vomiting. The doctor thought I had gallstones. I was referred to a specialist who put a camera down my throat, he found nothing. However, four days before the specialist appointment I changed the brand of levothyroxine as I had run out of tablets, and my symptoms had completely disappeared by the time of my appointment. I told the specialist that I didn’t need the procedure because I had found the reason for my symptoms, but he didn’t believe that it was down to that specific brand. I don’t think my doctor quite believed me either! Since then, I tried that brand once more and the symptoms came back, so it seems that Mercury Pharma is not for me. K
hi I was on wockhart fine for over 3 years then all of a sudden it makes me feel dreadful. It makes my heart race for 8-9 hours, after I take it and gives me bad anxiety. Headache feeling sick. Dry eyes. I had no idea what happened to me. I went private and she said I was now allergic to tables and was over medicated. She changed my medication to liquid thyroxine and lowered the dose a little. I felt like my old self again. However she had to write to the doctor to tell him to keep me on it and the brand. Which they did however there is a supply shortage at the moment and I can’t get it 🤷♀️I’ve been taking tablets again but feel awful again. What’s the problem why can’t we just have what makes us feel well. Good luck x
I don't know what to do I feel so ill. The panic and fatigue is so bad. I sent my gp an email asking her to sort out my T3 but after phoning to check to see if she was in to receive it, apparently she is training today and it's been passed to another GP. I told the receptionist I was feeling suicidal and I needed my right meds urgently. It's now late afternoon and I have heard nothing, so it's another day without my brand. I am just going to have to spend £300 and order them online which I wish I had done in the first place because at least they would have arrived today/tomorrow.
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