Anyone else had intolerance to fillers in Levot... - Thyroid UK

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Anyone else had intolerance to fillers in Levothyroxine tablets?

Tintin0202 profile image
33 Replies

Hi there. Just found this site after frustration and lack of interest in my case by doctors and pharmacies. Having been diagnosed with underactive thyroid 16 years ago I was put on Levothyroxine tablets of varying strengths after regular blood tests and I was feeling pretty good most of the time. However a couple of years ago I started feeling lousy so I went to a brilliant Functional Medicine doctor and had thorough tests and was diagnosed with uncomplicated Hashimoto's disease and she put me onto several supplements which helped. I then realised that it must be the brand of Levo that was causing the problems as every month the pharmacy gave me a different generic brand - some OK and others not. After a great deal of online research I realised I was having side effects from the fillers - probably Acacia powder, but I am sensitive to many drugs and gluten (which I gave up completely 3 years ago) so it is difficult to pinpoint which one it was - apart from Teva. Some brands were OK but the pharmacy could not guarantee that I could have the same brand every time. I moved house recently and changed doctors and have had to explain my situation once again. The doctors at the new surgery said they had never heard of that problem before, but I know it is common from my research. Now it seems that the generic brands have been taken over by one company and the ingredients are all the same - or so the dispensary has told me and that I can no longer get a brand that suits me. So a couple of months ago I spoke to another doctor in the practice to ask if I could try a liquid thyroxine instead (having read about it). Eventually they agreed although they were not happy as it is more expensive. I started on a fairly low dose of 45 mcgs as apparently the liquid is absorbed better and at first I felt much better. However I then started to feel really bad and asked to have a blood test after 11 weeks (I had not been offered one). They only tested my TSH level (shortage of tubes?) and it came out at 7.8 which I know is far too high. No wonder I am feeling bad! The receptionist rang me to say I should up my dose to 50mcgs with no mention of another blood test. This I did about 2 weeks ago and still feel awful with so many symptoms - fatigue, painful hands, nausea, chest pain, acid reflux, bad sleep, brain fog, dizziness etc with some days worse than others. They have asked their patients to 'bare with them' (!) as they are moving surgeries, but I have managed to get a telephone call with a doctor next Friday. I would start taking a higher dose now but I need to speak to the doctor to get a prescription for it. Perhaps I am being a bit wimpy in not insisting I speak to someone sooner and maybe I should consider it more urgent? A note about liquid thyroxine - it also has an additive that has side effects - Sodium methyl parahydroxybenzoate. Also it is really fiddly to take as you have to put a syringe into the bottle, turn it upside down and then read the numbers on the syringe. If your eyesight is not good and you have arthritic hands it is not easy! Has anyone else had similar problems with fillers/GPs etc? Has anyone tried Tirosint gel capsules and are they available on the NHS? Would it be sensible to ask for a referral to an endocrinologist? Apologies for rather long post, but thanks in advance for help.

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Tintin0202
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33 Replies
helvella profile image
helvellaAdministrator

Now it seems that the generic brands have been taken over by one company and the ingredients are all the same - or so the dispensary has told me and that I can no longer get a brand that suits me.

That is so wrong it deserves a formal complaint. If that correctly displays their level of ignorance (and it is actually a trivially simple question to answer), then I would be extremely concerned at their answers to even slightly complicated questions.

There are several makes of levothyroxine in the UK. Indeed, there are several makes of levothyroxine oral solution (liquid) and I don't think they all have exactly the same ingredients.

Off the top of my head, tablets are made by Accord, Mercury Pharma, Wockhardt, Aristo and Teva.

Tirosint can be obtained in the UK but it needs to be imported as a special. That usually makes it very expensive. I believe that Roseway Labs can dispense against a private prescription. I do not know the cost.

You can find out far more than your dispensary/pharmacy/doctors appear to know by looking at my medicines document. Most things you are likely to want to know are either in the document or in links from it,

If they are not, ask again! :-)

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.

dropbox.com/s/shcwdwpedzr93...

Tintin0202 profile image
Tintin0202 in reply tohelvella

Thanks so much. Your link is really helpful and interesting.

Hookie01 profile image
Hookie01

I have intolerances to the fillers, I can't take any with lactose either. I'm taking Aristo at the moment as can't take teva. I have Aristo marked on my prescription and I get it from the same chemist every week so it can be done. I also done it with mercury pharma until I realised it was the lactose causing me pain. I still have issues with Aristo but it's the best out of a bad bunch. You just have to keep going on at them and find a helpful chemist. Independent ones are the best. Good luck x

crimple profile image
crimple

Hi Tintin0202, I had a terrible time with Teva and came to the conclusion it was the acacia powder filler which seriously affected my guts. I thought I was developing a gastric ulcer.I found Actavis/Almus or Accord to be OK for me. My GP wrote on my prescription the brand I had to have. EU brands such as Thybon and Uni- Pharma seem to manage without weird fillers!

Hope your GP and Pharmacy will be more amenable.

helvella profile image
helvellaAdministrator in reply tocrimple

Trying to ensure that no-one makes a mistake:

Thybon is the brand name used by the company Henning for their liothyronine tablet product. It is not levothyroxine (the subject of the original post). Henning is owned by Sanofi.

It is all very well calling acacia a "weird filler" but we have had many posts saying how Eltroxin (going back to Glaxo days and through Goldshield) was the very best levothyroxine. As too has been said about AbbVie's Synthroid. Both include acacia.

Some members would not be impressed by one or other the excipients of Thybon Henning:

Pregelatinized starch (corn), corn starch, microcrystalline cellulose, sodium carbonate, sodium thiosulphate 5 H2O (Ph.Eur.), highly dispersed silicon dioxide, hydrogenated castor oil.

crimple profile image
crimple in reply tohelvella

Apologies for my mistake re Thybon

greenfingers profile image
greenfingers in reply tohelvella

Eltroxin is no longer available in the UK unfortunately.

helvella profile image
helvellaAdministrator in reply togreenfingers

Are you certain of that?

The MHRA still has documentation for Eltroxin on their site:

mhraproducts4853.blob.core....

They usually remove when a product disappears.

The date of that document is 12th November 2020 - so not that long ago.

However, Advanz Mercury Pharma Eltroxin is identical to Advanz Mercury Pharma levothyroxine, so there seems little cause for it to be "unfortunately"?

greenfingers profile image
greenfingers in reply tohelvella

After I had been to an endocrinologist and he said to ask for those I asked at a very good chemist. They even wrote it down as to what it is , a generic name for, unfortunately the name escapes me which is annoying I know. This was a good while ago maybe 5 years. Unless it is back again I don’t know. The chemist did say he wished these endocrinologists would get it right! Sorry I can’t be of any more help.

helvella profile image
helvellaAdministrator in reply togreenfingers

There have been issues when Eltroxin has not actually been available - then it seems to come back for a while.

But, as it is identical to the same company's Levothyroxine sodium, all it does much of the time is confuse us all!

I too wish the endocrinologists would get it right. But rather more concerned about how they diagnose and treat than the (relatively) small details of levothyroxine brands! :-)

Bookworm63 profile image
Bookworm63

Hi Tintin0202, welcome to the forum. You'll find this an excellent site with some excellent advice! I've learnt a lot from reading lots threads on here that have been relevant to my experiences. One of my problems has been finding a suitable tablet for levo. My difficulty with it has been the lactose and the mannitol in Teva brand so I've found the only brand I can take at the moment is Aristo or liquid. The dr has put Aristo brand only on my prescription but Boots my usual local pharmacy supplier were unable to order and told me it was unavailable. So I took the prescription and rung round and found an independent pharmacy who ordered it for me. Not only that they are going to deliver it to me every month so I don't have to go and get it now 🙂 . Its difficult to explain to doctors and pharmacists the problem some if us have with these pills. I went for my flu jab at my local pharmacy last week and I think he was quite put out that I had to get my levo somewhere else he couldn't understand why the dr just didn't prescribe the liquid. When I said because its too expensive he just said its not that much more. Well its about £90 different so I think it is! I had a lot of trouble with my condition in the early summer of this year, some of it I believe was because I was undermedicated and some of it I think was linked to lactose in the tablet. I've managed to get my dose increased and managed to source a pill with nothing in it to upset my stomach. Been taking the increased dose of Aristo for just over a fortnight now. When I've got to around 6-8 weeks will have a go at getting a private blood test and post on here as I have now learned that's the best way forward . The people in the know on here really do give good advice and know what they're talking about. I've also learned which vitamins I need its not all down to the levo there are other ways we can help ourselves. It's been a bit of a journey but I feel I'm getting there. I'm not 100% yet but I'm much better than I was. I have a friend and a close relation who have been on levo for several years and are on very low doses especially considering their weight. They've both had severe health problems and their Dr's have put them through all sorts of tests but never looked at their thyroid levels! I've been talking to them about some of the knowledge I have gleened from being on this site and they are now going back to their Dr's and getting their thyroid levels looked at. I'm hoping they will not just take the TSH result and insist on the full results and try and get them to join this forum to get the proper help they need. I also advised them about the timing of their blood tests and not to take their levo until afterwards. There's so much information I have gained by being on here I find it hard to tell them everything as I don't want to overwhelm them. I found it hard to take it all in at first and I just wanted the tablet to take away the tiredness and aching which it did to begin with but I have always problems along the way and slowly I have realised that you can't just ignore the niggles they will catch up with you in the end and you have to address the problems head on if you want to feel well. Good luck in finding the right pills for you and in feeling well again. 💐

Tintin0202 profile image
Tintin0202 in reply toBookworm63

Thanks so much for all the info and replies. I have certainly learnt a lot from reading the posts. One of the problems is to find a pharmacy who will agree to give you a certain brand you want. I am going to see if I can try Aristo - have never heard that one and it may work for me too. I think lactose and Mannitol were causing side effects for me too but very difficult to pin down. I don't like taking the liquid and not sure it is making me feel any better. The only advantage is that you don't have to wait an hour before breakfast. I have always had a healthy diet, given up gluten and take Vitamin D3, Omega 3, Magnesium, Turmeric etc and never really had a weight problem, but have noticed my weight going up since starting the liquid thyroxine. My doctor only tested for TSH last time so I will definitely go down the private testing route and will post my results here for comment. Thanks so much for everyone's help - it is good to hear I am not alone in my quest to find the right treatment/dosage.

jbicondoa profile image
jbicondoa

Hey there! I don't have a lot this year about the other particular medication, but I can share about tirosant. I have been taking it now for a year and a half. It was a little bit of an up and down, but now my numbers are great and I feel so much better. It took me probably about a year to really get evened out. I personally take the capsules instead of the liquid just because it is cheaper. I also take my medication at night before bed. I also know that everyone says you need to be on additional T3. But personally, I'm doing just fine without it. It took a bit for my T3 number to come up naturally, but it did. The awesome thing is I only have to take one medication now! wish you the best!

Tintin0202 profile image
Tintin0202 in reply tojbicondoa

Out of interest can you get Tirosint from your NHS doctor or do you have a private prescription? If you go private, how much do you pay for the Tirosint? Thanks

helvella profile image
helvellaAdministrator in reply toTintin0202

I think jbicondoa is not in the UK so NHS questions will not apply and prices will be different.

SewingBee profile image
SewingBee in reply tojbicondoa

Hiya, I just wanted to say that I too take my thyroxine at night and I take iron by day. I've tried reversing it with disastrous results. I find it best to sleep through my thyroxine dose. 125 micro g

SewingBee profile image
SewingBee

I'm afraid to say that I too get good and bad days and sometimes I may pick up later in the day. I suffer from all the things you mentioned and I've also tried many alternatives for other medications to make them have the least effect on thyroxine. If you get some good days that is great to know and my advice would be to be sure to follow instructions from your pharmacist; when to take them and what not to consume near to your thyroxine dose.Good Luck

Tintin0202 profile image
Tintin0202

Thanks again for all your comments. I am afraid to say that I have never had any advice from doctors or pharmacists about when to take Levo or what not to consume near the dose - or for that matter not to take Levo before a blood test. After 15 years on Levo this is all news to me and thanks to this site that I am learning more every day!

SlowDragon profile image
SlowDragonAdministrator in reply toTintin0202

Levothyroxine is EXTREMELY fussy medication

It must be taken on empty stomach and then nothing apart from water for at least an hour after

Many take waking but can be more convenient and perhaps more effective taken at bedtime

Are you currently taking any other medications or supplements

All must be minimum 2hours away from Levo

Many must be 4 hours away

Always test thyroid levels as early as possible in morning before eating or drinking anything apart from water and last dose Levothyroxine 24 hours before test

Tintin0202 profile image
Tintin0202 in reply toSlowDragon

I tried taking Levothyroxine at bedtime but didn't work for me. I am now on liquid thyroxine (CREO) which has parabens which I don't like, but I see there are other liquid meds available thanks to Helvella's link. I am not on any other meds but do take supplements but not before lunch time as I am aware that you should leave 4 hours between taking Levo and any other meds/supplements. Your advice is much appreciated.

Happydays17 profile image
Happydays17 in reply toSlowDragon

HOW DO YOU TEST YOUR OWN THYROID LEVELS

SlowDragon profile image
SlowDragonAdministrator in reply toTintin0202

Government guidelines on Levothyroxine and that MANY people find different brands are not interchangeable

gov.uk/drug-safety-update/l...

Tintin0202 profile image
Tintin0202 in reply toSlowDragon

And thanks for this link.

Happydays17 profile image
Happydays17 in reply toSlowDragon

How do you test your own thyroid levels?

SlowDragon profile image
SlowDragonAdministrator in reply toHappydays17

Are you in the U.K.?

j9j8j7 profile image
j9j8j7

My mum (who lives in the USA) has a ton of very serious food allergies and the only thyroid medication she can tolerate is Tirosint. I wish it was available on the NHS because I have yet to find something that works well for me.

Sharoosz profile image
Sharoosz

I was given Teva once at the pharmacy instead of my usual two (can't understand why they couldn't give the same brand for 25+50mg or why they can't make 75mg like they do on the Continent). The Teva immediately made me feel nauseous. One of the fillers for sure. I had the pharmacy put on my record to only give me what suited and didn't have problems after that.

Sharoosz profile image
Sharoosz in reply toSharoosz

Oops- mcg!

SarahJane1471 profile image
SarahJane1471

Hi I’m pretty new to all this but I have read so much on this brilliant site and followed all the advice from these fantastic people. I found that actually speaking to the pharmacist at my local dispensary and showing them the government guidelines they were then very happy to put the brand name in my notes. Then I spoke to my GP who added to my repeat prescription. I’m on Mercury Pharma now after reading all the advice on this site. Keep informed that’s my advice 😁

sy28 profile image
sy28

Yes! I've lost faith completely following four years mono-prescribing Levothyroxine without success, without making me feel better. I do seem intolerant to fillers. I also suspected I was not converting properly, Medichecks blood test results confirmed this theory. This year I had to stop taking Levothyroxine altogether. I felt as though I was being poisoned due to severe cardiac symptoms. An ECG came back normal. After a six month break of not taking Levothyroxine, I'm still fatigued and TSH has elevated, but extreme symptoms I was experiencing have subsided. Oral solution Levothyroxine is currently being prescribed but the focus is on a T3 trial which my GP supports. I have Hashimoto's and suspect there might be conversion issues. I remain suspicious of Levothyroxine fillers, though. Guidelines do recognise some thyroid patients do not improve on Levothyroxine, alone. It's worth further researching. I hope you have a sympathetic GP who takes your symptoms seriously.

Cripanemic profile image
Cripanemic

I am allergic to the fillers, too. Tell your doctor to prescribe the brand name.

helvella profile image
helvellaAdministrator in reply toCripanemic

Why on earth would the name make any difference?

If the medicine contains a substance you are unable to tolerate, that is the issue.

The "brand name" in the US context would be Synthroid. The excipients of which include acacia (considered an issue by a number of members), lactose (widely considered to be an issue including by the pharmaceutical industry), sugar derived from corn (considered an issue by a number of members), povidone (a substance coming under increased scrutiny) and talc (a substance coming under increased scrutiny, especially if it comes from sources where it is associated with asbestos).

Each SYNTHROID tablet contains the inactive ingredients acacia, confectioner's sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc.

Somehow assuming "the brand name" would be a better choice for the individual seems to miss the actual issues. It really is necessary to consider the actual excipients used - not just point at the apparent status of the medicine. And there really is no "brand name" product in the UK.

Partner20 profile image
Partner20 in reply tohelvella

A valid and necessary statement to make in response. I couldn't have put it better myself. There is far too much criticism of manufacturers of levo, rather than advice to determine excipients that may be the cause of issues experienced, as these are elements that may be found in many medications and supplements, as well as food products. Well said!

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