I wrote a post about a month ago saying my adult son was unable to get liquid levothyroxine as it was out of stock. He was taking the brill Pharma brand and tolerated it really well.
The chemist managed to source Teva liquid levothyroxine three weeks after we asked for a repeat prescription.
My son is feeling awful and totally drained about 40 minutes after taking the Teva liquid Levothyroxine and needs to go to bed for the rest of the day.
Has anyone experienced the same reaction with Teva liquid levothyroxine or have any idea why this is happening to him?
Effectively, the only difference is the sodium hydroxide. And that would only be used in an extremely small quantity to adjust the pH of the product.
Maybe the purified water in one factory tends to be a touch more acidic than that in the other? Hence needs a drop or two of an alkali (sodium hydroxide).
That means, they will only use these as needed and there is the possibility that one batch will have one of the substances but not the other. As I understand, for these products, the pH is very important.
Both PILs state:
Levothyroxine contains sodium methyl parahydroxybenzoate (E219) which may cause allergic reactions (possibly delayed).
I cannot think of any mechanism by which the one would be fine and the other has a debilitating effect. (There again, I am not a chemist or pharmacist!) Though the allergic reaction statement does make me wonder if one uses a substantially greater quantity of E219? (Though whether intentionally or inadvertently we cannot know.)
I think you have to do Yellow Card report(s) and make sure you emphasise the differences.
You should also contact your GP and explain. And the pharmacist. And both BrillPharma and Teva.
This paper might be of some interest:
Excipients in the Paediatric Population: A Review.
Thank you helvella, I’m going to write to our GP over the weekend and contact our chemist and ask for the brill Pharma brand only. It will mean my son is without Levothyroxine for lengths of time. What is everyone’s experience taking tablets and what is the brand of tablets most tolerated?
My personal preference is Vencamil (from Aristo) but - currently - they only do 100 microgram tablets. 75, 50 and 25 expected sometime in the next few months - maybe July? With 12.5 to follow at some point.
The 100 tablets can be split easily in two - just by thumb pressure on a flat surface. Aristo are not allowed to tell us that in the UK but do say it in many other countries.
And we have had a few members say they don't get on so well with it. But ingredient-wise it seems the least likely to cause problems as it does not contain the three most suspected excipients - lactose, mannitol and acacia. Also, all tablets obviously avoid the large doses of glycerol found in all oral solutions.
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. There is now a specific world desiccated thyroid document.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
He has been taking 150mcg per day in liquid levothyroxine for last few months I think with the break of three weeks between getting the liquid Teva.
He was under medicated for years only able to tolerate 50mcg of Teva tablets and it was on this site I saw that there was a liquid levothyroxine so he was prescribed this only in the last few months.
His last blood tests were in November of last year. His TSH was down to 33 from “not measurable” two months before and his T4 was up to 11 from 5.
The doctor comes out to our house to do blood tests as my son has developed severe anxiety and agoraphobia during the pandemic, as he wasn’t going out to protect me as I am bed ridden with severe M.E and it’s all gotten too much for him.
He also has type 1 diabetes so he’s got a lot to deal with ❤️
Thank you for the information SlowDragon. Yes he has Hashimotos and his antibodies tested were positive. Our GP informs us that labs won’t test T3 or FT3 and they won’t test vitamin d “as everyone in Scotland is deficient”
Do you think the gap of three weeks where he didn’t have any liquid levothyroxine could be causing the reaction to the Teva liquid levothyroxine?
He was diagnosed with Hashimotos in 2013 so having been under medicated for all of that time and finding a liquid medication brand he could tolerate, but not available, has left us both sad, stressed and so tired.
Our GP did test me for antibodies and they were negative but I’ll ask again.
Thank you for the links to private testing. Do you have a view on which companies are best to use for private testing? Are blood draws better than finger pricking? ❤️
I’ve been on liquid Levo for about 3 years now and have been given about every brand that makes it over that time. At first I was sceptical given I’d had so many problems with tablets and the advice that you should stick to one make.
Apart from the taste, which I can honestly say seems to vary between different batches of the same make let alone different brands, I’ve come to the conclusion that there really isn’t much difference between them. I’m a very sensitive person and have a tendency to react to medications if there is the chance to have one. I’m quite pleased with this particular way of medicating as far as I’m concerned and my results have confirmed it.
I’d speak to your GP in case something else is going on. Has he picked up a virus for instance or is he now needing his D, B12, Folate and Ferritin checking.
Thank you star 13 for your reply. He feels awful most of the time as he’s been under medicated for years as he could only tolerate 50mcg of Teva tablets and felt so much better on the Brill Pharma liquid and managed to get up to 150mcg.
Teva was the only brand he could tolerate and then it was only 50mcg. His vitamin levels are within range the GP says but all at the lowest end, his vitamin b12 was 208.
My son is 6 feet 6 and currently about 19 to 20 stones I’d say. He was 11 stone 5 before developing Hashimotos. ❤️
I’ve purchased liquid vitamin b12, vitamin d3 and k2, selenium and vitamin b6 as read these help to convert T4 to T3 ❤️
He’s not gluten or dairy free, we did try gluten free but his weight was going up more, he doesn’t weigh himself I could visually see his stomach become larger, so I stopped buying gluten free items as I thought they might be contributing to his weight gain, I don’t know,
The last blood draw from GP said his testosterone was to be tested again in a month.
This didn’t happen as my son was too anxious to deal with the doctor coming out.
His weight is mostly around his stomach and I fear it’s due to his liver or kidneys, I have read low testosterone low vitamin d and stress can also cause a large stomach. ❤️
Hi Annie567, I'm sorry to hear about your son. I don't know if this helps, but I researched all three daily, oral solution Levothyroxine, sugar free, brands I was being dispensed due to experiencing severe side effects.
Teva (didn't take, due to previous reaction to Teva in tablet form) but contains identical excipients.
BrillPharma and Zentiva.
I compared the excipients in both.
I also talked to the dispensing pharmacist who went through the excipients on screen with me.
I quickly discovered it doesn't matter which brand of Daily Oral Solution, Levothyroxine, Sugar Free, you're prescribed, the excipients remain the same.
Originally, I switched from BrillPharma to Zentiva after a year, but it made no difference.
Based on my symptoms, the culprit excipients could be:
Citric Acid Anhydrous and additional Citric Acid 10 per cent.
These are known to cause digestive issues, stomach pain, abdominal bloating and gas, upset stomach, fast heartbeat, fatigue, feeling weak or tired, shakiness, sweating, inflammatory responses.
Glycerol
Can cause abdominal discomfort, bloating, diarrhoea, eczema/dry skin, stomach cramps
Sodium methyl parahydroxybenzoate (E219)
A known endocrine disruptor.
I recommend you research this excipient further.
Can cause contact dermatitis, flaking or peeling (eczema) on face and in ears, eye, respiratory irritations.
I am not a medic, but I have to question why a known endocrine disruptor is being added to thyroid medication.
Finally, returning to the excipient, Citric Acid, I read there is the potential for fragments of Aspergillus Niger, a fungus and type of mould, to make their way into the manufactured Citric Acid. For people with compromised immune systems, breathing or ingesting spores can affect a patient's lungs or sinuses.
Personal Background
Underactive thyroid diagnosed 2017
Hashimoto's autoimmune thyroiditis diagnosed 2018
DIO2 polymorphisms in various pathways diagnosed 2018
Daily 10mgms Morningside Liothyroxine (reaction to excipients just as bad)
Am coming to the conclusion NHS generic synthetic thyroid medicine does not suit me (this is very individual).
This might be of interest, feel free to DM me.
Earlier this year I had a private consultation with a laboratory on Thyroid UK list. After confirming symptoms and issues, I was prescribed compounded Levothyroxine, the only excipient being rice. It's early days, but symptoms are settling down. This won't apply to your son, but T3 brand was changed at the same time to lactose free Thybon Henning, 20mgm.
I had such a sympathetic, positive hearing.
As I said, I am not a medic. I am a lot older than your son - but I read your post, first time round, and wondered if I should respond. On reading your second post, I felt compelled to reply. It's worth researching excipients, comparing your son's symptoms, speaking to your pharmacist, contacting your GP. Good luck and I really hope your son recovers his energy soon.
Thank you so much for your response Jacksnipe and all the information. We need to contact the GP and speak with the chemist. Thank you for your well wishes I really appreciate it.
Teva tablets were the only brand my son could take but only up to 50mcg. He would experience numbness on one side of his body and like his mouth was being pulled down and an upset digestion system if he took 100mcg.
The brill Pharma brand of liquid Levothyroxine was great as he experienced no side effects and he was beginning to feel better in his mood, energy and anxiety.
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