Hello, I was recently prescribed Teva levothyroxine and experienced a bad allergic reaction. My doctor's surgery are now prescribing me a new brand which is lactose and mannitol free.
I just wondered what brands other people are on? And if anyone who experienced a bad reaction to Teva has now found one that works for them?
I am worried that I will experience reactions to other excipients. Are there any others I should avoid if I am sensitive to lactose, gluten, and mannitol?
I'm not sure if you have seen my UK medicines document? It lists all excipients in all UK thyroid hormone medicines.
If you are referring to the Aristo Vencamil product, make sure it is prescribed as:
100microgram Vencamil tablets
(or whatever dose) on the top line of the prescription.
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.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
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 injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
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.
Thank you for this. I am new to this forum. Is Vencamil available in 25mcg yet? I just read another post saying people are having trouble getting a hold of it. Thanks!
There are problems with GP systems not knowing about it, and some pharmacy systems not seeming to know either. But categorically it is available - and one member even posted a picture of the pack.
My own pharmacy can see 25, 50, 75 and 100 on their ordering system. But my GP can only see 100!
Thank you, that is helpful to know. I have been calling pharmacies all morning asking for mannitol and lactose free brands with no luck -- perhaps I should try again and mention Vencamil. The pharmacy technician at my surgery only mentioned Glenmark as lactose and mannitol free, but I called Glenmark this morning and they have no stock of 25mcg until approx. end of December, pending approvals.
They disappeared entirely which is why I put them in the Non-current matrix in my document. I did contact them at the time to check and they confirmed their levothyroxine would not be available.
I think most pharmacies have no idea about the excipients. They seem to check PIL and/or SPC documents one at a time if they need to find out.
Lack of the sort of information in my document, in one place and easy to access, is why I even created it!
Glenmark said only 5mcg is available at the moment, the rest are pending approval.
Ah, that is good to know thanks. Yes your documents and excipient knowledge would save us all so much time!
I just made two calls; one to Aristo Pharma and he said I need to ask pharmacies specifically for Vencamil and the wholesaler is Alliance which most pharmacies have accounts with. I then called back a pharmacy I already called asking for lactose/mannitol free, and mentioned Vencamil this time -- and they said it needs to be on my prescription otherwise they won't dispense it, but in theory yes they can order it for me! When I asked this pharmacy and others this morning about ordering they brushed me off and said that is not how it works. This is my first time using prescription medication so completely new to all of this.
I've been round the block with this one too, the pharmacies are in need of an update, the Government guidelines from 2021 (as confirmed to my MP by Andrea Leadsom in the previous govt when she was Health Minister) state that patients should stay on the Levothyroxine that suits them and should not be changed. I feel a campaign coming on, a pharmacy Thyroid rep visit 🤣
My most successful approach is with my 'calm and patient' head on (which believe you me is challenging as I seem to have developed a stress/anxiety response to the FEAR of not getting what I need to feel well) to ask for my prescription to be released back to the 'spine' and then take it around to all the independent pharmacies in town and ask... do you order from Alliance, and then, please can you order this for me. If there is any resistance I just give it the... I can see you are busy, I'll sit and wait if you like. Worst case scenario Paul (if it is still Paul) at Aristo can call the pharmacy and give them the codes they need to place the order.
GP can write Aristo/Vencamil in top line of prescription - this gives the pharmacy the power to order in rather than use up the generic stocks they have on the shelves.
Update 10.10.24 Paul from Aristo confirmed absolutely no problems with stocks of Vencamil and large wholesaler Alliance has all dosage sizes. Absolutely no reason why any of us should be struggling to get it.
Thank you for sharing your experience! That is very good advice. I did find that being calm and persevering got me there in the end! But yes, completely agree the system is fragmented and a maze to navigate -- I absolutely wouldn't have been able to do it without the advice on this forum! Also great to know there is plenty of stock, thanks
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
Thank you so much for your advice helvella SlowDragon Regenallotment . I finally got a hold of Vencamil via my local independent pharmacy! Very grateful to this forum as I would not have known there was a thyroid medication without mannitol and lactose without it. Also the advice to have the prescription changed meant I could tell my surgery exactly what I needed. Saved me a lot of time! Thanks again. I'll let you know how I get on with it. Praying I won't have another allergic reaction
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