The reaction I'm having after taking after taking my levothyroxine tablets has become more overt and severe. I had stopped it for a while and reintroduced it and within 10 -15min of swallowing I have throat, lip and facial swelling with breathing problems.
I have Teva for comparison (currently taking Accord) which I used to take before and the reaction is less severe but still happens. I need to establish whether it is the excipients I am having an allergic reaction to, or a true levothyroxine allergy which is rare but possible. Teva doesn't contain lactose but the reaction is still occurring albeit less severely. The excipients in the others seem much alike. It could of course be the maize starch/stearate which is in all of them.
Despite the side effects I am reluctant to change from the Accord, as in conjunction with T3 it was working quite well (until something happened where I had to come off all meds but that's another story)
I only need to try a few doses of Tirosint to establish whether there is a difference.
However, how can I get it and relatively quickly? I contacted Roseway who said they can only accept a private prescription.
On the NHS I can't get through to my doctor for an appointment and wonder if they would have a clue about it anyway.
One pharmacist on the TUK list had never heard of it and another is saying they only get a couple of requests a year and then only have the ability to get certain doses and would have to order it in. My local pharmacist says he'd happily order it in, but his wholesalers don't stock it so he can't do that.
I was wondering does it need to be specifically requested by GP or can I take a normal levothyroxine prescription and simply request tirosint provided the pharmacists stock it?
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Alanna012
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I really doubt any pharmacy will supply other than in the standard 28/30 doses. (In the USA it comes in three strips of 10 in a pack. Would need to check if they are in any other quantity packs anywhere else.)
It is available in a number of European countries - but as they do not accept UK prescriptions, that is of little use. Nonetheless, my Rest Of The World medicine document does identify that it is supplied under several names.
Theoretically, if your prescription says Levothyroxine without adding "tablets", and is for a dose available from Tirosint, and is for the right number, I don't see a problem with a pharmacy dispensing Tirosint. But that is a lot of "ifs".
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.
(I can't remember if I have said this to you before, but if you have not done a Yellow Card report, I suggest you do one for each and every product which causes you a problem. Tedious, I know. Serves as a note to everyone else even if you have done so!)
Many thanks Helvella, yes I forgot entirely about reporting to Yellow Card! But should I do it? I'm probably one in 10,000 or even less who will have such an extreme reaction. Will see about getting Tirosint with a generic prescription
It doesn't matter if you are the only one on the entire planet who gets that reaction!
Every Patient Information Leaflet has a list of adverse reactions/side effects and these have been assembled from reports about individual patients - whether done themselves or by doctors or during initial drug trials.
One of the reasons for the existence of Tirosint is that some patients didn't do well on existing tablet formulations. Maybe they didn't absorb the active ingredient well enough. Or they had reactions to some of the ingredients. But we are repeatedly told that they are all the same. It simply has to be that there are enough who have issues oR IBSA would not have spent out so much on formulation and delivering Tirosint to market.
To be certain of getting Tirosint I think you would need to persuade your GP that you need it and to prescribe it named on the prescription. Either that, or for simplicity see a private GP who again names it on the prescription. I did that years ago when I was desperate for lacctose free Levo and the only thing available was liquid which GP thought was too expensive to prescribe!
All that said I recently switched from liquid Levo to Vencamil and during the discussion with my GP they did actually mention Tirosint!
Did you just have a one-off appointment with a private GP? I could possibly afford that. But if its a case of having to get retested etc, then my only recourse is the NHS GP. All my meager funds now are for medicine only!
I think I could maybe persuade the GP by saying I only need it for comparison purposes. If I still have a reaction there would be no point in continuing the prescription. But it's if they've even heard if it. Your doctor seems very clued up!
It was just a one off, as once my NHS GP knew I'd bought the liquid Levo on private prescription it shamed them into prescribing it for me from thereon in. You might need to provide proof of diagnosis and latest blood results but private GPs can really prescribe what you/they like.
I'd go as far as you can with your NHS GP first to save on cash as you might not need to go the private route.
I had never seen that GP before. Its a fairly large teaching practice and they often have new doctors there. It totally took me by surprise that she mentioned Tirosint but she seemed unsure about prescribing it and after all the difficulties getting hold of a regular supply of liquid Levo I wasn't keen on embarking on a different diffiult to access medication to chase.
As an aside, are you prescribed any kind of mast cell stabiliser? Might be something to look into.
Well I've just a response from one pharmacy on the TUK list:
[After requesting of wholesalers] they require a letter of clinical need and the price is very high (£400 for 30).
I am awaiting a response from another company.
Yes we can accept NHS prescriptions but it has to be written as TIROSINT it can NOT be written as levothyroxine with even instructions to supply Tirosint underneath.
So you're right about Tirosint needing to be specifically stated.
That price can't be right can it? Roseway didn't give a price.
Montelukast is the mast cell stabiliser I've been prescribed and I'm on heavy doses of antihistamine. The montelukast doesn't appear to do much for me and it's hard to keep taking such large amounts of antihistamine but, at this point I may have to accept the trade-off of improving on a levo/lio combo whilst taking a lot of medicines to dampen the reaction or coming off it and doing less well on something else. If the Tirosint is better and is as effective as the Accord then it would be great.
I'm sure you could get it cheaper than that if the NHS price is £54.35! Keep phoning around.
Do check all your environmental triggers like washing powder, cleaning products, personal hygeine, toothpaste, hair shampoo etc are at least not making this worse. They need to have few and very simple ingredients.
You can make appointment on line with a prescriber at Rosaway labs, it costs £30 for a ten minute consultation. You will need to download proof of your diagnosis of hypothyroidism and your latest blood tests. You can ask for Tirosint as your preferred choice . As a word of caution its not always the perfect solution as I have found out, it can still cause an allergy as it contains gelatine and glycerol which I have found out I can’t tolerate.
Many thanks Triciatextiles! Why on earth didn't Roseway explain about the consultation process when I enquired by email? They just said 'find a private prescriber.'
Fortunately, I got a strangely reasonable locum yesterday who prescribed me liquid levo. Something beginning with 'G' Very strange indeed. I didn't even have to ask! But the price is ridiculous!! £130+ if not more for 1 bottle! So he would only commit (quite fairly) to one prescript.
I only received it this evening as the pharmacy had to order it in. I'm not sure how it compares to Tirostint and won't try it until tomorrow. I pray it works. x
Strangely Reasonable Locum said, and I quote: 'we need to work out if it's the maize starch you're reacting to, or whether it's levothyroxine itself'. Which was interesting and I never thought I'd hear a doctor acknowledge the possibility of such a thing this side of marmalade sandwiches. He seemed to be suggesting levothyroxine allergy. I think I read something a few months ago on a google search about the vague possibility of desensitization therapy in rare cases. Where I don't know. Aside from that I could find nothing.
So now you're forced to buy your meds too. It's rotten isn't it? I hope the compounding works and is even better for you than anything you had before x
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