Alternative to liothyronine sodium?????

[dizzy864]

Hi,

I've posted before about problems I've been having with liothyronine over the past fifteen months. It's now become really serious for me. I have been on liothyronine since 2002 and had absolutely no problems with it until October 2014. I have experience what I believe is an allergic reaction to five batches of liothyronine over this period. I have had no problems with the other batches that I've had in this time.

I believe that since the UK manufacturer merged with companies in Europe in late 2013, they have changed the formula of the mixer. I believe that there is something in the new mixer which I am allergic to. I experience an increase in appetite, I can't get to sleep or stay asleep so become really tired and get all the problems associated with extreme tiredness. The worst problem is my eyes become really dry and incredibly sore. I've gained 17lbs over this time - my weight had been stable for years before this. When I change to a different batch it takes two to three weeks for most of the symptoms to go but my eyes remain sore for longer.

It's been very difficult and stressful to avoid these batches - my pharmacist has been very helpful.

Things came to a head this time because my pharmacist, in spite of trying for three weeks, was only able to obtain the one batch number of liothyronine that causes me the adverse reaction. As I ran out of liothyronine this morning, I telephoned every pharmacist I could find within fifteen miles of my home and finally managed to get hold of the previous batch that I'd been taking for the past six months. I was incredibly relieved but this batch expires less than two weeks after I finish it. I've found that this batch is a little under strength due to it's age and it does not fully control my hypo symptoms.

I am aware that only Uni Pharma have a licence to produce liothyronine in this country. I'm really stressing on what I can do as I think it either is now or very soon will be impossible to avoid batches with the new mixer.

One pharmacist I spoke to suggested I ask my GP to prescribe an unlicenced alternative - liothyronine in liquid form. Apparently, GPs can do this - although I was told many won't. I wondered if anyone knows anything about liquid liothyronine or of any alternative that I can get hold of preferably here in the UK but I would certainly consider buying elsewhere if I have to.

I did investigate buying T3 from abroad but the problem is that the companies that sell it in Europe are all now part of the Uni Pharma group and I would be paying for the same formula that I get here on the NHS and that I can't tolerate.

I did also look into buying from outside Europe. I read bad reports about both the supply situation and the variation in strengths of the lio. I did wonder about buying from the USA but was not sure if that is possible.

I have contacted both Uni Pharma and the defective drugs association in London. Uni Pharma are testing a couple of batches that I've sent them but they have ignored all of the many questions that I have asked them including, why was the formula changed. They won't admit that it has changed either.

The defective drugs association state that they, "routinely tested liothyronine towards the end of last year", it was acceptable. They don't state, and I've now asked, how old the lio was that they tested. They also state that some people are more sensitive to meds than others and everyone can't be accommodated. Whilst true, it ignores the fact that I've been on lio for thirteen years with no problems for first twelve years and that I can't stop taking it.

I'd be really grateful if anyone can offer any suggestions as I am really stressed out about this situation.

[Clutter]

Dizzy864, Mercury Pharma supply Liothyronine to the NHS. Uni-Pharma is Greek T3.

Perhaps your GP could prescribe Sanoffi Aventis (French T3), Paddock/Perrigo (USA T3) or Pfizer Cytomel on a named patient basis and see whether you do better. All are probably less expensive than Mercury Pharma. If Liquid Liothyronine is available that would get around the problem with mixers.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[shaws Administrator]

I thought that Mercury PharmaT3 was the only licenced product in the UK. Are you taking MP T3?

[Hidden]

Hi dizzy I started a new batch before Xmas an I've became so I'll I am right back to the way I was last year the brand I'm on is sigma pharma 5 m. I stopped it for two days but restarted today I've became so weak dizzy short of breath plus the most excruciating pain in my shoulders hips back I don't know what to do anymore 🤔 Hope you can find a solution . I've been wondering is that what's wrong with me to

[dizzy864 in reply to Hidden]

Hi,

Thank you for replying.

It sounds like you are reacting in the same way as me to the new mixer formula. I also suffer with shortness of breath - had to give up using an exercise bike because of that and tiredness. I also ached all over - back, neck, shoulders and arms. I also had more pain in my knees and thighs than I had for a very long time. I thought at first that the tablets were just weak. I increased my dose very slightly and found I quickly became over medicated. Strength is definitely not the problem.

You should complete a yellow card and email amco ltd who are the manufacturers. They will both ask you to send samples together with batch numbers of any tablets that have caused you problems.

It is only if everyone complains that something will get done.

From my recent experience, I don't think it will be possible to avoid the new formula so you really should complain.

[Hidden in reply to dizzy864]

Thank you I will when I feel bit better so much pain today shoulder blades around arms an if I pinch skin together it's in bearable 😓 Oh to feel normal again 😂

[dizzy864 in reply to Hidden]

I hope you feel better soon.

[Tallboy]

I can't get on with any form of tablet T3. The tablets just bring out all the worse symptoms of my hypothyroidism and I put that down to the non active ingredients. I did discover Liotir a liquid version of T3 but it is only licenced and available in Italy (13 euro per 20mls) over the counter. I managed to get a semi regular supply via a friend who regularly visited Italy. I did realise this was not an ideal situation so went back thro the NHS to see if they could come up with an alternative. I saw a local endo, who I was told was sympathetic to T3. Anyhow she prescribed T3 in 10mcg doses. When I got the medication it was in a capsule form and had apparently been made in a lab somewhere in the region. I gave them a go and they work without the nasty side effects of T3 20mcg tabs. The prescription has to be very specific to say 10mcg capsules otherwise you get 20mcg tablets which they assume you'll split. Hope this helps.

[dizzy864 in reply to Tallboy]

Hi, I've been trying to find out about the 10mcg capsules, in particular what their filler consists of. I can find no record of them anywhere. Are they made by Mercury Pharma or do you get them on a named patient basis? They are not listed on the mercury pharma products list.

I'd be very grateful if you could give me some further info. I'd like to be well informed when I see my GP on Monday.

[Tallboy in reply to dizzy864]

Can't help you with the formula. I get the capsules through Boots. I live in North Wales so suspect the capsules are made up in over the border in NW England? I have just got a new prescription and can ask at the pharmacy when I take it in. All I know is I've tried 20mcg tablets from France/Italy and UK and none of them suit me. The liquid Liotir where the active ingredient is suspended in alcohol worked fine but getting a regular supply from Italy was problematic. The capsules I now get also work for me. Suggest you speak to your pharmacist with this new information. The prescription needs to be very specific, 10mcg in capsules.

[dizzy864 in reply to Tallboy]

Hi,

Thanks for that. I'd be very grateful if you could speak to your pharmacist on my behalf. It would be easier for me if I can at least give my doctor a manufacturer.

It's good that they are 10mg it means I can stick with my current dose of 20mg x 3 a day.

If I go for 25 mg tabs, I am pretty sure my gp will use it as an excuse to cut me down to 50mg a day. I really do not want to reduce. The consultant I saw in August last year said I should not reduce. The problem is he did not put that in his letter to my Gp.

Thanks for your help, it is much appreciated.

[Tallboy in reply to dizzy864]

I asked the pharmacist about the ingredients and as they are 'manufacturer' at an offsite lab she will ask to see if she can get the info. She did say they were very expensive, more than the Mercury pharma type T3. Which we all know are vastly overpriced. Sorry I can't be more helpful at the moment.

[dizzy864 in reply to Tallboy]

Thanks for that. My doctor won't like the price increase! At least I wouldn't be wasting as much as I am with my present T3. My pharmacist did exchange some unopened bottles but I've given them loads to dispose of as I could not take them.

You didn't by any chance find out who manufactures these capsules?

The other option I'm going to give my doctor is the gluten free liothyronine tablets as they have a very different content to my present ones.

Incidentally, I found out that the Pharma ones contain, "industrial strength methylated spirits". I did a google search on it's uses. It does not sound to me that it is something anyone should be ingesting. It said it contains many toxic substances.

I can't understand why it's being used in tablets.

[dizzy864]

Hi, Thank you for your replies. Firstly, I apologize for the confusion - I am on Mercury Pharma T3. I got confused.

I would prefer to avoid cytomel as it contains gelatin and I've been vegetarian for over 40 years. I'm afraid the thought of eating animal products makes me feel sick.

I have a gp appointment on Monday and I'll talk to him about Sanoffi Aventis and Padock/Perrigo and the 10ml tablets which also sound good.

I did some research on liquid lio and it does not sound very good - too risky for me!

It's a big relief to know that there are options.