Help please

[dizzy864]

Hi, As I have posted a few times before, I have been having a lot of problems with various batches of liothyronine over the past sixteen months. I've been prescribed lio for the past thirteen years.

I now believe that some time in 2014 following the company's merger with other companies in Europe, it changed the formula of the mixer it uses with these tablets. I react badly to something in the new formula. As these tablets have a two year expiration date, any tablets now available will have the new formula mixer.

I emailed Amco at the beginning of December and yellow carded the batch I was taking. I have sent samples to both amco and the defective drugs administration in London. Amco have spoken to my GP ( with my consent. ) I have heard nothing back from either of them. My Gp made it clear he would not talk about what was said to Amco.

The defective drugs administration pointed out to me that it is impossible to make any drug that suits every one. There is always going to be a small number of people that can't tolerate it. Whilst this is true, it ignores the fact that I took this drug for twelve years with absolutely no problems. The problem is that it's formula has changed.

I had to wait a week to get an appointment with one of the partners from my GP surgery rather than with one of the locums. Last Monday, I asked my GP to prescribe a 10mg capsule alternative. ( American I think ) He pointed out to me that the surgery had received an unexpected £300,000 cut to it's annual budget that morning. My timing was clearly lousy! He said that I'd given him a challenge as he did not know how to prescribe this to me on a named patient basis. I told him this was urgent as I run out of my current batch of tablets in a couple of weeks. He told me that it would take him a, "day or two" and then someone would telephone me. I felt reasonably happy - I'd hoped for a prescription there and then but doubted I'd get it. It seemed quite positive.

I hadn't heard anything by last Friday morning so rang the surgery. There is a note on the computer that a 10mg capsule is being looked at. The pharmacist told me he would investigate and phone me back pm.

He did not call. I rang again today. This time it was made clear to me that four members of staff including the practice manager are looking at this - I should be grateful was clearly the attitude. I will be contacted when there is something to tell me. I said again this was very urgent. I was also told I should see a doctor concerning an alternative - as if this would be happening if there is a UK alternative!! When I said I was really stressed about this, I was told maybe I should see a doctor and get something for it!!! I asked if I could speak to one of the four people who were looking at this so I could find out what the situation is, I was told, "No you can not."

I've read on line that it can take two to three weeks for the pharmacist to obtain a special order. Does anyone know if it really does take this long? I haven't got three weeks and have just under two weeks.

Does anyone know what my right are? Can I demand that my GP prescribe this for me? My fear now is that I'm just being strung along by the surgery and I have no idea what I can do about it.

I really feel miserable and the stress has caused a constant head ache and I'm laying awake a lot of the night and getting really tired. It's not my fault that the formula has been changed. Amco won't even admit it has changed.

I would really appreciate some help.

Regards

[puncturedbicycle]

I'm so sorry to hear this. I've had a similar runaround from my surgery about whether The Great I Am would deign to prescribe t3. At the time I thought **** off, I will just buy it myself and then I won't be perpetually waiting to have the rug pulled out from under me, but then my source went dry. For now I'm lucky that one of another gp in the surgery is prescribing it without question, but I'm always waiting for the other shoe to drop.

Are you aware of the otc alternatives? You'd have to pay yourself but at least you wouldn't be held hostage by these clowns.

My only other thought is as a last resort could you send the surgery a very strongly worded email and copy in your local councillor, MP and/or newspaper? Or write to your local MP asking for support? How about PALS? It doesn't seem fair or legal to leave you wondering if you'll be clean out of the meds you've been using for 13 years before they come to their longwinded decision.

[Clutter]

Dizzy864, I don't think AmCo have reformulated Liothyronine but you may have become sensitive to one of the excipients. Acacia powder causes sensitivity in some.

Liothyronine Sodium 20micrograms Tablets

Ingredients:

Liothyronine Sodium

Lactose, Maize Starch, Powdered Acacia, Sodium Chloride, Magnesium Stearate, Industrial Methylated Spirit, Purified Water

I think your practice will have to prescribe sufficient Mercury Pharma T3 to tide you over until the decision is made whether to prescribe an alternative and, if so, until an alternative can be ordered and dispensed.

_______________________________________________________________________________

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.

[dizzy864 in reply to Clutter]

Hi, I don't understand why you think Amco have not changed the formula of lio. What evidence do you have for this?

Amco has refused to answer any questions I have asked, including was the mixer changed and if so when?

Their representitive talked to my GP and although my GP will not discuss the conversation with me, he has not told me that the mixer was never changed.

I had no problems what so ever with it until October 2014. Since then I have had five different batches that have made me really ill - all with identical symptoms. In between those batches I had other, older batches that I had no problems with. For five months up to early December '15 I had the same batch number each time. I had none of the unpleasant symptoms with this batch. I then had another problem batch which gave me the same unpleasant symptoms. After ten days I managed to obtain some of the previous batch I'd been on and again my symptoms gradually got better.

The only way I can account for my symptoms to be present then disappear then be present again etc each time happening when I change batch number is a problem with some batches.

If I had developed a sensitivity to one of the excipients it would come and stay it would not get better with a change of batch and then come back again with another change of batch.

Whilst researching my problems, I had read the contents you published above on a couple of other web sites.

To be honest, I did not believe they were correct. I googled, "industrial methylated spirits." I could not believe that it had a medical use in tablets. It is very nasty stuff.

[helvella]

A 10 microgram capsule would probably be formulated by a specialist pharmacy (there is at least one on the UK). Cost tends to be astronomic.

Also, these "specials" might well arrive with a 28-day life. So, if you take one a day, they will have expired before you take the 28th tablet - because it will always take at least a few days from being made to getting into your paws. (This is standard practice - they have no way of actually testing individual lots of 28-tablets so they apply the same time to almost everything.)

Quite possibly the lowest cost route for your surgery would be for them to prescribe Sanofi Cynomel from France. At least one person here managed to get that and it seemed to work out less expensive than MercuryPharma's!

[dizzy864 in reply to helvella]

Hi, I did look into any and all alternatives to UK lio. The main problem is that most tablets made world wide are 25mg and not 20mg as in this country.

The 10 mg capsule being a multiple of my current tablet can be taken in the same way - 20mg x 3 times a day.

The 25mg tablets means either taking 75mg a day which my gp would definitely not agree to and I don't want to or reducing to 50mg a day. Apart from this would be too little for me (17% less ) I also would not be able to split it into three equal doses which I found out in 2007 works a lot better for me.

The other problem is that a lot of the European lio is now produced by a subsidary of Mercury Pharma and it would either have the same formula or be very likely to change to the same formula in the near future.

[dizzy864]

Thank you to all of you that have taken the time to reply to me. It really is appreciated.

I had a telephone call at 5.05pm yesterday from a secretary at my gp's surgery. She told me that she was asked last week to contact me to book a telephone consultation with a doctor to discuss my thyroid meds.

After a bit of an argument, it was agreed that a doctor would phone me after evening surgery rather than on Wednesday.

My regular doctor called. He said that he had been refused permission by the practice manager to change my medication. He said that the strength of the 10mg capsules may vary and two may not be the same as one of my 20mg tablets. Therefore, the change must be done by an endocrinologist at the County hospital. I pointed out that would take months - it has one of the longest wait times in the health authority! It was over six months last August - I went to Hull instead.

He said I would have to remain on my current meds until after the appointment. I told him that was not an option as the tablets make me too ill.

He said he would contact the endo department immediately and ask for a very urgent appointment for me. He said he has a good relationship with them and he would expect me to have an appointment in the next few days. He will phone me as soon as he knows anything further.

Even if this goes through as expected, I am still very unlikely to have the new tablets before I run out of my present batch.