Having experienced a problem collecting my prescription this morning, I decided to write to Mercury Pharma - here is our correspondence:
From: forleysdl@amcolimited.com
To: sarah
Subject: RE: Liothyronine - T3
Date: Tue, 21 May 2013 17:10:03 +0000
Dear Sarah,
The tentative date given by our supplier is end of June 2013.
Regards
From: Sarah [mailto:sarah]
Sent: 21 May 2013 16:36
To: Shruti Shetty
Subject: RE: Liothyronine - T3
Dear Ms Shetty
Thank you for your reply, which unfortunately doesn't tell me very much. There are four weeks in June, can you estimate whether supplies will resume at the start, or towards the end of the month. Is a new batch currently in manufacture or has that yet to commence. If manufacture has yet to start can you tell me the lead time from commencement to availability? Please can you quiz your supplier more deeply and provide me with a more thorough reply.
I await with anticipation.
Kind regards
Sarah
From: forleysdl@amcolimited.com
To: sarah
Subject: RE: Liothyronine - T3
Date: Tue, 21 May 2013 14:38:03 +0000
Dear Sarah,
Further to your query we apologise for any inconvenience caused due to the non-availability of Liothyronine Tablets.
Due to manufacturing issues we are out of stock on Liothyronine Tab and unable to give any accurate date, tentative date given by our supplier is June 2013.
I can assure you that we are doing everything we can to remedy the situation and it is the matter of our outmost priority.
Regards
Shruti Shetty
Customer Services Team Leader
Amdipharm Mercury (AMCo) Group
(a merger of the Amdipharm and Mercury Pharma companies)
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From: Sarah [mailto:sarah]
Sent: Tuesday, May 21, 2013 5:29 PM
To: Medicalinformation
Subject: Liothyronine - T3
Dear Sirs
I am a patient relying on Liothyronine (T3). I am extremely concerned about the current supply problem and would like an update as I have just 1 week's supply left.
I await with anticipation for your reply.
Kind regards
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MissBfirstDanBlackBelt
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Good luck! I tried speaaking to them a few years ago about t4 (why only 20mcg and 50mcg in uk) A grumpy GP sugested this move (eye roll) anyhow the person I spoke to and had an e mail from could not speak english....... we got nowhere, but via e mail sggested my doctor change my dose to suit the tablet size. hey ho :/
Couldn't we have a concerted effort from every member on this site and individually spam them on the same day? Might be a little harder to ignore a horde!
I don't think 'spamming' will make a difference. From what I've gleaned the problem is the unavailability of the active ingredient, the manufacturer can't produce it without that. My pharmacist told me last week that the delay is indefinite. Apparently the NHS are trying to buy in medication from across Europe. Whether your GP/endo can specifically prescribe a drug to be brought in from elsewhere I don't know.
I too am angry and very concerned about this being a long term issue. I have been told by my GP this morning that it is unlikely they will be able to get hold of Liothyronine before September. I was only told about the supply problem last week and have now completely run out of my supply. I have started to get the old symptoms again so my GP said the only alternative would be to retry Levothyroxine. I explained that I had experienced an adverse reaction to Levo which is why my endo, who I sought out privately, put me onto T3 only treatment which seems to work well for me.
She did say that she will converse with the Pharmacist tomorrow to see what they can do and perhaps speak to the NHS endo to get his opinion. In the meantime I am left with no supply. I have tried an alternative supplement but this just seems to irritate the thyroid to the point where I am aware of it's existence so I have dropped that aswell.
I have had some communication with this lady regarding Eltroxin (which is also non existent). She asked me to phone her to discuss the matter but after two days of trying, leaving messages and her not getting back to me I gave up. Bad service all round if you ask me.
Here is this morning's correspondence. I wonder if I will get anything that remotely resembles a proper reply:
Dear Ms Shitty
Thank you for your reply. I note with dismay that you have addressed just one of my questions. Please can I request that you address the others:
Is a new batch currently in manufacture or has that yet to commence. If manufacture has yet to start can you tell me the lead time from commencement to availability? Please can you quiz your supplier more deeply and provide me with a more thorough reply.
I take your point however I think it a bit of a cop out - I'm sure someone knows the answer. Our difficulty is making those in the know understand the importance of all this because there is no other licensed supplier in the UK - unlike other drugs which have alternatives when supply problems occur.
You are correct in that they are waiting for the active ingredient. This active ingredient doesn't just 'pop' into existence. As I said, someone will be in the know.
I am writing to you to express my concern over the current problems with the supply of a prescription only medication called Liothyronine.
Many people, myself included rely on this medication to maintain wellness when affected by thyroid disease. Liothyronine is prescribed for individuals who do not fair well when taking Levothyroxine on its own.
Problems with the manufacture of this drug began as I understand it in April. Conservative estimates from the drug company Mercury Pharma estimate that normal supply will not resume before the end of June however this morning, I have heard that supply is unlikely to resume until September at the earliest.
This is a dreadfully worrying situation for many patients up and down the country. Worrying indeed as Mercury Pharma is the only company licensed to supply this drug in the UK. There is simply NO alternative.
There are many other manufacturers around the globe and I understand that the NHS might be making moves towards import.
I would ask you whether in your capacity as MP you could uncover the truth about the situation; whether the NHS is indeed moving towards a speedy resolution from abroad and how long this might all take.
I cannot stress enough how important this is to me and many others around the UK.
I have been onto my pharmacy today (who have been great with helping). She has been told that there are no dates of when this will be coming in or if it will actually come in. She suggested that I call Boots customer care line which I have, as they have a really strong ethic of customer care. The guy was great, knowledgeable and understanding. He is awaiting a response as to why they cannot import it and he promises me that he will call me back and I have a reference number. Should anyone else want to do this 0845 070 8090.
I have emailed my MP, I have chased NHS England AGAIN! and now I am going to call my GP.
This is all time consuming and I am working out exactly how much I have left and working out how I need to fill those days in case my pills run out and I start to decline quickly. My daughter is getting married in August and I am making 7 dresses, 12 table runners, 130 pots of jam, painting table centre pieces etc etc. Best I don't sleep between now and the end of the pills then!!!
I called them and they were useless. Said they wouldn't know anything about medication as they are not pharmaceutically trained! She spoke to a manager who knew nothing. I am waiting for a call back.
I have just returned from a trip to Boots near where I work. The pharmacist contacted Mercury Pharma to see if they had emergency stocks available. He was told no but that supplies should resume in two to four weeks!!!
I can only conclude that we should expect the very worst so as not to be disappointed.
I write regarding the delay in manufacturing of the medication Liothyronine, also known as 'T3'. T3 is the ACTIVE thyroid hormone. T4 (commonly known as thyroxin) is produced by the thyroid, along with a small amount of T3, for entry into the body's cells. T4 is a storage hormone only and some of that in store needs to convert to T3. Each cell in the body cannot function properly without T3. The main treatment for hypothyroid patients is to replace the hormone T4 with the medication Levothyroxine. However, many patients have trouble either converting T4 to T3 or absorbing T3 into cells. These patients are additionally treated with T3 (some are treated with T3 ONLY). A high amount of T4 in the blood which is not converting (pooling) can cause horrendous symptoms for the patient. Patients who have undergone a total thyroidectomy are particularly at risk as they have no thyroid hormone production at all.
I belong to a number of thyroid groups who have been talking, for a number of weeks now, about the shortage of Liothyronine. As neither my endocrinologist, GP or pharmacist had spoken to me about it I presumed it wasn't that much of an issue. However, last week I called my pharmacist to enquire and was told that they had been informed that morning by the manufacturer that there is currently NO supply of Liothyronine. I scoured my local pharmacies and found one who had 2 month's supply that they were able to put by for me. Initially my pharmacist was told that there would be a delay until June (I understand the manufacturer is waiting on the active ingredient) but have since been told that this delay is indefinite. Upon calling my endocrinologist's secretary yesterday, she knew nothing about the shortage!
Most patients with thyroid disease have waited years to finally be treated with T3, becoming more and more ill as time went on prior to this. It is quite clear that patients who have not researched their disease and have little knowledge of thyroid hormones, how they are used within the body and underlying issues which complicate treatment are fobbed off with T4 only medication because of funding and budget. It is well knows that natural dessicated thyroid hormone is most likely the best treatment for thyroid patients but as T4 costs very little per month, many patients think they have no choice but to do as their doctor says, when in fact what he/she is doing is keep them ill and undertreated.
Mercury Pharma is the only licensed manufacturer in the UK. There is no other alternative to Liothyronine available, save to source from Europe. I understand there is a 'quota' system wherein an amount of medication is put aside for NHS patients, the rest being sold across Europe for financial benefit. Now it seems the NHS are having to make moves to buy in from Europe! This just doesn't make sense.
This situation is causing much stress and anxiety for many fellow sufferers and if you know the affect stress has on thyroid disease, you would see that is something that needs to be avoided.
I would very much appreciate it if you could look into this issue as a matter of urgency.
This is worrying, I escaped being fitted with a pace maker thanks to T3. Having read about T3 being used in trails for heart problems, that was the info that gave me the incentive for the final push to get it. I am not looking forward to the cold, collapsing and none abilillity to think / function again.
And I do not trust europe's game when it comes to copy cat drugs.. hatr ot come up with the conspericy theroy but, who makes/supplies the "magic ingredient"? hope its not China....... bad medicine coming out of that place in more ways than one.
I've just been to pick up my prescription of T3 from Boots. They gave me two days worth and told me the manufacturers have said September before they can get any more. They are going to phone Germany to see can they get some and phone me back asap. I pointed out I had no thyroid gland and was totally dependent on T3.
I was working on the original date of June as I had a weeks worth in reserve, but September is far more worrying. Boots is a huge chain with a lot of financial clout and a lot of branches they could have called on before going abroad. If they are struggling I'm very worried.
So many different stories the manufacturer is telling the other day I read on here that they have it available the mind boggles they certainly are giving us the run around. Just to let you know Boots on line have it apparently in capsule form.
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