Calling on all thyroid sufferers the time is NOW for bringing awareness to the situation concerning the shortage of T3.
Something just does not ring true Mercury Pharma is now saying:
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 dates on the availability of this product.
I can assure you that we are doing everything we can to remedy the situation and it is the matter of our outmost priority.
Prior to this they were saying it would be available in June.
The use of the word remedy is the understatement of the year.
It's just not good enough if the company cared about our illness they would of had contingencies put in place for having manufacturing problems as they say.
Technology like telephone and email are so simple to use they certainly don't seem to be in any hurry to help us.
I have written to UK column and written to several other news media.
I have written to my local MP however MP'S take too long.
Scottish Petition lady has contacted Scottish news they need info.
They wont help us or take us seriously so we need to bring it too their attention through the media NOW.
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Kezzerb
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I too have been feeling very suspicious the last few days. My surgery have changed their tone and are saying I will have to take T4 even though they know this will make me very ill again, they have 'closed their door' on this. I actually asked my GP if this is really the NHS trying to get us all off this, he just smiled but said nothing, he didn't denigh this was true or tell me I am being silly. This has added to my suspicion.
I have emailed my MP and Keith Ridge at department of health
Im beginning to wonder, is it because it is getting more popular & more people are asking for it & trying it, that because of the cost, the NHS doesn't want to pay for it & so are trying to get rid of it. I know my GP in the past has had to explain why i am on it & when i moved, this GP surgery said i had to go back to my endo & get her to write to them saying i needed it (which luckily she did). It just makes me wonder is it all about money ?! If that is the case, it could be all down to how much Mercury charge for it in the first place & the fact they have the monopoly on it in the UK.
No-one putting forward conspiracy theories has yet identified how the anti-T3 people (whoever they are - medics, bean counters, politicians) could have caused Mercury Pharma to run out of Liothyronine. After all, Mercury Pharma (whatever name they have at the time) seem to make good money out of Liothyronine, so I really cannot see them co-operating in any way with making it unavailable.
So please humour me and explain precisely how the current situation could have been engineered?
Unless someone produces a decent argument, preferably with some evidence, I will tend to believe in this:
Many journalists have fallen for the conspiracy theory of government. I do assure you that they would produce more accurate work if they adhered to the cock-up theory.
At my son's last appointment with the endo I mentioned T3 (his is 3.5 - ref. 3.1 - 6.8) and his next appointment has now been cancelled. Very worried now as he has adrenal and diabetes problems also, and am beginning to wonder if he will be seen by this endo again. Really do think it is down to cost.
Does anyone realise quite how little Liothyronine is required?
The entire UK human consumption of Liothyronine (i.e. UK-produced Mercury Pharma product - not imported tablets), would amount to around 80 grams a year. That might be a mere six tablespoons (not sure quite how dense it is as a powder).
But you know how it is, you always think there is another loo roll in the cupboard, another spoonful of sugar at the bottom of the sugar bowl, another packet of frozen peas at the back of the freezer.
Of course that loo roll isn't there, the sugar has gone all hard, the frozen peas have a Sell By of 1995. Or none of those, you drop the loo roll into a bath full of water, you see some dead ants in the sugar, someone nicks the peas to cool a sprained ankle.
Or, as it is such a tiny volume, it got lost in the post from the supplier?
I can't help wondering how much it costs per gram? Do you think diamonds might be cheaper?
Well, you're not a very good housekeeper then, are you! lol Wouldn't let you run my house! Or are you like most men and mess-up deliberately so that no-one will ask you to do anything?!?
It can't cost that much or other countries like Mexico wouldn't be able to sell Cytomel - or whatever - so cheaply on internet. Perhaps we could suggest to Mercury or the BTA or whoever that they source on internet. They might save some money!
Hi Can anyone help I've got 5 days of T3.Daily doses 3 X 20 mcg when do u think the problems we are having subside I have been to 5 different pharmacy to no avail
Have you tried Asda they have a special script programme register with them and they can order you enough to get you by for a month. That is how it worked for me in Hereford. They sourced mine from a warehouse that stores the medication. However other sufferers have found their Asda not to be so ameniable. Good luck. Let me know how you get on message me. It is worrying you only have 5 days left.
I have just had a reply from the secretary of The Chief Pharmaceutical officer Dr.Ridge stateing that MercuryPharma has been working closely with MHRA to resolve issues and new supplies are expected very shortly. He says he cannot be more definite at the moment but would like to reassure me that the matter is being treated as the highest priority by both the company and thr MHRA.
Rod - No, we cant prove that there is a conspiracy theory ,but on the other hand, no one can prove that there isn't. Looking back through some of your replies to other posts, it comes across that you sometimes want to make people look stupid, which ,as alot of us struggle with brain fog & to think clearly, doesn't seem like a fair thing to do to a fellow sufferer. Its obvious you are an intelligent person, who knows his stuff, but please dont belittle those of us who are not so clued up & are trying to learn. It took me a few weeks of 'lurking' on here before i plucked up the courage to post anything due to lack of confidence & am now not sure if i will post again because i dont want to feel belittled. I am not against people challenging my opinion (at all), just please be respectful about it.
Red Apple - I just dont think you can always believe what they say.
Kazatthemadhouse your opinion counts and you are correct in feeling you have been let down and are right to feel supicious of Mercury Pharma, especially in the way that they have dealt with the matter and have taken all sufferers that depend on thier medication for granted. So don't beat yourself up for speaking your mind I respect you wholeheartedly.
Don't worry Rod, stay as you are, I have NEVER found you make people look stupid or have been disrespectful. I always find your posts extremely interesting and informative, and tend to read anything you have said first.
Ok! So Mercury Pharma are saying they are treating the shortage as highest priority.
Well I say that is not good enough they have contributed to putting uneeded extra stress on sufferers that have enough to deal with concerning thier illness.
All sufferers opinions count and they are correct in feeling they have been let down and are right to feel supicious of Mercury Pharma, especially in the way that they have dealt with the matter and have taken all sufferers that depend on thier medication for granted.
If they truly cared about peoples health they would not of allowed the situation to of come to this.
I am afraid thier credibility has gone down in my estimation.
I am with you there which is why I have emailed a couple of newspapers. I could say what I think of Mercury Pharma but it is not printable. I am so worried so I know others are too. The fact is they don't give a s**t. If I am patronised by any more doc's, pharmacists or endo's ( wont go to them anymore) I will go 'into one' and that is not pretty.
Why when I write something does it say delete next to it am I doing somthing wrong here. I am not used to writing on these blogs just I have such strong feeling on this subject
That is to give you the option of deleting your own posts. Basically, anyone can always delete their own posts if they wish. You are not doing anything wrong.
You do not have the power to delete other people's posts so there is no "Delete" next to them. (As an Admin I see a "Edit | Delete" next to every post. But the Admins try to avoid making any edits at all, and only very rarely delete a post.)
In the early days of this forum, that was a very common question. Not sure why it hasn't been asked so much recently. Good that it has come up because there are probably quite a few people wondering exactly the same thing.
I have written to the editor of the Guardian newspaper and many other media sites. I will not stand for our illness being taken for granted.
Dear Sir.
I am writing to you to enquire if you would be interested in helping many worried hypothyroid sufferers that depend on the medication Liothyronin T3.
According to the only pharmaceutical manufacturer Mercury Pharma that supplies the medication in the UK they have they have run out of the main ingredient.
I and many other hypothyroid sufferers depend on the medication and find it extraordinary that the manufacturer has not set up contingencies to help sufferers like myself.
Hypothyroid sufferers that depend on the medication Liothyronine feel our illness is being taken for granted.
Many sufferers as myself are writing to their MP'S and contacting the media.
Given the fact that hypothyroid illness indeed on the list of illnesses that their bodies would indeed pack up if they did not have the medication support to sustain this from happening.
All hypothyroid sufferers are medically exempt from NHS charges because of the seriousness of the illness.
It is a fact that many sufferers like myself cannot tolerate any other form of thyroid medication apart from liothyronin T3.
There is considerable ongoing controversy at present concerning the difficulties that all hypothyroid sufferers are being subjected to and what they are experiencing through unacknowledged and ignored treatment where doctors and specialist endocrinologists are concerned.
The information goes across the board on specific Thyroid support groups such as:
I wonder what would happen if diabetics were informed that insulin was out of stock it doesn't bare thinking about the emergency situation that would pile up.
Myself and many other worried hypothyroid sufferers would be very grateful to you if you would help us bring awareness to our dilemma or indeed help point us the right direction how to raise awareness.
I recently wrote a letter to my local MP in Hereford as below:
I did receive a response from Bill Wiggin stating that he would contact the local NHS trust however given the urgency I believe that given the seriousness of hypothyroid sufferers illness I feel it is being taken for granted.
I look forward to hearing from you soon and hope you could take all hypothyroid sufferers plea in to consideration and report on it.
Kind regards
Mrs. Kerry Bird and on behalf of the hundreds of hypothyroid sufferers that depend on the medication of Loithyronin T3.
Dear Mr. Wiggin.
I am writing to you as a resident in Hereford and a patient in need.
My name is Kerry Bird.
I am a 53 year old wife and mother and have hypothyroidism illness which is
a life threatening illness if it is not treated with thyroid medication.
Due to the illness being life threatening all sufferers are medically exempt
from NHS charges.
Recently it has became apparent that I could not tolerate levothyroxine T4
and must avoid it and that I needed 'T3' (liothyronine) only treatment to
get well.
I am getting well on Liothyronine.
The medication I am on is unique in many ways, but also is 'quick acting'
(it enters and leaves the body fairly quickly: ie couple of days).
Also for some complicated reason, there is ONLY ONE provider for this
medication to the NHS, this is Mercury Pharma.
There is ONLY ONE type of liothyronine licensed in the UK by the MHRA. this
is 'Liothyronine 20mcg' by Mercury Pharma.
If I run out of this medication I will deteriorate EXTREMELY quickly and
within 3 days I may require hospital admission as on the second day of no
medication I already cannot get out of bed as I am in severe pain all over
my body.
When I went to get my repeat prescription from the pharmacy 2 weeks ago it
transpired that Mercury Pharma has a 'production problem' and liothyronine
will be totally out of stock for a minimum of 2 months but Mercury Pharma
predicts this will be a LONG TERM problem.
My pharmacist was unable to source any liothyronine.
I quickly alerted my GP and my endocrinologist at Warwick hospital.
Between them I sourced enough Liothyronine to last me for the next four
weeks.
But now there is NO MORE to be found.
I have contacted the MHRA and they told me the pharmacist has to work in
conjunction with the GP and between them two they MUST source something for
me.
The pharmacist has found an alternative which can be imported but it is ten
times more expensive than the one I am currently on, and other sources are
unlicensed (they are perfectly safe medications, used extensively in the USA
but just not licensed over here).
My endocrinologist already told me that the only liothyronine he will be
able to prescribe is the one which is licensed (ie the Mercury Pharma one),
however if none can be found then what do we do?
I am SURE my local PCT and GP have a duty of care and surely they cannot
decline to prescribe the more expensive version that the pharmacist can
source for me. After all this is only needed during this time of need then
eventually I will go back onto the 'cheaper version'.
Also unlicensed medication CAN be prescribed in the UK, the doctor
prescribing has to take responsability for its prescribig of course, but of
course with no medication I am SERIOUSLY worse off than with it so surely
the GP in this case can prescribe? after all it is the SAME medication/same
ingredients.
After all with no medication I will get too ill to look after myself.
I am acting now, 4 weeks before I run out as I do not want to find I get
admitted into hospital 4 weeks from now. My husband works in Libya and is an
ex hereford forces man when I become very ill because of having no medication my husband
would have to return home this would cause loss of our income.
The unlicensed liothyronine the pharmacist can source takes time to import,
so action is NEEDED NOW or I will not get it in time for when I run out.
Mercury Pharma has already told me there will be NONE until the very least
end of June and most certainly later.
PLEASE I BEG YOU/URGE you to contact my PCT and my GP and tell them they
have to act now.
I am spending every minute of the day worrying about this, please help me.
My GP is XXXXX Hereford.
Many thanks
Kerry Bird.
Edited by admin to remove GP's name (Please don't name and shame identifiable individuals)
I wrote to my MP. He contacted the local PCT and just repeated what they had told him, that I should try other chemists to see if they have any in stock. So doing their job for them in effect. I wonder if I am supposed to try chemists in my area, or chemists in my county, or all the chemists in the country. So what a stupid suggestion.
I was also told to go back to my GP for her to prescribe a substitute.
However all these different manufacturers being mentioned here makes me very suspicious because when I asked the chemist for another brand (liothyronine was on prescription) she told me that Goldshield were the ONLY manufacturers that chemists were allowed to order from. So it is more than one manufacturer then that is out of stock. Also in the answer from my MP he said that the PCT say there is nothing they can do because the manufacturer is a private company.
My MP ends saying he is sorry there is nothing else he can do for me.
The problem is that Goldshield Liothyronine is the ONLY UK manufactured T3. Hence when liothyronine is written on your prescription, this is what your pharmacy has to supply.
For clarity, T3 (liothyronine) labelled as Goldshield is the product of MercuryPharma, who have just renamed themselves again to Amdipharm Mercury.
T3 manufactured outside the UK would need to be specifically prescribed, and your pharmacy would then have to obtain it through an importer. This is not something that a pharmacy can do without agreement with the prescribing doctor and/or PCT.
I'm sorry, but that's incorrect. T3 manufactured outside of the UK does not need to be specifically prescribed by your GP. I took a prescription for liothyronine to my usual pharmacy recently. They told me that Mercury are out of stock, then ordered the liothyronine from their supplier, who obtained it via IDIS. It is Thybon 20 Henning, which is manufactured in Germany. If your prescription says liothyronine, there is no need to go back to your doctor or the PCT for permission.
I agree that the response from Mercury Pharma is not good enough. We need to be advised of a date when production will resume and an effective contingency plan in the meantime.
I am in no way an expert in the supply chain of medicinal products but it appears that holders of a marketing authorisation or distributors of such products have a duty (under Article 81 of the European Directive 2001/83 and under UK legislation - The Human Medicines Regulations 2012 ) to ensure an appropriate and continued supplies of that medicinal product to pharmacies and other authorised suppliers in order to meet the needs of patients.
Not sure what type of licence Mercury Pharma has. I cannot see that manufacturers are subject to the same duty however they must also be distributors or have a marketing authorisation? If so they will be in breach of their duty which would leave them open to "injury" claims by anyone suffering ill health or consequential financial loss as a result of their failure.
I have also found guidance on the department of health website entitled "Best Practice for Ensuring the Efficient Supply and Distribution of Medicines to Patients". Although the guidance is not legally binding, it suggests clearly that manufacturers should have contingency arrangements in place where stock is exhausted and should also set up a dedicated telephone helpline. This guidance has been endorsed by 10 major industry players as well as the Dept of Health.
I am also shocked at the comparatively low prices for this drug in other countries. Why are the NHS being forced to pay such an elevated price for this drug? It seems another case of Rip off Britain. Why is there only one UK manufacturer?
Bombarding the MHRA, local MPs and the Department of Health with individual letters of complaint seems to be a good way forward, although I suspect a letter of claim to the distributor may produce a much quicker result if people do start to become ill and suffer. I'm sure someone would take us on a no win no fee!
I e-mailed Mercury Pharma today and the reply I got was that they did not know when the manufacturing of T3 (Liothyronine) is going to take place, from this reply I get the feeling that it is going to be a long time. Do not know what the best way forward is as all my gp's pharmacy says we will let you know when it comes in.
Update on T3 on TPA hopefully all will be up and running soon. Even if they are doing what they say sufferers that depend on T3 should not have been put in the position of worrying or have to write letters every where.
This is a real worry having had a total thyroidectomy and Levothyroxine does not work what is one supposed to do? This issue needs to be brought to the attention of all the parties that could do something.
I have today received an email back from my local MP unfortunately not very encouraging.
I omitted the names mentioned.
Dear Mrs Bird
Further to my previous message, I wanted to write and update you on my progress.
This week I received the enclosed response from Wye Valley Trust. As is unable to take your case forward, I have therefore written directly to your GP and the Chair Herefordshire Clinical Commissioning Group, requesting that he look into the matter urgently and provider me with a response.
I am sorry not to be able to offer you more positive news at this stage. However, I will continue to do everything that I can to help and find a solution.
Yours sincerely
****** MP
?There was an attached letter from the Wye valley NHS trust which states the trust has no authority over dispensing drugs. Also that they had spoken to head of pharmacy and the advice was that if a licensed drug was unavailable it is the doctors or specialists responsibility to weigh up the risks and benefits of prescribing a non licensed drug.
I sent an email to Mercury Pharmacy on 15th May and have just received the following reply today 24th May
"Dear Sally,
Further to your e-mail, we do realize that many patients are dependent on Liothyronine tablets as their only source of thyroid medication and if they don’t receive their medication on a regular basis, they could suffer from the following symptoms.
Please be informed that Liothyronine tablets will be available for sale by end of next week with wholesalers. All pharmacists and patients can contact our customer services team on 02085889441 to get information on how to place an order.
We sincerely apologise for the inconvenience that patients have been facing due to the unavailability of this product.
Please feel free to contact us for further assistance"
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