Fighting T3 Shortages

[McKenzie]

I haven’t posted a blog before but have read, with interest, so many of those posted on this site knowing exactly what you have suffered or are suffering.

I was diagnosed with myxoedema in 1975, having been ill for a few years before that. Thyroxine made my symptoms worse. You know the story. “Blood levels are normal, so any symptoms you are having are all in your head”. Anyway, I won’t go into the sad sorry tale. I’m now prescribed T3 and although not perfect I feel so much better. Life is good but I’m very angry. There was a T3 shortage a few years ago and it took months to get back to a normal supply. Today, I have one month supply but no pharmacy in my area has any on their shelves and neither do their wholesalers. This seems to be the situation right across the UK. It’s not good enough.

I live in Fife, in Scotland. Here, ‘Health’ is a devolved issue governed by Holyrood.

According to information I received from the Scottish Government, any GP can write a prescription for any unlicensed drug he/she feels is necessary for a patient’s health.

This prescription would be given to a pharmacist who would then have to ask their local NHS Trust whether they would be prepared to fund it. For those of us totally reliant on the NHS, as I am, our battle appears to be on two fronts. The first, to persuade a GP to write such a script. The second, to obtain funding.

I am particularly interested in being contacted by anyone taking T3 who lives within the area covered by NHS Fife. It would be so much better if we could act as a unit, rather than as individuals, when possibly doing battle with a Trust or Government. Those living in other areas might like to do something similar.

I would be particularly interested if anyone could come up with any other ideas as to how we might publicise our predicament.

[helen0701]

Im a bit confused unliscenced drugs are drugs that are prescribed for conditions not included on the license for use. Are you talking about getting supplies from another country, if so a gp doesnt prescribe these it is up to the wholesalers to locate supplies if possible

[helvella in reply to helen0701]

A doctor can indeed prescribe medicines from abroad. One obvious and relevant example is desiccated thyroid.

Nature-Throid, Erfa and Armour are all unlicensed in the UK and yet are all prescribed by UK doctors on the NHS, albeit rarely.

Until recently there was no licensed vitamin D product (without calcium), yet doctors up and down the country were prescribing it.

What you seemed to refer to is often called "off licence" - i.e. for purposes not included on the licence. But yes, you are right that it is up to intermediate companies to source special imports.

Rod

[shaws]

I think that it is Natural Dessicated Thyroid Hormones which are unlicensed. I think GP's should prescribe on a named-patient basis due to the current situation with T3.

In the USA NDT's are called 'grandfathered' drugs because they have been in use successfully for more than 100 years. Nature-throid in particular in 75 years has never been recalled for inconsistent T4 or T3 hormones yet the British Thyroid Association always gives the reason of inconsistency in NDT's for reluctancy in prescribing.

thyroiduk.org.uk/tuk/treatm...

[Karispitit]

I understand your post. I don't live in Fife but think its a good idea as there is always more strength in numbers and god knows we all need the strength. Whatever forms it comes in!

[Thyroidmeg]

I'm in Glasgow I'd like to be tested to see of I'm converting properly this t3 sounds interesting

[Kezzerb]

Hi Mackenzie I was thinking about setting up a group on face book for sufferers that depend on T3 so we can monitor how many there are and we all can help each other out. Also it would be a good way of getting the evidence of how sufferers have improved their health coming off T4 and since going on T3. At least the voices of sufferers on T3 would all be in one place in a group. Sufferers are very worried and their comments are all over the shop and difficult to follow. We can monitor how many T3 sufferers there are and we all can help each other out. Also it would be a good way of getting the evidence of how sufferers have improved their health coming off T4 and since going on T3. If you check out my recent blog I have already written to the editor of The Guardian newspaper awaiting response, I have written to several other news media and my local MP. Many other sufferers have written to their MP'S and press however MP'S take too long. We should not have too go through this our illnesses are being taken for granted. We are all in this together and all our voices and opinions count.

[bossbird in reply to Kezzerb]

omg there is a shortage of T3? im due back to the UK been away on holiday i defo need it after years of trial and error i dont want to go back to square 1 i'm in.

[Finola in reply to Kezzerb]

I would be interested in joining a T3 users group as T3 has given me my life back and it would be great if we were all together in one place and could fight as a unit. Can't help with fighting the NHS as am in Ireland where there is no NHS at all so

I have to pay for all my meds and dr visits

[Poppy03 in reply to Finola]

There is a T3 users group already on Facebook facebook.com/groups/T3onlyS... .

There are a lot of T3 only people on here too along with those that combine T3/T4 and I find it very useful on here.

[Janinit in reply to Kezzerb]

I am definitely up for that... I only have 4 tabs t3 left and my pharmacy is trying to get me some but on telephoning them this morning I was told that they would try to get me some asap... but I was annoyed when he said anyway I have my t4 to keep me going and it is rare for patients to be prescribed t3 as if that was some kind of excuse. I can't tell you my verbal reaction to this. I have not had an angina attack or been depressed fatigued ect., since starting t3 and I won't manage on t4... I think a healthunlocked and facebook page could be an valuable resource of information and support for thyroid sufferers who use t3 to stabilise many varied symptoms

[Janinit in reply to Janinit]

ps., I just want to make it clear that this is a prescription which was put into the chemist on Tuesday....

[roslin]

What i understand, there is a difference btwn a drug being unlicensed which means that it is either used for something that it was not initially intended to treat or for an age group it initially wasn't intended for (e.g. prescribing amytriptaline for children) or it hasn't been licensed for use by MRHA and on the other hand the GP prescribing a drug that is licensed but not on the "list" i.e. the list of cheap drugs that would treat most common illnesses Like in BNF. NDT was in use before the licensing came into existence and in not licensed but can still be prescribed. I don't know if there are any other old drugs in use today like NDT.

Question for McKenzie: I am in Edinburgh, have you come across a local NHS refusing a request to provide a drug to anybody, licensed and unlicensed?

roslin

[McKenzie]

Over the past few days I have spoken to many pharmacists and health professionals in order to try and fill a prescription for my daughter who also takes T3. She is too ill to do this for herself. As I now understand it, there is also a list of drugs which are unlicensed which can be prescribed. As regards T3, being unlicensed does not relate to quality but to strength. For example, someone who takes 20mcg could also take 4X5mcg. I presume this would be much more expensive and therefore, this strength is unlicensed. I can't remember all the different strengths that were available on this list, but I do know the list exists. After being told about this list by one of the pharmacists I spoke to, and then making others aware that I knew, they were much more forthcoming. One pharmacist laughingly told me that one drug she personally knew of had been refused a licence because of its packaging!!! There seems to be an ethos of secracy around this subject which I find very disturbing.

My reason for blogging is that I and my daughter now have one full month supply of T3.

Our GP will not accept a request for a prescription more than a week before you are due to run out. There is no way of knowing how long this drought will continue. I do not want to be in the situation where I have a prescription which I then find cannot be filled, to have to make an appointment with my GP etc. etc. In other words to have to fight the battle then, from a position of fear. I am trying to pre-empt that.

Yes, Roslin, although not personally, I have known of a few cases where licensed drugs have been refused on cost in this area. There is actually a group under the auspices of NHS Lothian you can appeal to when this happens. But obviously, this process all takes time.

[Hiphypo]

Hi McKenzie,

Sorry to hear of your troubles and those of your daughter, she is lucky to have a parent who can care for her so actively.

I'm in Edinburgh. It was only because I randomly logged on here just over a week ago that I even knew there was a shortage. That meant a visit to the Pharmacist to put him on the alert, then to the GP to do likewise and get a script to take back to the pharmacy. It has only been half filled, which means I now have 2 and a bit weeks left. I am on 80mcg T3 only, so a pack lasts a week.

However...thanks to a major co-incidence of a post by Marz about supply in Crete (no prescription req and cheap), and my daughter flying there the next day, I have asked her to try and get a couple of packets. I'll have to wait till she gets back to know if she's had any success. I hope so.

Also, thanks to Numberone1, I have ordered from a reputable overseas supplier - but they will take 5 weeks to come. So I am likely to have a big gap. I need to build up a buffer stock to avoid this happening to me again.

Absolutely furious about this. Not just for myself, but all those others who will fall into illness through no fault of their own. An entirely foreseeable and preventable situation.

On a happier note, would you and Roslin - and anyone else near-ish - like to meet up?

Jenni x

[Mmse1998 in reply to Hiphypo]

Hi. Could you tell me the internet site you were able to buy T3 from?

I am in Uk since August. Have been using T3 since 2008 and as someone else already said:"It gave me my life back!"

Now this new gp here in uk says it is unusual to prescribd T3 and so he doesn't. I am desperate to find it from somewhere without the need of a prescription.

I have already halved my daily intake to be able to make it last longer but of course am feeling this all over..

If you could help me with a site where it is possible to buy it, that would be wonderful!

Thanks!!!!

Take care

[Hidden in reply to Mmse1998]

Answers by Message please - in line with our Guidelines...

Louise

x

[t3rcam in reply to Mmse1998]

If you PM me I will tell you where I get my T3. It is approx £50 for 3tubs of 100 so not that expensive really.

[McKenzie in reply to Hiphypo]

Hi Jenni,

Would love to meet up. Just let me know where and when. I'm afraid I'm very much an afternoon person, but if this causes you difficulties I'll make an extra effort.

I'm very interested in the possibility of getting T3 from a reputable supplier abroad. Would it be possible for you to send me details. I'd be very grateful. Thanks.

[Coachv in reply to Hiphypo]

Hi Jenni

I am in Edinburgh, it would be good to meet up.

Also must try and order some T3, I just found out about all this yesterday!

Val

[helen0812]

I really feel I have missed something here! I was diagnosed with n underactive thyroid 25 years ago with the usual symptoms. Over the years I have doubled in size and I have cold intolerance. I developed a goitre and was then diagnosed with Hashimotos disease and then underwent a total thyroidectomy in January last year. In all this time I have taken various amounts of thyroxine daily -with little difference in my health - I have never even heard of T3 - can someone please fill me in? Confused?

[Hidden in reply to helen0812]

Your body should take the levo - T4 - and turn it into T3 (the hormone which your body actually uses). For some people this process does not work very well, and they feel much better with added T3 or T3 only.

Essentially, missing out the middle man!

Hope this helps.

If you have any further queries, I would suggest posting a new question as comments can often get missed...

Louise

xx

[yogibear_]

I got T3 but it didn't make the slightest difference! Went back to Levo.

[Margaret]

I now rely on t3, I used to take Armour but it become very expensive so when my gp said he would prescribe t3 I jump at it. So very worried about the shortage of T3 not sure if you can now get Armour ok.

[carolpartyqueen]

The reason GP's won't prescribe T3 is because it is ( apparently?) expensive so they are not allowed to. My GP said she would be allowed to if an Endo prescribed for me.

You can buy Liothyronine T3 on line. A site I had been recommended by Dr Durrant- Peatfield. Usually fairly quick delivery. Expensive I know but may be worth getting some to tide you over the drought here.

Edited by Admin in line with our Guidelines