I'm Susi and I had a total Thyroidectomy about three years ago. I have been taking 3 x 20mcg Liothyronine per day and have felt absolutely fine. However, my GP has told me that the NHS are no longer funding this drug and I will have to take T4 instead. I am quite nervous about this as I did take T4 for a short period following surgery and it was ineffective (for me) as my body didn't appear to recognise it. My husband and I have been researching where to buy a reliable source of T3 that I could afford. It seems that Turkey might be the best place, but I wonder if anyone could PM me a reliable supplier please (or indeed an alternative to Turkey if they have one). Many thanks.
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Susii
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I am on T3 and T4 ... not sure what the T4 does to me really? Just 50mcg of T4 and 20mcg of T3 on NHS. Just ask your Dr to see an endocrinologist at local hospital . Insist upon it! We have to politely fight for our rights. I've had to. They won't test me on NHS for my T3 levels... they used to very occasionally. Now we have to pay. It's appalling.
Also, if you go onto Thyroid UK - there's a test you can pay for privately (unfortunately) that shows a faulty gene that indicates we don't convert T3 to T4. It's called the D- gene .... something orbor other test. Get back to me if you can't see it . Look in private testing area on their website . That will back you up. I will get this test when I can afford it. My Dr said that those 'under the radar' ie; already on it (T3) will be able to remain on it. I wish you all the best. It's hard to push when we have health issues that can make us tired, but we have to. Don't give up! As stated above by someone; if you have a clinical need then you shouldn't have to be taken off T3 or pay. I bought some T3 from a source in Mexico when I was desperate before I got some. It only came to about £100 a year when I worked out potentially the future costing. I expect it's more now. All the very best ! Don't give up!
Thanks BlueMermaid for bringing up the DIO2 genetic test. (Note DIO for "Deoidinase".) I had this test done about 3 years ago and the results came back as having inherited the fault (polymorphism) from both my mum and dad. I think this helped my case to get the T3. Which, so far, hasn't been called into question despite recent developments re. withdrawal. More recently, my mum was diagnosed with a thyroid problem and at her appointment with the endocrinologist I raised the fact that I have the polymorphism and would that have implications for mum's treatment. The endocrinologist was very amenable, knew instantly where I was coming from and said that we would include testing of T3 in my mum's blood tests.
In short, what I am saying is, if you have any further problems with the withdrawal of T3, if you have the DIO2 test results and they do show up the polymorphism it may give "more power to your elbow" (is that the expression??!)
It was very straightforward and one of the best £120 I have spent. Look in the purple boxes on the left-hand side of the Thyroid UK homepage "About Testing". There is a whole section in there about the DIO2 test.
The price does include genetic counselling. I wasn't keen on paying for this, as I didn't feel it relevant. However, the practitioner who rang me up to discuss the results was the head of B.A.N.T. We hardly mentioned genetics, but instead had a really useful discussion about diet in relation to my thyroid problem. If I had paid for this nutritional advice privately it probably would have cost me similar. So, in the end worth it!
Wow! Thank you, excellent information. I feel so much more hopeful now. I will definitely have the test and may, as you say, be in a stronger position to fight my corner. In the meantime however, I only have about a weeks supply of T3, so I will have to buy some somewhere or go onto the prescribed T4, which frankly I'm loathed to do. I know it will just upset the whole regularity of my treatment. But I will have to make a decision super fast in order to receive them in time before the others run out.
I do hope you get sorted Susii. Just for reference, in the section on the DIO2 test on the Thyroid UK site you will see a link to an academic article at the top of the page "Common Variation in the DIO2...etc...etc..." I actually took a copy of this article along to the appointment with my GP when I asked for the T3. I have an excellent GP, who doesn't feel at all threatened by a patient who wants to have a dialogue about their health. She was very interested and asked me to leave the copy of the article with her. It makes for interesting reading. Whatever the results are that you get from the DIO2 test, whether it shows that you don't have the polymorphism/have inherited it from one parent or, like me, from both, knowledge is power! It is another piece of the jigsaw.
Good luck with everything!
PS. Shook my head in disbelief at the 25mcg of levo you have been offered by your GP.
I've been up all night reading literature and subsequently composing a letter to the GP surgery, with copies to Mid Essex CCG, the British Thyroid Association and my MP. It is essentially something that has been badly managed. The fact they new about this directive from their CCG and yet still didn't consult with me, or notify me of any changes....(..I only found out when my prescription was refused with less than a week of tablets remaining,) is wholly inappropriate management. Coupled with the fact that I have at no time been sent to an endocrinologist, with GPs prescribing 25mcg instead of the CCGs recommended 300mcg is a clear indication of how little they know. It's scary.
Well I delivered the letter with all its inclusions about half hour ago and have an emergency appointment with the GP who prescribed the 25mcg. We shall see what happens next. Thank you again for your support, I will seek out the document you speak of when I've calmed down slightly. Susi
Thank you so much for your reply, it's really encouraging and I'm flabaghasted by everyone's help. I have an appointment with the GP (in itself a challenge) on 5th September, to ask to see an endocrinologist. It is completely bonkers as my husband picked up my new prescription for the T4 yesterday, which is supposedly replacing 3 x 20mcg of Liothyronine and he has prescribed 25mcg per day of T4. When I took it before I was taking 100mcg per day and it didn't work. How he thinks this will work I really don't know. Utter madness. It is all quite scary. Thank you again.
Good grief! Does your doctor want to kill you? The equivalent T4 would be about 180 to 240 mcg (but it could take a week to for the conversion to kick in - if you are able to convert)
Make a complaint! Whoever prescribed that has been totally incompetent and is endangering your life. A person with no thyroid cannot live on 25mcg Levo a day, you'll end up in a coma!
If you are looking for T3, there are some people buying from Mexico, but I'm afraid I don't know where. You could ask a new question on the subject.
Greece sells T3 without prescription but the tablet is 25 µg and the price is around 1 Euro 25 cents (just under 2$) per bottle for 30 tablets. Caveat: do not check up with the TSH because it will rise (and fall in 4-6 hours) after each tablet. Follow your own clinical signs and symptoms.
Thank you for this information. Interestingly, I went into an health food shop about other pills to ask the difference between iu values and mcg and they couldn't tell me. I then asked my pharmacy and he told me there is no clear conversion as different substances measure differently 😳So I'm a bit reluctant to swap one to the other if I can help it. But thank you for your reply and bothering to help it is much appreciated.
Thank you for your advice, I'm bowled over actually by the response I've had to my problem on this site and am really grateful. I will go onto your links thank you.
Unfortunately, they have already withdrawn it. I only have one week left and my appointment with the doctor is not until 5th September. I feel very let down, but I don't see what I could do to be honest.
If you would like to make some noise about it, Kitti1 has found a journalist who wants to write about CCG withdrawing T3 well before the NHS England consultation is finished. Please contact Kitti via private message.
Also, are you seeing an endocrinologist? My GP is continuing to supply T3 but won't increase the dose to the level I need. But my endocrinoloist can take over prescribing if there is clinical justification. (He isn't keen, but hasn't refused!) Worth exploring? Or if your endocrinologist won't prescribe, change to one who will?
Hi Coppernob, amazingly, I have never seen an Endocrinologist and had my surgery done by an ENT specialist. And have happily been on T3 ever since. (After a short bout of T4 which didn't work) . At least, until now. My husband has just run off the CCG directive for our area and it appears I can ask to see an Endocrinologist, which I will certainly do.
I am so grateful for yours and everyone's advice and am overwhelmed really to have come across such helpful people.
Hi Susii, there was a post from Lintaby about 18 days ago saying she had a named prescription fulfilled by Boots for German T3 which only cost the NHS £35! Might be worth researching !
Thanks for mentioning this. My pharmacy (Lloyds) are struggling to fulfil the whole of my current prescription of Mercury Pharma T3 by "use by" date. I have posted about this a couple of times recently. When I went in last week I asked about the German Brand Thybon Henning and was told that they can only deal with certain suppliers (i.e., Mercury Pharma for Liothyronine). It is on my to-do list this week to trawl around a few other pharmacies locally and ask them if they are willing to go with Thybon Henning. Will check out Boots.
Hi MacG, the brand she got was Sandoz. If you go to 'posts' at the top of the page,sort by 'popular', scroll down you will find her post where she explains in detail how she managed it 😊
My MP Liothyronine has been very short-dated this year. Lucky if it lasts the prescription period. Had to have the prescription fulfilled in batches. I am also thinking my existing batch is defective. I think i will start a new thread to ask others.
Yes I also have been experiencing BAD symptoms with this batch of T3 84118, head issues, numbness, shakes, night sweats, fatigue to name a few I actually just made a new post to see if anyone else is experiencing anything with this batch number. My t3 is at 11.3! and the gp and Oncologist say im over medicated and reduced my dose.
Hi Susi, I had my TT 7 years ago and have been on 60mcg T3 over the last 5 years.
I run a FB group for people who have had their thyroid removed and there is overwhelming evidence that T3 is required by the majority of people with no thyroid. It is such strong evidence that I believe that people with no thyroid have special clinical requirements to be given T3 to maintain any quality of life. We will be campaigning on that point as those of us without a Thyroid are a very distinct subset of thyroid patients with very distinct needs.
You must keep fighting your GP for T3 to be continued on that basis. Message me if you require any further details.
Thank you very much. I'm feeling so much stronger to fight my corner now. So much fabulous advice. I will certainly insist on seeing an Endocrinologist as I feel without a thyroid it should be my right surely? I have no parathyroid glands either, as these were inadvertently taken during surgery. Under the circumstances I think I should be monitored properly by someone qualified. I have a copy letter from my GP to an Endocrinologist asking for advise when my last blood results came back, saying that he has no experience or knowledge of T3 and not sure I should be taking them. He apparently wrote back and they stopped my mess on the strength of a letter from someone who hasn't even seen me. I'm definitely fighting.
I take T3 with T4. I have learned that taking a supplement of selenium ....easily obtainable from a health shop.....helps with the conversion of T4 to T3. In fact I have lost a pound or two since taking it and I am not eating less or differently. Worth a go! I have other autoimmune diseases and the only way I can continue on T3 is via the rheumatologist I see at the hospital.
Hi there, I complained to my local CCG and MP when my GP surgery said they couldn't fulfill my hospital issued t3 prescription any longer because the CCG had "banned" it. The CCG have reinstated my t3.
I have been on 100mg Levo + 60mg lio for about 8 years. Last year I had a lot of problems with pharma lio and asked to change to an alternative. It took a time to persuade my gp to agree. He then said he was not allowed to make the change, I had to see an endo. It took three months for an appointment. When I got to the hospital, my appointment had been changed to a student! She was very helpful but was not allowed to order a change or advise me. I don't know why I was seen by her. There was no endo on duty - she was being supervised by a consultant in another specialty. It took several more days but the student did finally get authority to switch my lio to Perigo.
I now get a prescription from my gp for "Perigo ONLY". It took another couple of months for my local Tesco pharmacy to arrange it's import from the States.
My own experience is that T4 alone does not work. I was on only T4 for over ten years and I was never well. After starting T3, I have been a lot better.
It has been a constant battle with gps who insist I should reduce meds - mostly T3 as it costs more. I find if I reduce T3, I get lots of stomach problems - cramps and tummy upsets and a constant severe headache. I'm also really tired. If I reduce T4, I'm really tired but the main problem is my apetite. I'm really starving all the time, constantly eating and my weight goes through the roof.
Whilst I was trying to sort Perigo, I did order lio from Turkey. I found them very helpful but it does take about three weeks to receive the pills. Also there is a minimum order which I think was £70 + postage. That would have lasted me over 5 months. I only actually took them for two weeks. I had no problem with them.
I have learned over the years that I have to fight doctors constantly to obtain the meds I clearly need. Don't accept it when they say you have to reduce or stop meds. It is an uphill battle but unfortunately one we thyroid sufferers have no choice but to fight.
Thank you for reading my post and bothering to reply. I am very grateful for your information and can certainly make use of it as I have been considering Turkey as a supplier, although my husband has recently found a pharmautical supplier in India too that we are considering. It all seems a minefield.
I agree with Shaws: don't give up so easily. People are still having their T3 prescribed although they have to fight for it.
Have you had an official letter from your GP or CCG regarding the withdrawal of T3? We have a journalist who is interested in writing about T3 withdrawal. Specifically: the fact that CCGs are withdrawing T3 although there is still an ongoing consultation regarding T3 and the decision has NOT bee made yet! She is looking for people who have had their T3 already withdrawed. Contact Kitti1 via personal message for details.
Giving up the fight won't help you. Screaming out loud that your health is being put at risk, making a case for it and getting publicity will.
Hi Susi, "...The NHS are no longer funding this drug..." is untrue. The review is not complete. I have taken T3 since 2012 and saw my Consultant mid July and was told that I was someone who would need to remain on T3. He has increased my dose and told me to get the 5mcg tablets so I can better split my dosage. I showed him the results of the DIO2 gene test (+ve) and he wasn't interested, stating he would have to refer it to his genetic colleagues, but then gave me back the report! I would encourage you to go back to your GP and insist on a referral to an consultant endocrinologist.
Thank you for this support. I am definitely going to see my GP to insist that I see an Endocrinologist. I feel, having read everything here and the wealth of replies, that it has been wholly wrong that I have never been sent to one, given that I have no thyroid or parathyroid glands either. How can unqualified people make decisions about my medications? Thank you again.
There are many people on here who have to buy their T3 including me. I get mine from Cyprus but ask Clutter, she will send you a list of people who you can buy from. Good luck.
How do I contact clutter please? My doctor told me today that he has many patients who are fighting the PCT and would look at alternative sources if they could, he asked me to email him details!
That's dodgy. I don't like the idea of doctors getting the details of our suppliers. Then need to be opposing the T3 ban, not asking their patients to buy medication abroad!!!!
I don't think he was dodgy kitten but considering alternative options if patients are not able to get prescriptions if there is a problem with the supply,which has often been the case for me when I have presented a prescription to the pharmacy. He is very pro T3 and happy to prescribe if my GP is no longer going to ( which is not the case yet).
I would be very unhappy about GPs knowing our sources of thyroid meds, because if they start passing the info around you can bet that some of them would love to stop us getting what we need.
Since they can write prescriptions they can source T3 from proper pharmacies in places like France and Germany without having to go through all the shenanigans that we do in finding sources that don't involve paying in weird and wonderful ways. So they don't need info from us!
Hi Susi, this is not the NHS no longer funding , it is a decision your local CCG/GP has made. I am aware that the prices have grown substantially and that's the pharmaceutical companies are trying to reap the rewards rather than an increase in production. I am aware that 28 tablets cost £250 which is extortionate! Lobby your GP/CCG. Push the cost to the GP/CCG if you are not healthy later in life as a result of having this medication withdrawn from you.
Thank you for replying and passing this information onto me. My husband has now run off the CCG directive for our area and it makes interesting reading. Plenty to fight.
Your Doctor has no right to say that the NHS are no longer funding T3. They are doing their best to get as many people as possible off the T3 due to the cost, but they can still prescribe it if it is proven that you need it.You may need to insist on seeing an Endochrinologist, they are the ones who can prescribe it.I have been on T3 and thyroxine for 16 years. Early this year I agreed with my Doctor to try Thyroxine only,on the basis that if I didn't feel well on it then I could go back to the T3.I was referred to the Endo before the trial,who also said that I could have the T3 back if it made me feel better. I could not tolerate any more than 75 mcg of thyroxine due to palpitations and high blood pressure,and this wasn't enough on it's own without the T3.My doctor said that it was justified that I needed the T3, and put me back on it.I have no thyroid either, and a percentage of T3 comes directly from the thyroid gland, so someone without one is not going to feel well on thyroxine alone, and if you also have Hashimoto's then you can't convert from T4 to T3 very well either. You just need to stick firmly to your guns, print out the details from Shaws and take it to your Doctor/Endo.
Thank you so much for your reply. It is obvious now what I have to do. So many of you have kindly replied to my initial message with similar advice. I will certainly take this matter back to the GP armed with so much more information.
Tell them they are forcing you to buy unregulated drugs from abroad and they'll back down. My GP tried to tell me the same. Every now and again the pharmacy questions it.
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