Has anyone else been told that their GP is going to de-prescribe Liothyronine (T3) and what did they do about it? I've been taking T3 as my sole medication for 15 years since I had thyroid cancer. I am perfectly healthy and happy on it. I have now found out that my GP is going to stop my Liothyronine completely and move me to Levothyroxine due to Worcesters new CCG guidelines, which are wholly financially motivated. I've checked Thyroid UK's campaign documents and it appears only a specialist Endocrinologist should do this and that GPs can and should prescribe on need rather than cost.
I've also looked at the difficulties with moving from T3 to T4 and they look to be way beyond what an ordinary GP can do. It also appears that NHS guidelines mean CCGs should not impose blanket bans on prescribing T3. With no thyroid tissue at all I have wil produce no free T3. I'm not even sure my body would know how to convert T4 to T3 anymore let alone efficiently. I have friends that have blossomed when given T3 in addition to T4 and I know from this forum and other places how T4 alone is not always the answer.
Has anyone else had this problem? I notice several other CCG have done the same but others continue to prescribe T3. How have those in areas that have de-prescribed coped and did they manage to get treatment from an endocrinologist rather than a GP as per the NHS guidelines. I also note that others here have managed to buy T3 privately. How did they manage that and where from and was it affordable.
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katemary
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Make an appointment to see your local MP and write to Lord Hunt and I'll give you a couple of links. Doctors and endocrinologists seem completely unaware that T3 is a life-saver considering it is the only Active Thyroid hormone required in our millions of T3 receptor cells. It doens't need converting. Levothyroxine (T4) is inactive and has to convert but may not be optimL.
NHS England approved liothyronine for thyroid cancer patients prior to running tests, not as long term treatment. Nontheless it is very important we kick up a fuss and make formal complaints when this happens.
The same thing happened to me, and although I'm campaigning, I'm buying T3 from Germany as (I hope) an interim measure. My GP writes me a private prescriptions (costs the NHS nothing) for liothyronine and I buy it from an online pharmacy.
My GPs were horrified to hear how much the cost of T3 had been increased in this country and how cheap it is other countries- they had no idea. That was what persuaded them. But yes, they are helpful.
Hi Quokka, would you be very kind and pm me the pharmacy details of your German supplier of t3. I am in the same boat. I can get a perscription from my doctor, but have to sorce my own very soon.
This link has a couple of sites. thyroiduk.org/tuk/treatment... It's okay to write about them on the forum as they're prescription only. I've recently had some Thybon20Henning (20mcg tablets) delivered from mycare.de mycare.de/en/online-kaufen/... I sent a letter in English with my prescription to say what I wanted (not signed for as it goes to a PO box.) Then I used their online order form- it' s in German but just the usual- name, address, etc. After 2 or 3 days they sent me an automated email. It's in German too, but it just tells you to pay, and gives their bank details. You have to add 17EUR for delivery. My T3 arrived within a week of payment.
Thanks everyone, that is all really useful information. I was blithely informed of this life changing decision by my GP's receptionist and then told I couldn't actually see him till the 20th! I've finally fought for a phone appointment tomorrow.
I am in the same situation and am waiting to see an Endo but my Gp has refused any prescriptions while I am waiting for the showdown appt with the Endo. I have lots of ammunition lined up for the Endo having been on T3 only for over 7 years as I don't have a TSH to drive the thyroid system in any form as a result of a head injury. The Gp is caught between me raving at him that I am going to die- quite true- and the CCG dictating that he cant presribe it any more while the NHS says I can still have it because I can demonstrate that I need it. I have an appt this afternoon at 4pm with the Gp so watch out for the fireworks!!!!! I am NOT giving in!
See above my response of what we should do if T3 has been withdrawn. I think the worst is that it was withdrawn without any forewarning and many left with no T3 at all.
This is precisely why, in spite of my still picking up my regular prescription for T3 from the GP surgery, I have also bought a supply in so that, in the event of them doing this to me I still have a couple of months' worth of supply to give me time to get some more from elsewhere. But this shouldn't be happening at all! This is not just something that provides us with 'uppers', this is an essential hormone replacement therapy that keeps us alive and functioning as normally as we can! Would they suddenly withdraw insulin from diabetics or HRT from those who need it to get them through the menopause? I doubt it... T4 monotherapy is about as much use as t*ts to a bull to those of us who cannot convert the damned stuff! So far, there have not been any problems with supply in Wales, but I guess that, by being lumped in with England on everything else, they may soon start turning their eyes on us too (especially when our endos are based over the border in England...)
I agree wholeheartedly with you. Those of us who need T3 to have life flood into our bodies once more shouldn't have it withdrawn at all. To add fuel to the fire, is to have it withdrawn without any notice at all - no forewarning.
I assume that it is the Endocrinologists, who were happy with this decision as, for years, we've been told by them that levothyroxine is the perfect replacement. They have listened too long and taken too much notice of Big Pharma and many of us would like to know who received what from whom! I would also like to know the cost of supplementary medications prescribed to try to control the miserable clinical symptoms and ruining people's lives and maybe their families too, and also unable to work.
I bet it'll be a damned sight more that the exorbitant price they're paying for the T3, but I did hear somewhere that GPs also get backhanders for prescribing things like statins and antidepressants so perhaps it's in their own interests after all...
Do not give up. Firstly, as others here pointed out to me, the CCGs are in the wrong. Secondly appendix F of the link below is a letter from Lord O’Shaughnessy that clearly states no action can be taken against any doctor that goes against their CCG. They can prescribe! I’ve had a long heated discussion with mine using all the stuff from here (for which I am really grateful) and he has agreed to keep me on it. Keep ranting it’s the only thing
How did you get on Heather.Im in a similar situation...i have it for now only but need it for life...i cant purchase anything cheaper from abroad as mulyiple allergies dictate.i wont survive without it been on t3 only gor 7 years
The original appt turned out to be a triage phone appt and I was told that I needed to be seen by an Endo and basically I am still waiting for an appointment some 6 months on! I had a show down with the Gp using some of the points in this thread and he did back down and has been providing T3 prescriptions whilst I am waiting. This has given me time to gather lots of evidence to dump in the Endo lap. Basically I wouldn't be in his shoes when the appt does come round because I am still determined to fight all the way and I will use the media if needs be. My prime evidence is the fact that it's now 8 years of T3 succesful treatment whereas I nearly died on T4 or T4/T3 combo. Secondly I have a printout of the NHS website that says T3 is ok for those who do well on it. The CCG cannot override that no matter how big they think they are.
I have built up a good supply of T3 as a buffer just in case but am still watching the post with bated breath.
There is a Facebook page called ITT. It’s a campaign page that’s fighting for t3. They will help you compose letters etc and tell you best way to go about things. I know a lot of the ladies are on tuk and HealthUnlocked. You will get good support. Good luck
Thanks to all of you for your help. Every bit of info given was useful and was used! I had a very long, acrimonious and emotional phone appt with my GP and he’s agreed to keep me on T3 for the time being. M
What I did if it’s any use to anyone else was take all the facts given here and wrote myself a brief crib sheet so I couldn’t be gas lighted and didn’t have to hunt through pages. That suited me tho it might not be for everyone. I split mine into:
CCG - the fact they cannot impose blanket bans, going against NHS England guidelines etc.
Health Benefits of T3, the fact I was stable, healthy and happy on it and had been for years. Lists of negative consequences of converting to T4 etc and changing from a stable state to an unknown for no medical reason. Any lists you can find are useful.
GP responsibility to patients - including the fact that they can go against their CCG and there is nothing the CCG can do. Their contracts state they should prescribe on need. The overarching principal of the NHS that the patient is at the heart of the NHS. Service is based on clinical need not cost. They may lose a prescription inventive payment if they go against their CCG but the very fact they’re getting that negates above guidelines that care is based on their professional judgement not cost.
Costs - the total cost of liothyronine is £34 million. That’s due to poor NHS procurement not me. The cost is not absolute because they still have to provide T4 and deal with any unintended health consequences. The cost of lifestyle related disorders (obesity, smoking and alcohol) is about £10 billion meaning liothyronine is a drop in the ocean. Why pick on easy vulnerable targets like a group of patients when it’s a huge NHS funding issue
Armed with that we had a horrible phone call. Do not give up. Start with no medical reason to stop, purely cost. My GPs response there was yes but also no medical reason to stay either and could go on T4. The answer to that is that transition is not known. GP would be moving you from a stable happy state to an unknown state which is not good practice and enough people don’t cope. The transition is not smooth, the consequences unknown so that argument is null. If no costs there would be no change. Ask for full written assurances you will feel as well. They can’t and won’t give that so you have an edge.
Mine did the CCG thing. I just responded with the fact he could go against them. His contract said prescribe on need. The principals of the NHS were patient need. Why become a doctor if that is not your rationale, why not be an accountant instead.
He tried a bit of guilt tripping, this was a good way to save money without harming patients because I’d be as well on T4 and others could benefit from the savings. The answer to that was medically exactly as above - no evidence I’d be fine plus the cost of lifestyle related illnesses were far greater than my costs plus I was not to blame and should not be penalised for poor NHS procurement. He was picking on an easy vulnerable target for peanuts. He was deliberately compromising the optimal health of one patient for extra money and that was his choice. Keep pointing out it is their choice to compromise your health not the CCG etc.
Let them know you are not giving up without a fight. Let them know you’ll fight every step of the way, write to the world and it’s dog if necessary.
We went round and round the above, I got extremely distressed and just wanted to put the phone down, especially when I started crying as I hate being seen as vulnerable. I hated my voice shaking as well. I am still shaky now after 24 hours. Do NOT put the phone down (or walk out if it’s face to face) tho. It’s horrible and upsetting but keep fighting.
I’ve been incredibly lucky this time but I don’t know for how long. I cannot say how grateful I am for the info and support I got here. You are all brilliant
Well done! My GP said this is happening to a number of drugs and they're told to prescribe a cheaper version. But there is no alternative to T3. (There are no restrictions in this country on what can be charged for generic drugs.)
And me too. I got a letter and a summons to appear. No, more of a demand to book double appointment to discuss liothyronine. They want to stop prescribing it. I've been on it for about five years. I was initially t4 only. Felt crap but then i'd felt crap for 8 years so it became my normal. Fuzzy headed, tired all the time, everything an effort etc etc. Got an endo appt and to shut me up prescribed 20 mcg lio and 150 mcg levo. I had done sone research and really wanted advice and support. They initially looked at cushings disease but i didnt think i had that. I was fine for a while and then rereferred. As a stab in dark tested for coeliac disease. No symptoms apart from feeling drained. But i have that too. So now 2 years later am strictly gluten free, still on 20mcg lip and 150mcg levo and am generally ok. Have hit menopause so have my ups and down re energy levels. It's a complicated mess. I'll take my evidence with me and see what happens. I'm in Scotland. Nhs Tayside is my health board.
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