Thyroid UK
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Been taking T3 for years, they have stopped it today, help!

Hello, I'm new here.

I was diagnosed with Hypothyroidism 23 years ago and have been taking T4 at various levels for all that time.

About 15 years ago I started taking T3 due to feeling so rough and having Fibromyalgia.

It had such a profound effect on me, and I started to feel fit, strong and healthy. I managed to lose 3 and a half stone in weight too!

I was summoned in to see the consultant Endocrinologist today and he has informed me that they will not be prescribing anymore T3 due to there not being any credible evidence to support the claims it helps with symptoms of Hypothyroidism. He said the tablets cost many times more than they do in Europe and that has a bearing on stopping them too.

I am beyond devastated and can't face going back to the way I was......I am thinking of purchasing some online but have no clue where to even start looking.....Has anyone had the same experience?

Thank you

29 Replies
oldestnewest

They have nolegalright yo stop a medication you were doing well on

Go to your MP

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If well and stable on Liothyronine, the NHS guidelines say should not be stopped without consultation with an endocrinologist.

If originally prescribed in recommendation of NHS endocrinologist then should be left on it

british-thyroid-association...

See very useful advice and letter templates on Facebook campaign group Improve Thyroid Treatment

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Thank you, that's really helpful. I have been awake worrying most of the night and now I have a massive headache.......

It was originally prescribed by a consultant Endocrinologist and I have been stable for many years, taking me off it merely " to see how I go" seems unfair to me :-(

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"To see how you go" on the most radical change of treatment (T3 to T4) after you have taken T3 all that time is the most irresponsible, ignorant and dangerous experiment that could be thought of. As I've said before, you can't put diesel into a petrol engined car and vice versa and not expect trouble. I continually am openmouthed at the sheer careless insouciance of so called experts who subject patients to huge changes without a second thought as to the consequences.

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I have experienced similar and only found natural dessicated thyroid (NDT) by chance on Facebook stop the thyroid madness group which I strongly recommend you look at. I get mine from an endocrinologist privately because the NHS in west sussex will not recognise anything except thyroxine which does zero for me and in fact gave me several years of migraines and severe mood swings resulting in occasional hospitalisation. I have been well for three years on NDT

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Ahh yes I used to belong to that group, in fact it was where I first heard about T3 I'm pretty sure! I will head on back over there, thank you very much.

I am in Epping Forest District and it is the first I have heard of such restrictions on it's use .

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It's only because if vast increases in price.

EU French or German T3 is approx £25-£30 for 100 tablets (prescription only). Turkish or Mexican is even cheaper

UK it's now over £900 for 100 tablets

dailymail.co.uk/health/arti...

m.imgur.com/a/U42vD

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😮😡😤

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Hehe I always wonder when is the right time to use that snorting smiley! I think the NHS taking T3 off people who've been well on it for years is the ideal time!

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Hi

Slow Dragon has already given some good guidance...

The NHS guidance to CCGs is this at section 4.9.

england.nhs.uk/wp-content/u...

I recommend having a look at the ITT templates and site and unfortunately be prepared for a fight with your GP practice and or CCG. TUK also issued a response on the 30 November to the outcome.

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Thank you, I'm reading that now. I will fight them!

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Others on here can recommend by private message where to buy T3 at reasonable cost.

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Hi, I had a very scarily similar experience myself. I was on both T3 & 4 since the age of 32 (I'm 62 now) and it was stopped suddenly about 2 yrs ago. I don't want to be negative but I've gained almost 4 st in those 2 years until I found myself a private endochrinologist who gave me a private prescription and found this forum and the support from everyone on it. If you want to pm me, I can give you a few European contacts for meds that were given to me on this forum...some of which don't require prescriptions...and compared to UK prices they're much cheaper. In fact a low cost flight to Greece AND the meds is cheaper than just the meds here.

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Does your dr know you still take t3? Along with the t4 they give you? What do they say about that? I am stuck in the unwilli g to diagnose me hypo even though i have all the symptoms for 2 years. I hace tsh of 4.49 at the moment and still no medication. We shouldnt need prescrip for this treatment. Its a disgrace to wait for someone who hasnt a clue about the damage it does being untreated. 💔

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Yes they know about it and they know how much it has helped me with my symptoms but they are still willing to take a gamble on withdrawing it for me :-(

I'm sorry you are suffering so much, it is soooo unfair :-(

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ohhhhh that is what I am worrying about too, the weight gain. I managed to lose ( and have kept off ) 3n and a half stone - and I will not go back down that road!

I have not slept properly since they told me, and last night I was actually cold in bed for the first time in years....might be psychological though!

I will PM you, thank you very much

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Hi, Yes my doctor does know. I had to fight to get him to refer me to a private endo initially but it paid off. When he said I should take T3 along with T4 my GP didn't argue too much and he admitted that he thought it shouldn't be like this but he showed me on his PC how he is blocked from prescribing T3 and he too felt that it is a cost decision and not a clinical one but his hands are tied! I've recently moved house and am changing my GP so I'm thinking of re-igniting my fight...they'll soon regret accepting me onto their patient list!

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That is exactly what happened at my consultation on Monday! He said he still prescribes it in his country and would willingly let me have it but can't........just so so wrong.

I was thinking of changing my GP too but after looking online at the various authorities, i haven't found one that still prescribes it so will fight on with the one I have......and yes I will fight too! These forums are great for empowering you to do something against all the odds :-)

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Clear legal outline that your GP is able to prescribe (should he wish to)

healthunlocked.com/thyroidu...

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Thank you, that's brilliant timing! I spoke to the GP yesterday and stated my case..... She really didn't have an argument. In the end she said if I am struggling and my blood levels are awry after I have not had T3 for 4 weeks, she will reconsider prescribing it for me..... So I am a bit more optimistic now, but I am gathering loads of evidence to support my case!

Thank you again

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See these

It is possible to still be prescribed by your GP

theyworkforyou.com/wrans/?i...

theyworkforyou.com/wrans/?i...

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Oh that's great, thank you!

So, my Endo has said if I am struggling when I stop the T3, he will put forward my case for prescribing it, reading this article makes me think that will be possible!

Really don't know what I would have done if I hadn't found this forum ❤️

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Instead of making patients ill by forcing them off T3, they should be sourcing a better priced T3.

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Absolutely! I don't understand how it is not investigated 😡

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They are fully aware.

Price issue was discussed at length at the London meeting with CCG's.

New legislation came in last summer enabling Government to take action. But nothing happened yet.

pharmaphorum.com/views-and-...

Competitions and Marketing Authority are investigating

gov.uk/government/news/drug...

Some CCG's currently still allow prescription, and the rest will have to follow suit.

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Omg! Anti epilepsy drugs increased by 2600 percent! I am so shocked, but i guess it's been going on for a while, no wonder the NHS is in crisis :-(

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Liothyronine gone up 6000%

Approx £950 for 100 tablets in uk

German or French T3 is £25-£30 for 100 tablets

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Your Endo is the only person who can stop this. Just because your GP has it blocked on his computer is a sign something is amiss. He needs to refer you back to your Endo and find a solution as to how to prescribe it (hand written and surgery stamped prescriptions are fine) s/he should know the rules. Fingers crossed it takes six months to get an Endo appointment as this is ample time to rewrite to your MP and CCG.

Your Gp is breaking the law by stopping it. If you use the search bar to find the link to the CCG ruling as I’m not on my iPad or I’d send you the link.

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Thank you very much for your message, I have the link and have been non stop researching, so much to learn!

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