Liothyronine cost: Was pulled in to see my... - Thyroid UK

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Liothyronine cost

Colliemad
Colliemad

Was pulled in to see my consultant today to be told that my liothyronine won't be prescribed at present due to cost!! Yet all my levels are the best they have ever been since I had my thyroid removed 8 years ago. To say that I am not happy at all is an understatement. CCG says no clinical evidence it's needed..... Well watch all my levels go completely out of whack and then say I don't need it. Drug companies should be ashamed holding the NHS and patients to ransom. Not looking forward to being tired all the time again!!!

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T3 is not supposed to be withdrawn on cost grounds from patients who are doing well on it. Appeal this decision: write to your CCG, MP and any other relevant person or body you can think of.

Colliemad
Colliemad in reply to Hillwoman

The consultant was pretty annoyed about it. I have to go 12 weeks without it and then go back to see the results. Which I know are going to go backwards. If they don't give it back to me I will appeal it. Thanks for your help.

Hillwoman
Hillwoman in reply to Colliemad

This 12 week period really won't do you any good. Diogenes/Dr John Midgley on the forum has referred to the body's fixed response to a particular thyroid treatment regimen as "allostatic epigenetic transformation". In other words, we cannot readily adapt to abrupt changes, and we may never adapt at all.

CCheale
CCheale in reply to Hillwoman

I'm having similar struggles Colliemad. My GP's are telling me liothyronin is red labeled and therefore they are not able to prescribe as a result of CCG's. I argued about the clinical effectiveness of someone who has low T3 results and is stable on T3 for nearly a year and they say there's nothing they can do. How can this be possible?

Colliemad
Colliemad in reply to CCheale

I have no idea how this is possible. Thyroxine and thyronine together keep me functioning. If my levels change drastically and I go downhill... Falling asleep, brain not functioning and have no energy again... I'll go to my MP and the CCG. What baffles me most is the consultant even agreed that with the combination I'm on you wouldn't know I didn't have a thyroid on checking my blood results!!! One very anxious bunny at the mo!

CCheale
CCheale in reply to Colliemad

Oh I am so sorry :( I can totally understand your anxiety. Is it worth contacting your MP and CCG now rather than waiting for your two month trial off of it? I feel fortunate that I have a thyroid but I know exactly what you mean about the symptoms when the T3 is removed. I was off of it for 2 months nearly 2yrs ago and it was a horrible time. I, like you, am terrified of going back to a life like that after feeling so good for so long. I get it is expensive, but so are all the other effects of taking us off the T3. And it is completely unethical to withdraw medication from those who clearly need it. If T3 wasn't something to be treated then why is there a blood test, a range for where levels should be, and a medication to treat. If we had cancer or diabetes they wouldn't be taking away our medication. Wishing you the best of luck. Keep us up to date.

Zephyrbear
Zephyrbear in reply to Colliemad

By that time you will be beset with so much brainfog and apathy you may not be able to argue your case and they'll have won again... My advice would be to start fighting it now while you still have the wherewithal to do so...

Don’t worry.....I have seen a nutritionist for the same reason and it can be sorted. I was on 100 mcg Levi and 10 of liothyronine for years. Had to halve a 20 tablet. However, now I take 125 of Levo only plus the important supplement....at the same time.....of selenium of 200 mcg in capsule form for quicker absorption. My levels are fine, in fact I think I may have to take a bit less 25mcg. Selenium helps the conversion of levo T4 to the active T3.

It has worked for me and it is mentioned in Dr. John Briffas Medical book. He is an eminent doctor who was writing for a newspaper.

Nutritionists have so much knowledge and mine has really sorted out my body because I have several autoimmune diseases.

SlowDragon
SlowDragonAdministrator

BTA statement on this

british-thyroid-association...

Clear legal outline that you can be prescribed

healthunlocked.com/thyroidu...

Write or, even better, go see your MP. Also write to Lord O'Shaughnessy, lord Hunt and Vince Cable

theyworkforyou.com/wrans/?i...

See Improve Thyroid Treatment campaign on Facebook for lots of helpful info and letter templates on how to fight this

Look up your local CCG guidelines on Liothyronine.

These are terrible times we are living in. Please appeal this decision.

I think GPs are only too aware that people are buying their medications online so don’t feel too bad to cut off our supplies.

What worries me the most however is all that is happening in America with the net neutrality etc. And all that is happening under the guise of FOSTA and SESTA. It’s too technical for me to go into detail on here, but you only have to look online to see that there are attempts to censor the internet like never before all in the name of preventing human trafficking,which it won’t.

Recently I moved my websites off shore and read through the company’s Terms of Service - they allowed pretty much everything other than illegal acts such as human sex trafficking which of course no decent human being would object to, but this was one line. What followed next was the selling of medication that took up several paragraphs.

Here in the U.K. we have the Digital Economy Act and it’s age Verification in pornograpy etc that is set to come into force end of this year. So anything deemed as “adult content”would be put behind a Verification paid for paywall. This is how they censor : protect the children’s eyes. It’s merely an inroad and they will start censoring a lot more off the back of this.

Mark my words this is only the beginning. In the future we will be buying NDT and T3 off the dark web alongside the drug dealers and human traffickers.

Hillwoman
Hillwoman in reply to Helena877

I have wondered what the end of net neutrality meant for people like us. Thank you for making a complex subject a bit clearer, although the outlook for self-medicators looks grim if it all goes down as you predict.

If it is purely cost ask for a private prescription. With the help of this site I was able to use it to order from a German pharmacy, cost in the region of 39 Euros for 100 x 20mcg which will last me three months.

Good luck

Jx

Helena877
Helena877 in reply to JennyC2

Jenny - a lot of GPs won’t write private prescriptions.

Fair enough, maybe I was just lucky 😀

Jx

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