T3 prescription is being withdrawn-help!

[Bolton70]

I've just found out that my GP will no longer prescribe my T3. I'm devastated and terrified. I can't go back to T4. It made me so ill. Does anyone have any suggestions for what I should do now?

[shaws Administrator]

I think you should see your MP for a start but it seems to be spreading at present - the withdrawal of life-saving hormones.

You could also give your MP a copy of new research that states that T4 and T3 is required. Tell him also that you dont want to develop other new diseases if you aren't optimally medicated. The BTA has a wonderful excuse - it's too expensive but why have the Pharma Company raised price so high and there are other less expensive T3s which can be prescribed on a named-patient basis but doctors don't want the responsibility.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Your MP can speak to Lyn Mynott of Thyroiduk.org.uk who started the site due to her not recovering with levothyroxine. Also TUK is a receommended NHS forum for information about dysfunctions of the thyroid gland.

[Clutter]

Bolton70,

Ask your GP or Practice Manager to put the reasons for withdrawing prescription of T3 in writing. Then write to your local CCG (cc your MP) attaching the letter and appeal the decision explaining the difficulties you had on T4 only.

[alderney]

My gp stopped prescribing T3 so I went back to the hospital

to get my prescription made up.

[Hidden]

The more people like you talk about this on the forum, the more chance there is of our sources being discovered and shut down. Not to mention that you don't help the cause that UK people need to have this prescribed and not resort to buyung potentially dodgy products through the internet. No wonder the rules here have been made stricter.

[Hidden in reply to Hidden]

It's a difficult one this isn't it? Nightmare scenario. As you'll be aware, the NHS are slowly but surely getting people off prescribed T3. Then they'll close down our imports because T3 is deemed dangerous or some other ridiculous made up fact. I think writing/seeing an MP will achieve nothing. That's my gut reaction - I haven't written yet. The Scottish petition has so far produced nothing (that I'm aware of) tangible in terms of thyroid disease being more comprehensively treated (the way it should be). Maybe someone can list the achievements gained thus far? All the continuous slating and slagging off of the BTA and endos in general does no good - if anything it probably makes things worse as it gets the backs up of those with the keys to the T3 cabinet.

As if we didn't have enough to worry about.

[Hidden in reply to Hidden]

Yes I really do worry not just for myself but all of us in the UK who have to resort to buying our own. For a while it seemed as if the NHS endos were being willing to let us try different meds, and relaxing the rules about only prescribing levo. But then the prices of other thyroid meds got jacked up so high, it's gone ten steps backwards again. If our import facility gets shut down, what hope is there. I feel the tears welling up even thinking about it.

[Clutter in reply to Hidden]

Guthoo,

It is legal to import T3 currently. A change in the law would be required to restrict people importing T3 for the use of themselves or their households.

If people don't complain to their MPs and ask for support then there will be no awareness of the distress and illness caused by withdrawing T3 prescriptions.

[Hidden in reply to Clutter]

Clutter,

I sincerely hope a change in law doesn't come. I mean, thinking about it, why would that happen if we're just buying meds for our own health?

I take your point re MPs but I just think we need to do more collectively rather than having fragmented responses as individuals. Will MPs see the magnitude of this problem if we individually write to them? I know it's better than nothing. My MP is pretty hopeless in all reality unless it involves the economy. I've read for years about people writing to their MP and the problem is just getting worse, not better. More needs to be done.

Surely there are organisations, such as ThyroidUK, who can deliver a much more powerful message of the needed change? Or, are the powers that be just not listening? Do they not know the sheer scale of the problem? If not, why not?

The Scottish petition, last time I looked, was just one side pointing the finger at the other and vice-versa. Seems the cogs of change are very difficult to turn. Stalemate isn't good. Will check to see what's happening.

Surely, given the current pricing disgrace for UK T3, there should be public outcry. The majority of people in the UK, whether taxpayers or thyroid patients, have a vested interest in lower costs for medication. This is not aimed at you personally Clutter Just a bit sick of the tail wagging the dog.

[Clutter in reply to Hidden]

Guthoo,

Thyroid UK and other thyroid fora and charities do make representations about diagnosing and medications. It takes a very long time to persuade medical bodies that change is required. From new evidence based research to acceptance and implementation is usually around 17 years.

The Scottish Parliament petition is continuing but proceedings are very slow but probably not more slow than expected.

The Times ran a series of articles in June castigating the rip off prices Concordia was charging NHS for Liothyronine (T3). Companies which have made huge price hikes are being investigated.

healthunlocked.com/thyroidu...

[Clutter in reply to Hidden]

Gingerbread,

Please don't blame discussion on the forum for the withdrawal of UK prescriptions. People are buying T3 online BECAUSE their T3 prescriptions are withdrawn or because they can't get T3 prescribed. Online buying is NOT causing withdrawal of UK T3 prescriptions. CCGs are claiming there is a lack of evidence that T3 is beneficial but most of us suspect the real reason is the extortionate cost of Mercury Pharma T3 since Concordia bought it.

[Bolton70]

Thank you to everyone who has contributed to this thread- you have all offered invaluable information.

I have today written to my MP enclosing the paper disputing the evidence that T3 isn't effective. I also included the response from Jeremy Hunt who assured us we could still have our prescriptions.

I have also written to my GP- who has made the decision and to my Endocrinology Consultant who did not but maybe caught up in this unjust craziness. I have told them I will never again take Levothyroxine and that I am rationing my T3 to eek it out.

I will keep you posted about my progress.

[Hidden]

You are right John, I am too old to fight for something that might not change and jeopardize my health by not taking T3 just because NHS won't give it to me anymore. I am also ordering from Greece, it's not expensive so I can cope financially somehow.

[RedApple Administrator in reply to Hidden]

Hidden Hidden

I think I missed something. Who is saying you should not take T3 (other than your doctor of course)? Can you not continue to self medicate but also help to fight for the bigger cause of getting T3 re-instated on the NHS for everyone that needs it?

[Haze1975]

Why would anyone tell you to stop T3 if you need it.

[Clutter in reply to Haze1975]

Hazel1975,

Probably because the cost of 28 x 20mcg tablets has been hiked to £258+.

[Haze1975 in reply to Clutter]

Thanks cluster. I was just wounding because I take levo. and was wounding if they were going to stop that too.

[Clutter in reply to Haze1975]

Haze1975,

There is competition among 4 current suppliers licensed to provide Levothyroxine to the UK so it's unlikely they'll all decide to rack up 10,000% price hikes which might make some CCGs wonder how necessary Levothyroxine is.

[Haze1975 in reply to Clutter]

I think I'm classed as necessary. I don't have a thyroid anymore. Unless there a different tablet I can take?

[Clutter in reply to Haze1975]

Haze1975,

Liothyronine (T3) and natural dessicated thyroid (NDT) are alternatives to Levothyroxine but you probably won't get them prescribed on NHS.

[Haze1975 in reply to Clutter]

So what will happen. I lost my thyroid to cancer. And no one has stopped my levo yet. or called me into the doctors yet?

[Clutter in reply to Haze1975]

Haze1975,

Why should anything happen? No one has suggested Levothyroxine will be withdrawn.

[Haze1975 in reply to Clutter]

I thought that was t3 as well.

[Clutter in reply to Haze1975]

Haze1975,

Levothyroxine is T4. Liothyronine is T3.

[Haze1975 in reply to Clutter]

Thank you.

[helvella Administrator Thyroid UK in reply to Clutter]

Did you notice that a member responded saying liothyronine in Australia is under 50 Australian dollars - thirty pounds. For 100 tablets... 20 micrograms... branded Tertroxin.

I believe, but could be wrong, that Tertroxin is good old Mercury Pharma liothyronine, still made (under contract) by MP, and distributed through Aspen (at least in South Africa). Possibly a different company in Australia?

It hurts even more that their home country (until Concordia came along) are being gouged to the incredible degree that we are.

For as long as I am able, I shall do what I can NEVER to be dispensed or buy any products of Concordia.

[Clutter in reply to helvella]

Helvella,

I did notice and was struck by the price difference. I imagine that Australia has some kind of policy in place to prevent the likes of Concordia price gouging. I'm prescribed MP T3. I would happily try a cheaper European substitute if asked but I'm not putting my head above the parapet and raising the subject with my practice, the suggestion would have to come from them.

[helvella Administrator Thyroid UK in reply to Clutter]

If Australia can manage to have such a policy, why can't we?

[Clutter in reply to helvella]

Helvella,

I don't know that Australia has price capping I imagine that is now being investigated in the UK. Shameful how a government funded bodies like Dept of Health and NHS tolerated such rip offs for so long on a number of drugs, not just T3, and dealt with it by withdrawing the drugs from patients

[helvella Administrator Thyroid UK in reply to Clutter]

So, so agree.

[dizzy864]

What makes me particularly angry is the post code lottery we have here in the U.K. when it comes to life saving medications and operations.

This post makes me realize how lucky I've been. After ten years on Pharma T3 I became allergic to something in it. It did take four or five very stressful months and a visit to an endo but eventually my GP agreed to prescribe American T3 for me. It was very difficult at first for my local Tesco to obtain supplies for me. The first few prescriptions took them three months to fill. But now it comes through within a few weeks.

It should be the same over all of the U.K.