T3 being stopped by Dr's surgery, as to expensive.

[angiew2101]

I had a phone call to say they are stopping T3 as it is to expensive, and there is no evidence that it helps, I have 2 months supply left, and I'm worried how this is going to effect me when I have finished them, has anyone else come off T3 and how did it effect them.

[angiew2101]

Sorry meant to say have been on 100mg of T4, 20mg of T3 for the last 5 years and have felt well on this.

[Jazzw in reply to angiew2101]

So there *is* evidence it helps. It's helped *you*.

Honestly, I wouldn't go along with this idea quietly. You need to kick up a fuss (sorry, I know most of us hate having to do that). Cost should have nothing to do with it. If you'd been left to languish on T4 only for the last few years you'd probably have cost them way more than the money they spend on Liothyronine for you. Plus it's hardly your fault that liothyronine costs so much in the UK when it can be bought over the counter without a prescription in Greece and Turkey for a couple of quid! The fact that the NHS allows itself to be held to ransom by drug companies is not your fault.

Don't do it. We've had many many members here over the years who've been forced off medicine that worked for them and regretted it bitterly.

[rubyred in reply to angiew2101]

Hi angiew2101, when I read your post I can only Imagine the shock that must have set in after the call then I asume there was panic. I don't have the answer other than I expect at some point to receive the same call. My answer to my GP will be well I will self medicate. Wishing you luck. X

[gabkad]

angie, pending sorting this out at your end, maybe ask people to PM you on how to get T3 from abroad. Most certainly you don't want to be left in a vulnerable situation of having no T3 at hand. Just your personal secret stash, of course. Don't have to volunteer information to the doctor, of course.

[angiew2101 in reply to gabkad]

Thank you

[angiew2101 in reply to gabkad]

Thank you, I think I will do that, have not got the energy to have another battle with the Dr's.

[Aurealis]

Does this mean they're ignoring the advice of your Endo. Ask Endo for copies of all letters sent to GP then you can challenge them

[angiew2101 in reply to Aurealis]

Endo not interested, he only give me T3 to shut me up I think. He just says my TSH levels are low, and thinks I should reduce T3, When I see him on my yearly visit, O explain that TSH levels are suppressed when someone is on T3, he says ok, and off I go on my merry way.

Dr's have said I can fund the £4000 a year that comes out of the practice funding, and they will do it privately!!!

[lidoplace in reply to angiew2101]

Hi angie

What does your last sentence mean? On the face of it seems highly hypocritical but have no idea if I've understood it. Privately you need it but with NHS you don't? Where are they coming from!

[shaws Administrator]

The MHRA state that it doesn't matter how much a medication costs if the doctor thinks you would benefit. After all, there is no other licenced T3 in the UK - they often have issues with it's supply. plus complaints re some batches.

GP says there is no 'proof'. Of course there is there is you and me for a start plus many on the forum. Has your GP taken your Free T3 before you went on T3 - probably not. Plus

thyroiduk.org.uk/tuk/resear...

This is an excerpt is from Hormone Restoration:

The resulting treatment TSH levels were often undetectable and the free T4 higher than usual. Only

the free T3 corresponded well with the untreated range and with clinical effects. In spite of these facts, this grossly insensitive, ineffective TSH based diagnos is and treatment scheme remains

“standard practice”. In my experience, patients on TSH-normalizing levothyroxine doses often

remain highly symptomatic and have rather low free T3 and free T4 levels. They routinely respond well to T4/T3 optimization that leaves the TSH suppressed. Doctors fear giving TSH-suppressing doses because they will be accused of overtreating the patient. They also fear being sued if the

patient develops atrial fibrillation or bone loss.These are underlying medical conditions that are

exacerbated by any increase in thyroid levels — from hypothyroid to hyperthyroid.

The solution is not to leave everyone hypothyroid, but to treat the underlying problem.

Effective thyroidology requires leadership that is now conspicuously absent. Since theTSH cannot be used for diagnosis or for treatment, the physician must order free T4 and free T3 levels.

However, their reference ranges are contaminated by the “Immaculate TSH” doctrine. To save

time and money, laboratories (at least in the US) include physician -ordered thyroid tests

in their reference ranges – if the TSH is normal. So untreated and treated hypothyroid patients

are included and resulting free T4 ranges have lower limits of only 0.6 or 0.8ng/dl (7.7 or 0.3pmol/L)

and upper limits of 1.8 -2.2ng/dl!

With these low ranges, persons with both a low-normal free T4 and free T3 can be extremely hypothyroid.

Rigorous studies of adult non-patients, without screening for symptoms, yield a narrower 95%

- inclusive free T4 range of 1.0 to 1.6ng/dl (12.9 – 20.6 pmol/L)

However, even this tighter free T4 range is still just an arbitrary statistical treatment of a group of unscreened adults.

Persons differ in their need for thyroid hormone

hormonerestoration.com/file...

You can run off the whole report which was given to the Scottish Parliament dealing with the guidelines of the British Thyroid Association that nothing other than levo must be prescribed.

If your doctor is willing, he can prescribe Cytomel T3 or Paddock T3 who also make it on a named patient basis.

See link below and click on Non Uk synthetic liothyronine for info otherwise you'll have no option but to contact your MP about the withdrawal of your T3.

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

[angiew2101 in reply to shaws]

Thank you.

[shaws Administrator]

There is also a new Research Paper which has been published and if you want a copy email [e-mail] and ask for it. This is the info:

healthunlocked.com/thyroidu...

[angiew2101 in reply to shaws]

Thank you

[Framboise]

Is it your GPs who have decided it's too expensive or is it the CCG? I think that's important to find out because if it's the CCG and your GPs have been happy to prescribe until now then you can ask them to put in an individual funding request to the CCG for it to be prescribed in the future. If you go to your CCG's website there should be a page about this.

[angiew2101]

Thank you, will see if I can find out.

[galathea]

My doctor informed me they were stopping the t3 I get on prescription... I caused a fuss at the reception, and my doc agreed to call the ccg. They said as I had been stable on it for years they would continue to fund it. Appeal to your ccg. ( I don't cash in my prescriptions because I self fund NDT, but its my insurance in case the NDT supplies run out)

Xx

[penny]

The cost to the nhs is ridiculous. I can buy T3 for £3.99, 100 tablets of 25mcg. (+ p&p).

My GP stopped mine suddenly and so I had no choice but to self-medicate.