And that's a wrap for the T3 : So new GP has... - Thyroid UK

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And that's a wrap for the T3

Jodiedebs profile image
13 Replies

So new GP has refused to prescribe my T3 prescribed by the previous endo and previous GP apparently its too expensive and T4 just the job even though I don't convert ... back to private sourcing after 4 years on prescription

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“I am writing with regard to your medication, specifically T3. I received a

message about capsules and / or tablets. However, we do not usually prescribe T3 on the NHS in Cornwall. It is a specialist only medication, and the advice of our local specialists is that there is no good evidence that it is more effective than levothyroxine, and as you will know it costs many many times more to prescribe. In a publicly funded NHS we cannot justify such an cost, which will

come at the expense of other services. I believe that there are private clinics who

will prescribe and monitor treatment with T3 for you, at a cost, but you would need to do some research to find out where the

nearest one is. I am sorry that we cannot accommodate

your request.”

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Jodiedebs
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13 Replies
TiggerMe profile image
TiggerMe

You'll need to remove names or this will get the chop

This is massively frustrating and seems to be a Cornwall directive

TiggerMe profile image
TiggerMe in reply to TiggerMe

Are you confident enough to self source? The upside is no more jumping through NHS hoops 🙃 though you really need to fight them as a matter of principal!

jimh111 profile image
jimh111

You need to submit a complaint to the hospital. The NHS hates work, so making them work is the best way of changing policies. Also, point out that it will cost the NHS a lot more to treat your symptoms than prescribe liothyronine. It would also be a good idea to see your MP to ask for their help.

SlowDragon profile image
SlowDragonAdministrator

If you saw endocrinologist on NHS then you should be prescribed and annual review back with endocrinologist

If endocrinologist was private unfortunately NHS won’t prescribe

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Some are NHS

Request referral to one

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

greygoose profile image
greygoose

How ignorant! They seem to think the two are inter-changable, like it's just a matter of different brands, or something! That local 'specialist' needs some educating! So sorry this has happened to you.

pennyannie profile image
pennyannie

Hey there again -

as you know I'm also down in Cornwall and fought the ' system ' back in 2016/17 which simply exacerbated my symptoms and decided to self medicate and stay away.

I'm sorry the situation hasn't changed and as far as I'm aware the private route in Cornwall is pretty much sewn up.

Jodiedebs profile image
Jodiedebs in reply to pennyannie

Hello my lovely Iv wondered how your getting on Hope your well

pennyannie profile image
pennyannie in reply to Jodiedebs

I'm doing ok thank you -

have you checked your new surgery out to see if they are currently prescribing T3 or NDT for that matter, to any patients - if they are it might just be a lever to force the issue -

it didn't help me - but I wasn't well enough to even face more confrontation and just told

' well these patients were already on this medication when they relocated to Cornwall and now in Care Homes - so you wouldn't want us to stop medications to the elderly would you ' -

at the time I was around age 70 and just trying to fend for myself !!

Anyway try openprescribing.net and then go into analyse - and use Liothyronine for T3 or Armour for NDT as the so called drugs :

Star13 profile image
Star13

It seems to me that in Cornwall they are assuming that patients want a two tier system and can afford private treatment. What they are forgetting is that once you go down that route they have “approved”, even pushed you into taking an unsupervised medication which won’t be on your records and your not obliged to inform them either. If anything should happen to you and your unable to communicate your current medications if needed, it would be their fault that they have lost control of your medical care!

Perhaps this is something worth pointing out to your MP for the cost of £65.

Sparklingsunshine profile image
Sparklingsunshine in reply to Star13

Exactly, I take LDN and T3, both sourced privately. I've no intention of telling my GP. I asked the NHS for LDN and was told no way, so I dont feel the need to keep them in the loop. My body, my choices.

DippyDame profile image
DippyDame

If these naysayers were struck down with a condition caused by low (cellular) T3 they might soon find/ recognise the evidence to support dosing with exogenous T3.

They treat us as if we are unreliable witnesses to our own condition when infact we are the proof that for some forms/causes of hypothyroidism, T3, in a therapeutic dose is the answer.

The problem appears to be that the majority of hypothyroid patients respond well to LT4 treatment and the remainer are seen as being non compliant or neurotic!

In a publicly funded NHS we cannot justify such an cost, which will come at the expense of other services.

This argument has more holes in it than a sieve! Hugely expensive treatments are offered on the NHS yet T3, which in extremis is a life saving treatment, is refused on those grounds. We are not treated on a level playing field.

This attitude is tantemount to telling us we are not worth the cost of the treatment. That is not the principle on which the NHS was founded.

It is telling that this endo ( and all the rest) cannot prescribe T3 but is happy to suggest going down the private route.

This is a scandal of monumental proportion yet in the 21st century when science has made enormous strides those of us who need it are denied the one treatment that helps relieve us from a life of misery.

Liothyronine may be a cost to the NHS but that is infinitesimal compared to the cost of treating and financially supporting patients who present with the numerous conditions resulting from low cellular T3.

I need high dose T3 to function. I suffered for decades before I discovered this, and when I eventually did so, the one endo I saw told me that I didn't need T3 and didn't have a form of Thyroid Hormone Resistance. He was wrong on both counts!

I quickly gave up hope of NHS treatment and the safety net the NHS should provide, and have self medicated for a number of years.

We know this lack of treatment is wrong but we hit a brick wall everytime the subject is raised. We are up against the force of political, financial and medical power....and ignorance!

Jodiedebs ...it truly is madness that you have had this experience

Rant over!!

Jodiedebs profile image
Jodiedebs in reply to DippyDame

I love your passion , this makes me smile , thankyou for your understanding and making me feel better than any GP ever could , God bless you x

jimh111 profile image
jimh111

if you have to buy your liothyronine privately write a letter stating that you have been forced to go the private route, you take x mcg daily and you need it. They forward the letter to your surgery with a request it is added to your medical record. This is important in case you are e.g. admitted to hospital.

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